MDF Magazine Issue 62 7 August 2020 (7)

chikadee

Summer Issue 62

August 2020

MDF merchandise


Medical Suppliers

Ck1994/25078/23


05 MDF notice board

06 National news

10 MD information

MD INFORMATION

10 How to Clean a Wheelchair or Power Chair

12 How to Dress to Impress with Adaptive Clothing

15 It is essential that you keep your batteries charged

16 Wheelchair Maintenance Checklist

18 Marijuana and Muscular Dystrophy

FUNDRAISING CAMPAIGNS

24 Sunny side up

26 Online Quiz

25 Move4MD

27 MDF merchandise

People

28 Living with Muscular Dystrophy - Paul & Carly’s Stories

30 'Lucky' Hoffmann motivated by his muscular dystrophy

32 High-School Track Athlete with Myotonic Dystrophy

Regular Features

38 The View From Down Here

41 DOCTOR’S CORNER

42 On The Spot, Scott…

43 Kiddies Corner

44 Random gravity checks

46 Sandra’s thoughts on...

Healthy Living

48 Holistic Treatment for Symptoms of Muscular Dystrophy

50 The power of resilience

51 Breathing Problems

52 7 Low Moments we’ll Experience during COVID-19

54 Winter Safety & Bone Health

Research

34 What research is being done?

37 Breaking news in research

C O N T E N T S

Published by:

Muscular Dystrophy Foundation of SA

Tel: 011 472-9703

Fax: 086 646 9117

E-mail: national@mdsa.org.za

Website: www.mdsa.org.za

Publishing Team:

Managing Editor: Gerda Brown

Copy Editor: Keith Richmond

Publishing Manager: Gerda Brown

Design and Layout: Divan Joubert

Cover photo of Rudzani Mukheli.

Future Issues:

December 2020

(Deadline: 2 November 2020)

The Muscular Dystrophy Foundation

of South Africa

We are a non-profi t organisation that supports

people affected by muscular dystrophy and

neuromuscular disorders and that endeavours to

improve the quality of life of its members.


From The

In March 2020, the World Health Organization (WHO) declared Coronavirus

disease (COVID-19) a pandemic. Infectious disease outbreaks such as

COVID-19 can cause emotional distress and anxiety. While the main threat posed by

COVID-19 is to people’s physical health, the pandemic is also taking its toll on

economies, social and cultural activities, and people’s mental health. These

feelings of distress and anxiety can occur even in people not at high risk of getting

sick.

As a social worker, I think there’s going to be intense feelings of depression and

stress due to the lockdown and even after as we deal with the aftereffects of the

economic meltdown. People’s feelings are intensifi ed to the extremes at the

moment, especially because of the uncertainty of what’s going to happen. These

feelings are “normal” given our current situation but it is so important not to dwell

too long in this state. Read our articles about “When life gives you lemons make

lemonade”, “The power of resilience” and “7 Low Moments we’ll Experience

during COVID-19 (& How to Deal with Them)” for some helpful tips to get you

through this difficult time.

In this issue you can also read about how to properly care for your disability equipment, breaking news in research

and stories from people around the world about how they deal with their diagnosis of muscular dystrophy.

As always, you will also fi nd inspirational articles in our regular features as well as what the Foundation has been

up to in the last couple of months.

In order to keep you, our readers, interested and updated, we will continue to share information and stories of

interest with you. I would like to invite you to share your stories and let us know what you would like to read about

in the magazine.

jusqu'à la prochaine fois… (until next time)

Regards

Gerda Brown

DATABASE UPDATE

An appeal is made to all members to update their contact details, i.e. telephone number, residential

address and email address.

Please send your updates to:

• National offi ce: gmnational@mdsa.org.za

• Gauteng branch: rabie@mdsa.org.za

• Cape branch: capemanager@mdsa.org.za

• KZN branch: accountskzn@mdsa.org.za.

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Subscription and contributions to

the magazine

We publish three issues of MDF

Magazine a year and you can subscribe

online to the magazine or by calling

your nearest branch.

If you have any feedback on our

publications, please contact the

National Office by e-mail at

gmnational@mdsa.org.za or

call 011 472-9703.

Get all the latest news on the fight

against muscle-wasting conditions and

the latest research updates. It is our

editorial policy to report on

developments regarding the different

types of dystrophy but we do not

thereby endorse any of the drugs,

procedures or treatments discussed.

Please consult with your own physician

about any medical interventions.

If you are interested in sharing your

inspirational stories, please let us know

and we'll be in touch to discuss this

with you. The Foundation would love

to hear from affected members, friends,

family, doctors, researchers or anyone

interested in contributing to the

magazine. Articles may be edited for

space and clarity.

MDF SA database

If you know people affected by

muscular dystrophy or neuromuscular

disorders who are not members, please

ask them to contact us so that we can

register them on our database. If we do

not have your current e-mail and postal

address, please contact your branch so

that we can update your details on our

database.

How can you help?

Contact the National Office or your

nearest branch of the Muscular

Dystrophy Foundation of South

Africa to find out how you can help

with fundraising events for those

affected with muscular dystrophy.

Fundraising

Crossbow Marketing Consultants (Pty)

Ltd are doing invaluable work through

the selling of annual forward planners.

These products can be ordered from

Crossbow on 021 700-6500. For

enquiries contact the National Office by

e-mail at gmnational@mdsa.org.za or

call 011 472-9703.

MDF ::

MDF support information

For more information about the Muscular Dystrophy Foundation, the benefits of

being a member and details on how to become a member, call your nearest branch..

NATIONAL OFFICE

E-mail: gmnational@mdsa.org.za

Website: www.mdsa.org.za

Tel: 011 472-9703

Address: 12 Botes Street, Florida Park,

1709

Banking details: Nedbank, current

account no. 1958502049,

branch code 198765

CAPE BRANCH (Western Cape,

Northern Cape & part of Eastern

Cape)

E-mail: cape@mdsa.org.za

Tel: 021 592-7306

Fax: 086 535 1387

Address: 3 Wiener Street, Goodwood,

7460

Banking details: Nedbank, current

account no. 2011007631,

branch code 101109

GAUTENG BRANCH (Gauteng,

Free State, Mpumalanga, Limpopo

& North West)

E-mail: gauteng@mdsa.org.za

Website: www.mdfgauteng.org

Website: www.muscleriders.co.za

Tel: 011 472-9824

Fax: 086 646 9118

Address: 12 Botes Street, Florida Park,

1709

Banking details: Nedbank, current

account no. 1958323284,

branch code 192841

Pretoria Office

E-mail: swpta@mdsa.org.za

Tel: 012 323-4462

Address: 8 Dr Savage Road, Prinshof,

Pretoria

KZN BRANCH (KZN & part of

Eastern Cape)

E-mail: kzn@mdsa.org.za

Tel: 031 332-0211

Address: Office 7, 24 Somtseu Road,

Durban, 4000

Banking details: Nedbank, current

account no. 1069431362, branch

code 198765

General MD Information

Cape Town

Lee Leith

Tel: 021 794-5737

E-mail: leeleith@mweb.co.za

Gauteng

Rabie Modisane

Tel: 011 472-9824

E-mail: rabie@mdsa.org.za

Duchenne MD

Cape

Win van der Berg (Support Group)

Tel: 021 557-1423

Gauteng

Jan Ferreira (Support Group –

Pretoria)

Cell: 084 702 5290

Estelle Fichardt

Tel: 012 667-6806

Christine Winslow

Cell: 082 608 4820

Charcot Marie Tooth (CMT)

Hettie Woehler

Cell: 079 885 2512

E-mail: hettie.woehler@gmail.com

Facioscapulohumeral (FSHD)

Francois Honiball

Tel: 012 664-3651

Barry Snow

Cell: 083 66 66 270

E-mail: barry.snow@worleyparsons.

com

Friedreich Ataxia (FA)

Linda Pryke

Cell no: 084 405 1169

Nemaline Myopathy

Adri Haxton

Tel: 011 802-7985

Spinal Muscular Atrophy (SMA)

Zeta Starograd

Tel: 011 640-1531

Lucie Swanepoel

Tel: 017 683-0287

Congenital Muscular Dystrophy

Hanti van Eyk

Tel: 082 792 2054

Doné van Eyk

Tel: 072 598 1163

General Support Group Gauteng

East Rand

Zigi Kerstholt

Cell: 082 499 9384

E-mail: z.kerstholt@gmail.com

5


National

Donate in a

snap

MDFSA now has a Snapcode to make

donating easier!

SnapScan is a payment app that can be downloaded, for

free, onto your smartphone. You can make quick and

easy payments from your mobile phone, eliminating the

need to carry cash or cards.

How do you use SnapScan?

• Use the app to pay wherever you see a Snapcode

displayed.

• Just scan the code, enter the amount and make your

payment in a snap.

SnapScan uses a patented security model that ensures

that all transactions and information exchanges are safe

and secure.

Rovos Rail Raffle

The Foundation was fortunate enough during 2019 to have

Rovos Rail donate tickets for a one-way trip for two people

sharing a deluxe suite on a Cape Town to Pretoria trip or vice

versa, valid until 30 September 2020. The lucky winner was

Brandon Robertson from Johannesburg.

Unfortunately, due to the alert levels put in place to manage the

COVID-19 pandemic, the train is not operating presently. As

soon as our winner has gone on this wonderful adventure, we

will share his experience with you.

Thank you Rovos Rail for this fantastic

donation.

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MUSCULAR DYSTROPHY FOUNDATION OF SOUTH AFRICA

ANNUAL GENERAL MEETING

Dear Sir/Madam,

Notice is hereby given of the Annual General Meeting of the Muscular Dystrophy Foundation to be

held on Saturday, 26 September 2020 at the following venues:

• Cape Branch – 3 Wiener Street, Goodwood

• Gauteng Branch / National Office –12 Botes Street, Florida Park, Roodepoort

• KwaZulu-Natal Branch –Office 7, 24 Somtseu Road, Durban

The national AGM will be held via skype after the branch AGMs. Please remain at the

abovementioned venues.

RSVP: Please let the relevant branch know by 14:00, Monday, 14 September 2020 if you are coming,

so that we may arrange refreshments.

• Cape Branch: 021 592-7306

• Gauteng Branch: 011 472-9824

• KwaZulu-Natal Branch: 031 332-0211

If you are not able to attend the AGM, please nominate a proxy on the form below. Kindly post or

email the completed form to the relevant branch.

• Cape Branch: 3 Wiener Street, Goodwood, 7460 or email Dianne at

capemanager@mdsa.org.za

• Gauteng Branch: PO Box 605, Florida Hills, 1716 or email Robert at

mdfgauteng@mdsa.org.za

• KwaZulu-Natal Branch: PO Box 510, Durban, 4000 or email Nomfundo at

accountskzn@mdsa.org.za

Registration and networking start at 9:30 and the meeting starts at 10:00. Please remain for the

national AGM at the National Office at 12:00, which will be conducted via Skype. Reviews of the

year’s activities will be discussed and the audited financial statements will be available for perusal. A

new executive committee will also be elected. You are cordially invited to nominate new members in

the space provided on the proxy form. Kindly post or email the completed form to the relevant

branch.

The previous minutes and the audited financial statements will be available on request from our

offices. Should you require any further information, please contact the relevant branch.

We are looking forward to see you at the AGM!

MDFSA Executive Committee


I/We will be attending the Annual General Meeting on Saturday, 26 September 2020.

Name:

Number of people attending:

Dietary requirements:

Nominees for Executive Committee:

________________________________________________

________________________________________________

________________________________________________

________________________________________________

________________________________________________

________________________________________________

If you are unable to attend, please fill in the following section:

PROXY FORM

I, …………………………………………………………………………., of ………………………………………………………………………,

being a Member of the FOUNDATION, hereby appoint ……………………………………………………………………,

of ………………………………………………………………………, or failing him/her, the Chairperson at the said

meeting, as my proxy to vote for me and on my behalf at the Annual General Meeting of the

FOUNDATION to be held on 26 September 2020 and at any adjournment thereof.

Unless otherwise instructed, my proxy may vote as he/she thinks fit.

Name:

Signature:

Date:

___________________________________________

___________________________________________

___________________________________________


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or Power Chair

By Vantage Mobility International

Before learning how to clean a wheelchair or power chair with this guide, it’s important to read the manufacturer’s maintenance

instructions for specific cleaning rules and any methods or materials to avoid. The following instructions are generally

applicable to every chair and will help achieve the best results.

You’ll Need:

• Disinfectant Spray (like Lysol)

• All–Purpose Cleaning Spray (like 409)

• Mild Dish Soap and Detergent

• Compressed Air Can Duster

• Microfiber Towel

• Toothbrush

• Cleaning Brush

• Wire Brush

• Vinegar

Optional:

• Non-abrasive Wax

• Tire Cleaner

• Scotchgard

Instructions for Cleaning a Power Chair:

• Unplug the power chair from its power source, and disconnect the chair from its base. Most chairs will have a lever that will

allow the chair to come off by pulling in an upward motion.

• Remove any protective cover shielding the battery. Then remove the battery from the chair to avoid damage from cleaning

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solutions.

• Use the compressed air to blow out any dust, dirt or debris in the hard-to-get-to areas near the battery region and any other

crevices in the wheelchair base.

• Spray disinfectant to the chair base and allow it to sit for 10 minutes. Be cautious not to spray the electrical areas. After 10

minutes, wipe off the chair base with a microfiber towel to avoid scratching the paint.

• Spray the same area with an all-purpose cleaning spray, then wipe clean with a microfiber towel.

• Use a toothbrush to scrub the joystick area, as well as any extra dirty spots. Be cautious to not use too much cleaner near the

electrical areas. Also use a toothbrush to scrub tire cleaner onto the wheelchair tires for an extra shine. This step is optional

but is encouraged every few months.

• Repeat steps four through six for the battery cover.

• Vacuum the seat cushion thoroughly. For vinyl, hand wash it with a mild dish detergent and warm water. For leather, spray

a solution of three-quarters vinegar, one-quarter water onto the surface and wipe clean with a rag. (Spray at least one foot

away) For fabric, mix hot water, mild dish soap and cleaning soda. Use a rag or cleaning brush to rub the solution into the

seat. Be sure to let all seat cushion types air dry before usage.

• Once sanitization of the base and cover is complete, spray once more with the compressed air can to remove any leftover

dust particles. Re-assemble all parts, and wipe away any dampness with the microfiber towel to avoid rusting or corrosion.

• Optional: Apply a layer of non-abrasive wax to the power chair’s paint to achieve long-lasting and optimal shine. (This step

is also great to do on wheelchair vans.)

• Optional: Apply a layer of Scotchgard protectant to the upholstery of the seat and back cushion to maintain fabric quality

and allow for easy stain removal in the future.

Instructions for Cleaning a Manual Wheelchair:

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• Begin disassembling the wheelchair by taking off the seat and back cushions and any other fabric components of the chair.

• Use the compressed air to spray dirt out of the wheelchair crevices and between the wheel spokes. Hair, clumps of dirt and

debris can severely impact the wheelchair’s mobility.

• Fill a bucket with warm water mixed with the mild dish soap. Soak the microfiber towel in the soapy water, wring the towel

and gently wipe every surface of the wheelchair frame. Antibacterial cleaner can also be used, but avoid using petroleumbased

cleaners or steel wool to scrub, as those materials can damage the paint.

• Use another towel (damp, but not completely soaked) to clean between the wheel spokes and around the wheel. If necessary,

unscrew the bolts and scrub them with a wire brush to remove dirt or grease build-up.

• With a clean towel, completely dry the wheelchair frame, wheels and bolts to avoid rust and corrosion. Feel free to use the

compressed air once more to ensure no dust is left behind.

• Optional: Use a tire cleaner for the chair’s wheels to increase shine.

• Optional: Apply a layer of non-abrasive auto wax to the frame every three months to achieve optimal shine and lasting quality.

• To clean the seat and back cushions, hand wash them with the mild detergent and air dry them. Unless noted by the manufacturer,

avoid machine washers and dryers, as they may damage the fabric.

• Optional: Spray the chair cushions with Scotchgard to maintain quality and make for easy stain removal in the future.

• Re-assemble the wheelchair and set a routine cleaning schedule. Weekly wipe-downs are encouraged, but more in-depth

cleanings should be carried out monthly or quarterly.

Article available at: https://www.vantagemobility.com/blog/how-to-clean-wheelchair#:~:text=Hair%2C%20

clumps%20of%20dirt%20and,surface%20of%20the%20wheelchair%20frame

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How to Dress to Impress with Adaptive

Clothing

By Vantage Mobility

What is adaptive clothing, and why is it important?

Adaptive clothing is a form of assistive technology, like

canes for walking or glasses for seeing, made specifically

for people with disabilities. There are certain distinctions in

adaptive clothing that make getting dressed easier for people

with disabilities. The options are geared toward specific

disabilities or ailments, such as magnetic buttons and slip-on

tennis shoes for people with arthritis or Parkinson’s.

Stephanie Thomas, a disability fashion stylist and founder of

Cur8able.com, says disability-friendly clothing is often times

more comfortable and in some cases, safer to wear. She also

says it gives people with disabilities the independence and

freedom to dress themselves according to their own personal

style.

But consider this:

While most able-bodied people can head into a store at

the mall and find something they like, many people in

wheelchairs cannot. Sometimes it’s because of the

difficulty in wheeling around small shops or weaving in

between people. But perhaps the most prominent reason is

there simply aren’t accessible clothing options for people

with seated body types.

Think about it:

When was the last time you saw a rack of clothes designed

for people in wheelchairs? And though this article features

several disability clothing brands, many of which can only

be accessed online, Thomas emphasizes that people with

disabilities need so many more options.

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Of the available adaptive clothing companies out there,

Thomas says there are still many styles not reflected, like

grunge, preppy and more.

Now what we need to realize is this:

If able bodies can choose any style to express themselves,

why can’t people with disabilities? To learn how to advocate

for more disability clothing options and to learn how to make

the most of your personal style right now, check out the

following tips.

5 Steps to Dressing Stylishly for People with

Disabilities

Invest in adaptive clothing, and here’s why:

• Whereas regular trousers might rise near the ankle or the

waistline might be pulled down and expose one’s backside

upon sitting, adaptive pants are specifically made to

combat those issues.

• Adaptive tops with three-quarter or full-length sleeves

have extra material near the elbow, making it more

comfortable to set arms on wheelchair armrests.

• Adaptive clothing is usually made with softer, sweat

resistant fabric that is more gentle on skin and helps

avoid skin sores.

• Adaptive clothing provides more accessible fastening

options: be it zippers in easier-to-reach areas, magnetic

buttons, or elastic materials to avoid fasteners all together,

disability-friendly clothing makes getting dressed less of a

hassle. That means you can focus on what really matters:

looking good and feeling good!

• Just remember, like a nice suit for work or a dress for a

formal event, adaptive clothing should be considered an


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investment purchase. This is apparel that caters to your

exact body type and will most likely be more expensive

than non-adaptive clothes.

Befriend a tailor

• Especially for people who are temporarily disabled or not

in a place to invest in adaptive clothing, tailors can make

great alternatives. Ask a tailor to examine your nice pieces

of clothing and see if he or she can let out some of the hems

to provide more comfort room in the creases of your body,

like your waist, knees, elbows, etc.

Understand your body shape to choose the most flattering

clothes

• Want to look taller? Thomas says wearing deep-cut shirts

will elongate the line from chin to chest and make your upper

body appear longer.

• Have narrow shoulders? Thomas says halters are an extremely

flattering option.

• Have thick, muscular arms? Sometimes spaghetti straps

can make this shape arm appear overpowering. Instead, try

tank tops with thick straps. Thomas says this option can

help balance the body.

Look for adaptive qualities in non-adaptive clothing

• Lowered pockets or pockets with zippers: For people in

wheelchairs, pockets are often useless because the content

will pour out the sides and onto the wheelchair. Find zippered

pockets or pockets near the calf area to avoid this.

• Avoid double seams or thick, itchy materials: Fabric like

this is more likely to cut into or irritate the skin. This can

later lead to skin sores and serious infections.

• Wicking material: Like athletic wear, clothes with

wicking materials are sweat resistant and will help prevent

skin sores.

• Minimal rivets: Those metal pieces, often used in denim

or as decorative material, can dig into skin and cause skin

sores and irritation.

• Conveniently placed buttons and zippers: The convenience

of a button or zipper is dependent on the person with the

disability. Consider what’s best for you when shopping.

Wear what makes you feel good

• Always choose outfits that make you feel confident. If a

friend loves a certain outfit on you but you don’t, ditch it!

You’re the one wearing it; your opinion matters the most.

*Bonus Tip: Putting outfits together in a way that looks good

and makes you feel confident is sometimes harder than it

sounds. Men or women who struggle to curate a stylish wardrobe

should consider hiring a personal stylist, like Thomas,

to help them get started. Sometimes it just takes a peer’s help

and advice to get the fashion ball rolling.

Disability-Friendly Apparel for People with

Disabilities– via cur8able.com

• Nike (HyperAdapt 1.0 shoe available holiday season

2016)

• ABL Denim

• Able 2 Wear

• Ag apparel

• Brt Adaptive

• Chairmelotte

• Disabled Gear

• Downs Designs

• Endless Abilities Jeans

• IZ Adaptive

• Kathy D Woods

• Koolway Sports

• LegaWear

• Liz & Ett

• MagnaReady

• Rackety’s

• Rolling Elephants

• Rolli Moden

• Rollitex

• Rollin’ Wear

• Ross Daniel Adaptive Apparel

• Simple Closures

• Shoes of Prey

• USA Jeans

• WheelieChix-Chic

*Check out Cur8able.com for discount codes to some of the

above-mentioned brands.

How to Advocate for more Disability-Friendly Fashion Options

Social media

• Use Twitter, Instagram, Facebook and even Snapchat to

reach out directly to your favorite companies and ask for

more adaptive clothing options.

Send an email to customer service

• Not a social media person? Search the company’s website

and contact them via email or online forum. Remember,

Thomas says, “Your money is green.” You have buying

power, and because of that, companies should want to

serve you. You just have to let them know you’re there.

Be consistent; start a coalition of like minded friends

• Chances are, you’re going to feel like a needle in a haystack

reaching out to giant clothing companies if you’re alone.

Don’t let that discourage you. Find a group of like-minded

individuals and make plans to send dozens of messages to

these companies. The more people asking for change, the

more likely it is to occur.

Article available at: https://www.vantagemobility.

com/blog/dress-stylish-adaptive-clothing

• Tommy Hilfiger’s Runway of Dreams Line ( a kids

collection)

13



MD

It is essential that you keep

your batteries charged

By Electric Mobility

Right now, we as a nation are spending considerably

more time at home due to the advice and regulations

set by the Government, to tackle the Global Pandemic

of Covid-19.

Those who can are working from home, staying home,

and having limited exposure to the outside world in a bid

to collectively avoid unnecessary strain on the NHS and

to attempt to avoid infection.

While right now you may not be able to use your […]

Scooter or Powerchair to aid independence like you

once did, you will again and so it is important to ensure

when you come to rely on it as your outdoor mode of

transport, that it is in full working order to ensure the

maximum scooter or powerchair performance.

Regular usage and charging of the batteries increase

the longevity of the battery lifespan (just like a car)

and inactivity can half the expected lifespan of your

scooter or powerchair battery! Continue to charge your

[…] Scooter or Powerchair batteries on a semi-regular

basis so they don’t drain during this period of inactivity.

• Never let the charge fully drain or reach below 20%

• Charge for up to 12 hours (this may vary, read the

Owner Manual)

• Must be charged once per month minimum, we

recommend once a week if possible

The charger supplied with your mobility equipment

should fully charge your batteries overnight. Overcharging

is not a problem with today’s smart chargers as they

are voltage limited and shut off automatically. Always

use the correct charger with the correct batteries.

Chronic undercharging is a common cause of

sulfation and reduction in capacity, shorter run times

and premature battery failure. Daily charging for the

longest number of consecutive hours possible is

required. Minimum charge time of 8 hours is

recommended to return 80% of the capacity of the

battery. To return 100% of the battery’s capacity,

additional charge time may be required. To gain

lost capacity due to chronic undercharging and to

enhance battery life, it is recommended that up to a 12-

hour charge be performed at least once each week if

possible.

Electric Mobility highly recommend that you read

and follow the instructions given in the Battery

Charging Information section in the Product Owner

Manual. The amount of time to fully charge the battery

may range between 8 -16 hours depending on the type

of scooter or powerchair.

Article available at: https://www.electricmobility.co.uk/story/2020/05/20/it-is-essential-thatyou-keep-your-batteries-charged/208/

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Wheelchair Maintenance Checklist

Arms

• Armrests – Check to make sure that the screws are not poking

through the arm padding. Also, check for dangerous

burrs or sharp edges on the heads of the screws.

• Detachable Arms – Make sure that the arms are not overly

tightened, yet still secure.

• Adjustable-height Arms – Make sure arms adjust, lock into

place and fit properly.

• Arm locks – Check that the locks fully engage.

• Side Panels – Check that panel fasteners are tightened and

that there are no sharp edges on the panels.

Back

• Check all materials for rips and tears. Materials should all

fit with the same tightness; areas should not be loose while

others are tight. Check the nuts and bolts to be sure they are

tight.

• Make sure all hardware is present, fully tightened and installed

through the correct reinforcing strips.

• Check the back brace joints for cracks, bends and other

damage.

• Handgrips should be tight and secure; they should not rotate

on the posts.

• Check the Safety Belts for fraying or damage.

• Headrests should function properly.

• Check all adjustments to reclining backs, be sure they work

correctly.

By The Eunice Kennedy Shriver Center

University of Massachusetts Medical School

Spreader-bar Assembly - Check for loose hardware. Look

for damage to folding linkage.

• Hinged-back Assembly - Check the slide lock to be sure

it works. Check all hardware to be sure it is present and

snug.

Seat, Cross Braces, And Frame

• Check that the seat material is snug on the frame and that

there are no rips or tears.

• Check for stripped screws and sharp edges on screw

heads.

• Check that carrying straps are not worn or frayed.

• Check for sticking cross braces by folding the chair.

• Sight down seat rails, checking for cracks and bends.

• Check that the center pin nut (connects the two cross-braces)

is secure.

• Front Post Slides - Fold the chair and sight down both

posts, checking for straightness and roundness. While

opening the chair, check that the posts do not rub or hit the

caster forks. Fold the chair once again, checking that the

posts do not come out of the sockets.

• Seat Rail-guides - Check that guides are present. Open the

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chair and make sure the seat rails firmly fit into the guides.

• Check that all four wheels are touching the ground evenly,

if not there may be a failing weld or the frame may be

bent.

Wheel Locks

• Tire Pressure – Check tire pressure before checking the

wheel locks.

• Locks – each should securely engage the tire surface preventing

the wheel from moving.

• Rubber Tips – should be present on wheel locks and not be

cracked or split.

Large Wheels

• Check the wheels for trueness (making sure the wheels spin

straight, without wobbling)

• Pluck the spokes, checking for equal tightness, and making

sure there are no spokes missing.

• Check the wheel for side play. Side play indicates the need

for adjustment or new bearings.

• Check for tire wear. • Check that there are no gaps between

tires and rims.

• Pneumatic Tires - Check for wear, cracks and tire pressure.

• Axles and Axle-lock Nuts – If removing the wheels, make

sure axle threads are in good condition, check bushings for

wear and make sure nuts are not rounded.

• Quick release Axles – While pushing the plunger pin in, the

ball bearings at the other end should be loose and recessed.

After releasing the plunger pin, the ball bearings should appear

raised.

• Check that the hub caps are properly in place.

• Check that there is not a large amount of grease leaking

from around the wheel axles or joints.

• Spin the wheels and make sure they turn easily and without

a grinding sound, indicating damaged bearings.

• Hand rims and Attaching Hardware - Check hand rims for

sharp edges. Check that the rims are securely attached.

Check for missing hardware and that there are no cracks on

anything.

• Axle Plates – Check that the plates are secure. If there is

camber or toe adjustment, make sure the washer configuration

is the same on both sides.

• Axle Sleeves – Check that the distances on the front and

rear axle sleeves are the same.

Casters

• Forks and Retaining Mechanism - check for bending on the

sides and the stem. Be sure stem is firmly attached to fork.

Check threads and locking nut or retaining ring.

• Stem Bearings - check for excessive play in all directions,

the casters should not flutter at high speeds.

• Wheels and Bearings - check for excessive wobble in

bearings. Check axle and nut for stripping. Check that felt

washers and/or string guards are present.

• Tires - Check for excessive tire wear and verify that the

tire is secured on rim. Check and adjust the pressure on the

tires as needed.

• Caster Housing - Select a level surface and roll-check

chair. If chair veers more than a foot in a ten-foot distance,

check frame for damage. Check alignment of housing on

frame. Check fork and stem for bent condition.

• Check that there is not a large amount of grease leaking

from around the wheel axles or joints.

• Spin the wheels, making sure they spin easily, without a

grinding sound. A grinding noise indicates damaged bearings.

Also, make sure the casters spin freely.

Footrest and Leg Rest (Front Rigging)

• Engage the Lock Mechanism and make sure it functions

properly.

• Look out for excessive wear anywhere in the mechanism.

• Footplates should not contain any sharp edges and should

hold at any position.

• Check for damage and proper function of the footrest

length-adjustment mechanism.

• The leg rest panels should not contain any sharp edges.

Check that all hardware is present and check for wear in

the leg rest panels.

• The leg rest adjustment rod should not have any scratches

or it will not function properly. Check for all hardware and

make sure it functions properly.

• Foot rest bumpers should be intact and not excessively

worn.

Article available at: https://shriver.umassmed.edu/sites/

shriver.umassmed.edu/files/DDS%20Wheelchair%20

checklist.pdf

17


MD

MDFSA does not advocate the use of marijuana. The facts below are shared

for informational purposes. The use of marijuana is a personal choice – Ed.

By Marijuana Doctors

(Medical content reviewed on 1 April 2020 by Dr Joseph Rosado, Chief Medical Officer for

Marijuana Doctors)

What Is Muscular Dystrophy?

Muscular dystrophy encompasses an entire group of more than 30 inherited disorders, all of which cause the loss

of skeletal muscle tissue and accompanying muscle weakness. Unfortunately, all of the disorders that make up

the muscular dystrophy, or MD, group are known to degenerate, or get worse over time. As a result, keeping the

patient comfortable and as pain-free as possible is often one of the most prominent treatment goals.

[…] There are nine different types of MD that vary in their onset and severity. They are all caused by a genetic

defect and are all degenerative:

1. Myotonic

Most common form of MD for adults that is caused by a repeat in their genetic code.

• Common Symptoms: Weight loss, frontal baldness, drowsiness, infertility, difficulty swallowing, vision problems,

long thin face and neck, coronary issues that could become fatal before age 50

• Progression: Develops in men and women from 20 to 30 years of age.

2. Duchenne

Accounting for more than 50% of cases, Duchenne is the most severe form of MD affecting children.

• Common Symptoms: Weakness in the pelvis and upper legs, diffi culty running and jumping, waddle gait, fat

accumulation in calf muscles, fall down a lot

• Progression: A fast progression in boys from age three and is usually non-ambulatory by age 12. The life

expectancy is approximately 20 years.

3. Becker

Similar in nature to Duchenne, Becker MD can move quickly or slowly.

• Common Symptoms: Difficulty getting up from the fl oor, frequent muscle cramps, walking on tiptoes, falling down

a lot

• Progression: Boys between 11 and 25 can begin to show symptoms, and it is often non-ambulatory by the

mid-thirties or later.

18


MD

4. Limb-Girdle

Both boys and girls can inherit the defective gene from either parent or, in more severe cases, the same genetic

defect from both parents.

• Common Symptoms: Fall down a lot, develop hip weakness that spreads to shoulders, legs and neck, waddle

gait, rigid spine, diffi culty climbing stairs

• Progression: Usually presents in young adults and progresses to severe symptoms within the next 20 years.

5. Facioscapulohumeral

This form of MD affects the face, shoulders and upper arms, although the exact gene that causes it is not known.

• Common Symptoms: Difficulty closing and opening eyes, trouble smiling or puckering, bicep and tricep refl ex

impairment, hearing problems, lordosis curve of the spine, muscle wasting around shoulders

• Progression: Both boys and girls are affected in their teens. The life span is normal, but symptoms can be

debilitating.

6. Congenital

Most often caused by a genetic defect in muscle fi ber proteins but can sometimes affect the central nervous

system.

• Common Symptoms: Scoliosis (curvature of the spine), muscle shortening that stiffens joints, difficulty with

muscle control from birth, feet deformities, intellectual disabilities, trouble breathing and swallowing

• Progression: Evident by age two in boys and girls. Ambulation may never occur, but death is possible in infancy.

7. Oculopharyngeal

This form of MD is common in specifi c ethnic groups including French-Canadian, Jewish Ashkenazi and Hispanics

from the southwestern United States.

• Common Symptoms: Heart problems, drooping eyelids, muscle wasting in shoulders and neck, trouble

swallowing

• Progression: Symptoms usually reveal before age 60 and progress slowly. Some become non-ambulatory.

8. Distal

Distal MD can present in men and women, and it affects the forearms, lower legs, hands and feet.

• Common Symptoms: Trouble extending fi ngers, difficulty hopping or standing on heels, inability to climb stairs

without difficulty, trouble forming hand gestures

• Progression: Usually presents between ages 40 to 60. Progression is slow but could eventually result in the need

for a ventilator.

9. Emery-Dreifuss

This MD variation is caused by a defect in the proteins surrounding cell nucleus, and it affects boys primarily.

• Common Symptoms: Elbows may lock in a fl exed position, shoulder deteriorates, walk on tiptoes, rigid spine,

facial muscle weakness, chronic muscle shortening in back of neck, ankles, knees, elbows or spine

• Progression: Symptoms often present by age ten. Heart problems occur in late 20s, and death from pulmonary

or cardiac failure is likely in middle age.

MD is considered a rare disease by the National Institutes of Health because it affects fewer than 200,000 people

in the US population. Each year, between 500 and 600 male infants are diagnosed with MD, putting the incidence

rate at approximately one in every 544,000. For the thousands who suffer, MD is a debilitating and potentially fatal

condition.

Treatment for Muscular Dystrophy

MD itself does not typically cause severe pain; however, secondary chronic pain associated with the disorders is

estimated to affect two-thirds of the sufferers. Pain is caused by muscle cramps or spasms as well as stiff joints,

pressure sores and muscle twitches. While traditional treatments such as physical therapy, heat application and

exercise can alleviate some of the pain associated with MD, narcotic pain medication is often required at some

point.

19


MD

Opiates, the group of pain medications typically prescribed for suffers of chronic pain, can help to alleviate pain;

however, they also come at a high cost. Side effects of opiate based medications can be severe and dangerous.

Aside from the risk of addiction, opiate based pain medications can also cause severe constipation, dizziness,

drowsiness, respiratory depression, nausea, vomiting, difficulty urinating, itching and a variety of other negative

side effects. In addition, patients who use opiate based narcotic pain medications typically build up a tolerance to

the medication rather quickly, meaning more of the same medication is needed to control the pain.

Corticosteroids are also used to maintain muscle strength and possibly slow the progression of the disease.

Steroids increase the body’s production of proteins that help build muscles, and they also help reduce the pain of

infl ammation and sore muscles. Over long periods of time, however, corticosteroids can weaken bones, increasing

the risk of fractures. However, steroids can also cause weight gain, making it more difficult for atrophied muscles

to move the body.

Heart damage due to MD can be treated with medication. Beta blockers or ACE inhibitors can be used to reduce

high blood pressure that results from damaged muscles in the heart. These are not long-term solutions, though,

since MD is a degenerative disease. Eventually, the heart damage could become too severe to be controlled with

medication.

Can Medical Marijuana Treat my Muscular Dystrophy

All the MD disorders are inherited, meaning the genes causing the disorder are passed down through families. The

age of onset, degree of muscle loss and weakness, rate at which the disorder progresses through the body, and

the pattern of inheritance within the family can vary signifi cantly among the MD disorders.

[…] Medical marijuana effectively relieves extreme pain, including the nerve pain that opioids are used for. In most

cases, marijuana is a better solution for pain relief than opioids because it can be used long-term for chronic pain.

The brain does adapt to cannabis, but at a much slower rate than opioids. This means the dose does not have to

rapidly increase to get the same results.

Medical cannabis products do not carry the same side effects as opioids, either. Opioids block pain signals and

reduce respiration at the same time. Opioid overdoses often result in death because respiration becomes so slow

that it stops entirely. Marijuana has no such side effects. If you get too much cannabis in your system, you might

experience a period of anxiety or paranoia, but it is not fatal.

20


MD

Medical marijuana may help MD sufferers who live with chronic pain avoid building up a never-ending tolerance to

opiate based pain medication. A recent study looked at the effect of adding medical marijuana to the daily regime

of patients who consume opiate based pain medication for chronic pain. The study found that the participants

experienced an average drop in pain level of 27 percent while not signifi cantly affecting the blood-levels of the

prescription drugs. For MD patients, in particular, excessive levels of opiates in the blood can be extremely

dangerous given the respiratory problems common to MD sufferers. The fact that medical marijuana was able to

reduce pain levels without increasing opiate blood levels is important.

Smoking marijuana has been found to be the most effective and rapid mechanism for relaying the active

compounds to the brain, thereby allowing the sufferer to feel immediate relief from pain as well as offering

better control over medication levels. Smoking anything, however, is clearly not good for your lungs or respiratory

system. An MD sufferer may have a particularly compromised respiratory system. Luckily, there is another,

equally effective, yet healthier mechanism for using medical marijuana – vaporization. Because the active

compounds in marijuana, known as cannabinoids, are volatile, they can be vaporized at a temperature level

signifi cantly lower than that needed to reach combustion, or smoke. As a result, hot air can simply be drawn

through the marijuana, which in turn vaporizes the cannabinoids and frees them for inhalation.

Medical cannabis is also effective at reducing the length and severity of muscle spasms and cramps. Patients with

MD can get very painful muscle cramps. A regular regime of cannabis treatment could reduce or possibly eliminate

these incidents.

There are not many medical studies done on the use of cannabis to treat MD, although the medical community is

continuing to make progress on proving the benefi cial properties of medical marijuana. The results of some studies

performed on the uses of medical cannabis for ALS [Amyotrophic Lateral Sclerosis, also known as Lou Gehrig’s

disease – Ed.] can be applied to MD, as well, since ALS also involves muscle atrophy and weakness., Some

studies have seen the following results of medical cannabis on ALS:

• Pain relief

• Muscle relaxation

• Saliva reduction

• Appetite induction

• Sleep improvement

• Bronchodilation

Several of these same treatment mechanisms could be useful in treating MD and eventually offer the basis for a

cure to the disease. In the meantime, more studies and more testing are needed to clearly defi ne the effects of

marijuana on MD.

Anecdotal reports of MD patients fi nding relief through medical marijuana are encouraging. The effects on their

quality of life can be so profound as to prompt them to move across the country to a state when medical cannabis is

easily accessible. MD patients are fi nding relief from pain and improved sleep habits from medical marijuana use.

[…] Medical marijuana is proven to reduce anxiety and promote relaxation in a number of different conditions.

Relieving stress can give the brain a chance to rest and work on improved healing. MD is a chronic condition with

no real cure, but in some cases, the symptoms can be managed for a normal life expectancy. The use of medical

cannabis improves the chances of slowing the progression of the disease and the onset of symptoms.

[…] People suffering from MD often have a compromised respiratory system from the disease. Smoking marijuana,

even though it has health benefi ts, would not be advisable under these circumstances. Vaporizing is a safer way

of administering medical cannabis that does not harm the lungs. Vaporizing is not as hot as smoking and does not

contain the by-products of burning.

There are other ways of consuming cannabis that do not rely on the respiratory system to deliver the medicine.

For acute pain, you may want to get instant relief. Using a spray or a few drops of a tincture under your tongue can

provide very fast relief. There are also topical products available that can be applied directly to the areas where it

hurts. The relief from these applications is almost instant as well.

21


MD

Edibles can be another helpful way to consume the benefi ts of medical cannabis for relief of MD symptoms.

Capsules can require more swallowing muscle control than an MD patient has, but edibles can be chewed for

easier consumption.

Medical marijuana doses can be adjusted for use in children and people with low body weight. It is safe for children

because there are no real side-effects of medical cannabis treatments. Cannabis products are available in many

different forms and with differing balances of THC, the psychoactive component that you might not need.

[…] Medical marijuana therapy can be life-changing, especially for those who suffer from chronic disease. MD

patients who try cannabis are amazed at how it deals with their symptoms and improves their quality of life.

Medical marijuana offers a brighter future for people suffering from muscular dystrophy and other painful chronic

diseases.

Article available at: https://www.marijuanadoctors.com/conditions/muscular-dystrophy/

22


A STEPPING STONE INTO

THE WILDERNESS

TRAVEL

By Hilton Purvis

The town of Upington, located in the Northern Cape

on the banks of the Orange River, was founded in

1873. Originally called Olijvenhoutsdrift ('Olive wood

drift') due to the abundance of olive wood trees in

the area, it was later renamed after Sir Thomas

Upington, Attorney-General and then Prime Minister of

the Cape. It originated as a mission station and now

houses the town museum, home of a donkey statue that

recognises the enormous contribution this animal made

to the development of the region during the pioneering

days of the 19th century.

The landscape is very arid but the soil is fertile. With

the Orange River fl owing through the town’s heart at an

average rate of 50 000 litres per second (it has been

known to exceed 1.5 million litres per second when in

full fl ood), it is little wonder that this region has been

turned into an oasis. The area is best known for its

export-quality grapes, raisins and wines, which are

cultivated on the rich fl ood plains of the river, some of

them stretching as far as the horizon. It is a little bit like

adding Stellenbosch, Paarl and Franschhoek together,

and then multiplying them a couple of times over. They

grow a staggering amount of grapes! Upington's most

famous wines are produced by the Orange River Cellars,

the bulk of which is exported, inter alia to Europe

and the USA.

Upington is the closest large centre to the Augrabies

Falls National Park and the Kgalagadi Transfrontier

Park, and it is primarily for this reason that it features

on our travel radar. Our route from Cape Town takes

us up the R27, and on the 660 km journey between

Calvinia and the Kgalagadi Transfrontier Park there

are, incredibly, only three towns to pass through, with

Upington being the last major stop before the fi nal 270

km journey to the park. There are a lot of vast open

spaces up there! Upington therefore becomes an

important stopover for travellers routing through the

Northern Cape, and this is evident from the number of

bed and breakfast establishments that are available.

Sadly most of them are not wheelchair accessible, but

fortunately Liesel and Hannes provide an oasis of

accessible accommodation at their "Libby's Lodge".

Libby's Lodge, with its tranquil garden fi lled with visiting

wild birds, crystal clear pool and bush-styled gazebo,

offers warm hospitality and professional service at an

affordable rate. There are seven spacious, air-conditioned

double rooms with en suite bathrooms, three

well-equipped self-catering family bungalows (sleeping

three to four people) and on-site lock-up parking.

A full English breakfast is served, but breakfast packs

for early bird travellers can be arranged on prior

request.

The wheelchair accessible room has level access from

the parking area (with one very small step on to the

veranda, no more than 5 cm high). There is easy

access into the dining area and a ramp leading down

into the garden. The bathroom is spacious, with

sufficient room for transfers onto the toilet and access

to the handbasin. There is an accessible bath and a

large shower with one step over the door edge. Whilst

there are no grab rails, there is sufficient room to

position a wheelchair safely.

Upington is a large town these days, and after resting

up at Libby's Lodge you can fi nd numerous dining

opportunities and the chance to view the Orange

River, and maybe even enjoy an early evening cruise,

depending on your level of disability. All of the major

retailers are represented in the town, so it is an easy

task to stock up for the next leg of your journey in the

Northern Cape, whether you are heading east to the

Augrabies Falls National Park or north to the Kgalagadi

Transfrontier Park. Either choice will certainly be an

unforgettable experience!

23


FUNDRAISING

Helping others feels good. When you donate to a charity, you

not only help them continue their vital work, you’re also

improving your emotional wellbeing, a win-win situation!

Contributing to any (or all) of our fundraising campaigns is

also an easy way to show your gratitude for all that you’ve

been given.

Sunny side up

"I want to be like a sunflower, so that even on the darkest days I will

stand tall and find the sunlight."

Banking details:

Bank: Nedbank, Current account

Acc no: 195 850 2049

Branch: Gauteng West

Code: 198-765

As a volunteer organisation we rely on the support and goodwill

of donors to assist us. Your support is needed to help MDFSA

raise awareness about this crippling and often fatal disease, by

purchasing a virtual watering can to assist their sunflower in

growing.

Purchase a virtual watering can for only R10 and follow how our

sunflower grows on www.mdsa.org.za. You can donate via our

Snapcode or EFT. Please use “sunny” as your reference.

MDFSA would also like to say a big thank you

to Corpnet Print Excellence for designing the

sunflower graphics free of charge.

24


FUNDRAISING

The COVID-19 pandemic has resulted in everyone’s lives changing

drastically, which is needed to keep us all safe. We as the Foundation have

come to a decision that, as a result of the COVID-19 pandemic and the

resulting financial hardship, MDF will not be taking part in the Discovery 947

Ride Joburg in 2020.

As a result, all MDF branches (National, Gauteng, Cape Town and KZN)

have designed a new campaign that cyclists and runners can join in together

in 2020 to support MDF while keeping themselves and their loved ones safe.

A new national online campaign has thus begun called “MOVE4MD”.

We would like to request that as a cyclist or runner you consider making

MDFSA a part of your regular or daily exercise routines.

You can run/cycle privately as you always do and track your progress through

the free Strava app or through Fitbit, etc. Take a picture/screenshot of your

progress and we will post it on Facebook and Instagram so that others can

make donations and become aware of MD as a result of your efforts.

Move4MD

Muscular dystrophy and neuromuscular disorders are a cause

close to all our hearts and could affect anyone of us. The more

awareness we can create, the more chance we have to find a cure for

this dreaded disease.

As a volunteer organisation we rely on the support and goodwill of

donors to assist us and greatly appreciate your care and concern for

those affected by muscular dystrophy.

Send your progress once a week to mdfgauteng@mdsa.org.za and we will post your feedback on our social media

accounts.

There are no joining fees or any costs whatsoever to take part.

Social distancing will be around for a long time to come, and this is the easiest way to continue your loyal support

while staying committed to flattening the curve!

25


FUNDRAISING

We hosted an online general knowledge quiz on

Thursday, 27 August 2020 at 18:30. The funds raised will

be used to continue assisting our members afflicted with

muscular dystrophy. Based on the support received, our

goal is to make this a monthly event.

The quiz is conducted via Whatsapp where the questions

will be asked with a voice note and the typed answers

sent by the team captain at the end of each round. The

quiz consists of fi ve categories with 10 questions per

category. The duration of the quiz is approximately 1

hour.

The cost to enter a team is R50.00, with a maximum of

fi ve people per team. Participants must choose a team

name and will be added to a Whatsapp group once proof

of payment is received. Winners will be announced on

our Facebook page.

Save the date and join us for a fun-fi lled evening while

supporting a worthy cause.

VIRTUAL

SCAVENGER HUNT

Calling all adults and children for an exciting virtual Scavenger Hunt (date to be announced).

The cost to participate is only R20.00 per team, and there is no limit to the number of people in

a team. Letters from the alphabet will be drawn out of a hat, and participants must search their

homes for all items starting with each respective letter within an allocated time. The team must

show how many items they managed to find, and the team with the highest number of items

overall will be the winner.

There will be 10 rounds of five minutes each. The platform for the Scavenger Hunt will be

Facebook Messenger.

26


FUNDRAISING

MDF merchandise

Please email your order and proof of payment to

gmnational@mdsa.org.za by 31 August 2020.

Masks are

available in

S-M & L-XL:

R60,00 each.

Embroidered

decals: R100,00

T-shirts are

available in

S-M & L-XL:

R130.00

Please note that the delivery

charge is for your cost.

Mug

R60,00 each.

Water bottle

(500 ml) R50.00

Bottle opener

R50.00

Notebook

water bottle

(380 ml) R100.00

MDFSA would also like to say a big thank you to Tamryn Oosthuizen for

designing the beautiful artwork for our fundraising campaigns free of charge.

27


People

Living with

Muscular Dystrophy

- Paul & Carly’s Stories

By Centers for Disease Control and Prevention

Myotonic dystrophy affects many parts of the body,

so both Paul and Carly need to see many different

types of doctors on a regular basis. Even though

Paul and Carly are both adults, their fathers often

come to their appointments with them and help them

coordinate their care. “You have to have someone

who knows everything and has been to every

appointment,” says Chuck, Carly’s father. For

patients with rare diseases, caregivers often

become experts in the disease.

Paul and Carly, two people who are living with

myotonic dystrophy, are part of a support

community for people with myotonic dystrophy

and their families near their hometown. Both Paul

and Carly had symptoms of myotonic dystrophy

for years before they received their diagnoses.

Myotonic dystrophy is one of the most common types

of muscular dystrophy, characterized by progressive

muscle weakness that can affect many parts of

the body, including the heart and lungs. Like other

rare diseases, it can take years of going to many

different doctors to get the right diagnosis.

The diagnosis explained many of the seemingly

unconnected symptoms that each had been

dealing with for years. “I probably had some

symptoms starting around 18, like hand cramping.

Back then I used to just sort of stretch my hands

out and go, and not think much about it. I was very

active,” says Paul. He started having heart trouble

around age 26, but nothing showed up on the tests

until one night when he ended up in the emergency

room with an extremely high heart rate. “During one

of the tests, my heart stopped, and they brought me

back. The doctor didn’t know what was causing it,

but they decided to put in a defibrillator.” Six years

later, at the age of 32, Paul received his myotonic

dystrophy diagnosis.

Even though Paul and Carly have the same

disease, their symptoms are very different. At age

30, Carly has difficulty with her speech, excessive

sleepiness, dyslexia, and is beginning to have heart

complications. “I can sleep 20 hours straight and

still wake up tired” she says.

At age 45, Paul has a pacemaker, sometimes needs

a ventilator, and has lost even more strength in

his muscles. Everyday things are very difficult for

him. “He can’t do the pots and pans, he can’t put

casseroles in the oven, he can’t get things off the

shelf, he can’t pour milk; those kinds of things

are almost impossible. I don’t think people really

understand,” says Angie, Paul’s wife and

primary caregiver. Paul and Angie have a teenage

son who does a lot of the heavy lifting around the

house that Paul is unable to do. Paul has trouble

getting dressed and putting on socks, and says that

his son Alex is a big help. “If I fall, which can be

embarrassing, he physically lifts me up.”

Paul and Carly agree that it is difficult for others

to understand what it means to have myotonic

dystrophy. They often get asked if they are

getting better, or people tell them that they don’t

look like they have muscular dystrophy. Paul says,

“I tell them I have a neuromuscular disease that

affects me every second of every day; it’s just that

28


People

nobody knows what it’s like. They don’t know what

to do or how to help.” Help is often hard to come by,

especially for the caregivers. Angie and Paul know

that soon they will have to hire someone to help

Paul during the day while Angie is at work. “When

people have cancer or other diseases, people bring

food and help. But ours is chronic and progressive,

and people don’t even know what to do.” Another

challenge with myotonic dystrophy is that when one

person gets diagnosed, other family members may

also find they have the same disease, possibly

resulting in more people in the family needing care

and fewer people to provide it.

When you’re living with a disability like myotonic

dystrophy, planning is everything. When Paul is

invited to events, he often has to call ahead and

determine whether he can go. “Everywhere I go,

everything I do, I think ‘Is this something I can

do? Is there an accessible bathroom? Is there an

elevator? Are there stairs I have to climb? Can I do

this?’ Two years ago, when I went to the football

championship, I had to call the stadium and talk with

someone about whether I could manage it based on

where the seats were.”

While Paul is no longer able to work, Carly works full

time at a bakery where she’s on her feet and lifting

things for 8 hours a day. She’s exhausted when she

leaves, but she’s grateful for the opportunity to have

work that comes with health insurance and other

benefits. “I definitely think that my work keeps me

going. If I was sitting around all day, it wouldn’t keep

me as fit as I am,” says Carly. Paul notes, “Carly is

a lot stronger and able. She is much younger. At her

age, I was probably very similar.”

Carly knows that things may change for her in the

future. “I think I go back and forth between denial

and acceptance. It affects everyone differently, so

I may never have the same kind of issues. So it is

scary, but it isn’t, because nobody can tell me what

it will look like.”

Carly enjoys the abilities that she still has, and does

things like zip-lining with her Dad. Paul stays busy

parenting his 16-year-old son, who will soon be

headed off to college. Life with myotonic dystrophy

requires careful planning and compromise, but is

not without joy. “We had to re-evaluate our life and

find a new normal,” says Angie.

The Myotonic Dystrophy Foundation recently

published clinical guidelines for people living with

myotonic dystrophy, which may help people like

Carly and Paul with their medical needs.

Article available at: https://www.cdc.gov/ncbddd/musculardystrophy/stories.html

29


People

'Lucky' Hoffmann

motivated by his

muscular dystrophy

By Rex Hoggard

Golfchannel.com, 11 January 2018

less than ideal, know that Hoffmann has come

by his optimism honestly.

Hoffmann first started to feel the effects of

muscular dystrophy in his right pectoral muscle

in 2011, but it took five years and some 25

doctors to finally receive a diagnosis.

It was hard, particularly for a player who lists his

interests as “anything active, sports, outdoors,”

to come to grips with such a devastating

disease, but he did.

HONOLULU –

Lucky.

The word hangs in the air for an awkward

moment before the conversation moves

forward.

Morgan Hoffmann is a lot of things – professional

golfer, pilot, athlete, and (if the gallery

following his group on Thursday at the Sony

Open was any indication) handsome. Like Hollywood

handsome.

So as the 28-year-old explains his sleep habits,

the idea that he's lucky certainly applies.

“I have to sleep for eight hours every day. That’s

my optimal sleep range,” he explains. “I can fall

asleep anywhere. I’m lucky.”

But given what’s transpired the last few months,

it’s an interesting, even odd, choice of words.

Hoffmann revealed in an emotional essay on

The Players’ Tribune in early December that

he had muscular dystrophy. His right pectoral

muscle is completely deteriorated, and his left

pectoral is starting to deteriorate. There is no

cure for muscular dystrophy.

So when Hoffmann offers an easy smile and a

line like, “I’m lucky,” it normally leads to a tough

follow-up question. But even though his plight is

“I have a lot of energy. I’m eating the right

things and feel great getting up in the morning,”

he smiles. “Just a couple of muscles keep

atrophying, which is aggravating, but I’m getting

stronger in the places I have muscles still. I think

I’m on the right path.”

Hoffmann, who is entering his sixth season on

the Tour this year, believes that he can make

a difference with the way he lives his life. By

eating better, working out, meditating and

getting those eight hours of sleep, he can

help stem the damage caused by muscular

dystrophy.

He also believes he can help others live better

lives.

Many people talk about making a difference, but

Hoffmann is doing it, and his plan goes well

beyond bringing more attention to muscular

dystrophy.

“I think I can help a lot of people, not just for

awareness of muscular dystrophy, but kind

of guide people in a more healthy way of

living,” Hoffmann says. “People are just so

uneducated about what is going in their bodies,

and it’s pretty unfortunate the way Americans

are eating right now. I really believe you can

change you [sic] physiology if you eat right and

you know what you’re putting in your body.”

30


People

To that end, Hoffmann hopes to build what

he calls a “wellness center,” a kind of health

superstore that will focus on the body and the

mind.

The wheels are already turning for Hoffmann

and his wellness center. In August, the week

before The Northern Trust kicks off the

FedExCup playoffs, he has organized a pro-am

tournament to help raise money.

The event will be played at Arcola Country Club

in Paramus, N.J., which is where Hoffmann grew

up and is just about a mile form [sic] Ridgewood

Country Club, site of this year’s first playoff

stop.

“The turnout and response already has been

incredible,” he says. “It’s going to be pretty

amazing what will happen over the next few

months.”

Hoffmann says many of the members at Arcola

have already committed to playing the event –

that’s 44 teams at $12,000 a group – and that

he’s already been approached by many Tour

players who want to volunteer to play in the

event.

In many ways, the wellness center is a

byproduct of the life Hoffmann has chosen in the

wake of his diagnosis. Each morning, he wakes

to take a variety of “high-dose” vitamins to keep

his blood levels at the correct level along with a

regimen of amino acids and organic honey.

Before he headed out for his round on Thursday

at Waialae Country Club, where he opened with

a 1-under 69, there was 30 minutes in the gym

to warm up, and after his round it was back to

the gym for more physical therapy.

Hoffmann doesn’t know if he can slow the

onset of muscular dystrophy, but he’s

determined to try by any means necessary. That

is how the idea of a wellness center was born.

“My vision is having a one-stop shop. You can

go in and get a nutritionist, get a therapist, you

can check the way your body functions, we are

going to have blood testing,” he says. “We’ll

have a trainer, a doctor. You go in and get your

entire body looked at from inside to out. We’ll

put you on a diet, we’ll talk about sleep,

meditation, everything.”

Hoffmann’s eyes light up as he explains his

grand plans and the pieces that continue to fall

into place. There’s no sadness, no regret, no

edge to suggest he’s still coming to terms with

his plight – just an unwavering belief that he can

make a difference.

“If I can just touch a couple of kids that have

[MD], that have been put down and don’t think

they can achieve their dreams, I just want to

show them I can still play and live my dream and

hopefully reach my goals,” he smiles.

Lucky, indeed.

Article available at: https://www.golfchannel.

com/news/lucky-morgan-hoffmann-motivatedhis-muscular-dystrophy

31


People

High-School Track Athlete with Myotonic

Dystrophy Finds His Stride Helping Others

By Stephanie Hlywak

Muscular Dystrophy Association

20 April 2017

Almost exactly one year ago, in the spring of

2016, Kade McCann learned he had myotonic

dystrophy. For this young athlete, the diagnosis

stopped him in his tracks.

“It was spring of my junior year of high school.

I had taken an exhaustive course load and was

mentally spent. On top of that, I was looking

forward to my spring track season as I had

ongoing injuries and had not competed in either

cross-country or indoor track that year,” recalls

Kade. “So, I was completely knocked over when I

received my diagnosis. I went through an intense

period of anger, fear and denial.”

While Kade struggled to accept his diagnosis,

he was proactive about taking care of his health,

spending many days at Boston Children’s

Hospital meeting with specialists and undergoing

more tests. At first, his own condition was all he

could focus on.

“Every week there were new obstacles for me to

face and information to process,” Kade says. “But

after a while, I started to pay attention to the kids

at the hospital.”

What he saw not only helped him come to terms

with his own diagnosis but also spurred him to

action.

“Most of my fellow patients were younger than me,

but their conditions were far worse. As I would sit

and wait for my appointment, something inside me

said that I needed to make a difference in the lives

of these kids. I asked myself, ‘What could I do?

I’m just a kid. I can’t help these kids. I can’t even

help myself.'”

Around this time, Kade began to consider what

he might focus on for his Senior Capstone

Project, a year-long deep dive into a

specific topic that would be part of his graduation

requirements from Whitinsville Christian School.

Kade didn’t have to look too far for a subject area

that interested him.

“I saw my Capstone Project as the perfect

opportunity to increase awareness of muscular

dystrophy and, in particular, myotonic dystrophy

by getting my school community and greater

regional community to rally behind a fundraiser

and get involved in a tangible way,” Kade says.

The benefactor of his fundraising efforts? Well,

that’s a funny story.

“Connecting with MDA was the last thing I wanted

to do when I was first diagnosed,” Kade admits.

“‘To me, affiliating with MDA would mean that I had

accepted the diagnosis and I wasn’t ready to do

that.”

However, as plans for his project progressed, he

recalled an encounter with an MDA representative

who reached out to ask if he needed support or

wanted to learn more about the organization.

“I worked up the courage to contact her and just

like that, the dots were connected for me and I

realized that there was something I could do,”

Kade says. “I could hold a fundraiser for the MDA

not to help myself, but to help all those other kids

who are suffering far worse than me.”

For this track and field student athlete, planning

a run/walk fundraiser was the natural next step.

“I chose this because it hit a nerve with me. I

have seen many children at Boston Children’s

Hospital that are unable to walk and I realize

that one day that could be me. I wanted to do a

fundraiser that would allow participants to not just

donate money, but to have a call to action by

walking or running for those people that cannot

walk or run for themselves,” Kade says. “I am

encouraging people that as they take each step

they think about the millions of people who are

affected by neuromuscular disease and give

thanks for their own good health.”


People

Despite the familiar activity, Kade was still in

uncharted territory when it came to fundraising.

Despite this, he committed himself to a $5,000

goal and set about achieving it by constructing

outlines; hiring vendors to help produce videos,

t-shirts and websites; and mapping out timelines.

From there, Kade branched out to share his

story with his church and the larger public. It was

intimidating at first, but Kade learned a lot about

himself and others in the process.

“You have to have confidence in yourself that

you can raise money and also trust in the hearts

of people to care about your cause,” he says.

“As long as I kept my focus on my vision and

message, I found that people were more than

willing to help and get involved.”

His planning, passion and persistence paid off: to

date, Kade has raised $5,900 for MDA. Far from

basking in that achievement, Kade focuses on the

potential for the money.

“Of course, I am very grateful that I reached my

financial goal, but I am just as grateful that people

have taken the time to read about my story and

to understand what the symptoms of early-onset

neuromuscular disease look like,” he says. “Early

intervention could literally save a life and raising

awareness of the signs and symptoms was really

my primary focus. Organizing a fundraiser was the

means to reaching that goal.”

To collect donations, Kade used the MDA Your

Way online fundraising platform, which allows

individuals to organize their own fundraisers for

MDA. Participants have used the tool to collect

donations for MDA in lieu of wedding gifts or

anniversary presents and organize cross-country

bike treks or hikes across Europe. Kade’s

fundraiser is among the top five most successful

campaigns.

Once the fundraising mechanism was in place,

the next order of business was to share his story,

something that Kade had been reluctant to do.

He started with an important audience: his school

community.

“I had allowed myself many months of privately

living with my story and sharing it one on one.

Each of those interactions built my confidence

and helped me to frame how I wanted to share

it with others,” he says. “So, by the time the day

came for the school assembly for me to share my

testimony, I had a really good sense of what I

should say and how I should say it. I think it was

shocking and scary for many of the students to

hear my story, but in time they have come to have

a better understanding that while I may have this

disease, I am still the same person.”

Kade is looking forward to seeing his efforts

come to fruition this Saturday, April 22 (registration

is still open, and Kade is accepting donations

through the end of May). But his involvement with

MDA is something he is committed to long-term. In

the fall, he will join the Honors Program at UMASS

Lowell and major in biomedical engineering.

“The MDA of Massachusetts actually has a

chapter on the campus, and I plan to get involved

in that chapter and see what opportunities there

are for me to continue spreading awareness about

neuromuscular disease,” Kade says. “Also, as a

member of the Commonwealth Honors Program

at UMASS Lowell, I am required to do a Senior

Capstone Project. Ironic, huh?”

Whatever form that Capstone Project takes, it is

clear that MDA has a strong supporter in Kade. He

recommends that anyone facing a diagnosis like

his seek out the organization.

“When someone is diagnosed, the first thing we

all want is information and the MDA has plenty

of it to share. Second, if a patient or family need

some form of assistance, the MDA has many

programs that can help. Lastly, the MDA is made

up of a community of individuals who want to

serve and to help ease pain and suffering,” Kade

says. “Who wouldn’t want to be part of that kind of

community?”

Article available at: https://strongly.mda.org/high-school-track-athlete-myotonicdystrophy-finds-stride-helping-others/

33


Research

The National Institute of Neurological Disorders and Stroke

(NINDS), a part of the National Institutes of Health (NIH),

supports a broad program of research on MD. The goals

of these studies are to increase understanding of MD and

its causes, develop better therapies, and, ultimately, find

ways to treat it. The NINDS and its sister institutes, the

National Institute of Arthritis and Musculoskeletal and Skin

Diseases (NIAMS), the National Institute of Child Health

and Human Development (NICHD), and the National Heart,

Blood, and Lung Institute (NHLBI), lead the MD research

efforts conducted at the NIH and at grantee institutions

throughout the country.

The NIH supports a broad range of basic, translational, and

clinical research in the MDs. Advances in basic research

are essential to the basic understanding of each type of

MD. While many genes that cause muscular dystrophy still

remain to be identified, advances in gene sequencing has

aided the identification of genes that may be involved for

most types of muscular dystrophy. In turn, new knowledge

of specific disease mechanisms is identifying potential

targets for therapy development. In recent years, research

into the underlying disease mechanisms has created new

opportunities for therapy development in nearly all

types of MD. For example, advances in targeted therapy

have led to promising efforts in myotonic dystrophy and

facioscapulohumeral muscular dystrophy.

Federal funding, through the NIH and other agencies, as

well as the venture philanthropy programs supported by

patient advocacy groups, have attracted biotechnology and

pharmaceutical firm investments into therapies for the MDs.

What research is being done?

Excerpt from Muscular dystrophy: Hope through research by

the National Institute of Neurological Disorders and Stroke,

Maryland, USA

Currently, a variety of strategies are employed in

developing new drug and biologic therapies for the range of MDs.

Strategies being explored are either specific to a particular

type of MD or may address disease progression that may

apply to multiple types of MD.

Gene replacement therapy

Gene therapy has the potential for directly addressing the

primary cause of MD by providing for the production

of the missing protein. Hurdles to be overcome include

determining the timing of the therapy (to possibly overcome

the genetic defect), avoiding or easing potential immune

responses to the replacement gene, and, in the case of

Duchenne MD, the large size of the gene to be replaced.

For those MDs with central nervous system consequences

(congenital muscular dystrophy and myotonic dystrophy),

researchers are developing and fine-tuning gene therapy

vectors (a way to deliver genetic materials to cells) that can

cross the protective blood-brain barrier.

Recent progress in delivery of replacement genes in MD

includes considerable refinement of the viral vector

types that improve the targeting to skeletal muscle and

vascular approaches to deliver replacement gene to most or all

skeletal muscles. Approaches that work for skeletal

muscles may or may not work for cardiac muscle; this

is a challenge that must be met since many MDs cause

cardiomyopathy. The strategies for assessing potential

immune responses to the proteins encoded by replacement

genes and for managing those responses also have received

considerable attention in in [sic] animal model studies

and in human clinical trials. Finally, for some MDs, early

34


Research

detection of the disease causing mutations, through newborn

screening, may be necessary for gene replacement therapy to

be used early enough to mitigate progression of the disease.

Clinical testing of gene therapy strategies in MD has

been underway for Duchenne and limb girdle muscular

dystrophy. Injections of gene therapy vectors into single

muscles of participants were done as a first step to

establish safety of the approach. With the support of extensive

studies in animal models, clinical trials are now moving

toward testing of gene therapy of all muscles of entire limbs,

using an isolated vascular delivery approach. If isolated limb

delivery approaches prove safe and effective, research will

move to systemic delivery of gene therapy vectors so all

muscles can be treated simultaneously.

Utrophin is a protein that is closely related to dystrophin and

is not affected in the gene mutations that cause Duchenne

MD. Targeting increased expression of utrophin may prove

a useful approach in treating Duchenne MD. NIH supports

both gene therapy and small molecule drug development

programs to increase the muscle production of utrophin.

Finally, modifier genes ‒ genes with activities that act to

reduce the severity of MD ‒ have been discovered by

NIH-funded teams. These genes, including latent TGF

binding protein 4 and osteopontin, represent new therapeutic

targets to potentially reduce the severity of several types of

muscular dystrophy.

Genetic modification therapy to bypass inherited mutations

Most individuals with Duchenne have mutations in the

dystrophin gene that cause it to function improperly and

stop producing the dystrophin protein. By manipulating the

protein synthesis process, production of a gene that either

"reads through" or “skips” the genetic mutation can result in

at least partial functional dystrophin.

Two strategies are currently under study to bypass

dystrophin mutations, one of which is drugs that

cause the protein synthesis machinery to ignore the

premature stop signal and produce functional dystrophin.

This strategy, which is potentially useful in about 15

percent of individuals with Duchenne MD, is currently

in clinical trials. Second, a more recent approach uses

antisense oligonucleotides (short strands of nucleic acid

designed to block the transfer of some genetic

information into protein production) to alter splicing and

produce nearly a full-length dystrophin gene, potentially

converting an individual with Duchenne to a much milder

Becker MD. Two biotechnology companies are currently

testing oligonucleotide drugs in advanced clinical trials

for people who require skipping of exon 51 of dystrophin.

(An exon is a coding sequence in a gene for a protein).

NINDS and NIAMS are supporting preclinical work on

oligonucleotide drugs for individuals with Duchenne MD

who require skipping of exon 45. While the exon skipping

approach requires ‘personalized medicines’ for subsets of

people having Duchenne who need skipping of specific

exons, as many as 80 percent of affected individuals could

benefit from this new technology.

Antisense oligonucleotide technology is also being

evaluated for use in myotonic dystrophy, but by a different

mechanism than in Duchenne MD. In myotonic

dystrophy, long duplications of repetitive DNA sequences

lead to production of a toxic RNA that sequesters a splicing

regulator, Muscleblind, causing mis-splicing of many genes

in muscle and brain. An [sic] NINDS and NIAMS-supported

project is advancing an oligonucleotide therapeutic designed

to degrade the toxic RNA and mitigate the splicing defects.

This approach, in partnership with academic investigators

and biotechnology and pharmaceutical companies, has the

potential to address all people having myotonic dystrophy

and is planned to be in clinical trials within the next few

years.

Drug-based therapy to delay muscle wasting by

promoting muscle growth or mitigating damage due

to inflammation

Progressive loss of muscle mass is primarily responsible for

reduced quality and length of life in MD. Drug treatment

strategies designed to slow this muscle degeneration can

have substantial impact on quality of life. Similarly, skeletal

muscle has the ability to repair itself, but its regeneration

and repair mechanisms are progressively depleted during

the course of several types of MD. Understanding the repair

mechanisms may provide new therapies to slow, and

possibly stabilize, muscle degeneration.

Corticosteroids are known to extend the ability of people

with Duchenne MD to walk by up to 2 years, but steroids

have substantial side effects and their mechanism of

action is unknown. Since several corticosteroid protocols are

used, an [sic] NINDS-funded study is evaluating drugs and

their efficacy and tolerability at different doses in order to

determine optimal clinical practice for their use in Duchenne

MD. In addition, a biotechnology company supported by the

NIH’s National Center for Advancing Translational Sciences

is developing a modified steroid to increase its efficacy in

Duchenne while reducing the side effects that often limit

individuals from using corticosteroid therapy.

Preclinical drug development efforts supported by NINDS

and NIAMS are developing a peptide therapeutic that

has, in animal models, dual activity in mitigating muscle

damage due to inflammation and also enhancing muscle

regeneration. Efforts to preserve muscle mass through

inhibition of a negative regulator of muscle growth,

myostatin, have encountered some roadblocks, including

failed clinical trials, but are still under study.

Cell-based therapy

The muscle cells of people with MD often lack a

critical protein, such as dystrophin in Duchenne MD or

sarcoglycan in some of the limb-girdle MDs. Scientists are

35


Research

exploring the possibility that the missing protein can be

replaced by introducing muscle stem cells capable of

making the missing protein in new muscle cells. Such new

cells would be protected from the progressive degeneration

characteristic of MD and potentially restore muscle function

in affected persons.

The natural regenerative capacity of muscle provides

possibilities for treatment of MD. Researchers have shown

that stem cells can be used to deliver a functional dystrophin

gene to skeletal muscles of dystrophic mice and dogs. The

focus of research has been on identifying the cell types with

the highest potential for engraftment and growth of muscle

and on strategies to deliver these muscle precursor cells to

human skeletal muscles. Overall, cell-based therapeutic

approaches are under consideration for multiple types of

MD.

Moving forward with research in MD

Until recently, most therapy development programs

in MD were focused on Duchenne. With the dramatic

advances in understanding disease mechanisms, significant

therapy development efforts are now being launched in many

types of MD. NINDS funding supports teams working on

the disease mechanisms in facioscapulohumeral muscular

dystrophy, central nervous system involvement in myotonic

dystrophy, and on the role of fibrosis in Duchenne MD.

Similarly, NIAMS-supported projects are identifying novel

therapy development targets that are attracting interest from

biotechnology and pharmaceutical companies and will help

move toward therapy development programs for all types

of MD.

Importantly, parallel efforts need to be made in clinical

trial readiness, so that clinical trials are feasible when a

candidate therapeutic reaches that stage. Patient

registries, natural history studies, biomarker identification,

development of clinical trial endpoint measures, and

emergence of standards of care are all essential in

supporting clinical trials and are being advanced in

several types of muscular dystrophy with the support of both

public and private sector partners. The NIH has recently

undertaken several new initiatives in

training, career development, and research that are targeted

toward MD. These advances, along with the NINDS focus

on translational and clinical research, will lead to the growth

of clinical trials and promising treatment strategies.

Article available at: https://www.ninds.nih.gov/Disorders/

Patient-Caregiver-Education/Hope-Through-Research/

Muscular-Dystrophy-Hope-Through-Research#3171_10

36


Research

Breaking news in research

By Muscular Dystrophy UK

Promising updates on PTC Therapeutics’ trials for SMA

drug ‒ 17 June 2020

PTC Therapeutics has shared an update on two trials of

Risdiplam, an experimental drug for the treatment of spinal

muscular atrophy (SMA). The drug increases SMN protein

levels, the protein absent in people with SMA. The drug

works by targeting the SMN2 gene.

The SUNFISH trial investigated the effect of Risdiplam

in children and adults with SMA Type 2 or 3. Recent data

show Risdiplam improved motor function after 24 months of

treatment compared to natural history data.

JEWELFISH studies people with SMA aged six months

to 60 who have previously been treated with other SMA

therapies. Results showed that Risdiplam led to rapid and

sustained increases in SMN protein levels.

Positive news from Sarepta LGMD2E gene therapy trial

‒ 10 June 2020

Sarepta Therapeutics has shared an update on two groups of

patients who have received SRP-9003, as part of a study into

its gene therapy for limb girdle muscular dystrophy Type 2E

(LGMD2E).

SRP-9003 is an experimental AAV gene therapy that codes

for the full-length beta-sarcoglycan protein and has been

shown to increase gene expression – the process in which

the instructions in our DNA are converted into a functional

product, such as a protein – in muscle.

It’s a promising step forward in the study of gene therapy for

LGMD2E and provides information relevant to the company’s

other gene therapy studies, such as Duchenne muscular

dystrophy.

Acceleron discontinues drug development for CMT ‒ 10

March 2020

Today, Acceleron announced topline results from its Phase II

ACE-083 trial for Charcot-Marie-Tooth Disease. Although

the drug increased the size of the muscles it was injected

into, this did not translate into a clinical benefit i.e. there was

no improvement in muscle strength or function.

Unfortunately, this means that Acceleron is discontinuing

development of ACE-083 for CMT.

ACE-083 is a drug that inhibits a family of proteins that

negatively regulate muscle growth (including myostatin).

First CNM patient receives anti-sense drug ‒ 5 March

2020

Dynacure have announced that the first person in its Phase

I/II trial, Unite-CNM, has received the drug DYN101. This

is the first time that anyone with centronuclear myopathy

(CNM) has received an anti-sense drug.

DYN101 is an antisense drug designed to switch off DNM2,

a gene that is overactive in CNM.

More positive news from SMA SUNFISH trail ‒

6 February 2020

PTC Therapeutics have shared the clinical data presented at

the International SMA Europe Conference in France.

The study showed improvement in muscle function in

people with SMA type 2 and 3 when treated with risdiplam

over a period of 12 months. Children aged 2-5 years, showed

improvement compared to those not receiving the drug.

In people older than 5, the progression of the condition

stabilised.

The company will be presenting the data in a conference

call for investors at 1pm today. It can be accessed by dialing

(973) 935-8152 five minutes before the start of the call and

entering the passcode 7757508.

FSHD drug granted orphan drug status by FDA –

29 January 2020

Fulcrum Therapeutics has announced that the United States

Food and Drug Administration (FDA) has granted Orphan

Drug designation (ODD) to losmapimod for the treatment

of patients with FSHD. This designation gives Fulcrum

certain financial benefits that will help to lower the cost

of developing the drug. Losmapimod has been shown to

“switch off” DUX4 in cells originating from people with

FSHD. The safety and efficacy of the drug is currently being

tested in a Phase 2 clinical trial. The results from this trial are

expected later in 2020.

Duchenne trial to extend to non-ambulatory boys and

men – 8 January 2020

Pharmaceutical company, Catabasis, and charity

Duchenne UK have announced a partnership to study

the drug, edasalonexent, in the non-ambulatory DMD

population.

Edasalonexent works by turning off an enzyme called

NF-kB, which is known to be overactive in DMD. It has

been shown to slow the progression of Duchenne and is

currently being evaluated in a phase 3 trial in boys aged four

to seven.

The new study will evaluate the safety and efficacy of the

drug in non-ambulatory boys and men and will be recruiting

in the UK.

Information obtained from: https://www.musculardystrophyuk.org/news/breaking-research-news/

37


LIFE IN THE TIMES OF

COVID

By Hilton Purvis

We are living in a world that is probably more informed,

technologically advanced and capable than ever before in

the history of mankind. Yet our lives can change irreversibly

overnight, not just one life, not even millions of lives, but in

fact billions of lives!

COVID was out there at the dawn of 2020, but that's just

the thing, it was "there", far over there, in China and just

beginning to show its presence in Italy. It wasn't "here",

yet. Until a problem is here it isn't really a problem, it is

someone else's problem. And so it was at the end of

February when we started a holiday in the Kgalagadi

knowing that the northern reaches of the park are without any

form of internet connectivity or mobile phone reception. For

us it is absolute heaven since we generally avoid

television and make as few phone calls as possible when

we travel. The idea is to get away from everything, not be

connected to anything. So we found ourselves happily

photographing lions, leopard, cheetah, antelope, eagles and

falcons and the amazing bushveld landscapes without a

concern in the world. After more than 10 days in the far north

we drove down to Twee Rivieren and were amazed to find

our phones ringing and beeping away like crazy! A brief

perusal of the messages told us that the world had changed

completely during our time of the innocent isolation. The

virus that was over there was now here and we had just

enough time to drive back to Cape Town, stock the fridge

and go into "lockdown", whatever that was supposed to be.

Unknown times.

Our world was instantly transformed and we discovered that

our everyday language now included other words which most

of us would hardly remember using a year earlier. Words and

phrases like the infamous “curfew”, “social distancing”,

“flattening the curve”, “the new normal” and “Zoom”. Our

daily wardrobe now includes a face mask (minimum of three

layers!), sometimes gloves and the ever-present bottle of

sanitiser and wet wipes! Clean times.

The first days were eerily quiet, almost as if everyone was in

a state of shock, which was probably quite close to the truth.

The entire neighbourhood was covered in a spooky hush. No

sounds of motor vehicles, no taxis, no buses, no sounds of

building or construction, and strangely enough no sounds

of dogs barking or kids playing. It was quite surreal. Quiet

times.

I am still in two minds as to the real nature of this COVID

thing and how much of it is real, and how much is social

media running out of control. There is no doubt that it

is a real virus and is killing people in large numbers, but

whether or not it is a pandemic remains to be seen. Certainly

it has been a social media pandemic, often for all the wrong

reasons. It reminds me of the rhyme about the little girl who

had a little curl ....

Right in the middle of her forehead,

When she was good,

She was very good indeed,

But when she was bad she was horrid.

Such has been the case of the little girl called "social

media" in the last six months. In many cases she has been

very good and provided everyone under lockdown with a

method of communication and networking that has allowed

us to not only keep informed but also remain in touch with

everyone we care about. At the same time she has been

very, very bad in spreading fake news, unfounded rumours,

misinformation and general fear mongering. Strange times.

For the disabled community it has been yet another challenge

to our already challenged lifestyles. The early phases of

38


lockdown meant hardship for a great many people who lost

access to healthcare, access to their carers, and in many

cases access to the most basic essential of all, food. If you ran

your own business or worked in a small industry, you were

immediately out of work and without any form of income.

The extreme nature of the initial lockdown did not appear

to be properly thought through by the government,

leaving some of our most vulnerable communities

completely stranded and dependent on the goodwill of

private citizens. Certainly in our neighbourhood if private

individuals had not rallied together and assembled food

parcels and their distribution, thousands of people would

have starved in April and May. The hardship continues

and looks likely to get worse before it gets better, but there

are signs of strong community networks developing that

offer a degree of hope. It remains a perilous state of affairs.

Disturbing times.

When is this going to end? Some of us will be watching the

figures in search of a steady downturn. Others are waiting

for a vaccine, and still others are watching others to see what

others are doing. Right at the beginning of this saga, way

back in January or February, when asked how a pandemic

plays out, a friend of mine said, “it's over when people say it's

over”. That increasingly looks to be true as individual people

and communities make their own assessments about the risk

levels and adjust their lives accordingly. Decision times.

So what is going to be the new normal? Certain aspects

of our lives have already put their proverbial hands up,

fundamentally changed by COVID and likely only to

continue to change in the future. The first has been the move

towards internet-based employment wherever possible. As

somebody who comes from the IT industry of the 1980s,

I have been acquainted with the concept of working from

home for probably 25 years. It has always been something

which the industry has aspired to but never quite achieved.

Whilst many people have succeeded in realising this

concept, most still find themselves travelling to an office each

morning. The virus has changed all that, forcing big

businesses to throw all of their efforts into setting up a

work-from-home infrastructure. Whilst some might

gradually go back to their offices over time, the work-fromhome

model is now well and truly established in South

Africa. Another aspect, specifically for those who have

children, is the introduction of online education. Whether

or not this gains a foothold and becomes more generally

accepted remains to be seen. Certainly there is a genuine

opportunity for the merger of the home-schooling model and

the online education model into an integrated educational

system. It will be interesting to see how this plays out in

the years ahead. Another new normal is the acceptance of

online shopping as a firmly entrenched aspect of our lives.

In South Africa online retail has largely struggled to gain a

foothold because of our non-performing postal system.

Courier companies have developed to fill the void, but they

are expensive and this has acted as a brake on the industry.

COVID has changed all that and introduced online shopping

to all generations of South Africans, whether they wanted to

navigate the waters or not. It is somewhat amusing to talk

to friends who are in their 70s and 80s and hear them tell

about their latest online shopping experiences in great detail.

They are the new millennials! In terms of communication

there has been a consolidation of cellular and internet-based

technology. There is no doubt that the new normal now

involves the everyday use of WhatsApp and Skype and that

new kid on the block in the form of Zoom. For those running

businesses, clubs or social groups and those wishing to get

family groups together, Zoom has been a hugely successful

discovery. Turbulent times.

Strange times indeed.

39


South African participation in International

Centre for Genomic Medicine in

Neuromuscular Disease (ICGNMD) – a call

for collaboration with MDSA

We are repeating an article from the July 2019 issue to refresh your memory. Due to ethical reasons we

are not allowed to advertise the contact details of the clinics. If you wish to do genetic testing, please

send an email to gmnational@mdsa.org.za for more details. –Ed.

Neuromuscular diseases (NMDs) affect

approximately 20 million children and adults

globally. They cause either premature death

or are chronic diseases causing lifelong

disability with economic impact. They include many

different disorders affecting muscle and

nerve function and account for 20% of all

neurological diseases. Examples include

muscular dystrophies, motor neuron diseases,

and mitochondrial diseases. Most NMDs are

genetic single gene disorders, with many genes

being discovered. In developed countries, a

precise genetic diagnosis and gene

discoveries are already having an important

impact on patient care and health outcomes.

Unfortunately in developing countries, such as

SA, this is not the case and the great strides in

research that are required to develop such genetic

diagnoses in our country have not been

forthcoming in recent decades.

The newly established International Centre for

Genomic Medicine in Neuromuscular Disease

(ICGNMD) - partly funded by the MRC (UK) for

five years from July 2019 - has the mission to

harness genomics to understand disease

mechanisms and improve the health outcomes of

children and adults with serious NMDs on a global

scale. It is led by the University College London

& Cambridge University and include partners from

five developing countries: South Africa, Brazil,

India, Zambia and Turkey. The main objectives

are to build NMD cohorts in these countries,

identify the genes involved in the disease in each

population, and build human capacities in each

country and international networks that are

sustainable. Reaching these objectives will

greatly help to address the treatment of the

various NMDs.

For SAs participation, experienced researchers

and clinicians at the following universities have

formed a core team:

• Prof Francois H van der Westhuizen

(coordinator and NMD researcher), Centre for

Human Metabolomics, North-West University

(NWU), Potchefstroom

• Prof Izelle Smuts (paediatric neurologist).

Department of Paediatrics, University of

Pretoria (UP).

• Prof Jo Wilmshurst (paediatric neurologist).

School of Child and Adolescent Health, Red Cross

War Memorial Children’s Hospital,University of

Cape Town (UCT).

• Dr Franclo Henning (neurologist). Division of

Neurology, Stellenbosch University (SU).

• Prof Jeannine Heckmann (neurologist). Division

of Neurology, Groote Schuur Hospital, UCT.

• Prof Soraya Bardien (geneticist), Division of

Molecular Biology and Human Genetics,

Stellenbosch University.

The success of this ambitious study for SA will

greatly depend on the extent in which patients

can be recruited and how well the complex,

population-specific clinical and genomic data

can be scrutinized. It will also depend on

collaborations with all stake holders in SA. The

centres already participating have NMD clinics a

base of patients that are visiting these clinics, as

well as established collaborations (e.g. contact

with local MDSA branches) and networks. We

would like to expand the knowledge of this study

so that broader access of patients with a NMD and

other collaborations with these clinics can be

established over the next 5 years.

Through Dr Marnie Potgieter (UP), we came into

contact with MDSA to inform members of this

ICGNMD study and participate at either of the

centres in the near future.

40


Prof Amanda Krause, MBBCh, PhD MB BCh,

Medical Geneticist/Associate. Professor.

Head: Division of Human Genetics.

National Health Laboratory Service (NHLS)

& The University of the Witwatersrand.

Please e-mail your questions about genetic counselling to national@mdsa.org.za.

What is muscular dystrophy?

Muscular dystrophy is the name given to a group of diseases which cause progressive weakness and wasting of the muscles. They are caused by faults

in a group of genes and are thus genetic disorders. The normal function of these genes is to create the protein support backbone of muscle cells and

maintain their normal function.

Thus when these genes are faulty, degeneration of the skeletal (voluntary) muscles that control movement results and progressive weakness follows.

Depending on which particular gene is faulty in an individual and the severity of the fault, muscular dystrophy can first manifest in infancy or up to

middle age. In some forms of this disease, the heart and other organs are also affected. The disorders differ in terms of the distribution and extent of

muscle weakness, age of onset, rate of progression, and pattern of inheritance. The prognosis for people with muscular dystrophy varies according to

the type and progression of the disorder.

It is important that a specific genetic diagnosis be made for an individual with muscular dystrophy, so that management can be as specific as possible.

A specific genetic diagnosis also allows questions around prognosis and risks for other family members to be answered more precisely.

Are there any other diseases with the same symptoms as muscular dystrophy?

Muscular dystrophies are, by definition, genetic disorders. There are, however, other muscle conditions which may present with overlapping symptoms.

These can include conditions where the muscles become inflamed or where there is muscle wasting due to underlying endocrine problems, for example

hypothyroidism. These conditions can generally be distinguished from muscular dystrophies with appropriate clinical and laboratory investigation.

What is the role of creatine kinase (CK) determination in the evaluation of muscular dystrophy?

Creatine kinase (CK) is an important protein in muscle cells. It is also found in the heart, brain and other tissues, but at lower levels. Increased amounts

of CK are released into the blood when there is muscle damage. CK levels can also be increased when there is heart muscle damage, for example with

a myocardial infarction. This test measures the amount of creatine kinase in the blood.

Persistently high CK levels can be found in many muscular dystrophies as the CK is released as the muscle cells break down. However, levels are not

increased in all muscular dystrophies. In an individual with a muscular dystrophy, CK levels may be raised before weakness is evident clinically. In

inflammatory muscle conditions CK levels can also be very elevated.

Doctor’s

In addition, there are many other conditions where CK levels are found to be elevated, including after strenuous exercise and trauma and in some

endocrine disorders. Certain medication may also increase CK levels. Thus an elevated CK level does not confirm a diagnosis of a muscular dystrophy.

41


ON THE SPOT, SCOTT…

A knight proves his

worthiness by his deeds . . .

By Robert Scott

Now what message am I trying to get to here? Well, we

are all going through struggles and taking on strain and

hardship. However, if we do this alone we are going to

struggle, but if we work together we will make it through our

current challenges.

I hope this offers you a glimmer of hope as it did for me. We

will all get through this situation and, if we can, should help

those around us get through it too. Your support really does

mean hope!

What is there to say about the state of our planet at the moment?

To be honest, I don’t know where to start or what to

say that would even scratch the surface of what we have all

gone through and will still face.

With that in mind, allow me to share something with you for

a moment that I hope will offer some light for you in the same

way it did for me.

A few weeks ago I watched a film called “The Mighty”, a

rather unassuming movie from 1998 that carries a very

powerful message. The plot follows two schoolboys, Kevin

and Max, who form a bond with one another over the similar

circumstances they share. Kevin is physically disabled and

walks with crutches, whereas Max is physically large and

strong but has a learning disability. One day Kevin is selected

to tutor Max in reading class and decides to read a book about

the Knights of the Round Table.

While reading, the two boys begin to realise that, despite

their disabilities, they could use their respective abilities to

look after one another and thus have an easier time in life.

Kevin says to Max, “You need a brain and I need legs, and

the Wizard of Oz doesn't live in South Cincinnati”.

They begin a long adventure together, with Max

carrying Kevin on his shoulders, as they imagine themselves

as knights of yesteryear. All the while Kevin reminds Max

that a knight proves his worthiness by his deeds.

42


KIDDIES CORNER

Play is an important part of a child's early development. Playing helps young children's brains to

develop and their language and communication skills to mature.

Ice-Cream Stick Bookmarks Idea

What waste you need:

• Ice-cream sticks

• Ribbon

• Glue

• Felt pens

• Googly eyes

By Science Fun for Everyone!

What to do with these:

1. Wash and dry the ice-cream sticks.

2. Leaving the top ¼th part of the stick empty, twirl and wrap the ribbon around the stick.

3. You can also use the pens to colour and decorate the stick.

4. The top part is for the face: stick on googly eyes and draw a mouth.

5. Your bookmarks have characters as interesting as the books they’ll be in now!

Source:

27 best out of waste ideas for creative kid's project. 2018. https://sheroes.com/articles/best-out-of-wasteideas/NjkzNw==

43


Random gravity checks

Tossing a pebble into life's pond

and watching the ripples

By Andrew Marshall

are going to have such massive role in history, but

here are a few other places I have seen our ripples

start to be felt.

I will never forget one guy in a shopping centre who

made a passing comment to me that shifted my mind

dramatically and yet he probably didn’t give it a

second thought. At a time when I was struggling to

accept that I could no longer walk and had to adapt to

a wheelchair, I was sitting outside a shop when this

guy rolled past (also a wheelchair user) and said:

“Don’t look so sad mate. Life is actually quite good.

It just depends on how you look at it.” I have thought

back to this man’s words time and time again, and

he probably doesn’t have a clue that he had any effect

on me or on how I try to look at things.

Then I look at my friend Lara, who died some ten

years ago of complications related to Friedreich’s

ataxia, and I think she must have thought her life

was pointless (we had chatted about this online

once or twice), yet her life and then subsequently

her death had a massive impact on me and have

given me such a different way to look at what I find

important, reminding me often that I truly have so

much to be grateful for.

No one truly knows how much they are affecting the

world and the lives of the people who know them

(and sometimes, actually more often than not, even

the people who don’t).

I don’t want to get too political, but think about

George Floyd, the Afro-American man who

suffocated while being subdued with excessive

force by a US policeman recently ‒ do you think he

knew he was going to be such an influential person?

When he was lying there with that cop’s knee on

his neck, I can guarantee he wasn’t thinking it was

going to have an impact on the world and perhaps

be a pivotal point in history; he was probably

thinking: “Dude, get off me, I can’t breathe.” Of

course, this is an extreme example, and not all of us

Another person I wrote about was a girl who saw

me battling to walk with my crutch and, instead of

ignoring me like many people do, she got up and

came over and gave me a hug (pity she was having

dinner with her boyfriend). That girl and many other

people who just come over and say “Hi” or make eye

contact with me and smile have often made me feel

there is a point in what has sometimes seemed a

mad, stupid and pointless existence.

The last three paragraphs express things that

I wrote about in my autobiography, Dissecting

wobbles, and I know I’m exceptionally privileged to

have been able to have those experiences. A similar

thing happened in connection with my autobiography

too. The number of emails and messages I got from

people on the other side of the planet saying that I

had changed their perspective was truly astonishing.

44


I know that not everyone is going to be in a position

to have this experience, but here’s a little story that

illustrates how everyone, regardless of how much

money they have or who they know, can make a

difference too.

My best friend sent me a story of an Indian woman

who wanted to give back to her community and just

generally make an impact (“The power of a trashed

pencil” by Nipun Mehta, https://www.servicespace.

org/blog/view.php?id=2021). The woman didn’t

have lots of money because she had a menial job

sweeping classrooms, but she made her impact on

the world by collecting all the discarded pencils and

erasers and stuff and giving them to children who

could not afford them. Maybe one of them would be

the next literary star or great artist, who knows? She

probably would never know though.

This all reminds me of that part of chaos theory

called the butterfly effect, which says that if a

butterfly flaps its wings in one part of the world, it

could cause a hurricane in another because all of us,

and everything in the world, are somehow linked. If

we are aware that every single action we carry out,

every word spoken and every thought we think (both

positive and negative) have a bearing on the world

around us, I think it would change the way a lot of us

do things, interact with each other and even think.

So whoever is reading this and maybe feels they

haven’t made much of a difference in life or asks

themselves what the point is of going through the

often mundane process of living (I’ve been in these

places before), just think about this for a while. I

guarantee you, your life has more of an impact on

those around you, and maybe even on people you

don’t know, than you may think….

Here’s a link to my DW website, where I have a blog

(I’ll put this article there too): https://dissectingwobbles.co.za/

"No act of

kindness

however small

is ever

wasted"

45


Sandra’s thoughts on…

When life gives you lemons make lemonade

By Sandra Bredell (MSW)

You are all familiar with the proverb, “When life gives

you lemons, make lemonade”, but what does it mean?

It is hereby suggested that it means taking the bad

and the difficult in life and turning it into something

enjoyable, uplifting, and positive. It also refers to being

encouraged to adopt a positive “I can cope” attitude,

amidst adverse circumstances.

Since March this year the people of South Africa

have faced a period of uncertainty, anxiousness and

unemployment as a result of job losses, fi nancial

challenges and loneliness due to staying at home

as mandated by the lockdown to curb the COVID-19

virus. Across the world, people have had to adjust

to a “new” normal when leaving the house, buying

groceries, and seeking medical attention and

medicines. According to Pillay (cited by Cleary, 2020)

the COVID-19 pandemic has caused an “emotional

tsunami”, where people have experienced extreme

emotions of uncertainty due to feelings of “not knowing

what is going to happen”. This can leave us to dwell

in feelings of panic, hopelessness, frustration and to

spread negativity. We can choose to spend our energy

on these feelings or we can choose to maximise our

resilience and see this as a time for self-refl ection and

growth as a person. To do this, we will have to decide

to let go of what we cannot control and be thankful for

what we have. The lockdown has not been just all bad,

as less gang violence and fewer alcohol-related deaths

have been reported, and stronger safety nets have

been established (Oliver, 2020).

But the challenge now is how to get through the

different levels of lockdown. Here are some quick tips to

keep you going and your mindset positive:

1. Keep to your daily routine

It is suggested that we keep to our daily routine as

much as possible and to our regular schedule of

doing things – such as daily chores, listening to music,

having meals at regular times, getting up and dressed

every day, and keeping to sleep routines. Structure your

day as usual and keep the environment neat and clean.

You can control your routine and keep order in your

environment, which will ensure that you feel more in

control).

2. Eat healthily and exercise

It is so easy to indulge in all kinds of comfort food,

but the fact is that these foods have no “germ-fi ghting

potential”. Rather eat more fruit, especially citrus fruits

and vegetables like sweet potatoes, spinach, and

carrots. Protein like lean meat and eggs is also

necessary to build a healthy immune system. During

the lockdown you will have enough time to prepare

meals from scratch and enjoy supper with your family.

Make the most of this. It is equally important to drink

plenty of water and stay hydrated. Engage in simple

physical exercises and stretches to maintain your

mobility. Mental exercise is just as important, and

playing games with family members can be fun.

Spending time in the garden and the sunshine boosts

mental health. Deep breathing exercises will keep

stress at bay.

3. Sleep and “me-time”

It is important to stay in your sleeping pattern and get

enough sleep. It is best to turn off your laptop and phone

at least an hour before bedtime. Listening to music will

have a calming effect and will help you sleep. “Me-time”

is very important for you to focus on what you need.

Everyone needs time to express their fears, to think

about experiences, to meditate, to read a book, to

journal about their feelings, and to spend time on

self-care. Be kinder to yourself and adjust to the “new”

normal of wearing masks and washing hands for your

safety and that of your loved ones. It is important to stay

connected to your loved ones, family and friends via

texting, phone calls and video calls.

46


4. Remain positive

Remember that you are not alone and that you can stay

emotionally connected with your signifi cant others and

friends. Maybe this is also a good time to get to know

your neighbour better and practise ways in which you

can support each other. We are in this together. Take a

break from the COVID-19 updates and do something

you enjoy. Stay informed about the COVID-19 situation

but only from trustworthy sources.

If you need someone else to talk to because you are

struggling to cope with the challenges of COVID-19

and the lockdown, please phone the Cipla SADAG

24-hour mental health helpline on 0800 456 789 or via

WhatsApp on 076 882 2775 between 9 am and 5 pm or

the social worker at the MDF.

And if you run out of ideas about what to do … make

lemonade. The basic recipe is as follows (Allrecipes,

©2020):

1¾ cups white sugar, 8 cups water and 1½ cups lemon

juice.

Bring 1 cup of water and the sugar to boil and stir until

sugar is dissolved. Remove seeds from the lemon juice

but leave the pulp. In a pitcher stir together the chilled

syrup, lemon juice, and the remaining 7 cups of water.

Enjoy, and until next time take care and be safe!

Sources:

Allrecipes. ©2020. Best lemonade ever. https://www.allrecipes.com/recipe/32385/best-lemonade-ever/

Cipla. 2020. Looking after your mental health during

the COVID-19 lockdown. https://www.cipla.co.za/cipla-

news/looking-after-your-mental-health-during-the-covid-

19-lockdown/

Cleary, K. 2020. COVID-19: The pandemic’s impact on

mental health. Spotlight (4 May). https://www.spotlightnsp.co.za/2020/05/04/covid-19-the-pandemics-impacton-mental-health/

Family Centre. 2020. 10 tips for taking care of your mental

health during the COVID-19 pandemic. (31 March).

https://www.familycentre.org/about/news/post/10-tips-

for-taking-care-of-your-mental-health-during-the-covid-

19-pandemic

Froedtert & the Medical College of Wisconsin. 2020. 8

ways to stay physically and mentally healthy during COV-

ID-19. (14 April). https://www.froedtert.com/stories/waysstay-physically-mentally-healthy-during-covid-19

Mental Health Information Centre. 2020. Surviving the

Covid-19 lockdown. (18 May). https://mentalhealthsa.

org.za/surviving-the-covid-19-lockdown/

Oliver, G. 2020. Six ways COVID-19 is changing South

Africa. The New Humanitarian (28 May). https://www.thenewhumanitarian.org/feature/2020/05/28/South-Africacoronavirus-positive-changes

Wikipedia. 2020. When life gives you lemons, make

lemonade. (Last edited 16 June). https://en.wikipedia.

org/wiki/When_life_gives_you_lemons,_make_

lemonade#:~:text=When%20life%20gives%20you%20

lemons%2C%20make%20lemonade%20is%20a%20

proverbial,into%20something%20positive%20or%20desirable

Life Lesson: #18

Don't let what you

cannot do interfere

with what you

can do.

-Johan Wooden

47


Healthy

Holistic Treatment for Symptoms

of Muscular Dystrophy

By Natural Health Practitioners of Canada

10 July 2019

Muscular Dystrophy is a neuromuscular disorder that can

affect anyone at any stage of life. There are nine types of

muscular dystrophy that affect different sets of muscles and

cause different degrees of muscle weakness.

The most common and severe type is Duchenne muscular

dystrophy, which affects about 1 out of every 3,500

genetically male children. Genetically female children can

carry the gene that causes muscular dystrophy, but they

rarely show symptoms of the disease. Early onset of

muscular dystrophy occurs between the ages of three and

five.

How Aquatic Therapy Can Help Muscular Dystrophy

Some people with muscular dystrophy may not be able to

access holistic treatments in a traditional setting due to

severe pain or mobility issues. Aquatic therapy is an effective

alternative to the conventional delivery of holistic practices.

Symptoms of muscular dystrophy include progressive

wasting of muscles, weakness, fatigue, pain, and loss of

function. Common signs of muscular dystrophy include poor

balance, frequent falling, difficulty walking, limited range of

movement, and drooping eyelids.

Progression of the disease varies from person to

person, but as muscles weaken over time it creates physical

limitations for the person affected. Some people with

muscular dystrophy may lose the ability to perform everyday

tasks, feed themselves, walk, climb stairs, or ‒ in extreme

cases ‒ breathe on their own.

While there is no cure for the disease, holistic heath [sic]

practices like aquatic therapy, qigong, and massage therapy

can help improve the quality of life for people with muscular

dystrophy.

Aquatic therapy allows holistic practitioners to practise in

a water environment. It works by releasing the burden of

gravity and reducing the effort required for some

application techniques, allowing the practitioner to deliver a

more focused treatment.

Aquatic therapy also reduces the motion and stress barriers

some clients may have, making it a great alternative to

traditional treatment for people with mobility issues and

pain. The buoyancy of the water and the decreased effect of

gravity allow clients to perform exercises and stretches that

would not be possible on land.

48


Healthy

Research has shown that aquatic therapy improves functional

mobility in patients with muscular dystrophy by improving

balance and coordination, protecting joints, and improving

muscle strength and endurance. These benefits support the

daily tasks the client performs and benefits their quality of

life and overall well-being.

How Qigong Can Help Muscular Dystrophy

Qigong is a centuries-old practice, dating back over 3,000

years. It is often referred to as movement meditation and

consists of a series of defined postures that are linked

together with slow, flowing movements.

Qigong focuses on physical strength conditioning, flexibility,

and resilience. The benefits of qigong include improved

cardiovascular, respiratory, circulatory, lymphatic and

digestive functions.

It is especially beneficial for people with muscular

dystrophy because the movements are low-impact and

adaptable to different mobility levels.

Massage therapy can help relieve pain and improve range

of motion by relaxing tight or contracted muscles. This

improves muscle function and can improve mobility in

people with muscular dystrophy.

Progressive muscle relaxation has also been proven to relieve

stress and anxiety, improve sleep, and lower blood pressure.

How Thai Massage Can Help Muscular Dystrophy

One of the most recommended ways to ease symptoms of

muscular dystrophy is to stretch. Stretching keeps joints

flexible and helps maintain the length and elasticity of

muscles.

Thai massage in particular is a great way to both stretch

the body and relieve muscle tension, making it effective for

increasing range of motion and maintaining mobility.

Article available at: https://www.nhpcanada.org/blog/articles.html?id=85&title=Holistic-Treatment-for-Symptoms-of--Muscular-Dystrophy-

Research has shown that Qigong may be useful as an

adjunct therapy for people with muscular dystrophy. It has

been shown to help maintain mobility and balance and slow

the rate of decline in general health in people with muscular

dystrophy.

How Massage Therapy Can Help Muscular Dystrophy

Muscular dystrophy causes the degenerating and weakening

of muscles and can be very painful. The disease also causes

muscles to stiffen and shorten, resulting in decreased range

of motion and mobility issues.

49


Healthy

The power of resilience

By Gerda Brown

When something goes wrong, do you bounce

back or fall apart?

When you have resilience, you harness inner strength that

helps you bounce back from a setback or challenge. If

you lack resilience, you might dwell on problems, feel

victimized, easily become overwhelmed or turn to unhealthy

coping mechanisms. Resilience won't make your problems

go away, but it can give you the ability to see past them, find

enjoyment in life and handle stress better.

If you aren't as resilient as you'd like to be, you can develop

skills to become more resilient.

Resilience is the ability to adapt to difficult situations. When

stress and hardship strike, you still experience anger, grief

and pain, but you're able to keep functioning. However,

resilience isn't about putting up with something difficult or

figuring it out on your own. In fact, being able to reach out to

others for support is a key part of being resilient.

If you'd like to become more resilient, consider these tips:

• Building strong, positive relationships with loved ones and

friends can provide you with needed support in good and

bad times.

• Make every day meaningful. Do something that gives you

a sense of accomplishment and purpose every day. Set

goals to help you look toward the future with meaning.

• Learn from experience. Think of how you've coped with

hardships in the past. Consider the strategies that helped

you through difficult times and let them guide your future

behaviour.

• You can't change the past, but you can always look

toward the future. Accepting and even anticipating change

makes it easier to adapt and view new challenges with less

anxiety. Remain hopeful.

• Take care of yourself. Tend to your own needs and

feelings. Participate in activities and hobbies you enjoy.

Include exercise in your daily routine. Get plenty of sleep.

Eat a healthy diet. Practice relaxation techniques.

• Be proactive. Don't ignore your problems. Instead, figure

out what needs to be done. Make a plan and take action.

Although it can take time to recover from a major setback,

traumatic event or loss, know that your situation can

improve if you work at it.

• When faced with a crisis or problem, it can be easy to

get overwhelmed by the things that feel far beyond your

control. Instead of wishing there was some way you could

go back in time or change things, try focusing only on the

things that are in your control.

Resilience is an important ability and something that you

can get better at with time. We so often forget about how

much power we have over our lives and our circumstances.

Developing a positive outlook, having a strong support

system, and taking active steps to make things better can go

a long way toward becoming more resilient in the face of

life's challenges.

“Resilience is knowing that you are the only one

that has the power and the responsibility to pick

yourself up.” – Mary Holloway

50


Breathing Problems

Healthy

By Vijaya Iyer

Muscular Dystrophy News Today

In muscular dystrophy, progressive weakness of respiratory

muscles can result in varying degrees of breathing difficulty.

One of the most important respiratory muscles is the

diaphragm, which sits just below the lungs and helps in the

process of inhalation, or breathing in, which supplies oxygen

to the lungs. The weakening of the diaphragm in people with

muscular dystrophy results in reduced oxygen intake and

decreased lung function.

Different muscles help in exhalation, or removal of carbon

dioxide. Contraction of muscles in the abdomen during

activity supports exhalation, while at rest, lung elasticity

aides in the removal of carbon dioxide. In muscular

dystrophy patients, the excessive workload on the lungs, due

to poor diaphragm function and the weakening of abdominal

muscles, hinders the elimination of carbon dioxide.

Weakness in the muscles of the upper respiratory tract, or

the nose and throat, causes difficulty breathing during sleep.

This makes muscular dystrophy patients, therefore, prone to

breathing problems while they are sleeping.

Respiratory muscles also support coughing, and their

breakdown causes coughing difficulties.

Scoliosis, or the abnormal curvature of the spine, affects

the structure of the chest wall, which also can contribute to

breathing problems.

Symptoms

Monitoring breathing and coughing ability are vital for

people with muscular dystrophy to support the early

identification and management of breathing problems.

Symptoms of breathing problems in MD patients include:

• Shallow breathing and snoring

• Difficulty sleeping

• Wheezing

• Shortness of breath, especially at rest

• A cold that lasts for more than 10 days

• Morning headaches

• Daytime sleepiness

Testing

When breathing problems are suspected, a trained pulmonologist

may perform a series of tests to determine the strength

of respiratory muscles to perform their function. These tests

include:

• Pulmonary function tests that are usually performed in

children over age 5

• Sleep studies to determine nighttime breathing patterns

• Pulse oximetry to measure oxygen levels in the blood

Treatment and management

The treatment plan to address breathing problems in people

with muscular dystrophy is based on the breathing symptoms

observed.

Children with muscular dystrophy are prone to respiratory

infections such as pneumonia. Therefore, it is recommended

that they receive pneumonia vaccination as a preventive

measure. For acute respiratory infections, antibiotic therapy

is prescribed.

Chest physiotherapy in consultation with trained respiratory

therapists, and the use of assistive devices such as vests, can

help in clearing mucus, and prevent recurrent infections.

Bronchodilators to open the airways can help in alleviating

wheezing. They can be delivered using an inhaler or

nebulizer.

Ventilation is useful for patients with respiratory failure or

hypoventilation (excessively slow breathing). Ventilation is

the use of a machine (a ventilator) that helps the individual

to breathe normally. There are non-invasive as well as invasive

ventilation options available. Non-invasive ventilation is

either through the nose, mouth, or full-face masks. Invasive

ventilation involves inserting a tube into the windpipe, either

through the patient’s mouth or nose, or through an incision

in the neck.

In some cases, surgery to correct scoliosis may be required to

relieve the pressure on respiratory muscles and ease breathing.

Article available at: https://musculardystrop

hynews.com/breathing-problems/?fbclid=IwAR1UHj

RTYZGiEd2GuIjqUpm02Mh5Wgj_b6CsUanV6DN-

BRw-KzoyrCtZXTAk

51


Healthy

7 Low Moments we’ll Experience

during COVID-19

(& How to Deal with Them)

By Tara Strickland

Originally published online by Elephant Journal,

8 May 2020

For most of us, when we rang in the New Year, COVID-19

wasn’t even a thought in our mind. Fast-forward a mere five

months later and it’s now a part of our daily lives. It’s almost

impossible to escape this shift in our reality.

And even though everyone’s being affected differently, I believe

we’ll all share a few of the same moments before the

pandemic comes to an end:

1. The moment we realize just how crazy this is.

Each of us has different levels of exposure to COVID-19, but

we’re all affected. I mean, just the word pandemic is enough

to spark the flame of anxiety in us. The moment comes

amidst us dealing with the illness of ourselves, in our family,

having hours cut at work, or losing a job altogether. Maybe,

it’s the weird feeling that pops up when we see people walking

around with masks and gloves on. Regardless of what

the experience is, we can all relate to the sense of going from

everyday life straight into level five of “Jumanji.”

It doesn’t matter who it is. It can be a friend, brother, or even

grandma. Make sure to call, text, video chat, or walk to the

next room over to connect with someone. COVID-19 affects

everyone in some way. Talking to a loved one helps us

realize we’re not losing it, and we’re also not alone during

this crazy time.

2. The “I don’t care” moment.

This happens sometime after we’ve adjusted (as much as

possible) to this new reality. We may find we have some

energy but don’t know what to do with it. Maybe, we’re

bored or feel like nothing we’re doing matters.

Tip: Exercise.

Exercise is a natural way to improve mood. Now hold

up. We don’t have to commit to an hour-long full-body

workout to benefit from exercise. Something as simple

as going for a walk, 10 minutes of yoga, or 20 minutes of

dancing still counts as exercise. It’s not about getting a

summer body or disciplining ourselves. Unless, of course,

that’s our goal (then, by all means, do the damn thing). The

point is to do something good for our body that helps to ease

the blah

feeling.

3. The “I can’t even” moment.

The extra stress from COVID-19 just adds to the list of things

we have to manage: our jobs, bills, family, and keeping our

household in order. Sometimes we need a small break from it

all to get ourselves together.

Tip: Meditate.

We don’t have to practice what most people consider to be

traditional meditation ‒ sitting cross-legged, and speaking

mantras. If we do have guru-level discipline, then definitely

go for it. But most of us will benefit from something like

a guided meditation on YouTube. Or even doing something

simple with complete focus may be of benefit.

Think of a ritual for making a cup of tea or doing breathwork.

The point of this is to get our minds to slow down. Focus on

the present instead of worrying about what to do next.

4. The “I have all the feelings, what do I do with them”

moment.

We are human beings. We have emotions. It’s normal.

Dealing with stress during a change can trigger a higher level

52


Healthy

of emotional response. And this too is normal (even though it

feels like it’s not). Sometimes we need to do something extra

to manage our emotions on our own.

Tip: Art and writing.

Art and writing have been used throughout history for

expression. We may not be the next Michelangelo or Edgar

Allen Poe, but we can create. Whether it’s painting, drawing,

journaling, or even cooking, we can use our emotions to fuel

our creativity. Even if it seems like something we have no

interest in ‒ we can’t knock it til’ [sic] we’ve tried it.

Anything is better than sitting around in dread staring at the

wall. And we may be pleasantly surprised at how it turns out.

5. The “Anywhere is better than here” moment.

This happens when we are completely fed up with being in

the same place. Whether we’re self-quarantined at home,

or circling from home to work to the store, and back again,

we’re done. We need a change of scenery; we need an escape.

Tip: Read.

Reading is one of the most straightforward ways to escape

from our environment (besides TV). If we’re tired of Netflix

or trying to cut our screen time down, we should consider

taking some time to read. If we’re a more visual person, there

are comics and graphic novels. Or if we’re not into fiction,

finding a book about a topic we’re passionate about might

hold our attention. And if we’re not willing to commit to the

length of a book, then short stories, articles, or blogs may be

the right speed.

6. The “I don’t want to get out of bed” moment.

This happens when we feel like it’s all too much. Enough

said.

Tip: Develop a minimal self-care routine.

I feel this. We don’t want to do a damn thing ‒ our motivation

to do anything is a big fat zero.

We can give ourselves a break by making a minimal

routine of self-care. The list should include three to five things

max. Feel free to borrow from my “barely sure if I still exist”

essentials list:

>> Take a shower while listening to music.

>> Brush teeth.

>> Change into clean and comfortable clothes.

>> Have a glass of something delicious like hot cocoa,

lemonade, or tea.

>> Listen to a guided meditation.

The list can be whatever is comforting but gets us to move

around for a bit. It’ll all feel better after. Trust me. When we

finish the routine, and the bed is still calling our name, get

some rest.

7. The “I’m about to lose my sh*t” moment.

Okay, we’ve done everything we can. But it just isn’t enough.

We are still overwhelmed by sadness, anger, and anxiety.

Tip: 10-minute rule.

This is the last resort technique. This is used when all other

stress-management methods haven’t worked.

Pick a place. Preferably alone. We give ourselves 10 minutes

to completely feel whatever emotion we’re experiencing.

If we need to curl up in bed and cry, do it. If it makes us feel

better to hit a punching bag (or a pillow), do it. If running out

to an empty field or forest to scream bloody murder helps,

then do it. But only for 10 minutes max. Doing anything full

force for 10 minutes is usually tiring.

This fatigue serves to replace the overwhelming emotion.

After 10 minutes, stop. Move on and do something calming

to end the exercise and provide some comfort. Stretch. Drink

a glass of water. Take a shower. Eat a snack.

But most importantly, let it go.

There’s never been a manual for how to best handle life ‒ and

COVID-19 has rewritten whatever guideline we thought we

had. The way we managed life before, may not be possible

at the moment. But it is still possible to make it through this.

We’re are [sic] doing our best with what we have at the

moment. I hope this serves as a reminder that we are not

alone in this fight.

Article available at: https://www.elephantjournal.com/2020/05/7-moments-well-experience-during-covid-19-and-tips-to-deal-withthem/?fbclid=IwAR1e4i7CmRJ_dk-txjFdWfBbJao-

1woQYMrHop388fes2Qt3FtWZFwHsBZEs

"Be thankful for what you have; you’ll end up having more.

If you concentrate on what you don’t have, you will never,

ever have enough." — Oprah Winfrey

53


Healthy

Winter Safety & Bone Health

By Parent Project Muscular Dystrophy

20 December 2019

With the official start of winter quickly approaching and

the icy weather already here, we want to remind your

family about the importance of safety, and also what to do if

and when accidents happen. People living with Duchenne,

especially those on steroids, are at risk for having weak

bones, a condition known as osteoporosis. Osteoporosis is

diagnosed when bones break with very little trauma, which

means they are more fragile due to low bone mineral density,

small bone size, or both.

Snow and ice can lead to unsafe, uneven surfaces, which

cause falls in the winter months. Falls are the most

common cause of long bone fractures, usually breaking

bones in the legs (i.e. femur, tibia, fibula). However, long

bone fractures can also happen after people with Duchenne

lose ambulation and can occur with very little trauma, such

as during a transfer or being lifted, or just being “bumped”

or injured with minimal pain or discomfort. Long bone

fractures, or significant bumps, put people living with

Duchenne at risk for Fat Embolism Syndrome (FES), a

life-threatening situation that requires immediate attention in

the emergency room and is a risk for losing ambulation. For

these, and many other reasons, it is important to stay safe.

Another type of bone fracture that can happen to people

living with Duchenne is a vertebral compression fracture.

When the bones of the spine (vertebrae) become osteoporotic

and thin, they may fracture without any trauma at all. This

type of fracture may be “silent,” or have minimal symptoms

at first; if left untreated, vertebral fractures are associated

with more vertebral fractures in the future and worsening

back pain.

For these, and many other reasons, it is important to stay

safe.

STAYING SAFE

It is recommended that you begin bone health monitoring

and fracture prevention at the time of diagnosis or at the

initiation of steroids. Here are some helpful hints:

It is important to stay safe to prevent falls, thus avoiding

fractures from happening. If your child is ambulatory, it is

important to keep shoes on most of the time to avoid slips,

keep paths in your house clear to avoid tripping, and watch

for overexertion. Children with Duchenne may get tired

more easily, and it is always a good idea to take a rest or use

mobility devices (scooters, etc.) when needed. Keep in mind

that some falls cannot be prevented despite every effort you

make.

If you or your child is not ambulatory, it is still important

to take safety precautions. This includes providing safe

transfers to chairs, beds, or in the shower. It is also important

to always wear seatbelts in wheelchairs, shower chairs, and

the car – if there is a seatbelt available on any device, use it!

As an extra precaution during the winter, it is advised that

ambulatory children, and caregivers who are assisting them,

wear “boot grips” (sometime called “Yaktrax”) on the soles

of the boots. They can help tremendously to avoid falls on

the snow and ice.

Weight-bearing exercises recommended by your doctor or

physical therapist (such as walking and standing as tolerated;

not to be confused with weight-lifting exercises) can help

your bones stay strong for a longer period of time. Ask your

doctor and physical therapist about safe exercises for arms

and legs.

54


Healthy

Calcium is a nutrient that strengthens bone. In addition,

vitamin D helps your body absorb calcium, and together

they help build and maintain bone. This is why it is

recommended to have adequate levels of calcium and

vitamin-D to optimize bone health. Annual assessments of

calcium intake and blood vitamin-D levels (via a laboratory

test called a “25-hydroxyvitamin D level”), and a dietician

can recommend nutrition modification if needed. Sometimes

it is not possible to get enough calcium in the diet, depending

on your or your child’s dairy intake. In such cases, a calcium

supplement may be recommended by your care team.

Monitoring you [sic] or your child’s bone health through

imaging tests can also identify osteoporosis and help you

to prevent fractures from happening. Children on steroids

should have a lateral spine X-ray at least every 1-2 years

to evaluate vertebrae health and to identify fractures of

the spine in their earliest stages, even before they become

symptomatic with back pain. Spine X-rays may need to be

repeated sooner if there is back pain.

In addition, a dual-energy x-ray absorptiometry (DEXA)

scans can also be done to measure bone density. DEXA

scans will produce a Z-score, which is a comparison of bone

density to “healthy” individuals of the same age. If the

Z-score is found to be declining, annual DEXA scans

will closely monitor any further changes in bone density.

However, if unable to have both imagining tests, it is

recommended to prioritize the lateral spine x-ray.

The current standard of care for treating osteoporosis in

childhood is IV bisphosphonate therapy (pamidronate,

zoledronic acid, or neridronate). The goal of bisphosphonate

therapy is to increase the density of the bones of the body,

including the vertebrae in the spine. Increasing the density

of bones puts you or your child at less risk for a fracture. For

adults, additional bone health therapies exist for bone health,

including those that promote additional bone growth

(Teriparitide) and prevent the breakdown and resorption of

bone (Denosumab).

WHAT TO DO IF YOU SUSPECT A FRACTURE

Due to the risk for femur fractures with low trauma, it is

important to know the signs and symptoms of a possible

femur or other leg fracture:

• Severe pain, which may worsen with movement

• Swelling of the leg

• Bruising of the leg

• Deformity or shortening of the leg

• Inability to walk (if ambulatory)

If you suspect a long bone fracture, such as the femur, it

is important to take prompt action. You should go to the

emergency room as quickly as possible to avoid harmful

risks such as infection, loss of ambulation, and Fat Embolism

Syndrome. Fat Embolism Syndrome, as mentioned above, is

a serious complication of fractures, and the emergency room

staff should be aware of this risk.

It is imperative you bring your emergency card or

download the PPMD app to show to the emergency room

staff. As with every emergency, you should contact your

neuromuscular specialist (NMS) so they are aware of the

condition. If you or your child needs surgery and you or your

child is on steroids, “stress steroid” coverage will be needed,

meaning that extra steroid will be given in order to help the

body handle the physical stress of the surgery.

There are both surgical and non-surgical treatment options

for fractures of the leg. The decision of which intervention

to undergo should include input from your neuromuscular

care team, as well as an orthopedic specialist. Factors that

should be considered include ambulation status, severity, and

location of the fracture.

[…] The above information was reviewed by Dr.

Leanne Ward, University of Ottawa, who is a pediatric

endocrinologist specializing in bone health.

Article available at: https://www.parentprojectmd.org/

winter-safety-bone-health/

TODAY IS A NEW DAY.

FRESH START!

THINK HAPPY THOUGHTS,

EXERCISE,

DRINK LOTS OF WATER,

DON'T JUST EAT,

FUEL YOUR BODY.

BE HEALTHY & HAPPY!

55


Cape Branch

Knit4Charity

Some lovely ladies who call themselves Knit 4 Charity kindly crocheted knee blankets and knitted beanies and

mittens to be distributed to our members. The Knit 4 Charity ladies and Dianne attended a lunch at the Rotary

Club of Goodwood where the handover took place.

We would like to thank them for the generous donation, which will help to keep the winter chills at bay.

56


Gauteng Branch

Making a difference one

step at a time!

Dear MDF

I would like to take this opportunity to thank you very

much for assisting me with repairing my wheelchair; it

was in a condition where I was unable to go anywhere.

Thank you to Chris from Wheelchairs on the Run for a

wonderful service; my wheelchair is fixed to perfection.

The Covid-19 is affecting my social life as now I'm stuck

in the house, and even when going to get my essentials

I'm not comfortable because of my weak immune

system, so that also affects my mental state. Because

I don't feel free going to the store or clinic, I have not

been able to attend the physio sessions, and that is

causing my muscle weakness. Using the mask is the

worst thing ever because of my respiratory health.

Thank you

Yours sincerely

Clara Moloi

Morning ma'am,

I would like to take this moment to say thank you to MDF

(Muscular Dystrophy Foundation) for everything that

they have done for me. I really appreciate it. I don't have

enough words to say to them. The day I received the

electronic wheelchair I got a faceshield also because

it was during COVID-19. The COVID-19 affects me by

stopping me from going to school. I feel happy to receive

the wheelchair so that I can be able to move.

Thank you so much MDF

Bridget Lebea

57


KZN Branch

Before Covid-19

OUR COVID-19 SUPPORT TO OUR PATIENTS

When Covid-19 hit the other countries globally during the latter part of 2019, like most of us we had never

thought it would take us by storm sooner than we expected. At the beginning of the year, whilst Covid-19 was not

taken as seriously as we take it now, and just before the pandemic could hit South Africa, our branch’s executive

committee sat around the table to discuss the branch’s strategic planning for the year, amongst other important

branch issues. Top on the agenda was a very important topic, and that was how we should budget for emergencies

such as this pandemic and what effect it could have on all of us. Our priority on the topic was to give immediate

attention to the way we manage our finances to ensure that, should we be faced with this pandemic, we

have funding to take care of our patients and the effects it could have on us.

Compliance remained an important factor for us on the understanding that the needs of our patients would be a

greater during a crisis than before. A decision was taken to redirect some operational funding to cover an emergency

plan whilst at the same time ensuring that our financial accountability remained our number one priority. It

was agreed to budget a one-off amount of R500 per patient should the need arise for emergency cash to assist

with purchasing medication, masks, sanitisers or groceries.

The decision taken by the branch executive committee to redirect some of our over-budgeted operational costs

to an emergency fund was indeed an excellent financial plan, as national lockdowns were announced mid-March

and have since been extended further.

During Covid-19

When the lockdowns were announced, our emergency plans were immediately implemented in April. The branch

had to follow lockdown protocols, and our day-to-day office continuity plan was implemented by working remotely.

Contact was made with other NPOs in Durban, who without any hesitation teamed up with us by providing

assistance with food hampers. Information was extracted from our branch back-up database to communicate via

emails and SMSs to all our patients and parent/guardians, requesting that the branch be contacted as soon as

possible so that we could check on their well-being and explain our support to them in respect of the Covid-19

one-off assistance.

The response was unfortunately not as high as we expected. This could be due to changes of contact numbers

or email addresses and the branch not being notified of the change in information. For the people we did receive

a response from, verification processes were conducted and the one-off amounts were deposited into their bank

accounts. Some parents opted for the food hampers, which were delivered to their homes by arrangement. With

the lockdown in place and travel restricted, we are grateful to all the essential service NPOs who were authorised

to travel to deliver the food hampers for us without any hesitation.

We are making an appeal to our patients and parents/guardians who are on the database in KZN and who have

not received the emails or SMSs to please contact our treasurer, Raj Mahadaw, on the emergency number 082

455 6399, so that we can assist you. You are also welcome to email us with your updated details. Our email address

is accountskzn@mdsa.org.za.

We seek your assistance in participating in the Casual Day 2020 sticker sale. Feel free to call our office on 031

332 0211 or email accountskzn@mdsa.org.za.

We trust that our assistance and support to you during this time of Covid-19 will mean hope.

58


SOMEONE I LOVE

Needs a Cure

Please Support

MUSCULAR DYSTROPHY

AWARENESS & RESEARCH

WE NEVER GIVE UP HOPE

Contact us for further information:

The term muscular dystrophy (MD) describes a disorder

that affects the muscles, resulting in progressive

wasting and weakness of the muscle. Symptoms may

appear at birth, in early childhood, or later in life.

Neuromuscular disorders affect not only the muscles

but also the nervous system.

Individuals of either sex and all ages

and ethnic backgrounds can be

affected by MD.

NATIONAL OFFICE

Tel: 011 472-9703

E-mail: national@mdsa.org.za

Website: www.mdsa.org.za

CAPE BRANCH

(Western Cape, Northern Cape & part of Eastern Cape)

Tel: 021 592-7306

E-mail: cape@mdsa.org.za

GAUTENG BRANCH

(Gauteng, Free State, Mpumalanga, Limpopo & North

West)

Tel: 011 472-9824

E-mail: gauteng@mdsa.org.za

KZN BRANCH

(KZN & part of Eastern Cape)

Tel: 031 332-0211

E-mail: kzn@mdsa.org.za

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