Summer Issue 62
05 MDF notice board
06 National news
10 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
24 Sunny side up
26 Online Quiz
27 MDF merchandise
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
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...
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
34 What research is being done?
37 Breaking news in research
C O N T E N T S
Muscular Dystrophy Foundation of SA
Tel: 011 472-9703
Fax: 086 646 9117
Managing Editor: Gerda Brown
Copy Editor: Keith Richmond
Publishing Manager: Gerda Brown
Design and Layout: Divan Joubert
Cover photo of Rudzani Mukheli.
(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.
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
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)
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: email@example.com
• Gauteng branch: firstname.lastname@example.org
• Cape branch: email@example.com
• KZN branch: firstname.lastname@example.org.
Subscription and contributions to
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
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
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.
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 email@example.com or
call 011 472-9703.
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..
Tel: 011 472-9703
Address: 12 Botes Street, Florida Park,
Banking details: Nedbank, current
account no. 1958502049,
branch code 198765
CAPE BRANCH (Western Cape,
Northern Cape & part of Eastern
Tel: 021 592-7306
Fax: 086 535 1387
Address: 3 Wiener Street, Goodwood,
Banking details: Nedbank, current
account no. 2011007631,
branch code 101109
GAUTENG BRANCH (Gauteng,
Free State, Mpumalanga, Limpopo
& North West)
Tel: 011 472-9824
Fax: 086 646 9118
Address: 12 Botes Street, Florida Park,
Banking details: Nedbank, current
account no. 1958323284,
branch code 192841
Tel: 012 323-4462
Address: 8 Dr Savage Road, Prinshof,
KZN BRANCH (KZN & part of
Tel: 031 332-0211
Address: Office 7, 24 Somtseu Road,
Banking details: Nedbank, current
account no. 1069431362, branch
General MD Information
Tel: 021 794-5737
Tel: 011 472-9824
Win van der Berg (Support Group)
Tel: 021 557-1423
Jan Ferreira (Support Group –
Cell: 084 702 5290
Tel: 012 667-6806
Cell: 082 608 4820
Charcot Marie Tooth (CMT)
Cell: 079 885 2512
Tel: 012 664-3651
Cell: 083 66 66 270
Friedreich Ataxia (FA)
Cell no: 084 405 1169
Tel: 011 802-7985
Spinal Muscular Atrophy (SMA)
Tel: 011 640-1531
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
Cell: 082 499 9384
Donate in a
MDFSA now has a Snapcode to make
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
• 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
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
MUSCULAR DYSTROPHY FOUNDATION OF SOUTH AFRICA
ANNUAL GENERAL MEETING
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
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
• Gauteng Branch: PO Box 605, Florida Hills, 1716 or email Robert at
• KwaZulu-Natal Branch: PO Box 510, Durban, 4000 or email Nomfundo at
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
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.
Number of people attending:
Nominees for Executive Committee:
If you are unable to attend, please fill in the following section:
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.
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.
• Disinfectant Spray (like Lysol)
• All–Purpose Cleaning Spray (like 409)
• Mild Dish Soap and Detergent
• Compressed Air Can Duster
• Microfiber Towel
• Cleaning Brush
• Wire Brush
• Non-abrasive Wax
• Tire Cleaner
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
• 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:
• 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
How to Dress to Impress with Adaptive
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
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.
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
5 Steps to Dressing Stylishly for People with
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
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
• 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
• 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
• 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
• ABL Denim
• Able 2 Wear
• Ag apparel
• Brt Adaptive
• Disabled Gear
• Downs Designs
• Endless Abilities Jeans
• IZ Adaptive
• Kathy D Woods
• Koolway Sports
• Liz & Ett
• Rolling Elephants
• Rolli Moden
• Rollin’ Wear
• Ross Daniel Adaptive Apparel
• Simple Closures
• Shoes of Prey
• USA Jeans
*Check out Cur8able.com for discount codes to some of the
How to Advocate for more Disability-Friendly Fashion Options
• 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.
• Tommy Hilfiger’s Runway of Dreams Line ( a kids
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
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
• 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
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/
Wheelchair Maintenance Checklist
• 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.
• 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
• 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
• 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
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
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
• 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)
• 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
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
• Tire Pressure – Check tire pressure before checking the
• 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.
• 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
• 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
• 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.
• 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
• 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
• 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
Article available at: https://shriver.umassmed.edu/sites/
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
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:
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.
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.
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
• Progression: Boys between 11 and 25 can begin to show symptoms, and it is often non-ambulatory by the
mid-thirties or later.
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.
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
Most often caused by a genetic defect in muscle fi ber proteins but can sometimes affect the central nervous
• 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.
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
• Progression: Symptoms usually reveal before age 60 and progress slowly. Some become non-ambulatory.
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.
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
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
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
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.
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
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
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.
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
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
Article available at: https://www.marijuanadoctors.com/conditions/muscular-dystrophy/
A STEPPING STONE INTO
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
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
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
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."
Bank: Nedbank, Current account
Acc no: 195 850 2049
Branch: Gauteng West
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
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.
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.
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 firstname.lastname@example.org and we will post your feedback on our social media
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!
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
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.
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
Please email your order and proof of payment to
email@example.com by 31 August 2020.
S-M & L-XL:
S-M & L-XL:
Please note that the delivery
charge is for your cost.
(500 ml) R50.00
(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.
- 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
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
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
motivated by his
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.
The word hangs in the air for an awkward
moment before the conversation moves
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
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
He also believes he can help others live better
Many people talk about making a difference, but
Hoffmann is doing it, and his plan goes well
beyond bringing more attention to muscular
“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.”
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
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
“The turnout and response already has been
incredible,” he says. “It’s going to be pretty
amazing what will happen over the next few
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
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,
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.
Article available at: https://www.golfchannel.
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
“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
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
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.”
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
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
“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
Article available at: https://strongly.mda.org/high-school-track-athlete-myotonicdystrophy-finds-stride-helping-others/
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,
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
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
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
Drug-based therapy to delay muscle wasting by
promoting muscle growth or mitigating damage due
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.
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
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
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
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/
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
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
Acceleron discontinues drug development for CMT ‒ 10
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
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
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
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
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/
LIFE IN THE TIMES OF
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.
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
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
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.
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.
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 firstname.lastname@example.org 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
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
• Prof Izelle Smuts (paediatric neurologist).
Department of Paediatrics, University of
• 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,
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.
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 email@example.com.
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.
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.
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
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
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.
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
• 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!
27 best out of waste ideas for creative kid's project. 2018. https://sheroes.com/articles/best-out-of-wasteideas/NjkzNw==
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.
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
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
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
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.
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,
1¾ cups white sugar, 8 cups water and 1½ cups lemon
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!
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-
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).
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.
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.
Life Lesson: #18
Don't let what you
cannot do interfere
with what you
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
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
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.
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
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
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
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.
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
• 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
• 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
“Resilience is knowing that you are the only one
that has the power and the responsibility to pick
yourself up.” – Mary Holloway
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
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
• Shortness of breath, especially at rest
• A cold that lasts for more than 10 days
• Morning headaches
• Daytime sleepiness
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
• 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
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
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
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
7 Low Moments we’ll Experience
(& 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.
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
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.
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”
We are human beings. We have emotions. It’s normal.
Dealing with stress during a change can trigger a higher level
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.
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
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”
>> 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
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-
"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
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
For these, and many other reasons, it is important to stay
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
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
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
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/
TODAY IS A NEW DAY.
THINK HAPPY THOUGHTS,
DRINK LOTS OF WATER,
DON'T JUST EAT,
FUEL YOUR BODY.
BE HEALTHY & HAPPY!
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.
Making a difference one
step at a time!
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.
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
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.
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
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
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 firstname.lastname@example.org.
We trust that our assistance and support to you during this time of Covid-19 will mean hope.
SOMEONE I LOVE
Needs a Cure
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.
Tel: 011 472-9703
(Western Cape, Northern Cape & part of Eastern Cape)
Tel: 021 592-7306
(Gauteng, Free State, Mpumalanga, Limpopo & North
Tel: 011 472-9824
(KZN & part of Eastern Cape)
Tel: 031 332-0211