MDF Magazine Newsletter Issue 60 December 2019

chikadee

Summer Issue 60

December 2019

Meet our ambassador, Vené van Rooyen


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DF

Magazine

05 MDF notice board

06 National news

10 MD information

MD INFORMATION

08 What’s the Difference between Muscular Dystrophy and

Multiple Sclerosis?

09 MD and Assistive Devices

12 Caregiving for Someone with Muscular Dystrophy

15 How to Talk to Your Child about Their Neuromuscular

Disorder

Events

18 Go Green for Muscular Dystrophy!

21The perfect time to make a difference

People

22 My Testimony

26 My Experience with FSHD

28 Young Budding Artist

Research

29 New Breakthroughs for Muscular Dystrophy Research

31 Ataxia UK Funds New Trial Investigating Non-Invasive

Brain Stimulation as a Potential Therapy for all Ataxias

Regular Features

32 Sandra’s thoughts on...hands

33 Doctor’s corner

34 The view from down here

36 On the spot, Scott…

37 Kiddies corner

Healthy Living

38 Diet and Nutrition

39 The Best Activities for Kids with Muscular Dystrophy

C O N T E N T S

Published by:

Muscular Dystrophy Foundation of SA

Tel: 011 472-9703

E-mail: national@mdsa.org.za

Website: www.mdsa.org.za

Publishing Team:

Managing Editor: Gerda Brown

Copy Editor: Keith Richmond

Publishing Manager: Gerda Brown

Design and Layout: Divan Joubert

Cover photo of Vené van Rooyen

Future Issues:

April 2020

(Deadline: 1 March 2020)

The Muscular Dystrophy Foundation

of South Africa

We are a non-profi t organisation that supports

people affected by muscular dystrophy and

neuromuscular disorders and that endeavours to

improve the quality of life of its members.


From The

Ringing in the New Year is cause for celebration and for spending time with friends

and family. As glasses are raised and fi reworks explode in the sky, it is important to

recognize the symbolism this holiday brings with it as a time of new beginnings; and

a fresh start also comes with time for refl ection.

How often did you think this past year, “I am doing everything I can but it seems like

my life is falling apart”? Challenges and heartaches in life are unavoidable. When

everything seems to be going wrong, remind yourself of these things:

• This too shall pass.

• There are still some things that are going right. Whatever is going wrong is only

a small percentage of your life.

• You have some control of the situation. Focus on managing what is within your

control.

• Ask for help.

• Much of what is troubling you won’t matter in a few years.

• You can handle tough situations.

• Something good will come out of it. At the very least, it’s likely that you will learn a life lesson.

• Accept what’s out of your control. Investing time and energy in trying to change things you can’t will cause you

to feel helpless and exhausted. Acceptance is one of the best ways to establish resilience.

• You have overcome past diffi culties.

• You need to take care of yourself. Get plenty of rest, have some exercise, eat healthily, and spend some time

doing activities you enjoy.

So, there are at least a few things you can do to help you remain in a positive frame of mind when your life seems

to be falling apart.

That being said, I wish you a magical and blissful holiday. Have a merry Christmas and a prosperous new year!

Thank you to everyone who has supported us this year. Without you the Foundation would not be able to provide

services to our very special members.

Until next year!

Regards

Gerda Brown

Muscular Dystrophy Foundation

We would like to wish you

a peaceful and relaxing Festive Season

and a prosperous New Year.


Subscription and contributions to

the magazine

We publish three issues of MDF

Magazine a year and you can subscribe

online to the magazine or by calling

your nearest branch.

If you have any feedback on our

publications, please contact the

National Office by e-mail at

gmnational@mdsa.org.za or call 011

472-9703.

Get all the latest news on the fight

against muscle-wasting conditions and

the latest research updates. It is our

editorial policy to report on

developments regarding the different

types of dystrophy but we do not

thereby endorse any of the drugs,

procedures or treatments discussed.

Please consult with your own physician

about any medical interventions.

If you are interested in sharing your

inspirational stories, please let us know

and we'll be in touch to discuss this

with you. The Foundation would love

to hear from affected members, friends,

family, doctors, researchers or anyone

interested in contributing to the

magazine. Articles may be edited for

space and clarity.

MDF SA database

If you know people affected by

muscular dystrophy or neuromuscular

disorders who are not members, please

ask them to contact us so that we can

register them on our database. If we do

not have your current e-mail and postal

address, please contact your branch so

that we can update your details on our

database.

How can you help?

Branches are responsible for doing

their own fundraising to assist members

with specialised equipment. Contact

your nearest branch of the Muscular

Dystrophy Foundation of South

Africa to find out how you can help with

fundraising events for those affected

with muscular dystrophy.

Fundraising

Crossbow Marketing Consultants (Pty)

Ltd are doing invaluable work through

the selling of annual forward planners.

These products can be ordered from

Crossbow on 021 700-6500. For

enquiries contact the National Office by

MDF ::

MDF support information

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

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

e-mail at national@mdsa.org.za or call

011 472-9703.

NATIONAL OFFICE

E-mail: gmnational@mdsa.org.za

Website: www.mdsa.org.za

Tel: 011 472-9703

Address: 12 Botes Street, Florida Park,

1709

Banking details: Nedbank, current account

no. 1958502049, branch code

198765

CAPE BRANCH (Western Cape,

Northern Cape & part of Eastern

Cape)

E-mail: cape@mdsa.org.za

Tel: 021 592-7306

Fax: 086 535 1387

Address: 3 Wiener Street, Goodwood,

7460

Banking details: Nedbank, current

account no. 2011007631,

branch code 101109

GAUTENG BRANCH (Gauteng,

Free State, Mpumalanga, Limpopo

& North West)

E-mail: gauteng@mdsa.org.za

Website: www.mdfgauteng.org

Website: www.muscleriders.co.za

Tel: 011 472-9824

Fax: 086 646 9118

Address: 12 Botes Street, Florida Park,

1709

Banking details: Nedbank, current

account no. 1958323284

branch code 192841

Pretoria Office

E-mail: swpta@mdsa.org.za

Tel: 012 323-4462

Address: 8 Dr Savage Road, Prinshof,

Pretoria

KZN BRANCH (KZN & part of

Eastern Cape)

E-mail: kzn@mdsa.org.za

Tel: 031 332-0211

Address: Office 7, 24 Somtseu Road,

Durban, 4000

Banking details: Nedbank, current

account no. 1069431362

branch code 198765

General MD Information

Cape Town

Lee Leith

Tel: 021 794-5737

E-mail: leeleith@mweb.co.za

Gauteng

Rabie Modisane

Tel: 011 472-9824

E-mail: rabie@mdsa.org.za

Duchenne MD

Cape

Win van der Berg (Support Group)

Tel: 021 557-1423

KZN

Maxine Strydom (Support Group)

Tel: 031 762-1592

Cell: 083 290 6695

Gauteng

Jan Ferreira (Support Group – Pretoria)

Cell: 084 702 5290

Estelle Fichardt

Tel: 012 667-6806

Christine Winslow

Cell: 082 608 4820

Charcot Marie Tooth (CMT)

Hettie Woehler

Cell: 079 885 2512

E-mail: hettie.woehler@gmail.com

Facioscapulohumeral (FSHD)

Francois Honiball

Tel: 012 664-3651

Barry Snow

Cell: 083 66 66 270

E-mail: barry.snow@worleyparsons.

com

Friedreich Ataxia (FA)

Linda Pryke

Cell no: 084 405 1169

Nemaline Myopathy

Adri Haxton

Tel: 011 802-7985

Spinal Muscular Atrophy (SMA)

Zeta Starograd

Tel: 011 640-1531

Lucie Swanepoel

Tel: 017 683-0287

5


National

Good bye Theuns & Suretha

Some people come into our lives and quickly go. Others stay awhile and make footprints in our hearts, and we

are never, ever the same.

We are sad to say farewell to Theuns Langenhoven and Suretha Erasmus. Theuns and Suretha served on the

Gauteng Branch Committee and the National Executive Committee for many years. During these years they have

provided us with invaluable support, and through their encouragement and guidance we have been able to grow

significantly as a non-profit organisation.

We wish them every success in all their future endeavours.

Dear Suretha

It is with sadness for the Foundation that I hear you and your family are off to New Zealand.

Greener pastures you could not wish for! I know New Zealand well and I am assured that you and your family will

be so happy there. I have family in Wellington, Auckland and Papamoa! The Kiwis are very lucky to have you!

Thank you so very much for the interest and input you made to the Foundation and the Gauteng Branch. I especially

enjoyed your enthusiasm for the “Rovos Rail Raffle for MDF” and hope it will take off soon.

All the very best for your new adventure and kindest regards

Lee

Dear Theuns

It is with sadness that we say goodbye to you from the Foundation.

I have to say that your presence on the Exco and as chairman steered us through rocky times and then better and

good times. Your interest and ingenuity had a very steadying influence on the Foundation and its Exco members and

branches. I for one felt most reassured by your input. The Foundation has been blessed by having your commitment

in remembrance of Ilse, and I thank you for that.

May I wish you and your family all the very best of luck and blessings on your new venture in England.

With kindest regards

Lee

Casual Day is South Africa’s foremost fundraising project for persons with disabilities. Every R10 raised

for a sticker is important as this is how we raise funds that provide material relief for persons with

disabilities and promote their right to accessibility, education, housing, employment and full

integration into society.

On behalf of the National Executive Committee of the Muscular Dystrophy Foundation of South Africa,

please accept our sincere appreciation for assisting us in this campaign.

Support of the Muscular Dystrophy Foundation makes it possible to provide a service and

support structure to families affected by this life-changing and often fatal disease.

6


National

Meet our ambassador, Vené van Rooyen

Vené van Rooyen comes from a small village in the beautiful Mpumalanga. She

started her modelling career at a young age. She's a heartwarming young woman,

living her everyday life with family, and she enjoys spending as much time as

possible with family and friends.

She did not start her modelling career just to win pageant crowns and sashes. She

started this to build her own platform from which to help others more than she

could before, and to inspire women everywhere to believe that true beauty lies in

everyone.

Vené is very active and goes to gym every day to maintain her figure. Apart

from going to gym Vené enjoys her life as a professional model, holding two

international titles, namely Miss Scuba South Africa and Miss Magnificent

Women Icons (MWI) South Africa. She jetted off to Malaysia on 1 November

2019 to represent South Africa at the Miss Scuba International pageant. She will

also be going to Las Vegas, Nevada, in March 2020 to represent South Africa at

the international pageant for MWI.

Vené believes firmly that a true queen is not someone who has never lost but

someone who has never stopped trying.

She is very passionate about muscular dystrophy because her grandfather and aunt were diagnosed with the condition,

and while growing up she saw what this disease does to affected people.

Thank you “find the gap” for developing our new member database.

We are most grateful for your support!

www.findthegap.co.za

7


MD

What’s the Difference between Muscular

Dystrophy and Multiple Sclerosis?

Medically reviewed by Nancy Hammond, MD on January 9, 2019 —

Written by Scott Frothingham

Overview

Muscular dystrophy (MD) is a group of genetic disorders that gradually weakens and damages the muscles.

Multiple sclerosis (MS) is an immune-mediated disorder of the central nervous system that disrupts communication between

the brain and body

MD vs. MS

Although MD and MS may look similar on the surface, the two disorders are very different:

Muscular dystrophy

MD affects the muscles.

Caused by a defective gene involved with making proteins

that protect muscle fibers from damage.

MD is a cover term for a group of diseases, including:

Duchenne muscular dystrophy; Becker muscular dystrophy;

Steinert’s disease (myotonic dystrophy); ophthalmoplegic

muscular dystrophy; limb-girdle muscular dystrophy; facioscapulohumeral

muscular dystrophy; congenital muscular

dystrophy; distal muscular dystrophy

Different forms of MD weaken different muscle groups that

can affect breathing, swallowing, standing, walking, the

heart, joints, facial, spine, and other muscles and, thus, body

functions.

MD can be life-threatening.

Symptoms of the most common type (Duchenne) start in

childhood. Other types can surface at any age, from infant

to adult.

MD is a progressive disorder that gradually worsens.

MD has no known cure, but treatment can manage symptoms

and slow progression.

Multiple sclerosis

MS affects the central nervous system (brain and spinal

cord).

Cause is unknown. Doctors consider it an autoimmune disease

in which the body’s immune system destroys myelin.

This is a fatty substance that protects brain and spinal cord

nerve fibers.

A single disease with four types: clinically isolated syndrome

(CIS); relapsing-remitting MS (RRMS); secondary progressive

MS (SPMS); primary progressive MS (PPMS)

The effects of MS are different for everyone, but common

symptoms include issues with vision, memory, hearing,

speaking, breathing, swallowing, balance, muscle control,

bladder control, sexual function, and other basic body functions.

MS isn’t fatal.

According to the National Multiple Sclerosis Society, the average

age of clinical onset is 30–33 years old, and the average

age of diagnosis is 37.

With MS, there can be periods of remission.

MS has no known cure, but treatment can relieve symptoms

and slow progression.

Takeaway

Due to the similarity of some of their symptoms, people might confuse muscular dystrophy (MD) with multiple sclerosis

(MS). The two diseases, however, are very different from [sic] how they affect the body.

MD affects the muscles. MS affects the central nervous system. While MD is life-threatening, MS is not.

At this point in time, there’s no known cure for either condition, but treatment can help manage symptoms and slow disease

progression.

Article available at: https://www.healthline.com/health/ms-vs-md


MD

MD and

Assistive

Devices

By Health News - Jul 7, 2015

If you have muscular dystrophy (MD), take heart. There’s

a wide variety of assistive devices to help you live more independently

and comfortably. What’s more, innovative technology

is radically changing the lives of people living with

MD and other neuromuscular disease.

As MD is a progressive illness, your need for assistive devices

will change over time. This is why it’s important to

get expert advice from an occupational therapist (OT) or a

physical therapist in your health-care team. They’ll be able

to assess your specific needs and situation, and recommend

the most appropriate aids to enhance your independence and

make your life easier and safer.

Since there are so many assistive devices available, this

article will only outline the most common ones. These include:

• Orthopaedic devices

• Mobility devices

• Other devices to aid everyday living activities

• Assistive technology

Remember to ask your physical therapist or occupational

therapist for advice and recommendations on the most suitable

devices to meet your needs.

Orthopaedic devices

Many neuromuscular disorders such as MD result in weakened

muscles and joints, so you may find it helpful to use

an orthosis, a special body-support device. Orthoses are useful

because they enhance comfort, support the joints when

muscles weaken in certain positions, prevent contractures

and enhance joint, spine and limb movement.

Some of the most common ones include:

• An ankle-foot orthosis (also called an AFO) is a simple

plastic splint worn under pants or trousers. It aids walking

and prevents stumbling or tripping. This occurs when

muscles supporting the ankle joints become weak, making

it difficult to pick up the foot and walk properly.

• If you’re struggling to grasp eating utensils and other small

objects, a hand and wrist support is a good option. This is

available in different forms, including a wrist and thumb

splint to facilitate grasping and additional support to position

the fingers and make it easier to perform fine motor

movements such as writing. The familiar universal cuff

straps over the hand to support weakened hand muscles,

making it easier to grasp small items and objects such as

hairbrushes and cutlery.

• Neck and shoulder supports such as slings can lessen pressure

on arm ligaments and muscles that weaken over time

together with shoulder muscles. A cervical collar helps to

support the head if neck muscles get weaker.

Mobility devices

• Power scooters: These mobility devices are available in

front-wheel or rear-wheel drive versions and maximise

functional independence. While they’re fairly lightweight

and you can disassemble and transfer them in your car, you

need good upper body strength to drive them.

• Canes and walkers: These devices can enhance your mobility

and reduce fatigue, a common problem in MD. If

your one leg is stronger than the other, you might find a

cane useful when walking, while a walker provides more

overall support and stability.

• Wheelchairs: There are two types of wheelchairs, manual

and power, each with their own features and benefits. Many

people with MD and other neuromuscular disorders use

wheelchairs to enhance mobility. They’re especially useful

for people who often stumble and fall, get fatigued when

they walk or avoid outings for fear of injury. But don’t just

buy any wheelchair – ask an OT to do a comprehensive

professional assessment first to find the most suitable one

for you.

If you’re able to position yourself easily in a wheelchair and

are stable in your upper body, a manual wheelchair is a good

option. It’s light and usually collapsible to fit easily into your

car.

In the later stages of MD, power wheelchairs are most suitable

if you’re unable to manually propel yourself forward.

These chairs are usually custom designed for a specific user

to ensure they’re easy to manage. A power wheelchair utilises

a joystick or other device that you can control easily, using

almost any body part you can move. Although they’re more

expensive than conventional wheelchairs, power wheelchairs

offer far greater independence and mobility, especially in

outdoor settings. You’ll need a special car ramp for a power

wheelchair as it’s not collapsible.

9


MD

• The popular ASL mini-proportional joystick is an example

of how modern technology is improving the quality of

life for people with limited mobility. You can operate this

thimble-sized device with a feather-light touch, even if you

have little strength or limited movement.

Equipment for activities of daily living (ADL)

From button hooks and oversized cutlery to innovative beds and

car-door openers, there’s a long list of simple assistive devices

to help you preserve the ability to perform daily tasks. Apart

from low- or high-tech electronic devices, many commonly used

items have been cleverly modified so you can cope with selfcare,

household and occupational tasks more easily.

Your OT will help you deal with your illness as it progresses by

recommending assistive devices so that you can remain independent,

mobile and functional. They will also show you how to

adapt your home or work environment as your needs change.

Here are just a few of the assistive devices to help people

with MD cope with increasing muscle weakness and

fatigue:

Adaptive devices focus on using unaffected or stronger

muscles to perform daily tasks more efficiently. These

include:

• Customised cutlery and dinnerware with oversized handles to

grasp more easily and utensils with an angled head that reduce

the dexterity needed to bring food to the mouth.

• Pens or pencils with an enlarged triangular grip or cylindrical

foam to position the fingers and lessen the strength needed for

legible writing.

• Doorknob adaptors and key holders to provide additional leverage

for opening doors or turning keys in a lock.

• Car door openers with strong plastic handles that use leverage

and grip instead of finger dexterity.

• Button hooks and zip pullers to make it easier to get dressed.

Home and work modifications include:

• Wheelchair or pedestrian ramps

• Widened doorways and wall hand rails

• Bathtub seats, walk-in showers and bathroom lifting equipment

to facilitate bathing and showering

• Innovative beds and mattresses designed for people with

limited mobility or who cannot change their positions while

sleeping, an important issue to prevent pressure sores. While

modified beds can be expensive, you can sometimes rent them.

Check with your doctor or therapists whether your health insurance

will cover this equipment if they give you a prescription

or letter stating that it’s medically necessary.

Ergonomic devices (e.g. arm rests, computer arm supports and

an easy-touch or hands-free mouse) will allow you to continue

working and be productive at home if you’re experiencing severe

weakness in your arms.

Communication: Apart from exciting technological devices,

people with MD can also benefit from numerous modifications

and accessories for telephones that make communication easier.

These include voice-activated systems, hands-free headsets and

large button adaptors for easier dialling.

Assistive technologies and MD

Technology, says Steve Spohn, an expert in gaming with

assistive technologies and disabilities is inescapable, and for

many people with progressive muscle weakness it keeps them

alive.

In a recent online article on the MDA website, Spohn, who

has spinal muscular atrophy, says that while different

neuromuscular diseases like MD progress at different rates,

eventually those with the disease all start losing mobility,

strength and/or dexterity. The upside is that assistance technology

“allows increased freedom, improved quality of life

and furthers independence”. While new technologies are

often expensive, Spohn highlights a few technologies that will

improve your life if you have MD, but which won’t break the

bank.

• If you have mobility and some hand strength, the Apple iPad

offers a host of apps to enable multitasking and adapt the

device to your specific abilities. For example, if you find it

physically difficult to hold a book, you can upload books to an

iPad. An Amazon Kindle is another option. These devices can

also be mounted onto wheelchairs.

• The Ubiquitous Computer (Ubi), described as “the ultimate in

security and independence” for people with restricted mobility,

is a voice-activated computer assistant. Similar to the ones

your [sic] find on newer smart phones, the plug-in Ubi device

accesses the Internet via Wi-Fi. At the sound of your voice,

you can control the lights, phone, TV and thermostat without

pressing a button.

• With the unlimited range of assistive PC technologies available

to maximise your personal computer, you need never

worry about not being able to communicate. Dragon NaturallySpeaking-12

voice recognition software enables the user to

speak into a microphone and control a PC without lifting a

finger. With voice recognition integrated into many cars and

devices, Dragon is now capable of up to 99% accuracy.

• Available soon is Google’s Project Glass computer eyeglasses.

They have an overlay imbedded in the glass lenses themselves

that looks identical to your smart phone. If you have weakness

in your arms, hands and fingers, you’ll be able to “wear” your

smart phone and operate it by speaking, instead of fiddling

with small buttons on a hand-held device. Voice command

will enable you to perform a multitude of functions such as

browsing the internet, taking pictures and calling friends.

Sources:

1) MDA Online article: Spohn, S, “Assistive Technologies.”

Link: Quest Vol. 20, No. 2

2) Muscular Dystrophy Canada: Website link: http://muscle.ca/

living-with-muscular-dystrophy/mobility/

3) Muscular Dystrophy: Queensland (Australia) Website: Care

http://mdqld.org.au/neuromuscular-condition/care/

4) Muscular Dystrophy America (MDA): Website link: http://

mda.org/publications

Article available at: https://m.health24.com/Syndication/PDLA/

Conditions/Muscular/MD-and-assistive-devices-20140506

10



MD

Caregiving for Someone

with Muscular Dystrophy

By Colleen Doherty, MD

Updated September 26, 2019

Medically reviewed by Richard N. Fogoros, MD

Whether you are a parent, loved one, or a care professional,

caregiving for someone with muscular dystrophy requires

tremendous physical, mental, and emotional stamina, as

well as education about the disease and all it can entail. Do

your best to prepare yourself for what you may encounter.

Arm yourself with information that can help you provide the

best assistance to the person in your life with MD. Tap into

resources that can lend you a hand on your caregiving

journey. And, most of all, remember that you are not alone.

Seek support along the way.

Knowledge

Knowledge of muscular dystrophy can give you a sense of

control over what can be an unpredictable and challenging

experience as a caregiver.

If you attend an individual's doctor appointments, knowing

more about the disease can also help you ask questions on

their behalf and otherwise advocate for their care if they've

welcomed you to do so.

As you gather information from different sources—physicians,

websites, organizations, other caregivers and patients—keep

these fundamentals in mind:

• Remember that there are different types of muscular dystrophy.

What someone experiences can differ depending on

the type that they have.

• The primary symptom of muscular dystrophy is muscle

weakness, but other symptoms and complications can

arise. The severity of these can change in your loved one

over time. So, the care you need to provide today may not

be the care you need to provide tomorrow.

By knowing what could happen, you may be better able to

anticipate and respond to your loved one's challenges.

The rate of progression differs from person to person. Try not

to compare your loved one's experience to others.

Practical

If you are living with someone who has MD, you will likely

need to make some practical changes that can help make life

easier.

Home

You can help your loved one navigate his home more easily

by making some strategic changes. Though some may be

time-consuming and costly, they can have great benefits. The

Muscular Dystrophy Association (MDA) offers these and

other tips:

• Create a bedroom (and, if possible, a bathroom) on the

main floor of the house.

• Reduce struggling by placing items on low shelves or implementing

technology that allow your loved one to, say,

turn on lights with their smartphone.

• Add a ramp to avoid the need to use outdoor steps.

• Consider widening doorways to allow for easier passage

with a wheelchair, or install hinges that swing in and out.

• Opt for a shower chair or other accessibility products.

There are some that help not only your loved one [but] you,

the caregiver, such as lifting systems.

Getting Around

You can adapt your own setting to be more suitable for getting

around with MD, but you cannot change the whole

world around you. Get to know which areas around you are

accessible for people with disabilities. You may also consider

modifications to your car to make entry and exit easier, as

well as devices such as a cane or wheelchair, which can help

your loved one be a bit more stable when out and about (even

if they don't use them normally).

Financial Matters

When it comes to financial issues, support, encouragement,

and guidance from others who have been in a similar situation

can be helpful.

As you navigate health care, you may be faced with denials

of coverage by your health care plan. The process of advocating

for payment coverage and asking your healthcare providers

to resubmit claims for payments can be exhausting, but it

is well worth it and often pays off.

You may be able to get benefits and tax-deductions for outof-pocket

costs related to caregiving.

Be sure to save receipts. Familiarize yourself with […] state

tax rules and the specifications of your flexible spending account,

if you have one, and consider speaking with an accountant

or tax preparer.

12


Advocating For Your Loved One

In the school setting and in the workplace, there are more facilities

and benefits for individuals with disabilities than ever

before. However, despite this, you may need to advocate for

your loved one because not every school or work setting is

equipped or familiar with what your loved one needs (or, perhaps,

what they are legally required to provide).

[…]

Your role as an advocate can mean not only asking for accessibility

accommodations, but also taking the initiative to

show the school or workplace how the practical steps that you

are requesting can be taken.

Over time, your loved one with MD will learn how to advocate

for himself and will not always have to rely on you for

help.

Support

Caring for someone with muscular dystrophy—or any ongoing

illness—can be rewarding, but also tiring and isolating.

To manage the role of caregiver effectively and avoid burnout,

utilize the resources available to you.

Family and Friends

Whether you’re a parent caring for a child with muscular dystrophy

or a loved one caring for an adult, everyone needs a

break now and then. Often, family, friends, and even volunteers

within your community want to help, but they may not

know how to do so.

If someone is stepping in to help you provide care to the person

with MD:

• Be specific about your needs so that your helpers are aware

of the tasks that will be required of them when they pitch

in.

• Devise a schedule so that both the person with MD and

your respite caregiver have structure and an understanding

of how the day progresses from one activity to another.

• Make sure your emergency contact information is easy to

find so that helpers know how to reach you and other necessary

people if something unexpected should happen.

Consider other ways people can pitch in and ease your dayto-day

as well. For example:

Take a friend up on an offer to pick up something at the pharmacy

for you.

• Ask if someone can watch your other children for a bit to

give you a break from other caregiving responsibilities.

• Accept offers to cook your family a meal every now and

again.

• When family and friends step in to help you, don’t feel

guilty about receiving their aid; this is a time for you to

relax and self-nurture.

Outside Help

If possible, consider getting an outside (or live-in) personal

care assistant who can help the person with MD with bathing,

MD

going to the bathroom, getting in and out of bed, dressing,

and cooking.

You may also consider hiring a nurse (or even scheduling

willing volunteers) at night to watch your child or loved one,

so you can obtain uninterrupted sleep.

Often times, people find that outside help promotes independence

for both sides, which will likely be a welcome change.

[…]

Medical Team

Depending on the type of muscular dystrophy your child or

loved ones has [sic], there will be a need for healthcare appointments,

often multiple ones.

For instance, your child or loved one may have a regularly

scheduled physical therapy appointment, either at a clinic or

within your home. During appointments, be open to discussing

concerns and asking any questions you may have about

caring for someone with MD. While you may provide care at

home, you are not the only member of a person's care team.

Other potential healthcare appointments may include:

• Doctor visits (for example, paediatrician, neuromuscular

specialist, orthopedic surgeon, or a cardiologist)

• Those required for ongoing tests (for example, lung function

testing, bone mineral density tests, and X-rays of the

spine to check for scoliosis)

• Vaccination appointments (for example, the yearly flu shot

and the pneumococcal vaccines)

• Nutrition and genetic counsellor consultations

• Social worker visits to assess the need for ongoing services

like assistive devices, wheelchairs, ventilators, and lifts.

Self-Care

Self-care is extremely important as a caregiver. First, it's important

to care for your own body. This means ensuring you

are getting exercise, eating nutritiously, and seeing your doctor

for regular check-ups.

If you’re having difficulty finding the time to exercise or are

simply too exhausted, consider time-saving or less demanding

ways to fit fitness into your schedule. For example, you

can try TV-based, at-home workouts or go for long daily

walks in nature or at a local indoor track with your loved one,

if possible.

In addition to attending to your physical health, be sure to

care for your emotional well-being.

Depression is common among caregivers, so watch for symptoms

of depression like a persistently low mood, problems

sleeping, a loss or gain of appetite, or feelings of hopelessness

If you’re worried about depression, see your doctor or mental

health professional.

13


MD

As a parent, you may also feel a sense of guilt due to "giving"

your child a hereditary disease. This feeling is normal, and it

can help to talk about it with other parents. If your guilt does

not subside or leads to depression, be sure to seek professional

help.

To combat the stress and demands of being a caregiver, as

well as share the rewarding side, consider joining a support

group for caregivers. You may also consider engaging in

mind-body therapies that can promote relaxation and stress

relief, like yoga, or mindfulness meditation.

Although caring for a loved one with muscular dystrophy

isn’t easy, many do find a silver lining, whether that's gaining

a deeper, healthier perspective on life, becoming more spiritual,

or simply finding beauty in small, everyday pleasures.

Remain resilient and devoted in your caregiving journey, remember

to nurture your own needs, and reach out to others

for a helping hand.

Article available at: https://www.verywellhealth.com/caregiving-in-muscular-dystrophy-4155125


MD

By Wendy Henderson

Published in Muscular Dystrophy News, 11 May 2017

Finding out your child has a neuromuscular disorder is an

incredibly difficult time for the whole family, but you

adjust quickly. While your child’s unlikely to realize they’re

different from other children when they’re young, they’ll

start to question why they’re different from their peers and

siblings as they get older.

According to Muscular Dystrophy Canada, there will come

a time when you’ll need to sit down with your child and

explain their condition and what it means. There is no right

or wrong way to tackle this, nor is there any timeframe. It’s

generally best to be as honest as you can without overloading

your child with information they may not be mature enough

to process.

Usually, children with neuromuscular disorders will

notice they are slightly different from others at a fairly young

age. It’s advised to handle any questions as they occur.

Explaining how their condition will affect them as they age

may be stressful for both parents and child, but it’s important

that the topic is handled carefully and sensitively. Shielding

children from the truth may backfire if they find out why

they’re different or what their disorder means from others.

Your child needs to be able to trust you and look to you for

guidance.

Children need to know why their bodies don’t work in the

same way as other children’s, as well as what their future

may have in store for them. You can explain most disorders in

an easy-to-understand way that will help them grasp what’s

happening and give them the tools to explain their condition

to other people.

Explaining that their muscles don’t work properly because

they didn’t come with the right instructions or that the nerves

in their spine are sending the wrong signals are two easy

ways for children to understand the basics of why they can’t

do some of the things their friends or siblings can.

It’s essential that you take the time to reassure your child that

he or she has done nothing wrong and that it isn’t their fault

they have a neuromuscular disorder. They also need to know

that it’s OK if they sometimes feel sad or angry about their

situation.

Take time to focus on the positives in your child’s life and all

the things they’ll still be able to do, rather than concentrating

on the things they won’t be able to do because of their

disorder. Try to find some older children who have the same

disorder who are living full and active lives for them to look

up to.

Article available at: https://musculardystrophynews.

com/2017/05/11/talking-to-your-child-about-their-neuromuscular-disorder/

The Muscular Dystrophy Foundation of SA

would like to thank the National Lotteries

Commission for their support.

15


TRAVEL

KGALAGADI on WHEELS

My wife and I have been enjoying our national parks for more

than 20 years, becoming frequent visitors to Addo, Mountain

Zebra and the West Coast parks whilst also managing to take

in the Karoo, Bontebok, and Kruger parks as well as St Lucia

and Hluhluwe in KZN. There was however one park which

had eluded us ... the Kgalagadi.

Our circle of friends was almost evenly split between

those who thought we were quite insane to consider

visiting the Kgalagadi and those who encouraged us at every

opportunity to "just do it"! We were warned of very high daytime

temperatures, poor road conditions and dust, dust, plenty of

dust. Added to the issue of my disability limitations, we also

generated a fair amount of chatter around our motor vehicle,

a bog standard VW Tiguan in front wheel drive configuration,

which was deemed unsuitable. We heeded all of the warnings

and, arming ourselves with soft sand driving lessons, the

purchase of various puncture repair and towing gear together

with the advice to lower tyre pressure to 1.6 bar, supplies of

bottled water, atomisers and neck scarves for soaking therein,

we headed north.

You can therefore imagine our surprise on the first

morning in the park as we "splashed" through the game

entrance gate, with the windscreen wipers swishing back and

forth. We looked at each other thinking "the dry Kalahari?"

The conditions certainly did not dampen the spirit of the game

and we quickly found ourselves surrounded by soaking-wet

pronking springbok at Samevloeiing as they celebrated this

welcome change from the baking heat of previous weeks.

The rain quickly subsided and we were treated to days of

glorious sunshine, damp and dust-free roads and thankfully

lower temperatures. All of this combined to allow us to drive

with the windows down, filling the car with the smells and

sounds of the bush. This also meant that our game-watching

times could be extended to eight or nine hours each day,

starting at 6 a.m. and getting back to the cottage only after

2 p.m., and sometimes even including another late afternoon

excursion. Of course it also impacted the type of viewing

since the rain put a lot of water onto the roads and into the

bush. The waterholes were therefore very quiet and most of

our encounters occurred in the natural landscapes.

The naysayers didn't believe we would be able to make it

to Nossob but we nonetheless decided to give it a try, even

developing a liking for the silky-smooth sandy roads, free of

road and tyre noise. In Nossob we met up with a number of

Addo and Cape Town friends who were visiting the park at

the same time. All of them were driving 4x4s, and one couple

offered to guide us north to Polentswa to see just how far we

could go. We found out that the good road conditions allowed

us to reach as far as the picnic site of Lijersdraai, a beautiful

area of the park. Later in the trip, on the Auob river side, we

made it as far as the Dertiende Boorgat.

On our second afternoon in Nossob the proverbial heavens

opened and we experienced a massive rainstorm lasting for

nearly two hours, which flooded the campsite and created a

small moat around our chalet. This provided us with perhaps

the rarest sighting of all when we sat in the Nossob bird hide

(easily accessible) and watched the Nossob river flow by! It

was an extraordinary scene, followed a couple of days later

by the appearance of flowers in the veld on bushes which

days earlier had looked stone dead. We were really privileged

to witness this.

Since this was our first trip we probably covered more

kilometres than normal, averaging 160 km per day. Certainly

on future trips (and there will be future trips) we will probably

be spending more time at chosen destinations. For this trip,

however, the comfortable daytime temperatures (they never

16


TRAVEL

exceeded 35 degrees) and good road conditions allowed us

to go exploring and cover areas of the park we had never

imagined possible for us or our vehicle. The rains brought

water and mud into the equation, but those too were

manageable with deflated tyres and a bit of momentum!

We enjoyed wonderful sightings along both of the river

roads. Lions were never in short supply although they did

spend most of their time doing what lions do best, sleeping

under trees. The cheetahs were more accommodating and

we encountered them everywhere ‒ under one of the trees

at Melkvlei, prowling the open basin of Gemsbokplein, and

on a sand berm at Kaspersdraai, which was a really close

encounter. The giraffes of the Auob riverbed provided us

with endless entertainment as they strode majestically down

this sand superhighway or, much to our shock and horror,

galloped down the sand dunes, or chose to browse amongst

the trees, eye to eye with some rather startled sociable

weavers. We had countless sightings of gemsbok, springbok,

wildebeest, hartebeest, kudu, brown hyena and steenbok, and

even a fleeting glimpse of a badger!

The birdlife was a particular treat, even for a couple who

do not consider themselves to be dedicated birders. It would

be an understatement to say it was plentiful, with everything

from the little finches and weavers through to the hawks,

falcons, big crested eagles, secretary birds and about a

million kori bustards! The park literature indicates that there

are approximately 200 resident kori bustards. We think they

might have omitted a zero in the typesetting!

The landscapes were simply breathtaking! The open

riverbeds, red dunes, sprawling waterholes, gnarled trees,

rocky escarpments, and of course those expansive views

topped by huge thundercloud skies. Our wide-angle lens saw

a lot of use, and we even managed to try our hand at some star

photography of the crystal-clear, unpolluted night skies. And

the light ... that amazing Kgalagadi light, which seems to

mark every photograph with its unique stamp.

The disabled accommodation is adequate although

manageable only with assistance. The bathrooms were

equipped with grab rails and folding shower seats, but

SANParks still makes use of elevated toilet seats, which

hopefully will change as the units are upgraded, so I can

look forward to sitting on the loo with my feet actually

touching the ground! Access into the units was also manageable

although both Twee Rivieren and Nossob suffer from the

same problem of not having a paved parking area linking the

access ramp to the motor vehicle, which would allow for safe

transfer into and out of one's vehicle. It must be noted that

sand is a notable obstacle around the camp sites and something

which has to be taken into account when planning a

trip.

It has to be mentioned that the staff at Kgalagadi were most

helpful and when requested sought to make our stay as

comfortable as possible.

After twelve fantastic days we sadly had to depart,

feeling that we could quite easily turn the car around and do

it all again in a heartbeat. We had stepped out of our comfort

zone, tackled new ground and, thanks to the support and

encouragement of friends, had succeeded beyond our

expectations. A friend of ours had said that once we

experienced the red Kalahari sand between our toes we would

always want to return. He was certainly correct!

It was an outstanding trip, more an adventure than a

holiday!

17


Events

Go Green for

Muscular Dystrophy!

September was International Muscular Dystrophy

Awareness Month, which is an important time for all

persons affected by muscular dystrophy. In order to

celebrate this special month, the National Office

championed an online awareness programme called

“Get into the green scene” – green being the colour of

the muscular dystrophy ribbon. This campaign is our

signature social media event to recognise Muscular

Dystrophy Awareness Month. The campaign is designed

to stand out on social media by combining the event’s

official colour with an eye-catching image.

Affected members, their friends and family and various

corporates participated in the campaign by posting their

“green” photos on the MDFSA Facebook page. This

year we were joined by Cure Duchenne, Kenya, the

Foundation for Neuromuscular Support, Nigeria, and

Magg Biokenetics, Namibia in our fi ght against muscular

dystrophy on the African continent.

A special thanks to all our members, the MDF branches,

Wheelchairs on the Run, Newcastle Post Office, CE

Mobility, Sound Check SA and Millennium Primary

School for taking part in our campaign.

18


Events

The Cape Branch hopped onto the “Get into the green

scene” bandwagon in support of Muscular Dystrophy

Awareness Month to show our support towards persons

affected with muscular dystrophy. Our members joined

in on the auspicious occasion, and it was great fun. We

would like to thank each and every person who took the

time to join the campaign ‒ it is highly appreciated.

On 13 September 2019 the Gauteng Branch were invited to

raise awareness at Millennium Primary School with the Grade

7 learners. The awareness was about disability, and Kagiso

did a presentation on the topic “Let’s talk disability”, focusing

on the different types of disability and how to offer help to those

living with disabilities. Learners engaged with the topic by

answering questions posed to them during the presentation

and also by asking questions themselves. They also engaged

by taking part in the games that were played to increase

awareness of disability. The main objective of this awareness

raising at the school was to increase knowledge of disability

and muscular dystrophy. This allowed us to celebrate Muscular

Dystrophy Awareness Month with them, which they enjoyed.

We would greatly like to thank the Millennium Primary School

for allowing us the opportunity to present this event and share

our knowledge with them.

19


Events

The Muscular Dystrophy Foundation’s KZN Branch sets an

annual budget to commemorate Muscular Dystrophy Awareness

Month, held annually during September. This year the branch was

approached by the Sath Guru Samajim Ashram – a Hindu temple in

Montford, Chatsworth – to host the start of the awareness month at

their temple premises.

As 1 September 2019 fell on a Sunday, the day when the Sath Guru

Samajim Ashram have their weekly service and discourses, the

Ashram’s spiritual head, Guru Sagren Moodley, invited the branch

to hold the launch of the awareness campaign on site so that the

entire congregation could become aware of the condition and pass

on the information pamphlets to friends and relatives.

MDF KZN volunteers together with young members of the Sath

Guru Samajim Youth planned the event within a few days.

The day fi nally arrived, a beautiful sunny morning, and MDF volunteers

and executive committee members started setting up whilst the prayer service was in progress. The media

was also invited for the event. During the discourse session, MDF KZN executive committee member, Dr Pam

Rapiti, gave a very interesting talk on muscular dystrophy, focusing on the types of dystrophy and the medical

aspects, the challenges faced by patients and parents, and how the Muscular Dystrophy Foundation of South

Africa fi ts in as support.

MDF chairperson, Noel Pillay, and treasurer, Raj Mahadaw, were on hand to answer questions related to the

KZN Branch, donors, funding and the need for volunteers on an ongoing basis.

After the discourse session the congregation, including patients and parents, exited the main auditorium to

be met with the sight of green balloons and large wall banners with a collage of photographs of equipment

handovers, previous year-end events, and volunteers. The MDF KZN Branch gazebo, being the main

communication point, was the main attraction and provided a slide presentation with videos and photos of

previous branch events. Goody bags with free MDF bottled water, awareness pamphlets, deodorants,

shampoos and soaps sponsored for the branch were also handed out to the congregation in appreciation of

their presence and support to the KZN Branch. Casual Day and MDF KZN “My support means hope” stickers

were sold, and MDF KZN donation tins were also available for people to donate cash.

At 11h30 it was time to hand out the green helium-fi lled balloons, and each person in the congregation was

handed a balloon. At 11h45 Guru Sagren Moodley said a prayer in memory of all our patients who had passed

on, and the balloons were released together on the count of three by Raj Mahadaw. The chairperson, Noel

Pillay, thanked the congregation for their support and invited everyone to the dining area for a vegetarian lunch

and refreshments provided.

The feedback that the branch received from

the congregation was interesting and some

mentioned that they would like to see us again

next year.

A total of 300 Casual Day stickers were sold at

the awareness campaign launch.

The event was reported in the community

newspaper Rising Sun and the national

newspaper Post the following week.

20


Events

The perfect time to make a difference

The Discovery 947 Ride Joburg is an intimidating thought for most people, getting on a bicycle and staring

down 94.7 km of winding roads through the bustling and beautiful metropolis that is Johannesburg.

Now while this may be a tall order for many of us, the Muscle Riders approach it like an old friend. The

team came together across three days for different events. These were the kids’ race on 9 November, the

mountain bike race on 10 November, and the main event on 17 November.

Each event presented its own challenges, but like seasoned veterans the Muscle Riders overcame them all!

We are proud to say that our kids’ group grew to over 20 little champions this year, all of whom are making

a massive difference despite their young ages.

Ten brave souls took on the mountain bike event and proved to everyone that Muscle Riders are tough no

matter the terrain!

The annual Muscle Riders appreciation function was held on 16 November at the MDF Gauteng offices in

Florida Park. The day saw the team come together to meet one another and to collect the all-important race

packs. We would like to thank all who were involved to make the day a terrific success.

Then we all braced ourselves for the big day on 17 November. The weather was on our side and despite a

strong wind on sections of the course, 92 Muscle Riders completed the event.

We would like to thank each and every Muscle Rider, the Glencore Cycle Team and the Luso Cycle Club

for their tremendous efforts and dedication to making a difference and bringing hope to those affected with

muscular dystrophy.

A final word of thanks goes out to our sponsors this year, CE Mobility, Mitsubishi Electric and Spoormaker

& Partners, for their generous donations. Then to Foghound Studios for our beautiful TV advert and to DStv

Media Sales for the broadcast time, all free of charge. We thank you!

We will see you all in 2020, when we will continue to show who and what the Muscle Riders are made of!

21


People

My Testimony

By Yolande Brink

Someone once said that every person in life has a story to tell. By sharing my story I hope you

will be encouraged. It is a testimony to the grace and goodness of God. Doctors told my parents

many years ago that it was unlikely that I would live past my teenage years. I am now 44. Every

breath that I take is by the grace of God.

The past 20 years have progressively grown harder

and more challenging for me. Running this race that

has been set before me is not an easy one, and

I have to rely on Him for everyday life as I do not

have the strength to make it on my own.

This involves not thinking of tomorrow but

taking life one day at a time, trusting in the Lord

with all of my heart, and leaning on His grace

and mercy, He being the strength of my life. I’ve

asked many questions, shed many tears. Why

do some people have an easy race and some

such a difficult one? Maybe I will never have the

answer. But one thing I am most grateful for is that

my journey has drawn me closer to Jesus Christ.

Hebrews 12:1–3 (Amplified) states as

follows:

1 … stripping off every unnecessary weight

and the sin which so easily and cleverly

entangles us, let us run with endurance and active

persistence the race that is set before us, 2

[looking away from all that will distract us and]

focusing our eyes on Jesus, who is the Author

and Perfecter of faith [the first incentive for our

belief and the One who brings our faith to maturity],

who for the joy [of accomplishing the goal]

set before Him endured the cross, disregarding

the shame, and sat down at the right hand of the

throne of God [revealing His deity, His authority,

and the completion of His work].

3 Just consider and meditate on Him who

endured from sinners such bitter hostility against

Himself [consider it all in comparison with your

trials], so that you will not grow weary and lose

heart.

22


People

I was diagnosed with a rare combination of Becker

muscular dystrophy and rigid spine syndrome at a

young age. I had a normal childhood and young

adult life. At the time this disease was just a name

as it would lie dormant for about 25 years and then

manifest with full force.

It started with my struggling to climb up steps, walking

with a more pronounced gait, having stiff or rigid

neck and spine muscles, and losing breath easily.

Because of severe endometriosis, I was told that

the chances of my falling pregnant without in vitro

fertilisation would be very slim. Yet at 29 our

baby boy was born. A gift of God! This is when I

started noticing the effects of my muscular disease

in a more real way. Staying in a duplex at the time,

I found stairs more and more of a challenge. I could

not carry Joshua up and down them as I did not have

the muscle strength. I would tie him to my body with

a wrap as I slowly dragged myself up and down

between the nursery, kitchen and lounge. Many days

I would spend downstairs, not having the strength to

make it up the stairs. I learned to walk with God,

not leaning on my own strength but each and every

day, with full trust and confidence and reliance on

His goodness, strength and grace, pressing on to

finish the race set before me. But this was nothing

compared to what was to come.

I was able to work till the age of 40. Battling more

with mobility like walking and climbing stairs, I

found life a bit more challenging. Because of MD,

my spine, neck and respiratory muscles were

taking more strain. Because of the muscles going

rigid and my ribcage now being fused together,

which did not allow for them to expand and contract

during breathing, my lungs had only a 30% oxygen

capacity. My body did not have enough oxygen, and

my heart took strain. I suffered from sleep apnoea.

I was tired all the time, I moved with great difficulty

and I had numerous blackouts, which also resulted

in my having a car accident.

In July 2011 (I was 36 years old) I got sick. It all

started with the flu, then bronchitis. On Saturday 23

July 2011 I was booked into the Morningside clinic to

receive supplementary oxygen. On Sunday 24 July

I aspirated. My heart stopped beating and I stopped

breathing. For two hours the doctors worked

fervently, performing heart massages, and bagged

me to keep me alive. They could not get all the pipes

into my airway through my mouth and performed

an emergency tracheotomy. I was diagnosed with

double pneumonia and septicaemia. Not only was

I not breathing on my own, but my heart rate was

around 160 and I had fever way above 40 degrees.

Things did not look good. For the next nine days I

was in an induced coma. I was on life support and

had pipes and tubes everywhere. I started bleeding

through my nose, ears and mouth. And blood transfusions

were started on a daily basis. Through all

this my husband, John, mom, dad, sisters and close

friends were at my side all the time. People were praying.

E-mails were sent out and more prayer chains

started. My mom and dad went through a very

difficult and emotional time.

When I came out of the coma I could not speak

because of the tracheotomy and could not move

my body because of the loss of all muscle strength.

There was little chance of my breathing on my own

again. I would spend 45 days in ICU, in isolation. I

could not read the Word, and in this time the church,

family and friends who stood in the gap carried me

in prayer. My friend Sue came to visit on a regular

basis. She anointed my room and during every visit

we partook of communion and trusted God for healing.

Every day there was a slight improvement. I had

physiotherapy twice a day and I had to learn to walk

again. This was so hard. I could not turn myself

around in bed and had very little body movement.

I also had to learn to write again as the only way I

could communicate was by writing words on a piece

of paper.

But we serve a God of the impossible, and

although my faith was so small God remained

faithful. Through it all I learnt that God is our only

Refuge and Strength, and it does not matter who

you are or what you have in this life, what matters

is that you know the Lord and have an intimate

relationship with Him. Neither life nor death can

separate us from HIS love.


People

When I left the hospital in September 2011 it was

a time of great fear and uncertainty about what

would happen next. I did not know if I would make

it through the first night! With a permanent tracheostomy,

I now had to learn to rely on supplemented

oxygen and a ventilator to support my breathing.

I also had a full-time caregiver. Both John and

Joshua very quickly learned to support and look

after me. I also learned to speak with the trachea.

In November I went back to work. Things were different

though. I had to take my oxygen and suction

machines with me to help me get through the day. I

could no longer walk with ease, and moving around

was so much harder. My life became a testimony to

His grace and mercy.

One of the hardest things I had to deal with was

not being able to do as much as I would like to with

and for Joshua and John. Because of my physical

challenges, doing ordinary things like taking Josh

to soccer or a movie, or for a walk or swim, was

impossible. I stopped working in March 2016, when

mobility became too hard. I was fortunate to homeschool

Josh for three years.

It is now four years later and so much has changed.

The physical and emotional challenges I now face

have basically doubled. During this time, however,

I have to say that the grace and mercy of God have

been tangible and very real in our lives. God has

blessed us through many people and in many ways.

One of these is my son’s school, Andrews Academy,

who graciously took him under their wings with a

scholarship, as I could no longer homeschool or

work. Family support me in more ways than one,

and friends bless us often with meals and encouragement.

However, in May 2019, after several falls (when I

insisted on walking), I had an emotional breakdown.

This was a very hard time not only for me but also

for my family around me. I think I just gave up at the

time and could not take the pain and stress it placed

on my loved ones. The fight was gone. Something

inside me had died; maybe that was what is called

“dying to self”. I also lost interest in the things of the

world and struggled to find the beauty and purpose

of each day. I prayed fervently that the Lord would

just take me home. Now God has given me peace.

His will prevails, not mine. Although I desire to go

home and be with the Lord, I am here for a reason

for now.

Although I now notice my body deteriorating more

rapidly (2 Corinthians 4:16-18), my spirit becomes

stronger every day as I seek and draw close to my

Creator King, to Whom I belong with all my heart.

I am unable to walk anymore and am wheelchair

bound and unable to stand on my own without the

very real possibility of falling. I cannot stand up from

a sitting position without someone lifting me up. I

look at life differently now.

I am also now unable to do basic things I once

took for granted ‒ walking in the garden, bathing,

cooking or doing the dishes. Night times are quite

challenging as I am not able to get in and out of bed

without help, and I have to rely on others to turn me

over in bed. Belinda, my sister, bought me a bath lift

and hospital bed to make things a bit easier.

I look forward to the days when I can get out of

the house with John, just walking (well, in the

wheelchair) around the shops, and maybe stop for a

cup of coffee. John was retrenched and now works


People

from home and is around most of the time. I know

God has a plan in all this too, and I am so excited

and expectant to see what He is up to in John’s life.

I believe that He has a good and perfect plan, far

more that we can ever ask for or expect.

I am so blessed to have my family, especially my

husband and son, who daily help and support me.

I am so privileged to have been given these extra

years to see my son growing up and becoming a

young man. The greatest gift I have been given is

that Josh decided to surrender his life to the Lord

and be baptised in the Name of Jesus Christ. I know

that God has a great destiny and a plan for his life!

I have also stopped asking why. My main purpose

in life is that I now seek the Lord with all my being,

praising Him for Who He is. This world I am in is

fading and I look forward to the Kingdom of Heaven,

where I will dwell with Him for all eternity. I will receive

an immortal, perfect body with no pain or sickness

and indeed be able to run and dance and lift up

my hands! He has filled my life with His goodness

and mercy. I believe in divine healing, but if healing

doesn’t manifest here on earth, it will in heaven.

Many nights I just lie in awe in my bed, praising Him

for the love He has surrounded me with ‒ friends

who love me and pray for me, doing life with me, my

family, every breath, His Grace.

I have prayed many times that the Lord will take me

home; He still has a purpose for me in this world.

I may be “hidden” in the confines of my home, but

spending time in the secret place of the Most High

(Psalm 91) is the purpose of every day. His has taken

my heart captive and created in me an unquenchable

hunger and thirst for Him and Him alone.

Although MD and rigid spine syndrome are still very

real, they do not define who I am any more. JESUS

DOES. My greatest desire is to glorify God, knowing

that Christ Jesus will be magnified and exalted

in my being, spirit, soul and body, whether by life

or by death, as described by Paul in Philippians

1. So many times I have failed, and still His mercy

remains. I know that while I am still in this body,

and on this earth, there has to be a purpose for me.

Maybe it is praying for those around me, maybe it is

just sharing my story. But it is all HIS will, HIS glory

and not mine.

25


People

My Experience with Facioscapulohumeral

Muscular Dystrophy (FSHD)

By Madeleine de Villiers

order to make it easier to cope. Since my diagnosis

my husband, Francois, has been a huge help with

things that I cannot manage on my own. Without his

love and support I would be lost.

In 2015 I started experiencing lots of pain in my

shoulder and scapular area. This was strange and

new to me, as my mother’s symptoms were very

different. For years I battled with the pain and had

numerous neurology appointments in the hope of

learning how to deal with these symptoms, but

without success. The only advice the neurologists

could provide was to try pain medication, muscle

relaxers and physiotherapy. The problem for me

was that I could not afford medical aid and that

physiotherapy sessions are expensive. I also found

that not all physiotherapists know how to deal with

a person with FSHD. This year it was confirmed that

I have “severe” FSHD, as I battle with intense pain,

especially when sudden weakness takes place for

periods lasting up to six months.

I want to share my story with those suffering

physical pain because of facioscapulohumeral

muscular dystrophy (FSHD) or any other form of

pain – those who might feel helpless and lost or

that they have nowhere to turn. I found a practice

therapy that works for me called “Body Stress

Release”, which might work for you. I am also

writing this in memory of Mark Oberem, a Body

Stress Release practitioner, who became a

very dear friend to me before he passed on in

September 2018. Mark and I discussed writing this

article because we wanted to inform people in the

muscular dystrophy world of how they could achieve

a better quality of life when they suffer with pain.

After Mark’s sudden passing I just couldn’t find the

courage to write this but am now doing so with the

help of my new Body Stress Release practitioner,

Winston Wiggins.

Muscular dystrophy (MD) has been in my

family for three generations. My grandmother had

myasthenia gravis, and my mother and I have

FSHD. I was diagnosed in February 2014 at the age

of 26. Even though we expected this, it still came as

a shock. Today I have adjusted my way of life in

I was falling into depression at the beginning of

2017 owing to the pain. It got so bad that I could

not put any pressure on my arm and could not even

dress myself without pain shooting through my arm.

Physiotherapy, painkillers and muscle relaxants had

no effect. The severe pain caused sleeplessness

and I would wake up at 3 a.m. and stay awake for

hours in tears.

One morning I prayed and asked the Lord for

guidance. I remember standing in my kitchen at 6

a.m. and phoning my mother, telling her how much

pain I was in and that I felt lost. She then told me

about Body Stress Release and that I should give

it a try. And to my luck there was a practitioner in

Hermanus, Mark Oberem. So, keeping an open

mind, I phoned and went to see him, and as advised

I booked three sessions.

After starting my sessions with Mark everything

improved. My life became so much easier and the

pain stayed under control. Mark assisted me at any

hour, as pain has no clock and is unpredictable; he

even saw me on Sundays. When Mark suddenly

passed away on 15 September 2018, I was lost

once again and missed him greatly. He had brought

a big change to my life and was always there to

help, never complaining of his own pain after

surgeries he underwent.

26


People

After his passing, however, I found a new Body

Stress Release practitioner, Winston Wiggins,

who moved to Hermanus that same year. I am so

relieved as Winston assists me in so many ways,

although he offers his time only during appointments.

Winston also gives advice on how to take

responsibility for your body and wellbeing.

Body Stress Release assists the body to release

the stressed muscles causing pain and it promotes

self-healing. It has now helped me through three

major weakening stages. I asked Winston to explain

further (below) how Body Stress Release works, in

order for people to understand it better. I am sure

this will help many other people struggling with

pain.

How does Body Stress Release work?

(By Winston Wiggins)

Body Stress Release is a very gentle technique that

was developed in the 1980s by two chiropractors,

Drs Ewald and Gail Meggersee. They found that the

body responds very effectively to light but precise

pressure, rather than forceful manipulation that

often causes the body to into a protective state.

When one’s body is exposed to stress, whether

chemical, mechanical or emotional, the brain wants

to form a protective layer around the spinal column

by using the muscular system to protect the nerve

pathways.

The nerve pathways are the communication lines

between the brain and the body which the brain

uses to heal and maintain the body. Once the brain

stops communicating at optimum level it loses its

ability to heal and maintain the body. This results in

body pain and spasms.

With the person fully clothed and lying on a Body

Stress Release bed, the practitioner will find the

areas of stress along the spine and by applying

gentle but precise pressure, release the areas of

stress. Typically, it will take three sessions over a

ten-day period to release the stored tension. More

sessions might be required, since each person is

unique and responds differently. Once the main

areas of stress are released and you find balance

in life again, a maintenance schedule is worked out

in order to support the body in releasing built-up

stress and preventing the body from going into a

protective state again. Body Stress Release is

suitable for people of all ages, regardless of their

condition.

Those who want to see if a practitioner is

in their area (and to view their website and

video if available) can go to

www.bodystressrelease.com ‒ or contact

Winston Wiggins by phone on 065 23456 93.

27


People

Young budding artist

Puja Moonsamy is an 18-year-old beacon of

inspiration and hope from Centurion, South Africa.

She was diagnosed with a rare congenital muscle

condition called nemaline rod myopathy, which affects

her skeletal muscles and overall muscle strength.

Despite the challenges of having low muscle strength,

she is headstrong and leads a full and contented life.

She is a trendy young lady with a passion for creative

writing, visual arts, music and nature conservation.

Puja enjoys using apps and conventional paper and

pencil mediums in her artwork. Her favourite genres

are fantasy and children’s animation. She is also

committed to preserving the planet for future

generations.

These are just a few examples of her work.

These pictures can be printed as posters

in A3 and A4 size. Please contact Indira at

082 4968 379 for orders, prices and more

information.

28


Research

New Breakthroughs for Muscular Dystrophy Research

by Rachel Hatch, Illinois State University

A C. elegans worm expresses a calcium indicator molecule in its muscles. When muscles contract and calcium is

released, this molecule (called GCaMP) binds to it and emits light. This allows scientists to measure how hard the

muscles of the animals are working, and how fast calcium is released and cleared from the cell.

Credit: Illinois State University

A new study by Illinois State University's Andrés Vidal-Gadea

is breaking ground in the field of muscular dystrophy

research.

Published Tuesday in Proceedings of The National Academy

of Science of the United States of America, the study lays

out the success of Vidal-Gadea's lab in mirroring symptoms

of muscular dystrophy in an animal, the C. elegans worm.

"That had been a big snag in this research field," said

Vidal-Gadea, who noted the worms share two-thirds of the

same genes as humans, and build muscles the same way.

"No animal gets as sick as we do, so when you try to study

this disease and the animal doesn't get as sick, you cannot

make a lot of progress when studying this disease." The lab

managed to grow the worms where the gene was "broken"

with muscular dystrophy the same as it is in humans.

The innovative study, which is funded through the National

Institutes of Health, also pioneered new methods of studying

C. elegans in more natural environments, all with the aim of

seeing if exercise produces long-term beneficial effects for

muscular dystrophy patients.

"Rather than just grown on top of a petri plate, as is

tradition, we could watch them burrow," said Vidal-Gadea,

an assistant professor of molecular neuroethology, who

employs the worms in a variety of neurological studies. The new

method brought out the phenotype of the disease—or led to

the worms displaying the illness.

Students in the lab altered the exercise regime for worms to

mimic different activities. Some C. elegans simply sat near

food. Others swam to mirror high-frequency/low impact

exercise such as jogging. Still others burrowed through

gelatin to give the same effect as weight-lifting. Over time,

worms that exercised built up muscles at different levels, but

saw no change in the length of life or in the course of disease.

"It's unfortunate, but our interpretation is that the exercise

tested does not impact the course of the disease," said Vidal-

Gadea.

The work touches close to home for Vidal-Gadea, who

worked with patients with muscular dystrophy when he

was an undergraduate student studying at the University

of Victoria in British Columbia, Canada. At times, clients

who would try different methods of exercise could end up

worse off than when they started. "That was brutal to see.

They were trading their health for a chance to get better, but

there is nothing in the literature that is conclusive about what

helps," he said.

The failure is not in the exercise itself, but how the disease

operates, noted Vidal-Gadea. He compared muscles to the

engine of a car that provide force. "You can build up the

engine and gather more force," he said. "But the problem

isn't the engine, it's in how the force is transmitted. So just

building muscles alone is like trying to put a Formula 1

engine into a little Volkswagen bug when the transmission is

broken. You might just tear your car apart. Now, if you only

look at some of the parameters like maximal RPMs of the

engine, you may be led to believe that the treatment helped."

The three-year study will also help scientists better

understand the chain of events when humans develop

muscular dystrophy, and the symptoms that arise. "We know

that when people get muscular dystrophy, the gene is broken

and muscles die," said Vidal-Gadea, "but there are a lot of

things that happen in between that we don't know." He added

that piecing together the chain will give scientists a view into

29


Research

what damage is caused by the disease and what is sparked by

the muscles trying to fight back.

One step along the chain Vidal-Gadea's team examined

was the amount of calcium released in the muscles of those

battling Duchenne muscular dystrophy. "There is a buildup

of calcium that is released when the muscles contract,"

said Vidal-Gadea. "For those who have muscular dystrophy,

the amount of calcium released can be notably higher." The

study examined the changes in calcium as the worms moved.

"We can begin to see where and when the calcium in the

muscles becomes dysregulated. This gives us potential targets

to go after to make improvements for those with muscular

dystrophy.

Even more striking, in several cases, the students were able

to prevent dystrophic animals from developing signs of sickness.

"It was very few cases, and the illness did not go away,

but the C. elegans did not show any symptoms of it in their

actions," said Vidal-Gadea. "Our next steps will be to explore

what chain of events might have led to the reversal."

The lab will continue to work with the help of NIH funding.

Students involved include graduate, undergraduate, and high

school students, along with collaboration with individuals

at the University of Illinois and the Fred Hutch Center in

Seattle, Washington. "We use a wide array of techniques that

can be complicated," said Vidal-Gadea. "The work these students

are doing is propelling them in terms of research and

moving toward their goals of medical school or lab experience."

Article available at: https://medicalxpress.com/news/2019-

02-breakthroughs-muscular-dystrophy.html

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30


Research

Ataxia UK funds new trial investigating non-invasive brain

stimulation as a potential therapy for all ataxias

By Ataxia UK

For most ataxias there is no treatment available, but

recent studies have reported that applying a low electrical

current to the scalp may alleviate symptoms. This technique

is known as cerebellar transcranial Direct Current

Stimulation (tDCS). TDCS is a portable, painless, non-invasive

and easy-to-perform technique which induces activity

in the brain. Repetitive stimulations, for example on a daily

basis for two weeks, can induce longlasting effects.

Researchers in Italy have recently conducted a small pilot

study in patients with neurodegenerative ataxia to evaluate

the potential benefit of tDCS in reducing symptoms, with

very promising results. They delivered tDCS to the cerebellum

and the spinal cord for two weeks in a double-blind

study (i.e. some patients received real tDCS, while others

received placebo tDCS with the device switched off).

The people that received real tDCS showed a significant

improvement in cerebellar symptoms and quality of life

compared to those who received placebo tDCS. After

two weeks of tDCS treatment, this improvement could be

detected for up to three months.

tDCS (real treatment) versus placebo treatment. The

effects of tDCS will be assessed for three months. After three

months, all subjects will undergo an additional two weeks of

treatment with real tDCS, and effects will be further assessed for

another three months.

The project lead Barbara Borroni (right), from the

University of Brescia, tells us: “This project might open a

new avenue of therapeutic care for those with neurodegenerative

ataxia, and show whether multiple tDCS sessions are

able to delay progression of ataxia.”

Article available at: https://www.ataxia.org.uk/blog/ataxiauk-funds-new-trial-investigating-non-invasive-brain-stimulation-as-a-potential-therapy-for-al

This is the first time this technique has been tested in the

ataxias and it is now gaining interest from other research

groups around the world. The research team will soon

begin a second study in Italy to confirm and extend these

preliminary findings, which will be funded by Ataxia UK.

This time, they will include a larger number of patients and

will repeat the treatment after a three-month break to establish

if the effects of the treatment last on a longerterm basis.

People with Friedreich’s ataxia (FA), spinocerebellar

ataxia (SCA), or multiple system atrophy (MSA) will undergo

two weeks of treatment with cerebellar/ spinal cord

Thank you, e-TV for broadcasting our

advertisement, for the whole year, to create

awareness about muscular dystrophy.

We are most grateful for your support.

31


Sandra’s thoughts on…

having a safer vacation

By Sandra Bredell (MSW)

After a year full of all kinds of different experiences,

some of us are looking forward to having a well-deserved

break. Those celebrating Christmas will be visiting

their families and spending the festive season with

them. Others will spend some time at the beach or another

holiday destination to unwind. Then there are also

those who will spend some quiet time at home. Whichever

way you choose to spend your vacation, you need

to make sure that you and your loved ones are safe.

This is not to cause any panic or uncertainty but just

to make sure that you are prepared when a situation

comes your way.

With the 16 days of Activism coming up, you do not

need any reminder of the statistics of crime and violence

against women and children in our country. The

elderly and people with a disability are vulnerable and

can be an easy target for crime and violence. Again

please do not see this as a campaign to panic but rather

as a preventative measure to protect yourself. While

possibly spending more time in shopping malls and

visiting tourist attractions, you must be mindful of what

is happening around you. Although it is every person’s

human right to be safe and visit where they want to, you

also need to do what you can to be prepared and travel

responsibly (Vuk’uzenzele, 2019).

With that being said, it is equally important to do proper

research on where you plan to go. Does the place/facility

you are planning to visit accommodate people with

disability? Is it wheelchair accessible and safe? If you

are not sure, ask someone you trust to visit the facility

and assess the area and attraction for safety purposes.

Let’s face it “wheelchair friendly” does not mean the

same to everyone.

According to Brand South Africa (2013), in general

South Africa has become more aware of travellers with

special needs, and the major tourist attractions have

made an effort to provide for visitors with disabilities.

The rights of disabled persons as incorporated in the

Constitution of South Africa can account for the greater

awareness. Public buildings and other facilities are also

required by legislation to provide accessibility for everyone.

If you visit any of the national parks, please consult

their websites for detailed information relating to visitors

32

with disabilities (www.sanparks.org.za). Kirstenbosch

National Botanical Garden (Cape Town) is beautiful to

visit but is set on a very steep slope and not all areas

are accessible (www.sanbi.org). To fi nd approved accommodation

in the different provinces, please visit

www.disabledtravel.co.za – each of the facilities has

been evaluated by an occupational therapist.

On 25 October 2019 the MySAPS App was launched

in KwaZulu-Natal. This is an exciting concept as part of

the “safer festive season” campaign. General K.J. Sitole

has described it as follows

MySAPS Mobile App is an application available for

iPhone and Android smartphones. This application allows

citizens to submit crime tip-offs anonymously to

the Crime Stop Call Centre and to provide updates,

to retrieve their nearest police station information using

their exact location from a mobile device especially

for vulnerable people who are victims of crime, such as

rape victims who urgently need to reach a rape crisis

centre. (Sitole, 2019)

Traveller24 (2017) lists the following emergency numbers

that you could save on your cellphone if you will be

travelling the festive season:

• 10111 (South African Police Services) or 012 665

6075 (National Traffic Call Centre) – to report incidents

• 0861 400 800 (Arrive Alive) – to report cases of bad

driving or poor road conditions

• 080 001 0101 (Automobile Association Rescue)

• 112 (emergencies) – to obtain the assistance of an

emergency service closest to you

Enjoy the break with family and friends, have a blessed

festive season, and be safe!

Sources

Brand South Africa. 2013. Tourists with disabilities. https://www.

brandsouthafrica.com/tourism-south-africa/travel/advice/touristswith-disabilities.

Sitole, K.J. 2019. Speaker’s notes by General Sitole National Launch

Safer Festive Season and MySAPS App, KwaZulu-Natal. https://

www.saps.gov.za/newsroom/msspeechdetail.php?nid=22981.

Traveller24. 2017. Stay safe this festive season: Here’s your emergency

need-to-know info. https://www.traveller24.com/TravelPlanning/your-pocket-guide-

to-sa-festive-season-safety-20171207.

Vuk’uzenzele. 2019. Festive season safety tips. https://www.vukuzenzele.gov.za/festive-season-safety-tips


Prof Amanda Krause, MBBCh, PhD MB BCh,

Medical Geneticist/Associate. Professor.

Head: Division of Human Genetics.

National Health Laboratory Service (NHLS)

& The University of the Witwatersrand.

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

Use of creatine and steroids

The use of creatine and steroids is dealt with here in response to two questions received.

I have muscular dystrophy. Friends have suggested using the supplement creatine to build muscles. Is there

any recommended protocol or dosing regimen for the use of creatine?

Creatine is a substance produced naturally in the body that helps to supply energy to muscle and nerve cells. It is taken in our diet and

produced in our bodies. Bodybuilders and other athletes have taken creatine supplements for many years to build muscle mass and boost

athletic performance. Its use is allowed by amateur and professional sporting organizations. In addition, people with muscular dystrophies

have been shown to have low levels of natural creatine, so it has been thought that raising these levels with creatine supplements could

help improve muscle function by strengthening the weakened muscles of people with muscular dystrophy.

Studies have shown some modest effects of creatine supplements in people with muscular dystrophy as it improves muscle strength in the

short to medium term. Responses may be variable in different individuals and in different muscular dystrophies. Treatment with creatine

monohydrate is not recommended routinely for treatment of DMD. No studies showing effects longer than one year are available. In

studies of up to six months in duration there did not appear to be any significant side effects.

Creatine is sold as “creatine monohydrate” in pharmacies and health food stores. The dosing should be decided by your doctor – it is based

on the weight of the person. If you are taking creatine supplements you should make sure you drink plenty of liquid throughout the day.

If you are taking any supplements, you should always discuss this with the doctor treating you.

Why are steroids used in Duchenne muscular dystrophy (DMD)?

The steroids used in DMD are corticosteroids, different from the steroids that body builders use. Steroids have been shown to improve

strength and motor function in children with DMD, although not all boys respond. If they are used in boys who are still walking, they

may have an effect in stabilising or even improving muscle strength for a period of time. Steroids may delay the development of breathing

difficulties, and boys on steroids have fewer scoliosis problems. It is unknown exactly how the steroids work but they are thought to

reduce muscle cell breakdown by stabilising cell membranes and reducing inflammation.

Doctor’s

Different dosage regimens have been tried and you should be advised by your treating doctor what is best for your son. There are published

guidelines to assist. The optimal age to begin treatment with corticosteroids or the optimal duration of such treatment is still not

known and needs to be individualised. Corticosteroid therapy remains the treatment of choice for boys affected with DMD between the

ages of 5 and 15 years. They should be started as soon as a plateau or a decline in motor skills is noted. Corticosteroid therapy is not

recommended in children under the age of 2 years.

As the side effects can be significant, these need to be balanced against the positive effects. It is important to monitor boys’ growth and

bone strength and for the development of diabetes and cataracts. There is an increased risk of bleeding from the stomach, and it is important

not to take anti-inflammatory medication simultaneously. Boys tend to gain weight, so diet and exercise are important. Steroids cannot

be stopped instantaneously; they need to be tapered off. Also, the dose may need to be increased if a boy is unwell or requires surgery.

33


DIGITAL DAYS

We all hope to leave behind some sort of legacy, be it

something we have created, or information we have

gathered, or knowledge which we might have developed.

My wife is a keen photographer and the topic of the

storage and preservation of her digital photographic files into the

future often comes up as the technology matures. At least

these days she has the means of creating backups and

copies which can be stored in different places, including the

Cloud. During the film era there wasn't really a viable means

of copying a film negative, and storing them safely was an

extremely expensive space-consuming and time-consuming

exercise. Nevertheless the question still remains, what will

ultimately happen to one's digital files, whether they be

photographs or documents?

Technology is constantly evolving but not necessarily

making things easier. Twenty years ago one could buy a

digital film scanner which could be used to digitise

and archive 35mm photographs. Those scanners are no

longer made, and to make matters worse the operating

systems which they operated under are no longer

supported (think DOS and the earliest editions of Windows).

Even if you have a scanner (as I do) it will not operate

successfully if you do not have a vintage computer to go

with it. This dilemma continues to create headaches for film

photographers. Fortunately, if one uses only digital cameras,

storage space has become cheaper over time and one

can now back up data and images to external hard drives

which can be stored at different locations for safekeeping.

The photographic example described above serves as an

introduction to a concern I have about Internet discussion

forums. These not only allow people around the world to

engage one another in conversation on various topics but

also serve as repositories of information. For the purposes of

this article we will focus on the disability discussion forums.

Many forums have existed for more than twenty years,

stimulating an active and vibrant interaction across the

globe and in doing so attracting a great deal of valuable

information and data. Information is shared about health

matters, sexuality, the design and construction of housing,

diet, relationships, exercise, child care, sport and recreation,

travel, access, technology, mobility devices, etc, etc.

These are modern-day libraries. Over a period of time the

information amounts to a formidable body of work which

can prove to be invaluable to disabled people, many of

whom are not able to get access to this information locally or

personally. Much of this information and data could also

be utilised by the medical profession if they so desired.

Membership of these forums can often exceed 10 000

individuals, from South Africa to Singapore, England to

Ecuador, and Uzbekistan to the United States. All that is required

is an Internet connection and a reasonable understanding

of English language. The disabled members range from

grizzled old veterans who have been there, done that, and

have all the T-shirts, right through to the newly disabled for

whom the world is suddenly a very different place from that

which they had known before. Not all participants are necessarily

disabled and often a significant portion of the membership

consists of caregivers, parents of disabled children,

spouses, etc. Many of these people have a newly disabled

person in their family and are desperate to try and find out

about current health concerns, future prospects, and how

they might be able to assist.

One of the benefits of discussion forum websites is the ability

to maintain involvement in a particular discussion thread

over an extended period of time. One thread I am currently

following started in 2005 and has new information added

every day. To date it has had over 43 000 replies and has

been viewed more than 2.3 million times! When these

discussion forums are disbanded, members often turn to

applications such as Facebook to try and continue connecting

with people. Unfortunately Facebook's format does not

really provide for continuity of discussions, and as we all

know it doesn't take long before a particular topic slowly

slides down the timeline, out of sight and then out of mind.

This can also happen inside a discussion forum, but the ability

to search for information, categorise discussions into different

groups, and force active threads to bubble up to the top of the

forum all helps to keep discussion alive. Most of these forums

are privately owned, and as with all things the day comes

when the owner either cannot afford to maintain the website

financially or, sadly, falls ill or dies. This invariably leads to

the shutting down of the forum and the subsequent loss of

decades of accumulated information. In the last fifteen years

34


I have witnessed at least four major disability forums being

shut down. Within a matter of days these resources were

switched off forever, their content never to be seen again.

New Mobility, ParaQuad, Wheelchair Junkie, Apparelyzed.

All gone. Everything lost. The digital dustbin is permanent,

and once a website or discussion forum is closed down it

never sees the light of day again. I certainly have never seen

a website resurrected from the dead.

This brings us to an aspect of managing such websites which

is worthy of consideration. There are two philosophies out

there. One follows the notion that the individual who owns

the domain, website or forum and who pays the bills has the

final say as to its continued existence. If I am happy with

my forum, it stays. If for whatever reason I am no longer

happy, I close it down. In simple terms, it's my toy and I will

play with it as long as it suits me. This works fine until the

forum owner gets tired of playing with their toy. Then the

game stops, and the tears begin. An alternative philosophy

is one that says the "ownership" of the forum belongs to all

the people who participate in it. The value of the forum lies

in the cross-section of its members and the amount and quality

of information they impart to the forum. This philosophy

provides for continuity of ownership, provided the original

forum owner develops the membership to be able to take

over when the owner is no longer able to continue. This is

in my opinion a mature philosophy, accepting that what we

create might well develop a life of its own which is worthy

of continuing once we are no longer around. It provides the

framework for a long-term vision, and if the necessary foundations

are set in place, the website's role in the community

can continue well into the future.

There is no right or wrong philosophy here. We are, after all,

dealing with human beings and we all work differently, have

different goals, different expectations, and different attitudes

to life. Living in a time where so much of what we create is

discarded so easily, it is worth considering that digital information,

in the form of websites and discussion forums, is

valuable. Due consideration should be given before deciding

to pull any plug which might send it to an eternal black hole.

35


ON THE SPOT, SCOTT…

Disability Access My a$$ . . . . .

By Robert Scott

Every person has the right to access a public place such as

a shopping centre or restaurant. This is a fact and something

that many in our society overlook. Have you ever come to a

building and suddenly realised that you can’t get in because

the building is in no way accessible? I thought so!

Now we need to understand that not everyone will have

exactly what we expect, but I would like to make something

very clear: putting a 20-metre long ramp at a 45-degree angle

next to the stairs is not disability friendly! It is friendly if

you are a mountain climber but not if you have muscular

dystrophy. To further add to the irritation the ramp is then

painted in such a way that you are more likely to end up on

your ass than you are to see the top of the ramp.

My time with the MDF has made me a lot more aware of

the issues that those with disabilities experience on a daily

basis. I have also become a lot more irritable when I see

basic human rights being violated for nothing more than that

somebody could not be bothered to really take care when

designing disability facilities.

My question today is, at what stage in the development of

civilised society did we start paying less attention to the

needs of people with disabilities? A disability toilet is more

than just putting a sign on the door. A disabled parking bay is

not a free spot for those who will “just be 5 minutes”.

At some point the needs of the disabled must stop being

treated as an inconvenience and be acknowledged. Why does

someone with muscular dystrophy have to struggle to use

public facilities (or deal with the lack thereof) and nothing

is ever improved? I for one do not have the answers to this

question, but I will do everything I can to educate those who

are ignorant on the topic. We all need to start making more

noise, make our voices heard, and make everyone realise that

disabled people have the same rights as everyone else!

Allow me to share a story with you to help show the point

I am trying to make. A colleague and I were at a shopping

centre in Johannesburg that had no visible disability access,

so we had to figure out how to get to the top floor with the

wheelchair. A friendly man came over to us and said there

was a ramp we could use. We scampered off happy to hear

we could in fact get onto the top floor, until we saw the

so-called access! A ramp that was about 50 metres long

and as steep as anything you could imagine. It took us 20

minutes to get to the top, while my colleague was worried

we were going to slide down, with me desperately holding

the chair and hoping we did not both go tumbling down.

Coming down the ramp was a whole new story, which ended

with some nervous laughter and general shock.

36


KIDDIES CORNER

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

develop and their language and communication skills to mature.

Sock puppets idea

By Palak Kapadia

Turn every bedtime story into a puppet show with simple puppets made out of socks. They can be

customised to look like your child’s favourite character too.

What waste you need:

• Two socks - plain or printed

• Googly eyes or buttons

• Wool

• Wool needle

• Sewing thread

• Scissors Glue

What to do out of these:

1. Wash and dry the socks properly.

2. Stick or sew the googly eyes or the buttons on the heel of the socks. Put 2 eyes per sock.

3. Use strips of wool to make the puppet’s hair.

4. Sew the hair on top of the sock above the eyes.

5. Put them in your hands and the puppets are ready for a show.

Article available at: https://sheroes.com/articles/best-out-of-waste-ideas/NjkzNw==

37


Healthy

Diet and Nutrition

By Emily Malcolm, PhD, in Muscular Dystrophy News Today

Muscular dystrophy is the name given to a group of genetic

disorders characterized by muscle weakness and wasting.

There is currently no cure for muscular dystrophy, but available

treatments can help to manage symptoms and improve

patients’ quality of life.

A balanced diet is important to the health of people with

muscular dystrophy.

Choosing the right diet

Getting sufficient nutrition can be a challenge for people

with muscular dystrophy. Many have difficulty chewing and

swallowing, or feel fatigue at levels that reduce appetite and

make eating a chore. Limited caloric intake can break down

muscles faster, possibly speeding disease progression.

A registered dietitian should be part of patients’ care team.

The dietitian can help in constructing an appropriate meal

plan so patients get the nutrition they need in ways easy to

eat and swallow. This might mean substituting a meal-replacement

shake for solid foods, or turning to softer foods.

Many patients can also benefit from taking vitamin supplements,

but this should be in consultation with a healthcare

professional. Dietitians can also recommend recipes and

meal preparation strategies.

A well-balanced diet that is high in protein, and rich in leaner

meat like fish or poultry, is important. Because many patients

struggle with constipation due to weak stomach muscles and

limited mobility, many dietitians recommend a diet high in

fiber as well.

38

Mealtime strategies

Several strategies can help make mealtimes easier for people

with muscular dystrophy:

• Do no rush a meal, allowing time to eat; rushing increases

the risk of choking

• Avoid dry foods with loose crumbs, like day-old bread,

crackers, or chips

• Taking small bites may make chewing and swallowing

easier

• Minimize distractions during mealtimes, like a radio or

TV, to concentrate on the meal and reduce the risk of choking

• Sitting in an upright position can help with swallowing

Speech therapy

Speech therapists can work with patients to improve the

strength and range of motion in muscles that control chewing

and swallowing. They also can help teach safer approaches

to swallowing so to lessen the risk of choking.

Medication

Excess saliva is common in patients with weakened tongue

and throat muscles, but certain medications can be used to

lessen saliva production.

Tube feeding

In extreme cases, doctors may recommend a feeding tube

for nutritional support. This is a tube surgically connected

directly to the stomach, bypassing the mouth and esophagus

to ensure that patients are getting sufficient nutrients.

Article available at: https://musculardystrophynews.com/

diet-and-nutrition/


The Best Activities

for Kids with

Muscular Dystrophy

By Laura Anastasia

Healthy

Children with muscular dystrophy, a group of rare

genetic diseases that cause muscles to weaken and

deteriorate, should remain active as long as they can,

experts say. "We feel very strongly that moderate exercise

is very important to minimize the deconditioning

that goes on with these diseases," says Darryl

De Vivo, M.D., pediatric neurologist in the Pediatric

Neuromuscular Disease Center at Columbia University

Medical Center/New York-Presbyterian.

Water therapy and swimming are both benefi cial for kids

with muscular dystrophy, even when symptoms become

more advanced. Warm water can relax muscles, and

the buoyancy of water makes both activities low-impact,

toning a child's muscles without placing added stress on

them. In addition, water's nearly weightless effect gives

kids a feeling of freedom to move in ways they can't on

land.

Equine therapy, or horseback riding, is also benefi cial as

long as kids have the necessary muscle strength. Young

patients can also participate in adaptive sports, such

as soccer, tennis, bicycling, and basketball, which have

modifi ed equipment and playing rules to make them suitable

for kids with disabilities or impairments.

"Children should be allowed to do as much as they can,"

says Valerie A. Cwik, M.D., executive vice president

and chief medical and scientifi c officer of the Muscular

Dystrophy Association in Tucson. "That's good for

development, socialization, and overall skeletal growth.

It's also important to keep joints limber and to keep

muscles as healthy as possible. If a child doesn't engage

the muscles, they may weaken just because of disuse."

9 Must-Eat Nutrients for Your Child

Children with muscular dystrophy, however, should

not lift heavy weights or exercise to the point of severe

fatigue. Both practices could put them at increased risk

of additional muscle damage, bone fracture, or other

injury.

As their symptoms progress, kids with muscular

dystrophy can still benefi t from more stationary

activities. For instance, standing at a table while playing

on an iPad can help strengthen bones. Lying facedown

while reading or watching TV can help stretch the hips.

Even children with very limited mobility can continue

to challenge themselves. Breathing activities such

as blowing bubbles can help delay lung weakness.

Playing a wind instrument or joining a choir can help

delay breathing troubles. Children can also maintain a

sense of freedom with new equipment. "When a child

is no longer able to walk, we advocate getting into a

motorized wheelchair so the child can still explore their

environment on her own independently," Dr. De Vivo

says.

Article available at: https://www.parents.com/health/

special-needs/best-activities-for-kids-with-musculardystrophy/


Cape Branch

World Duchenne Day

On 7 September we celebrated World Duchenne Day in support of all persons affected with Duchenne muscular

dystrophy. The MDF Cape Branch celebrated the event at the Urban Park in Green Point, Cape Town. The event

sprung off into a treasure hunt, which was a great triumph. The event was a great success, and we definitely made

a statement with our red balloons!

Duchenne Muscular Dystrophy Movie Day

The Duchenne muscular dystrophy group ended off their term with a movie day. The group enjoyed having the

opportunity to unwind, snack on popcorn and engage with the story “Peter Rabbit". This was indeed one of the

memorable moments.

40


Cape Branch

A Poem by Moghammad Mustafaa Small

I have Duchenne,

I am short and fun,

I can walk,

I stutter when I talk,

My family and friends help me get by

But I dry my own tears when I cry,

This won't get me down

I turn the frown upside down.

My schoolwork and reading helps me go far,

I know if I try hard enough,

I'll be my own star!

A few words by Yandisa

My name is Yandisa. I was born in a location called Nyanga East. Everyone knows it as the city’s most dangerous

place, but I myself have chosen a different path from what I’m witnessing. Being born with a physical challenge has

made me think clearly about what I want in life. I want to be successful and be educated and make my mother proud.

I am raised by a single parent who has been there through bad times and good times. Being physically challenged has

led me to know my strengths and weaknesses. I am smart when I am focused. Weak I am not! Someday in the future I

want to see myself fly high like an eagle in the sky, and when that day comes I will be fulfilled and happy, because the

only person that I care about will be very proud of me. Fly eagle, fly eagle….

Clinic Awareness

It has been a great experience raising awareness at local

clinics within Cape Town. We are able to reach diverse

individuals and provide them with educational information

about what muscular dystrophy is and what services the

Foundation offers.

41


Gauteng Branch

Casual Day 2019

The theme for Casual day in 2019 was “Time to shine with persons with

disabilities”, and our supporters this year did just that!

We managed to sell 2 420 stickers and would like to thank each and every

one of our supporters for all their assistance in making Casual Day 2019

a success for MDF Gauteng.

See you next year!!

Our very own Thor

It was a series of events, some good and some not so good,

that led us to a little boy in Randfontein affected with SMA.

Together with Redhill Private School, we set about raising funds

to help him. The Redhill Golf Day was hosted on 21 June, and

thanks to generous souls we were able to raise the funds

required!

It became evident to us that he was a very big fan of Thor.

We passed this on to Wheelchairs on the Run, and they

personalised the chair in an amazing way!

Thank you to Redhill School and Mitchell Moore for all their

assistance in making a little boy’s dreams a reality!

Thank you, Foghound Studios, for producing an

amazing advert about the Muscular Dystrophy

Foundation.

We are most grateful for your support.

Foghound Studios offer a complete, in-house and cost-effective solution to

television and radio commercials, event production and content production.

They are passionate about delivering quality and value on deadline and within

budget.

42


OPEN AIR SCHOOL MUSCULAR DYSTROPHY

SUPPORT GROUP

On 12 September 2019, as part of

the MDF KZN Branch September

Awareness Month, MD pupils were

hosted to a support group session.

Volunteers Neil Goldstone, Ashina

Haripersad and Divishka Balraj and the

branch treasurer, Raj Mahadaw, were

present. The support group pupils were

treated to snacks and refreshments and

were given a talk by Divishka Balraj.

After lunch and the interesting

presentation, pupils were invited outside

to release green helium-filled balloons in

support of awareness month.

KZN Branch

Raj Mahadaw and Neil Goldstone were

on hand to answer questions from fellow

pupils and teachers who were curious

about the set-up whilst the presentations

were in progress. Many were excited

about identifying past and present MD

pupils whose photographs appeared on

the banner. Some pupils on the banner

have now passed on. A number of pupils

requested permission to take selfies in

front of the banners.

The MDF KZN Branch wishes to place

on record their appreciation and thanks

to Open Air School in Durban for the

donation received from their annual

Civvies Day fundraising drive.


KZN Branch

CASUAL DAY 2019

It has been another exciting year for MDF KZN regarding our participation in one of our important fundraising

projects, Casual Day 2019.

It gets better every year as volunteers are roped in during July and August to start planning and setting targets.

This year was no different from previous years, and our first order of 3 000 stickers was sold within a month. To

be on the safe side, the branch ordered more stickers even though it was expected that they might not be sold.

The executive committee appreciated the remarkable work of Debra Goldstone, Ashina Haripersad and Divishka

Balraj for the planning and organising of sales and events for this project.

A total of 3 182 stickers were sold, which was within our target.

The MDF KZN Branch wishes to place on record our sincere thanks and appreciation to the following loyal organisations

that made our sales possible:

• Reutech Communications (Shereen Gundadeen)

• Cathy Khoon Khoon

• Mrs Bhanjee

• SA Home Loans (Suveer Ramlochan)

• Effingham Secondary School (Eshana Ratibar)

• Parmalat River Horse Valley (Duncan Gumede)

• St Raphael’s School (Mrs Phillips)

• Effingham Primary School (Mrs Shritha Dhunraj / Selomi Pillay)

• Mobility Solutions (Shantal Moodley)

• New Frontiers Tours Westville (Sulakhe Ndebele)

• Netcare Margate Hospital (Sibban Steyn)

• Selvan Chetty

• Verulam Secondary School (Mrs R Ramrathen)

• Albaraka Bank Limited (Ahmed Lockhat)

• Risecliff Secondary School (Mrs K Moodley)

• Seven Hills Primary School

• Netcare St Augustine’s Hospital (Lauren le Roux)

• Sath Guru Samajim Ashram (Guru Sagren Moodley)

• R.P. Moodley School (Yashica Somai)

• Kandice Govender

• Standard Bank (Varsha Pillay)

Thank you once again, and we look forward to your continued support. Without your help the Branch would not

have achieved our target.

A huge thank you to the staff of Casual Day for their assistance and advice when required.

DATABASE UPDATE

An appeal is made to all Patients and Members to send us your updated contact telephone

numbers, residential addressed and email addresses.

Please send your updates to accountskzn@mdsa.org.za

44


KZN Branch

IN MEMORIAM

John Swart (11/05/1960-19/07/2019)

Our deepest condolences to the Swart family with the passing of John Swart. A person that depart from

this earth never truly leaves, for they are still alive in our hearts and minds, through us, they live on.

Abraham Afrika (18/03/2004-01/07/2019)

Our deepest condolences to the Afrika family on the passing of your son, Abraham. Your family remains

in our thoughts.

Matthew Opperman (19/08/1993-19/10/2019)

It is always sad to say goodbye to our members. Matthew Opperman was

a member of the Foundation since 2004. The Foundation has walked a

long way with him and his family, our deepest condolences to the Opperman

family.

The Executive Committee, Staff and Volunteers of MDF KZN pass our

condolences to families of all our Patients whom have passed on during

this year.

Our thoughts and prayers are with you.

Condolences to family and friends. Ed.

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