Summer Issue 60
Meet our ambassador, Vené van Rooyen
ON THE RUN
We sell, repair and hire wheelchairs,
powered wheelchairs and mobility scooters.
011 955 7007
424 Ontdekkers Road,
Florida Park, 1709
Established in 2012, Wheelchairs on the Run
has grown into a company that is not too big
to care and not too small to make a difference.
At Wheelchairs on the Run our customers are
offered a variety of products and services at
05 MDF notice board
06 National news
10 MD information
08 What’s the Difference between Muscular Dystrophy and
09 MD and Assistive Devices
12 Caregiving for Someone with Muscular Dystrophy
15 How to Talk to Your Child about Their Neuromuscular
18 Go Green for Muscular Dystrophy!
21The perfect time to make a difference
22 My Testimony
26 My Experience with FSHD
28 Young Budding Artist
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
32 Sandra’s thoughts on...hands
33 Doctor’s corner
34 The view from down here
36 On the spot, Scott…
37 Kiddies corner
38 Diet and Nutrition
39 The Best Activities for Kids with Muscular Dystrophy
C O N T E N T S
Muscular Dystrophy Foundation of SA
Tel: 011 472-9703
Managing Editor: Gerda Brown
Copy Editor: Keith Richmond
Publishing Manager: Gerda Brown
Design and Layout: Divan Joubert
Cover photo of Vené van Rooyen
(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.
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
• 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!
Muscular Dystrophy Foundation
We would like to wish you
a peaceful and relaxing Festive Season
and a prosperous New Year.
Subscription and contributions to
We publish three issues of MDF
Magazine a year and you can subscribe
online to the magazine or by calling
your nearest branch.
If you have any feedback on our
publications, please contact the
National Office by e-mail at
firstname.lastname@example.org or call 011
Get all the latest news on the fight
against muscle-wasting conditions and
the latest research updates. It is our
editorial policy to report on
developments regarding the different
types of dystrophy but we do not
thereby endorse any of the drugs,
procedures or treatments discussed.
Please consult with your own physician
about any medical interventions.
If you are interested in sharing your
inspirational stories, please let us know
and we'll be in touch to discuss this
with you. The Foundation would love
to hear from affected members, friends,
family, doctors, researchers or anyone
interested in contributing to the
magazine. Articles may be edited for
space and clarity.
MDF SA database
If you know people affected by
muscular dystrophy or neuromuscular
disorders who are not members, please
ask them to contact us so that we can
register them on our database. If we do
not have your current e-mail and postal
address, please contact your branch so
that we can update your details on our
How can you help?
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.
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 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 email@example.com or call
Tel: 011 472-9703
Address: 12 Botes Street, Florida Park,
Banking details: Nedbank, current account
no. 1958502049, branch code
CAPE BRANCH (Western Cape,
Northern Cape & part of Eastern
Tel: 021 592-7306
Fax: 086 535 1387
Address: 3 Wiener Street, Goodwood,
Banking details: Nedbank, current
account no. 2011007631,
branch code 101109
GAUTENG BRANCH (Gauteng,
Free State, Mpumalanga, Limpopo
& North West)
Tel: 011 472-9824
Fax: 086 646 9118
Address: 12 Botes Street, Florida Park,
Banking details: Nedbank, current
account no. 1958323284
branch code 192841
Tel: 012 323-4462
Address: 8 Dr Savage Road, Prinshof,
KZN BRANCH (KZN & part of
Tel: 031 332-0211
Address: Office 7, 24 Somtseu Road,
Banking details: Nedbank, current
account no. 1069431362
branch code 198765
General MD Information
Tel: 021 794-5737
Tel: 011 472-9824
Win van der Berg (Support Group)
Tel: 021 557-1423
Maxine Strydom (Support Group)
Tel: 031 762-1592
Cell: 083 290 6695
Jan Ferreira (Support Group – Pretoria)
Cell: 084 702 5290
Tel: 012 667-6806
Cell: 082 608 4820
Charcot Marie Tooth (CMT)
Cell: 079 885 2512
Tel: 012 664-3651
Cell: 083 66 66 270
Friedreich Ataxia (FA)
Cell no: 084 405 1169
Tel: 011 802-7985
Spinal Muscular Atrophy (SMA)
Tel: 011 640-1531
Tel: 017 683-0287
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.
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
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
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.
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
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!
What’s the Difference between Muscular
Dystrophy and Multiple Sclerosis?
Medically reviewed by Nancy Hammond, MD on January 9, 2019 —
Written by Scott Frothingham
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:
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
MD can be life-threatening.
Symptoms of the most common type (Duchenne) start in
childhood. Other types can surface at any age, from infant
MD is a progressive disorder that gradually worsens.
MD has no known cure, but treatment can manage symptoms
and slow progression.
MS affects the central nervous system (brain and spinal
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
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.
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
Article available at: https://www.healthline.com/health/ms-vs-md
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.
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.
• 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
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
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.
• 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
Adaptive devices focus on using unaffected or stronger
muscles to perform daily tasks more efficiently. These
• 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
• 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
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
• 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.
1) MDA Online article: Spohn, S, “Assistive Technologies.”
Link: Quest Vol. 20, No. 2
2) Muscular Dystrophy Canada: Website link: http://muscle.ca/
3) Muscular Dystrophy: Queensland (Australia) Website: Care
4) Muscular Dystrophy America (MDA): Website link: http://
Article available at: https://m.health24.com/Syndication/PDLA/
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 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.
If you are living with someone who has MD, you will likely
need to make some practical changes that can help make life
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
• 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.
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).
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.
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
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
• Be specific about your needs so that your helpers are aware
of the tasks that will be required of them when they pitch
• 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
• 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
• 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.
If possible, consider getting an outside (or live-in) personal
care assistant who can help the person with MD with bathing,
going to the bathroom, getting in and out of bed, dressing,
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.
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 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,
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
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
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
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
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
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
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
Article available at: https://musculardystrophynews.
The Muscular Dystrophy Foundation of SA
would like to thank the National Lotteries
Commission for their support.
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
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
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
Go Green for
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.
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.
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
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.
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
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!
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
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
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
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.
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
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
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.
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,
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.
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
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
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
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.
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
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
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
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-
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
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
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-
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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.
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
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!
Brand South Africa. 2013. Tourists with disabilities. https://www.
Sitole, K.J. 2019. Speaker’s notes by General Sitole National Launch
Safer Festive Season and MySAPS App, KwaZulu-Natal. https://
Traveller24. 2017. Stay safe this festive season: Here’s your emergency
need-to-know info. https://www.traveller24.com/TravelPlanning/your-pocket-guide-
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 firstname.lastname@example.org.
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.
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.
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
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.
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.
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 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==
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
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.
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
• 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 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.
Excess saliva is common in patients with weakened tongue
and throat muscles, but certain medications can be used to
lessen saliva production.
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/
The Best Activities
for Kids with
By Laura Anastasia
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
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
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
Article available at: https://www.parents.com/health/
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
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….
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
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
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
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
OPEN AIR SCHOOL MUSCULAR DYSTROPHY
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.
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.
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.
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 email@example.com
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
The Executive Committee, Staff and Volunteers of MDF KZN pass our
condolences to families of all our Patients whom have passed on during
Our thoughts and prayers are with you.
Condolences to family and friends. Ed.