MDF Magazine Issue 70 April 2023

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MDFSA Notice Board
To learn more about the Muscular Dystrophy Foundation of South Africa, please visit our website at
www.mdsa.org.za.
Subscription and contributions to the magazine
We publish three issues of MDF Magazine a year. If you have any feedback on our publications, please
contact the National Office by e-mail at national@mdsa.org.za or call 011 472-9703.
How can you help?
Contact the National Office or your nearest branch of the Muscular Dystrophy Foundation of South
Africa to find out how you can help with fundraising events for those affected with muscular dystrophy.
NATIONAL OFFICE
E-mail: gmnational@mdsa.org.za
Website: www.mdsa.org.za
Tel: 011 472-9703
Address: 12 Botes Street, Florida Park, 1709
Banking details: Nedbank, current account no. 1958502049, branch code 198765
CAPE BRANCH (Western Cape, Northern Cape & part of Eastern Cape)
E-mail: cape@mdsa.org.za
Tel: 021 592-7306 Fax: 086 535 1387
Address: 3 Wiener Street, Goodwood, 7460
Banking details: Nedbank, current account no. 2011007631, branch code 101109
GAUTENG BRANCH (Gauteng, Free State, Mpumalanga, Limpopo & North West)
E-mail: gauteng@mdsa.org.za
Website: www.mdfgauteng.org Website: www.muscleriders.co.za
Tel: 011 472-9824 Fax: 086 646 9118
Address: 12 Botes Street, Florida Park, 1709
Banking details: Nedbank, current account no. 1958323284, branch code 192841
Pretoria Office
KZN BRANCH (KZN & part of Eastern Cape)
E-mail: kzn@mdsa.org.za
Tel: 031 332-0211
Address: Office 7, 24 Somtseu Road, Durban, 4000
Banking details: Nedbank, current account no. 1069431362, branch code 198765
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Contents
2 MDFSA Notice Board
4 MDFSA News
MD INFORMATION
10 Muscle MRI correlates with FSHD children’s functional measures
12 4 reasons to celebrate as my sons grow older with Duchenne
14 Macalister Dalton – Durban’s famous tattoo artist
16 A more tolerable world for people with disabilities
19 My story
20 Can weekly prednisone treat obesity?
22 What are problems that wheelchair users face?
25 Disability and health related conditions
30 Your everyday guide to living well with muscular dystrophy
39 Living with disability
40 Actor and comedian with muscular dystrophy works to open doors for more disabled stories
REGULAR FEATURES
45 Travel
49 Sandra’s thoughts on... your brave space
51 The view from down here
52 Doctor’s column
54 Random gravity check
Published by:
Muscular Dystrophy Foundation of SA
Tel: 011 472-9703
E-mail: gmnational@mdsa.org.za
Website: www.mdsa.org.za
Publishing team:
Managing editor: Gerda Brown
Copy editor: Keith Richmond
Cover photo of Little Heroes of Hope by Robert Scott
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MDFSA News
Meet our Ambassador of Goodwill
Please welcome another of MDFSA’s ambassadors, Ruan Sinden.
Ruan, aged 22, is a freelance actor, model, pageant judge,
motivational speaker and brand ambassador for various brands.
Recently Ruan was chosen to represent SA as Mr Central South
Africa, 2nd Prince and Mr Debutant 2022/23.
With a firm commitment to uplifting and educating our nation,
Ruan has dedicated himself to starting conversations that lead
to mindset changes that could help us approach topics we tend
to avoid.
Armed with the motto that your past doesn’t dictate your future, Ruan has made strides within
the modelling industry and also brought change to many who have had to face the same
challenges of depression, devastation and poverty that he so bravely overcame.
Ruan says: “Partnering with the Muscular Dystrophy Foundation to create awareness and
educate our communities is such an honour. I believe that once educated about a topic we tend
to approach it with more understanding. Being appointed Ambassador of Goodwill is a role that
I hold dear, and my aim is to go out and change mindsets across the country.”
Welcome to MDFSA, Abiri
By Gerda Brown
Abiri comes from the capital of Leron, Ikadus. He was a strong and
courageous warrior in the army of the King of Ikadus. He made the
long flight to South Africa to help fight for the rights of people with
muscular dystrophy.
He’s now happily settled at the Muscular Dystrophy Foundation of
South Africa and spends his days helping people with muscular
dystrophy.
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Wheelchair Games
By Gerda Brown
1 March 2023 was International Wheelchair Day, an
annual day of activities that take place around the
World when wheelchair users celebrate the positive
impact a wheelchair has on their lives.
The National Office
of the Muscular
Dystrophy
Foundation of South
Africa celebrated this
special day by
hosting Wheelchair Games for their staff. A course was
designed to give staff a taste of challenges that wheelchair
users experience in their daily lives.
The event was met with great excitement, and contestants
cheered each other on.
Congratulations to the winner of the Games, Mulanga
Kharidzha!
Little Heroes of Hope
By Robert Scott
MDFSA, Gauteng Branch, has been fortunate enough to have been supported for many years by
the Muscle Riders. However, many of you may also have noticed that we have an incredible
group of kids that take part in the 947 Ride Joburg kids’ event.
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This kids’ race happens the week before the adults’ race and is
where our Little Heroes of Hope show their support in generating
awareness and donations for our charitable endeavours.
We wish to extend our deepest thanks to this inspirational group of
children for their longstanding support in bringing hope to those
affected with muscular dystrophy.
We cannot wait to see what 2023 brings ... we hear it is going to be
awesome!
Muscle Riders
Bringing Hope in 2022
By Robert Scott
The Muscle Riders started 10 years ago, in 2013, with a simple idea ... cycle for those who
cannot. While this idea sounds simple when you say it, the execution is far from it. Have you
ever cycled 97 km? This is what the Muscle Riders have been doing every year, and in 2022 they
took part for the ninth time in the 947 Ride Joburg cycle event.
The team saw the return of many of our loyal supporters, who always show a great deal of
support and interest in the goals and charitable endeavours of the Gauteng Branch of MDFSA.
On 19 November, the Gauteng Branch hosted their annual function to say thank-you to all the
cyclists and supporters. We were extremely surprised when the G-Force Cycling Club presented
us with a cheque for R242 900. This took the Muscle Riders to well over R300 000 raised for the
2022 campaign, which made it the most successful we have ever had!
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We would like to thank all of our cyclists for their amazing support in 2022 and for helping us
bring hope to those affected with muscular dystrophy!
A special word of thanks goes out to our sponsors, Wheelchairs on the Run, Cool Tech and
Mitsubishi Electric. Without them we would not have been able to pull it off.
We look forward to the 947 Ride Joburg 2023 and cannot wait to see what the next race has in
store.
MDF Cape Branch Adult
Support Group
By MDFSA, Cape Branch
As February is known as the month of love, the Cape
Branch’s Adult Support Group held a session where
members could not only socialise but also learn their
own and their partner’s love language. Learning the
five love languages is applicable not only to couples but
also to other types of relationships.
The social worker proceeded to ask members to name
one or two things for which they were grateful and
what they were looking for in 2023. Most members
were grateful for their health and were just taking
things day by day. Deon and Leonie Louw mentioned
that they were looking forward to going away on
holiday the following month.
The topic was the five love languages described and
popularised by Dr Gary Chapman. The group watched a
video clip on the five love languages and afterwards
completed the love quiz. Members enjoyed discovering
their love language. Each one shared their love
language with the group, and according to them it was
accurate. At the end of the session, everyone
interacted and enjoyed the snacks that had been
prepared.
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This session was very successful. All members thoroughly enjoyed themselves, and each one
thanked the social worker afterwards. They learnt their love language and that of their partner
and are now able to be more considerate of each other’s needs in terms of their respective love
languages.
AWARENESS AT COLLEGE OF CAPE TOWN -
GUGULETHU CAMPUS
An awareness raising event was held on 7 February
2023 at the Gugulethu Campus of the College of Cape
Town. The day started slowly because we were the
first to arrive, but it gave us some time to network
with the staff of Gugulethu Campus. The day was
extremely successful because we could interact with
stakeholders and children as well.
According to our African communities, disability is
caused by witchcraft, and therefore it was important
that we explained what the real cause was – that these
disorders are usually inherited and passed on from one
generation to the next. We distributed pamphlets that
contained a lot of useful information. We built relationships and are looking forward to
attending more awareness sessions at the campus in the future.
Awareness at Paarl School
Our social work team also conducted an awareness
outreach event on 1 March 2023 at Paarl School.
We spoke to the teachers regarding the signs of
muscular dystrophy. We also told them what we do
at the Foundation ‘s offices. All in all, it was
informative and everyone enjoyed the session.
"A hero is an ordinary individual who finds the strength to
persevere and endure in spite of overwhelming obstacles." -
Christopher Reeve
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Welcome, Thuso!
My name is Thuso Mooki, and on 3 January 2023 I
took up my post as the new social auxiliary worker
of the Muscular Dystrophy Foundation of South
Africa, Gauteng Branch.
I qualified as a social auxiliary worker in 2016 and
have been working for different organisations in
foster care.
I am looking forward to this new journey as it is a
different and exciting path in my career.
Thank you
By Pieter Joubert
To all the people at MDF and Wheelchairs on the Run and to
everybody who donated towards the bath chair I received,
thank you all very much and may you all be blessed.
To Beauty, who handled my application and regularly comes
to visit me to see that I am well, thank you and many
blessings to you. I really appreciate everything you do.
Keep up the good work. God bless
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MD Information
Muscle MRI Correlates with FSHD Children’s
Functional Measures
By Andrea Lobo
Muscular Dystrophy News Today
2 February 2023
Muscle weakness in FSHD mainly affects the face, shoulders, and upper arms.
Whole-body muscle MRI correlates with functional measures in children with
facioscapulohumeral muscular dystrophy (FSHD) and might help evaluate disease severity,
according to a study.
“This study demonstrates that MR muscle imaging is a potential biomarker of disease staging in
pediatric FSHD,” the researchers wrote in “Correlation between whole body muscle MRI and
functional measures in pediatric patients with facioscapulohumeral muscular dystrophy,” which
was published in Neuromuscular Disorders.
A feature of FSHD is muscle weakness that mainly affects the face, shoulders, and upper arms.
In type 1, the most common, the disease is caused by a shortening of the D4Z4 region of
chromosome 4, causing the DUX4 gene to become activated. This leads to the DUX4 protein
being produced, which is thought to be toxic to muscle cells.
People normally show their first symptoms toward the end of their 20s. However, some develop
symptoms in childhood. Pediatric FSHD is usually associated with more severe symptoms and
a more rapid progression.
Symptoms vary regarding the muscles affected, age at presentation, and rate of progression,
meaning the traditional measures for monitoring progression might not be sensitive in the
disease’s initial phases.
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Scoring muscle to fat, wasting, edema with MRI
In this study conducted in Australia, a MRI was used in children with FSHD to define the
muscles involved and at what severity, and to compare the MRI evaluation with valid diseasespecific
functional measures.
The researchers evaluated 11 patients with FSHD type 1, ages 7–15 (55% boys), who were
recruited to a clinical trial (NCT02948244) at a single site in Melbourne. Whole-body MRI and
functional outcomes were evaluated at the beginning of the study, and at four later times.
After a preselection based on published data for adult patients. the team focused on muscles in
the upper and lower limbs, and in the abdomen.
Replacement of muscle by fat tissue, muscle wasting, and muscle edema (swelling) were
scored for each muscle, and added up to give each patient three cumulative scores.
The amount of fat in muscle and severity of muscle wasting correlated strongly with clinical
measures of muscle strength, evaluated by existing disease severity scales — the FSHD-
Clinical Score (CS) and FSHD-Clinical Severity Scale (CSS) — and the FSHD-Composite
Outcome Measure, an emerging functional scale.
The score for muscle edema correlated poorly with the clinical functional measures, however.
“Muscle edema,” the researchers wrote, “may predict and precede clinical muscle weakness,
suggesting the clinical scores may actually be lagging behind the MRI changes,” the
researchers wrote.
Weak correlation in muscle strength, manual testing
Other functional measures, such as myometry, which quantifies muscle strength using a heldhand
[sic] device, and manual muscle testing (MMT), were moderately or weakly correlated with
the MRI findings.
Although MMT has been used as the primary outcome in clinical trials in adults with FSDH [sic],
“the variability seen in this study suggests that its utility may be limited in pediatric patients,” the
scientists wrote. As for myometry, the team noted that, while it may be a more sensitive
measure than MMT, the scores in this small group were too spread out to be generalizable.
The Motor Function Measure for Neuromuscular Diseases (MFM-32) had a limited correlation
with MRI, in that the less severely affected children scored maximum points and couldn’t be
further tested. Also, high scores by some participants that suggested mild disease did not
correlate with MRI muscle changes.
“MFM-32 lacks the sensitivity to detect small change in those with minimally to mildly affected
muscles on the MRI,” the researchers said.
The Six Minute Walk Test correlated with MRI scores less strongly than other functional
measures. This is probably because children with FSHD maintain the ability to walk, even when
the upper limbs are severely affected, the scientists said.
The study suggests scores of muscle to fat replacement or wasting using whole-body MRI
“correlate strongly with disease-specific functional measures and may be a useful measure of
disease severity in pediatric FSHD,” the researchers wrote, noting that each participant having
only one MRI scan made it impossible to assess its responsiveness to change over time,
making that a limitation of the study.
Article available at: https://musculardystrophynews.com/news/muscle-mri-correlates-with-fshdchildrens-functional-measures/
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4 Reasons to Celebrate as My Sons Grow Older
with Duchenne
Living in the present can ease anxiety about the future
By Betty Vertin
Muscular Dystrophy News Today
January 20, 2023
Birthdays can be challenging for parents of children with Duchenne muscular dystrophy
(DMD). When our children were diagnosed, we were given a life expectancy. And as our
children turn a year older, it’s a reminder that we’re closer to the number doctors told us
when they said that Duchenne is fatal.
I’ll be the first to admit that I’ve let a few of my sons’ birthdays get the best of me. I allowed
them to seize me with fear that we were one year closer to fulfilling their life expectancy.
Over the years, though, I’ve been able to change the way I think. Of course, there will
always be grief for what my boys are experiencing and the future they’ll face. There will
always be parts of it that scare me.
However, I’ve found some things that help to keep me in the present so that I don’t let the
future steal my joy on my sons’ birthdays.
How to stay in the present
First, if I remember that we’re doing things for the boys that have never been done before,
it’s easy to celebrate. Our actions could help change the outcome of the disease, improve
the quality of life that older boys and young men experience, and increase life expectancy.
That’s worth celebrating.
My three sons have been in a clinical trial for eight years. We travel to an excellent
comprehensive neuromuscular clinic and see high-quality medical providers. Additionally,
we’re proactive with drug therapies. Knowing we’re doing all that’s in our power as best as
we can helps me stay in the present and not focus so much on my fears of the future.
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Second, I don’t know what the future holds. I have thoughts and ideas about it. I know what
the doctors have said, and I know about the disease’s progression, but that doesn’t mean I
know what’s going to happen. So reminding myself that I don’t know what’s ahead or how
it’ll occur helps keep me in the present and stops me from getting too far ahead.
Third, my sons are happy. They get frustrated with their disease and its effects on their
bodies. They have fears and anxiety as well. But they like their lives. They’re happy. They
like their rooms and gaming systems, their schools, and their activities. They have dreams.
I’m so glad they’re happy, which is a reason to celebrate.
Finally, their lives have purpose and meaning — every year they live that out is worth
celebrating. And it’s easy if I follow their lead!
I don’t mean this as a list of accomplishments, but my youngest son, Charlie, who turns 12
today, had a great year. He got confirmed, graduated elementary school and started middle
school, began learning to play the drums in the school band, and had a great summer
poolside. If you asked him, he’d tell you life was pretty great.
Rowen, my middle son with DMD, turns 14 on Saturday. I know he won’t read this, so I’ll
share that he’s getting tickets to a live WWE event. He’ll be ecstatic, as he is every Monday
and Friday when wrestling is on TV. He wants to be a broadcaster someday and loves how
the commentators on those shows interact with the wrestlers. Next year, he wants to be part
of the high school sports broadcasting group. If you asked him, he’d tell you that he can’t
wait for the future.
And my oldest, Max, who turned 17 in November, spent the night of his birthday at a fancy
theater watching a musical! His smile lasted a week. He loves all things theater; every
spring, he performs in the school musical and is also a member of the high school show
choir.
He went to his first show choir competition last weekend and repeatedly told me that he had
so much fun. If you asked him, he’d say that DMD has yet to cause him to miss out on
anything he’s wanted to do.
I’m going to sign off here, as Charlie will be home in an hour and we’ll celebrate all night
long. I won’t be surprised if we have a kitchen dance party!
Duchenne is so hard — every aspect of it. It takes intention and determination to not let it
get the best of me. According to the diagnosis, I stand to lose a lot to the disease, so I don’t
plan to let it take the happiness of celebrating my sons’ birthdays anymore.
Article available at: https://musculardystrophynews.com/columns/living-present-easeanxiety-future/
“When you focus on someone’s disability you’ll overlook their abilities, beauty
and uniqueness. Once you learn to accept and love them for who they are, you
subconsciously learn to love yourself unconditionally.” ― Yvonne Pierre, The
Day My Soul Cried: A Memoir
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Macalister Dalton –
Durban’s Famous Tattoo
Artist
By Wilna Botha
If you ask Macalister Dalton what makes him special, he is likely to mention one of two things: his
remarkable ability as a tattoo artist who gifts his subjects with beautiful artwork to adorn their bodies;
or his unfailingly optimistic outlook on life, which inspires others. He probably won’t mention the fact
that he has muscular dystrophy, because he doesn’t believe that his condition is what defines him. In
fact there are at least three things in Macalister’s life that set him apart.
Firstly, there is his remarkable ability to transform sections of his clients’ blank skin into canvases
covered with beautiful designs, exotic creatures and fantasy images. As a tattoo artist his biggest reward
is when he can see that his art pieces give pleasure to his clients and make them feel good about
themselves.
Secondly, Macalister is uniquely able to focus on the good things in his life and to ignore the negatives.
He is determined to live positively, in the moment, and to set future goals that motivate him. This makes
him an inspiration for everyone with whom he gets into contact.
Thirdly, Macalister has FSH muscular dystrophy, which has seriously curtailed his mobility and continues
to affect the quality of his life. What defines him is that he refuses to let muscular dystrophy dominate
his life or dictate what his goals are.
Macalister is 30 years old and lives with his family in Chatsworth outside Durban. He loved to draw from
an early age and was inspired by cartoon series such as Dragon Ball Z. Once he had decided that he
wanted to be a tattoo artist, he managed to buy a machine and then trained under Ulaf Kriel, who is
now a well-known Gauteng-based tattoo artist. Ulaf helped Macalister to acquire the technique and
artistry which he now uses to create tattoo art pieces that both he and the people who wear them are
very proud of. He has a small studio in Chatsworth and dreams of moving the studio to a more visible
location with more foot traffic.
As a child, Macalister was not aware of any remarkable physical difference between himself and other
children his age. It was only after he had left school that it became clear that he was increasingly battling
with movement and that something was wrong. This was the start of a long and very frustrating journey
to find out what was wrong with him, during which he was examined by about 10 different doctors,
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several of whom did tests on him. None of them could tell him why he was progressively losing mobility
and strength and could no longer walk long distances.
It was only when he finally went to see a specialist at Durban’s Albert Luthuli Hospital, who did a series
of tests over four days, that he was finally diagnosed with muscular dystrophy. He was then about 21
years old and hearing the news was a huge shock. But in a way, says Macalister, it was also good to
know what was happening to him, so that he could start to put plans for his future in place.
Macalister is honest about the fact that there have been very dark days in his life and that he still has
bad days. He has lost a lot of muscle on his left leg and is no longer able to walk. He has also been in a
lot of pain and is grateful for massages that help. He also hopes to get a standing frame because of the
extra mobility and independence that it will give him.
In spite of this he is adamant that “I’ve been through a lot, but I’m not giving up.” He continues to live
life positively, making the most of every day as much as he can, and is a rich source of wisdom and of
positive messages that inspire others.
Completing a tattoo takes Macalister between half an hour and up to eight hours, with most tattoos
taking about two to three hours, and he loves to add a personal touch to each. His greatest reward is
when his client goes away happy and proud. The tattoo that he is proudest of is one of a Pitbull which he
did in 2020. He only started at 7 pm, after a long day of tattooing, and finished it at 2 am, after seven
hours with breaks. But he loved doing it, and it was wonderful to see how much the client loved it.
Macalister hates negativism and it saddens him that there is so much negativity in the world: Personally
he refuses to let negativity and worries about the future consume him. “Mindset is important,” he says.
“You can control your mind. Being in the present is also important.”
Furthermore: “Being human is the biggest gift that you can get from God. To have a spirit in a body that
you can control with your mind – you will not believe what you are capable of doing to reach your full
potential. It’s up to you, how you feel about everything.”
Macalister is also very aware of the value of time and of the fact that he is getting weaker, which is why
he wants to make the most of every day. He is also philosophical about what the future holds for him,
since – as he says – no one knows what will happen tomorrow.
Macalister has been to one event organised by Durban’s Muscular Dystrophy Foundation but would like
to attend more. He would also welcome an opportunity to reach out to others who have muscular
dystrophy.
One of his goals is to learn more about how to help others to address the challenges they face. He would
like to share some of his techniques for continuing to set goals and move forward positively. He invites
anyone who may want to talk or who needs advice to contact him.
And a final message from Macalister: “You have to believe in yourself, in the same way that you believe
that water will come out of a tap if you open it. And if is there is something that you really want, don’t
give up. Never give up!”
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A more tolerable world for people
with disabilities
By Mandy Martin
Change always begins with acknowledging that a problem exists. Thus, it is important
that we raise awareness on the topic of disabilities, on the challenges we face, and on
teaching others how to work correctly with people with disabilities.
My body has travelled a journey that most bodies have not, but it has travelled with
others whose bodies share the challenges of this journey and who will understand that
often the mind travels a very different, opposing journey from that of the body. Prior to
being diagnosed with muscular dystrophy at age 19, I was an incredibly active and
sporty person. I could run, jump, skip, sprint, kick, dance, and well…walk. I still cherish
this identity as an abled and active person – even as my legs have been replaced by
wheels.
Growing up, I was completely unaware of people with disabilities, unaware of their
struggles, unaware of how important these seemingly unimportant things were to me.
Well, there was no greater wake-up call than being told as a little girl of 19 years old that
I would swop looking for new clothes for looking for new wheelchairs.
Then I became the person who was overlooked, judged, and thought to be invisible. But
I am definitely not alone. I write this article as a collective voice – representing the
thoughts, feelings and voices of those in my support groups “I use a wheelchair, yes I
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have a life” and “Women living with Muscular Dystrophy”. However, this is not intended
to be hate speech directed at anyone in particular, but rather an attempt to raise
awareness that we with disabilities require respect in order to build our own confidence.
This requires a delicate balancing act between, on the one hand, treating people with
disabilities as you would treat anyone else, including them in all facets of society, and
on the other hand still giving special consideration to their particular needs.
Below I have compiled a list of five common considerations to be aware of, in the hope
that we can strive towards a more tolerable world for people with disabilities.
1. A wheelchair acts as an extension of a person’s body. You do not have the right to
move the chair, lean on it, or even touch the person sitting in it.
“People touching, leaning, or using my chair as a brace. Don’t touch my chair. I wouldn’t
just grab your leg, why do you think you can touch my chair?” – Kassie Mauch
“If you need something off the shelf I am next to … say excuse me and DO NOT move
me or my chair. I don’t put my hands on you and shove you out of the way. Don’t touch
me or my chair!!!!” – Judy Kay Clark Katz
“Don't freaking touch me. Don't pat my shoulder or touch my arm and tell me I'm an
inspiration or talk down to me like I'm a 5-year-old just because you think it's amazing I
went to the freaking store.” – Christine Brazeel
“My chair is part of me!! Would you lean on your friend’s back while waiting in line at the
market? I’m not a piece of furniture and I feel every movement you make.” – Karen
Norlin Craft
2. It can be insulting when a stranger tells a person with a disability that they are an
inspiration.
“The things that people say like ‘I wish I could sit all the time’ or ‘I don’t even see the
chair’ … Also ‘you are so strong’ is offensive in my opinion … also being called ‘an
inspiration’ (gag).” – Jenna Martin
“You are doing very well. Often stated with a condescending tone. You're an inspiration.
How? Because I'm buying my own groceries you've been inspired to do the same? And
how many of us have had this: Can I pray for you? I reckon I can sin massively and still
get into Heaven after the number of prayers I've had. I have CP and use crutches for
walking.” – Julian Mark Emmett
“I understand that people are just trying to be nice, but I then wonder ‘what makes me
so inspirational? I am just living my life like anyone else.’ I think that if they truly got to
know me, they would realise that we are actually not too different from one another.” –
Mandy Martin
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3. I am in a wheelchair, I am not invisible, I am not a child. I AM HERE!
“Not seeing you behind their counter, as it’s too tall. Snozone … they served two people
before me, yet I was there first. So I went round to their side of the counter, smiled and
said ‘I came round here, because you obviously couldn’t see me in the queue.” – Tony
Richardson
“When you tell a waitress your order speaking just as well as your companion and they
look at them like ‘what does she want’. Also, I hate when parents tell kids to quit
staring … kids are curious. Educate them because if they don’t … they will be the rude
ass adults who stare worse than kids.” – Kate Baize
“Able bodied people talking to me like i’m a young child or like i’m too dumb to
communicate.” – Maria Cristina Donadio
“Staff checking in customers at a restaurant look right over me like I am invisible –
happens not infrequently.” – Donna Hill
4. Do not park your car in a disability bay if you are not disabled!
There is a lot of frustration and contention when it comes to parking bays. I find that
actions speak louder than words when it comes to this, and therefore I advise you to go
and look at an article written on News24 titled “Disabled woman finds new way to dish
out lip”.
5. Asking people if you can have sex is an offensive topic.
“One thing I can think of: Can you have sex? This can lead to a barrage of questions
you can bet no one would ask anyone else who is non-disabled.” – Julian Mark Emmett
“Seriously, who would ask such a question without realizing how offensive it is? I am not
interested in your sex life, blue pills, or orgasms. Leave your curiosity at the door! And
do you mind taking the trash on your way out?” – Mandy Martin
Lastly, I want to end with the words of Sarah Shaw, which I find describe perfectly how
all of us feel:
“Disabled people are unique individuals and should be treated just like you would want
to be treated. 1. Don't ignore or avoid us. 2. Don't assume you know what we need or
what is best for us. 3. Don't ask us for intensely personal information just to satisfy your
curiosity. 4. Don't touch our stuff. 5. Treat us like adults who can manage our own levels
of risk. 6. If you look around and don't see us there ask yourself why and what you can
do about fixing that.” – Sarah Shaw
It takes a lot of understanding to create a more tolerable world for people with
disabilities, but we expect change without our input. Education is needed, and someone
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must make the effort to do it. I want to thank all the men and women who contributed to
this article in helping to achieve this aim.
For those who would like to read further on this, I am currently writing a book to tell my
life story about my physical and emotional journey from being a fit athlete to becoming a
person with a disability, adapting to life in a wheelchair, facing the challenges, raising a
family and ultimately finding peace in life. This is a story about hope, resilience, and
overcoming the odds.
I hope others will gain a better understanding of the struggles faced by those with
disabilities and be inspired to take action to make a difference.
My Story
By Christo Dippenaar
My name is Christo Dippenaar, and I am 76 years old now. I was born as a first child of five,
having three sisters and a brother. I was only three months old when my parents moved from
Roodepoort to Bloemfontein.
I began school in a normal school, but at an early age my mom noticed that I was going off
balance when I ran. Since there was no neurologist in Bloemfontein, they took me to our house
doctor, who referred me to an internist. He could do nothing, but in such instances parents
grab at every straw. They took me to a naturopath, a chiropractor, even a faith healer.
Everybody offered hope, but every time a lack of money stopped us from going on; also there
was no visible betterment in my condition.
In 1950 the government announced that a medical faculty would be built at the Free State
University. My sister enrolled there to become a nurse. She insisted that my mom take me to a
neurologist there. I can remember there was a doctor Roco. In those days there were no
modern diagnostic machines such as those they use today. I remember that one of the tests
they called an air-encophalogram. They pumped air into my skull to take a photo with an X-ray
machine of my brain. Then the doctor could make a diagnosis. He told my mom that my
coordination, metabolism and muscle tone would degenerate over time. The doctor also did a
lumbar puncture to draw fluid from the spine to test. In those days the process to do that was
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much more complicated than today. When he did that, he told me I had to lie in a foetal
position for 12 hours. While I was still in that position, I felt I needed to use the bathroom.
There was nobody with me and I stood up. So the doctor told me I would become blind or deaf.
I became deaf because my nervous system was also infected. I think MD is one of the most
traumatic diseases in the world. Just think, one day you can use your arm and the next day you
will find it more difficult.
It took a long time for my sickness to be given a name. It was only when more symptoms
became visible that the doctors could diagnose me.
In 2004 the doctor realised that since my sickness was degenerative, my bladder would not
always have the ability to empty itself as it should and that some urine would always remain
there after I urinated. This would cause kidney problems. Then I had to get a catheter, and they
gave me a choice between repeatable catheterisation by myself or permanent catheterisation
by them. I thought I would struggle in the future, so I chose the permanent one. But this choice
also brought a problem because the catheter was an alien thing in the body, which would want
to resist it as an infection. Luckily there are medicines for that. I found that, as I grew older, my
body grew accustomed to the necessary antibiotics. But as I grew older I also experienced leg
spasms, the muscles that controlled my bowel movements weakened, and I had to use a
hearing aid, dentures and reading glasses.
In view of these things, you might think that life for the sufferer would be rather bleak. Not so.
Since the paralysis begins from the legs, the person’s mind is not affected – unless they allow it
to happen. You can still read and write (with a computer); you can also pray for somebody else;
and you can also sing.
Can weekly prednisone
treat obesity?
By Northwestern University
Science Daily, 1 April 2022
Obese mice gain muscle mass and lose fat with once weekly prednisone.
Obese mice that were fed a high-fat diet and that received prednisone one time per week had
improved exercise endurance, got stronger, increased their lean body mass and lost weight, reports
a new Northwestern Medicine study. The mice also had increased muscle metabolism.
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The once-weekly prednisone promoted nutrient uptake into the muscles.
Investigators also found these mice had increased adiponectin levels, a fat-derived hormone that
appears to play an important role in protecting against diabetes and insulin resistance.
The scientists also showed mice that were already obese from eating a high-fat diet also had benefit
after once-weekly prednisone, experiencing increased strength, running capacity and lower blood
glucose.
"These studies were done in mice. However, if these same pathways hold true in humans, then
once-weekly prednisone could benefit obesity," said senior author Dr. Elizabeth McNally, director of
the Center for Genetic Medicine at Northwestern University Feinberg School of Medicine.
McNally also is a Northwestern Medicine physician and the Elizabeth J. Ward Professor of Genetic
Medicine.
"Daily prednisone is known to promote obesity and even metabolic syndrome -- a disorder with
elevated blood lipids and blood sugar and weight gain," McNally said. "So, these results, in which we
intermittently 'pulse' the animals with once-weekly prednisone, are strikingly different. Obesity is a
major problem, and the idea that once-weekly prednisone could promote nutrient uptake into muscle
might be an approach to treating obesity."
The study will be published April 1 in the Journal of Experimental Medicine.
Most of what we know about steroids like prednisone come from studies looking at what happens
when prednisone, a glucocorticoid steroid, is taken every day.
"We see a very different outcome when it is taken once a week," McNally said. "We need to fine tune
dosing to figure out the right amount to make this work in humans, but knowing adiponectin might be
one marker could provide a hint at determining what the right human dose is."
McNally described the weekly dose as "a bolus, or spike, of nutrients going into your muscle."
"We think there is something special about promoting this spike of nutrients into muscle
intermittently, and that it may be an efficient way to improve lean body mass," she added.
"What is exciting to me about this work is the finding that a simple change in the dosing frequency
can transform glucocorticoid drugs from inducers to preventers of obesity," said corresponding
author Mattia Quattrocelli. "Chronic once-daily intake of these drugs is known to promote obesity.
Here we show that dosing the same type of drug intermittently -- in this case, once weekly --
reverses this effect, promotes muscle metabolism and energy expenditure, and curtails the
metabolic stress induced by a fat-rich diet."
Quattrocelli, who initiated the research while at Northwestern, is now assistant professor at
Cincinnati Children's Hospital Medical Center and department of pediatrics at the University of
Cincinnati.
Can weekly dose still benefit patients with immune conditions?
Many patients take prednisone daily for different immune conditions. Known side effects of daily
prednisone include weight gain and even muscle atrophy with weakness. Investigators want to
determine whether patients can get the same immune benefit with intermittent prednisone dosing,
which could be much more beneficial to the muscle.
Research began in muscular dystrophy
In previously published research, McNally's team discovered giving prednisone intermittently was
helpful for muscular dystrophy, showing once weekly prednisone improved strength.
21

The group also recently reported findings from a pilot trial in humans with muscular dystrophy in
which one weekly dose of prednisone improved lean mass.
Not one-size-fits-all for prednisone dosing
People have different responses to prednisone dosing.
McNally wants to determine which biomarkers are most critical to mark having a beneficial response
to prednisone.
"If we can determine how to choose the right dose of prednisone that minimizes atrophy factors and
maximizes positive markers like adiponectin, then we can really personalize the dosing of
prednisone," she said.
The group also recently showed that weekly prednisone uses strikingly different molecular pathways
to strengthening the muscle in male versus female mice, based on a new study just published in the
Journal of Clinical Investigation by Isabella Salamone, a graduate student in McNally's lab.
The circadian connection
The benefits of weekly prednisone are linked to circadian rhythms, reports another new study from
Northwestern and University of Cincinnati published last month in Science Advances.
Human cortisol and steroid levels spike early in the morning before you wake up.
"If you don't give the drug at the right time of day, you don't get the response," Quattrocelli said. "In
mice, we obtained good effects with intermittent prednisone in muscle mass and function when we
dose them at the beginning of their daytime. Mice have a circadian rhythm inverted to us, as they
generally sleep during the daytime and are active at night. This could mean that the optimal dosing
time for humans during the day could be in the late afternoon/early evening, but this needs to be
appropriately tested."
Do stronger, leaner mice equal stronger, leaner humans?
The major caveat is that these studies are conducted in mice, McNally said.
"While we are encouraged by the pilot study in humans with muscular dystrophy, mouse muscles
have more fast-twitch fibers than humans, and slow-twitch muscle could be different," McNally said.
"More studies are needed to try to better understand whether these same mechanisms work in
human muscles."
The study was funded by National Institutes of Health grants DK121875, HL158531, AG049665,
AR052646 and HL061322 and the CCHMC Heart Institute Translational Grant.
Journal reference
Mattia Quattrocelli, Michelle Wintzinger, Karen Miz, Manoj Panta, Ashok D. Prabakaran, Grant
D. Barish, Navdeep S. Chandel, Elizabeth M. McNally. Intermittent prednisone treatment in mice
promotes exercise tolerance in obesity through adiponectin. Journal of Experimental Medicine,
2022 DOI: 10.1084/jem.20211906
Article available at: https://www.sciencedaily.com/releases/2022/04/220401122235.htm
“Abled does not mean enabled. Disabled does not mean less abled.” ―
Khang Kijarro Nguyen
22

What are problems that wheelchair
users face
By Karman Wheelchairs
Some of the typical issues that wheelchair users have include small corridors in older buildings,
parking lots that are challenging to get around, even just shopping or going to visit loved ones.
Don’t forget uneven surfaces or steep slopes that are impossible to self-propel a manual
wheelchair. And then there is public transit.
Traveling on public transit can be very challenging and time-consuming in the best of
circumstances. It would be impossible otherwise. How to do [sic] you get to the different levels
if the elevators are out? Even though the gap between the train and the platform is easy to step
over, it can be very tricky to cross in a wheelchair and there is always the possibility of the
wheels getting stuck.
Then there are the problems of pressure sores or muscle cramps developing because of long
periods of sitting. Wheelchairs are below the expected or normal sight lines of pedestrians,
motorists and other road users and accidents can result if the wheelchair user or those around
don’t react quickly enough. If all of those challenges weren’t tough enough, wheelchair users
have to deal with the attitude of the society towards them.
Able bodied people find it difficult seeing line [sic] through the wheelchair user. Wheelchair
users often feel talked down to or even ignored. Some able bodied people wrongfully think that
the wheelchair user should be more independent.
Some daily problems that wheelchair users encounter include:
1. Dirty hands as a result of pushing themselves in a manual wheelchair.
Dirtying of hands as a result of pushing one’s own wheelchair forward is one such issue.
If sanitary equipment is not at one’s frequent disposable [sic], it may result in serious
health disorders as individuals eat or drink with the same dirt intact. Additionally, one
must also consider that many individuals – especially those below the poverty line, who
are most likely to use manual instead of automated wheelchairs – lack the monetary
capacity to fund frequent sanitation against the dirtying of hands. This exacerbates the
spread of germs to those they come into contact with.
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2. Mirrors are not usually at their height.
With mirrors usually above or below the average wheelchair level, those handicapped
find it unable to smoothly conduct their daily activities, i.e., such as shopping and
getting dressed. This reinforces the notion that society must work on its inclusivity
agenda.
3. Public transits aren’t usually set up for disabled people.
Setting up public transits for those with disabilities appears to be a hefty infrastructural
cost in developing countries like Pakistan. [Public transits] are barely adequate to
accommodate the rather mobile populace. […]
4. Buses can be especially challenging when they have to wait to see if the wheelchair
ramp really works.
With buses, the pressure of testing out a wheelchair ramp amidst peak hours is known to
distress those with disabilities, often compelling them to abandon the use of buses
altogether. What must also be noted is that most buses like the inbuilt ramps, boasting
staircases that further disadvantage those with disabilities instead.
5. Should they give up space on the bus for a stroller?
Another prominent debate that sprouts up with regards to bus usage is whether or not
spaces for strollers be given precedence over spaces occupied by wheelchairs. As such,
one may argue that parents can manage to coddle their toddlers in their arms, whilst
those on wheelchairs are often far too old to be coddled around.
6. Dealing with people who abuse WHEELCHAIR parking spaces.
Dealing with individuals who abuse wheelchair spaces is a recurring issue that state and
private authorities majorly overlook – be it at outside hospitals, shopping malls, or
recreation zones. Problematically, these parking spaces are either not labeled as spots
for wheelchairs or individuals buy their way through parking spots disgruntling a minority
that already has far too few privileges in its name.
7. The dirty looks you get when you drive into a handicap parking spot.
Social stigmas also appear to be a permanent hindrance to handicappers’ standards of
living; glares, pinpointing, and public lampooning all frequently manifest as handicappers
drive into public parking spots. Often, this disincentivizes them from availing [sic] such
exclusive facilities, driving them towards social isolation in the long run, and adversely
impacting their mental health.
8. The look people give you for doing the most mundane things like getting gas.
Even when those with disabilities try to break through barriers and embark on the route
of self-sufficiency and henceforth fulfill the simplest of tasks – i.e., filling gas – public
displays of pity and undesired attention discourage them from continuing with such
lifestyles.
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9. Having to let other people know you are OK constantly!
What intensifies their aggravation is responding to tedious “Are you ok,” questions –
often reiterated formalities. Those with disabilities are hence placed under the spotlight
and forced to answer in the affirmative, or else they would stimulate congregations of
despairing audiences.
10. Answering ridiculous questions like “Do you have a job?”
Invasive questions add to their perturbation: be these questions inquiring into their
employment, education, or marital status, they all equally hurt those with disabilities
who are indirectly reminded of their inadequacy to contribute to and fulfill a layman’s
daily tasks.
Article available at: https://www.karmanhealthcare.com/what-are-problems-wheelchair-usersface/
Disability and Health Related Conditions
By Centers for Disease Control and Prevention
Studies have shown that individuals with disabilities are more likely than people without
disabilities to report:
• Poorer overall health.
• Less access to adequate health care.
• Smoking and physical inactivity.
People with disabilities need health care and
health programs for the same reasons
anyone else does—to stay well, active, and a
part of the community.
Although a smaller percentage than people without disabilities, most people with disabilities
report their health to be good, very good, or excellent. Being healthy means the same thing for
all of us—getting and staying well so we can lead full, active lives. That means having the tools
and information to make healthy choices and knowing how to prevent illness. For people with
disabilities, it also means knowing that health problems related to a disability can be treated.
These problems (also called secondary conditions) can include pain, depression, and a greater
risk for certain illnesses.
25

Secondary Conditions
People with disabilities often are at greater risk for health problems that can be prevented. As a
result of having a specific type of disability, such as a spinal cord injury, spina bifida, or multiple
sclerosis, other physical or mental health conditions can occur.
Some of these other health conditions are also called secondary conditions and might include:
• Bowel or bladder problems
• Fatigue
• Injury
• Mental health and depression
• Overweight and obesity
• Pain
• Pressure sores or ulcers
Bowel and Bladder
Some disabilities, such as spinal cord injuries, can affect how well a person’s bladder and bowel
works.
Fatigue
Fatigue is a feeling of weariness, tiredness, or lack of energy. Fatigue can affect the way a
person thinks and feels. It can also interfere with a person’s activities of daily living.
Injury
Injuries—including unintentional injury, homicide, and suicide—are the leading cause of death
for people 1 through 44 years of age. The consequences of injuries can include physical,
emotional, and financial consequences that can affect the lives of individuals, their families, and
society.
Mental Health and Depression
Mental health is how we think, feel, and act as we cope with life. People
with disabilities report higher rates of stress and depression than people
without disabilities. There are different ways to treat depression.
Exercise can be effective for some people. Counseling or medication also
might be needed.
Overweight and Obesity
Children and adults with disabilities are less likely to be of healthy weight and more likely to be
obese than children and adults without disabilities. Overweight and obesity can have serious
health consequences for all people.
26

Pain
Pain is commonly reported by people with many types of disabilities. For some, pain can affect
functioning and activities of daily living. The length of time a person experiences pain can be
classified as either long term (also called chronic) or short term.
Pressure Sores or Ulcers
Pressure ulcers—also known as bed sores, pressure sores, or decubitus ulcers—are wounds
caused by constant pressure on the skin. They usually develop on body parts such as the elbow,
heel, hip, shoulder, back, and back of the head.
People with disabilities who are bedridden or use a wheelchair are at risk for developing
pressure sores.
Other Concerns, Conditions, and Prevention
Many related health conditions and chronic diseases can be prevented. Chronic diseases are
among the most common and costly of all health problems, even though many chronic diseases
can be prevented. Some chronic diseases can be prevented by living a healthy lifestyle, visiting
a health care provider for preventive care and routine screenings, and learning how to manage
health issues. […]
Arthritis
Arthritis—or join inflammation—is the most common cause of disability among adults residing
in the United States. It limits everyday activities for 24 million Americans. People with
disabilities can be at greater risk of having arthritis.
Asthma
Asthma is a disease that affects the lungs. It is one of the
most common long-term diseases among children, but
adults can have asthma, too. Asthma is the most common
chronic disease of childhood and a leading cause of
disability among children.
Cancer
Getting screened for breast, cervical, and colorectal cancers as recommended helps find these
diseases at an early, often highly treatable, stage. Research shows that women with disabilities
are less likely to be screened for breast and cervical cancer within the recommended
guidelines. Some reasons identified by women include encountering inaccessible facilities and
equipment, and having to focus on other health issues.
Chronic Fatigue Syndrome
Chronic fatigue syndrome (CFS) affects more than one million people in the United States. It is
four times more common among females than males. People of both sexes and of every race
and ethnicity and age (including adolescents) can develop CFS.
27

Diabetes
Diabetes is a chronic disease for which care and treatment can help people to live normal and
productive lives. However, some people might be limited in their everyday activities. People
with diabetes, in general, report rates of disability that are significantly higher than those
reported by the general U.S. population.
Flu
People with certain types of disability have a higher risk of getting flu-related complications,
such as pneumonia. Some physical disabilities can affect how well their body fights off
infection. They should discuss their risk of illness with their health care provider.
Heart Disease
Heart disease, also called cardiovascular disease, is the leading cause of death in the United
States. Around 630,000 Americans die of heart disease each year. It is also a leading cause of
disability.
Learning Disabilities
Learning disabilities are disorders that may affect a person’s ability to understand or use spoken
or written language, do mathematical calculations, coordinate movements, or direct attention.
Learning disabilities can be lifelong conditions and some people can have several overlapping
learning disabilities. Other people can have a single, isolated learning problem that has little
effect on their lives.
Limb Loss
Limb loss can occur due to trauma, infection, diabetes, vascular disease, cancer, or other
diseases. Some children are born with limb loss or differences. Limb loss more often is the
result—rather than the cause—of other health problems. However, loss of a limb can result in
decreased physical activity, skin problems associated with using a prosthesis, and phantom pain
for the residual limb.
MRSA
Methicillin-resistant Staphylococcus aureus, or MRSA, is a
type of bacteria that is resistant to certain antibiotics.
MRSA, most often occurs among people in hospitals and
health care facilities such as (nursing homes and dialysis
centers) who have weakened immune systems. A person
can get MRSA through direct contact with an infected
person or by sharing personal items, such as towels or
razors that have touched infected skin.
Musculoskeletal Disorders
Musculoskeletal disorders include problems such as back pain, joint injuries, tendinitis, and
repetitive strain. Musculoskeletal injuries can cause temporary or even permanent disability,
28

leaving some individuals unable to move around easily. Work-related musculoskeletal disorders
are the leading cause of disability for people during their working years.
Nutrition (Healthy Eating)
Healthy eating is associated with reduced risk for many diseases, including the three leading
causes of death in the U.S.: heart disease, cancer, and stroke.
Oral Health
Good oral health is important and can affect the health and well-being of a person’s life. Oral
health is more than just having healthy teeth; for example, lifestyle behaviors, such as tobacco
use, can affect general and oral health. Oral diseases and conditions are associated with other
health problems as well. However, safe and effective measures exist to prevent the most
common dental diseases.
Respiratory Virus
Respiratory syncytial virus—or RSV—is a virus common in childhood and important among
older adults. RSV infects the lungs and breathing passages. Most otherwise healthy people
recover from RSV infection in 1 to 2 weeks. However, infection can be severe among some
people.
Substance Abuse
Alcohol, tobacco, illicit drugs, and prescription medications all can be substances of abuse.
People with disabilities might have multiple risk factors that can increase their chances for
substance abuse.
Violence
Violence is a serious public health problem in the United States. People with disabilities are 4 to
10 times more likely to become victims of violence, abuse, or neglect than people without
disabilities. Children with disabilities are more than twice as likely to be physically or sexually
abused as children without disabilities.
Article available at: https://www.cdc.gov/ncbddd/disabilityandhealth/relatedconditions.html
29

Your Everyday Guide to Living Well with Muscular Dystrophy
By Becky Upham
Everyday Health, 23 July 2020
(Medically reviewed by Joy Tanaka, PhD)
Using a wheelchair or other assistive devices is one way to stay mobile and independent.
The level of disability caused by muscular dystrophy varies widely depending on the type of
disease a person has and when the symptoms of the disease first appear. For some people with
muscular dystrophy, even everyday activities like brushing teeth or getting in and out of a car
present a challenge, while for other people, those types of activities and much more remain
doable.
All types of muscular dystrophy result in progressive weakness, loss of muscle, and subsequent
loss of control of movement, says Steven Shook, MD, a neurologist at the Cleveland Clinic in
Ohio who treats patients with muscular dystrophy.
But, Dr. Shook says, “a diagnosis of muscular dystrophy doesn’t mean you can’t go on to live a
very full and rewarding life. I have many patients who are living proof of that.”
Learning how muscular dystrophy can affect you and what solutions are available can help you
live your best life while managing the disease.
30

Managing Daily Life and Complications of Muscular Dystrophy
Is there a best diet for muscular dystrophy? What about exercise? Which mobility devices are
worth a try? And what home modifications will make it possible for you to be able to access all
parts of your home? Here are some tips and information to make your daily life easier.
Diet for Muscular Dystrophy
There is a lot of research and interest around how diet may improve or worsen different chronic
illnesses, according to Lauren Elman, MD, the director of the Muscular Dystrophy Association
Clinic at the University of Pennsylvania in Philadelphia.
"Unfortunately, there aren’t really any ways that we know of to improve or change the course of
muscular dystrophy through diet. There isn’t anything special in the diet to help or hurt muscular
dystrophy," says Dr. Elman.
The general dietary suggestion is to maintain a healthy weight, Elman says.
“Weight gain is sort of the enemy in muscular dystrophy. You don’t want to be carrying around
too much weight on weak muscles, because that would make things in daily life more difficult,”
she says. Weight control is mostly dependent on the appropriate number of calories, since
people with muscular dystrophy often have a very hard time exercising. That being said, “We
don’t recommend that people lose too much weight, because you need good nutrition to
maintain muscle health.”
As far as macronutrients are concerned, even though protein is typically associated with muscle
growth, a high-protein diet isn’t recommended for people with muscular dystrophy, says Elman.
“There’s absolutely no recommendation for a high-protein diet in people with muscle disease.
People with muscular dystrophy should eat the same recommended amounts of protein that a
healthy individual without muscular dystrophy should consume,” she says.
Exercising With Muscular Dystrophy
Exercise advice for people with muscular dystrophy has to be very individualized, according to
Elman. “The range of abilities in people with muscular dystrophy is extremely variable. It can go
from people being mildly disabled to the other end of the spectrum, where people are in
powered wheelchairs and really have extraordinarily limited mobility,” she says.
For those who are physically able, exercise can be a very helpful part of their regimen, but it’s
not really recommended for individuals who struggle, says Elman. “The most useful advice I can
give to an individual with muscular dystrophy when it comes to exercise is, ‘If it hurts, don’t do
it.’ Anything that is painful is really beyond what is necessary or recommended, and it means
you’ve gone too far,” she says.
“It’s also a general rule through neuromuscular disease that any muscle that does not have antigravity
strength should not be exercised,” says Elman.
“There have been small studies that show that in different cases, nonstrenuous exercise may
improve things like quality of life, but there’s never been anything to show that it slows disease
progression,” says Elman.
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“I tell my patients, ‘You cannot exercise your way into or out of this disease.’ If improving or
slowing muscular dystrophy was that straightforward, all of my patients would belong to the
fanciest gyms that existed, because they are very dedicated individuals; if they could do
something to prevent themselves from being in a wheelchair, they most certainly would. It’s not
a matter of not trying hard enough; it’s just simply not possible,” says Elman.
Managing Your Prescriptions for Muscular Dystrophy
For most types of muscular dystrophy, there aren’t medications for the underlying disease itself,
says Elman. “There are only a few muscular dystrophies for which we have actual treatments. In
most cases we only have supportive therapy, which are medications to manage symptoms,” she
says.
Depending on what type of muscular dystrophy a person has and the progression of the
disease, some people need medications for conditions that may develop as a result of the
disease, she adds.
Your healthcare team is the best resource to identify which medications may help your particular
symptoms or complications and how best to take them. Your pharmacist can also recommend
such tools as pill organizers, easy-to-open pill bottles, and renewal reminders if you’re having
difficulty remembering to take or renew medications or simply get them out of the bottle.
Complementary and Alternative Medicine for Muscular Dystrophy
Although many people are very interested in how different supplements or herbs may help
muscular dystrophy, there are no particular supplements that have ever been shown to be
helpful to improve the symptoms or change the disease progression unless a person has a
specific deficiency, says Elman.
“Cardiac health, bone health, and gastrointestinal health (GI) health are all important, but no
specific dietary supplement has ever been shown to change the course of neuromuscular
disease,” she says.
Vitamin D
Vitamin D levels should be checked, because bone health is very important in muscular
dystrophies because of the higher risk of falling, says Elman. “If a person is deficient, I
recommend and treat them with vitamin D — not because it may help their muscular dystrophy,
but because it may help prevent them from having a fracture if they do fall,” she says.
Essential Oils
Essential oils are collected from plants using processes like distillation (using steam) or cold
pressing. The extracted substance is then added to a “carrier” oil to create the finished product.
The oils can be inhaled for their scent or massaged into the skin and can have therapeutic
benefits for some conditions.
“I’ve had patients tell me that they enjoy being massaged with essential oils, but beyond that
physical experience of enjoyment, I don’t know of any medical benefits for muscular dystrophy,”
says Elman.
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Home Accessibility and Muscular Dystrophy
The modifications that need to be made to a living space depend on the person and their needs.
Accommodations for a wheelchair may be necessary, but there are smaller changes that can
make life easier and safer for people who are still walking.
The Muscular Dystrophy Association (MDA) recommendations for making a living space more
accessible include:
• Alter doorways by removing molding or taking doors off completely to help a wheelchair
pass through more easily.
• Replace doorknobs with lever-style handles, or install an automatic door opening system.
• Lower the bed by using a smaller box spring or no box spring.
• Use a lift or sling for getting in and out of the bed or bath.
• Install a floor-to-ceiling grab bar to help someone get out of a chair or bed.
• Install railings in stairways, in the bathroom, and throughout the home, if needed for
support.
Before you invest a lot of money in home renovations, talk to the members of your muscular
dystrophy care team, including an occupational therapist, for advice on which changes will help
the most right now. The Muscular Dystrophy Association Resource Center lists sources of
additional information on home modifications.
Mobility Aids for Muscular Dystrophy
Whether or not to use a mobility aid and what type is an ongoing conversation to have with your
physician, says Elman. “Depending on the individual, people may be reluctant to use mobility
aids just because it can be a hard transition to get your brain around,” she says.
Usually, the conversation focuses on two important issues: energy conservation and safety,
says Elman. “Mobility devices can help a person stay active and outside in the world and
continue to participate in their daily activities safely; that’s our main goal, to keep them engaged
in their active daily lives,” she says.
Braces, or orthoses, that fit around the ankles or knees are designed specifically for energy
conservation and help with the work of walking so that people get a little more “bang for their
buck” every time they take a step; they can also reduce the risk of tripping and falling, says
Elman. “Although some people are reluctant to try braces, I find that about two-thirds of the
people to whom I prescribe them find them very helpful,” she adds.
In addition to braces, the following can help a person move around safely and independently:
• Canes or walking sticks There are two main types of canes: single-point canes, and fourpoint
canes, where four pegs connect to the main shaft. Some people also elect to use two
canes, one in each hand.
• Crutches can bear more weight than canes. Newer stabilizing crutches with behind-theshoulder
support can help the user stand more upright.
• Walkers A walker is a good choice if you notice that you’re beginning to stumble more. A
standard walker has rubber grips on the bottom to help with stability.
• Rollators Rollators are similar to walkers, but instead of flat rubber grips on the bottom,
rollators have wheels on the bottom.
• Wheelchairs and scooters Eventually a manual or powered scooter or wheelchair may be
necessary to travel longer distances.
33

A physical therapist, working in tandem with your physician, can help you identify which mobility
devices will be most helpful to you and teach you to use them correctly.
Traveling With Muscular Dystrophy
With the right preparation and advance planning, travel can be enjoyable for someone with
muscular dystrophy, says Elman. “I’ve had many people who I care for travel the world and
have enjoyable trips and very good memories, but it does require a little bit more planning than
for people who don’t have extra needs,” she says.
Keep in mind that some ways of traveling are easier than others, says Elman. “For example,
cruises are a very good way for people in wheelchairs to travel, because almost everything is
accessible. It can be somewhat difficult to bring a powered wheelchair on an airplane, because
they often are damaged when they’re in the cargo hold, and so you have to be prepared in case
that happens,” she says.
“Almost all hotels have accessible rooms, but you need to make sure you book that in advance.
If you have specific needs that are not always included in a wheelchair-accessible room — for
example if you need a Hoyer lift to transfer between bed and chair — that would need to be
arranged in advance,” says Elman.
If you use a wheelchair, the key to a successful travel experience is to communicate well in
advance, says Elman. “Think about each step of your trip, and email or call the travel agency,
airline, and hotel to let them know exactly what you need. Doing research and planning about
transportation and dining options ahead of time can help you relax and enjoy yourself once you
arrive at your destination,” she says.
Finding Doctors for Muscular Dystrophy
Most people with muscular dystrophy have a team of medical professionals to help with different
aspects of the condition. Which doctors you need and when depends on how your muscular
dystrophy is affecting you. Here’s an overview of many of the doctors who treat aspects of
muscular dystrophy.
Cardiologist Many types of muscular dystrophy can lead to heart problems, including heart
failure from cardiomyopathy (heart disease) and arrhythmias, says Shook. In those cases, a
cardiologist, who specializes in diseases of the heart and the blood vessels, should be on the
healthcare team.
Dietitian A registered dietitian is often included in the multidisciplinary care team to help manage
nutrition and calorie intake.
Endocrinologist An endocrinologist may be on the healthcare team to monitor bone health,
particularly in people with Duchenne or Becker muscular dystrophy, who are at higher risk of
osteoporosis if they take steroids. Simply not walking, or not performing weight-bearing
exercise, also raises the risk of osteoporosis.
Gastroenterologist Some types of muscular dystrophy, including Duchenne and Becker
muscular dystrophy, may affect gastrointestinal (GI) motility, which refers to the movement of
food through the digestive system, says Elman. A GI doctor can address this issue along with
the symptoms of pain, bloating, and severe constipation.
34

Geneticist A geneticist may be consulted at the time of diagnosis, to determine whether a
person has muscular dystrophy and what kind. Couples with a family history of muscular
dystrophy who wish to have children may also consult a geneticist to discuss the likelihood that
their children will inherit it.
Neurologist Muscular dystrophy is often managed by a neurologist, who can provide treatment
and therapy that specifically relates to the disease, as well as recommend specialists or
therapists for conditions that come along with it. In some cases, neurologists may also help
patients manage other medical issues, such as pain and depression.
Orthopedist or orthopedic surgeon These doctors specialize in the bones and joints and the
muscles and other soft tissues attached to the bones. Sometimes people with muscular
dystrophy need surgery for contractures, when the muscles and tendons around the joints
become fixed or frozen, or in severe cases of scoliosis, or spinal curvature.
Physical therapist Physical therapists can recommend stretches and safe forms of exercise and
generally help people with muscular dystrophy remain active and mobile.
Primary care doctor A person with muscular dystrophy will need a primary care doctor to take
care of medical needs not related to muscular dystrophy, such as immunizations and other wellperson
care.
Psychiatrist or psychologist These specialists can treat depression and anxiety, which are more
common in almost all chronic diseases, including neuromuscular disease and muscular
dystrophy, says Shook.
Pulmonologist and respiratory therapist People with muscular dystrophy can have difficulty
breathing because of weakened muscles in the diaphragm and abdominal region.
Pulmonologists can evaluate breathing and decide if and when an individual needs assistance
from a ventilator or help with coughing and clearing mucus. The pulmonologist or a respiratory
therapist can teach techniques for maximizing lung capacity and using any respiratory
assistance devices.
Social worker “These professionals can help connect patients with all the resources we have in
the community to make sure they have the nursing care and nursing support at home that they
need,” says Shook.
Speech-language pathologist This expert is consulted if a person with muscular dystrophy
develops dysphagia, which is difficulty or discomfort in swallowing, which can lead to
dehydration, malnutrition, and weight loss, as well as pneumonia, if food or liquids are inhaled
into the lungs.
Your Mental Health and Muscular Dystrophy
Mental health is one area that is still overlooked in many diseases, but professional
psychological support is essential to improve the emotional well-being of those living with
muscular dystrophy and their families.
Getting a diagnosis of muscular dystrophy, or having one’s child diagnosed with muscular
dystrophy, can feel devastating. The fact that the disease is progressive and has no cure means
that an individual’s or family’s vision of and hopes for the future are suddenly shattered. In the
35

case of Duchenne muscular dystrophy, it also means that an individual’s life expectancy is
much shorter than the individual and family previously believed.
Meeting with a qualified mental healthcare professional who is knowledgeable about muscular
dystrophy can go a long way toward helping the person with muscular dystrophy and their family
adjust to their “new normal.” This is true at the time of diagnosis and also true at other times of
transition, such as when a child, teen, or adult first needs to start using a wheelchair, or at times
of loss, whether of abilities, independence, relationships, or feelings of productivity. A therapist
can help those affected by the disease deal with the emotions that come up and can also help
family members learn to communicate with and support each other.
Because people with muscular dystrophy are at higher risk of depression and anxiety, “They’re
something that we screen for in every single patient that comes to see us,” says Shook.
“Depression and anxiety are important to treat to help give people the quality of life they
deserve.”
If anything changes in your life situation or your mood, you should check in with your healthcare
provider, says Elman. Depression and anxiety “are very treatable problems that can be
managed in many different ways. In addition to working with a professional therapist, there are
strategies you can employ, such as mindfulness and meditation and strengthening your social
support network,” she says.
One way to strengthen your social support network is to connect with others living with muscular
dystrophy. The MDA’s summer camps for kids, for example, give children a chance to make
friends with others facing similar challenges, and their young adult programs offer one-to-one
support, along with other resources. Parent Project Muscular Dystrophy has a Facebook group
for teens and adults with Duchenne and Becker muscular dystrophy (and their loved ones) that
provides a safe place to discuss topics that are important to daily life.
Other patient advocacy organizations focusing on specific forms of muscular dystrophy — such
as Cure CMD, FSHD Society, LGMD Awareness Foundation, and Myotonic — can also be
sources of peer support.
How Muscular Dystrophy Can Affect Your Relationships
Oftentimes, a parent or spouse is a caregiver for someone with muscular dystrophy, says
Elman. “In some cases, this can create a lot of stress, and so we do address that. There are
situations where I have recommended professional counseling.”
“It can help to have the spouse or significant other come to the doctor’s appointments so that we
can discuss the progression of the disease, what the needs are, and what the stressors are at
home in order to have that all out in the open,” says Elman. “In many cases, muscular dystrophy
can get worse during the course of a marriage, and that can be a stressor; I think it’s important
to acknowledge that,” she adds.
Statistics show that individuals who have had muscular dystrophy from a very young age do not
form usual and customary care bonds such as getting married, says Elman. “Counseling and
support groups can help address some of the issues that can come with that,” she says.
Family Planning with Muscular Dystrophy
For people who have muscular dystrophy or who carry a genetic mutation that causes it, there
are additional issues to consider around whether or not to have children.
36

“Ideally, a couple would meet with a genetic counselor before they decide to conceive, says
Priya V. Rajan, MD, the medical director of diagnostic ultrasound and an associate professor in
obstetrics and gynecology at Feinberg School of Medicine at Northwestern Medicine in Chicago.
It’s important to talk through the likelihood of their offspring inheriting their condition and what
implications that may have down the road for those children, she says.
If the mother has muscular dystrophy, that may impact her health and pregnancy and should be
discussed as well, says Dr. Rajan. “Some women are minimally impacted by their muscular
dystrophy, but in some types, it can affect your heart or there can be mobility issues. There can
be risks associated with different types of muscular dystrophy, and so it’s important to be seen
by the appropriate specialists and have any necessary testing performed,” she says.
Drugs and Medication for Muscular Dystrophy
Currently there aren’t medications that can stop or reverse muscular dystrophy, but there are
medications that can help with muscle weakness for certain types of MD, says Shook. “The
most common treatments specifically for Duchenne or Becker muscular dystrophy are steroids,
such as prednisone. The idea is the steroids can slow the muscle degeneration and help retain
strength,” he says.
Two other drugs are used in some people with Duchenne muscular dystrophy: Exondys 51
(eteplirsen) is approved for people with Duchenne muscular dystrophy who have a confirmed
mutation in the dystrophin gene that can be treated by skipping exon 51. Dystrophin is a protein
needed for muscle strength and protection. Vyondys 53 (golodirsen) is approved for people with
DMD who have a confirmed gene that is amenable to exon 53 skipping.
By “skipping” a faulty exon — or section of a gene made of DNA that codes for the protein
produced by that gene — these therapies can allow for the rest of the protein to be made
correctly. The drugs don’t cure the disease, but it is thought they may slow the progression of
Duchenne by increasing dystrophin production. But they are limited to treating people with
specific mutations only.
Money Matters: The Cost of Living with Muscular Dystrophy
Living with a chronic disease that requires regular medical treatment and sometimes special
equipment and that tends to negatively affect a person’s ability to work and earn an income is
likely to have a negative financial effect on the individual.
Indeed, a study done by the Muscular Dystrophy Association and the Lewin Group, a consulting
company, and published in the March 2014 issue of Muscle & Nerve, calculated the annual perpatient
cost of having Duchenne muscular dystrophy at $50,952, and the annual cost of having
myotonic dystrophy at $32,236. Those amounts include medical costs; nonmedical expenses,
including the costs of moving or adapting a home for the person with muscular dystrophy as well
as the cost of paid caregiving; and loss of income.
A more recent study, published in June 2017 the Journal of Managed Care & Specialty
Pharmacy, focused on the medical and pharmacy costs associated with Duchenne muscular
dystrophy. It found that healthcare costs were 10 times higher for individuals with the disease
than for those who didn’t have it: $23,005 per year versus $2,277. It also found that costs for
people with Duchenne muscular dystrophy increased with age: Average annual costs for those
ages 14 to 29 were $40,124, compared with $21,553 for those ages 0 to 13.
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Medication Prices for Muscular Dystrophy
The costs to the individual of medications to treat muscular dystrophy can depend on many
factors, including what kind of muscular dystrophy a person has. Insurance coverage for
different medications may also vary and can be especially tricky for some drugs that are
prescribed “off-label” for muscular dystrophy, says Elman.
“These are medications that have been approved for other conditions, and they also work for
the symptoms of what we prescribe them for in muscular dystrophy. They are off-label because
they haven’t been approved for that condition — there’s never been a study [on the drug] in this
disease state,” says Elman.
In those cases, many patients can’t get the medication, or they have to pay the full cost out of
pocket, says Elman. “That can be frustrating and a disappointment,” she adds.
The medications approved to treat Duchenne muscular dystrophy can be expensive. In a July
2019 report by the Institute for Clinical and Economic Review, an independent and nonpartisan
research organization that evaluates the clinical and economic value of prescription drugs,
investigators found that the costs for eteplirsen (Exondys 51), golodirsen (Vyondys 53), and the
corticosteroid deflazacort (Emflaza) were all higher than commonly used cost-effectiveness
thresholds would indicate.
Managing Your Work Life With Muscular Dystrophy
Some people are diagnosed with muscular dystrophy in adulthood, which means they likely
have a job at the time of diagnosis.
“I do recommend that patients continue to work if possible, because it’s often what makes
people feel more like themselves; as long as they can continue to do this without being too
exhausted, that’s often the best thing for them,” says Elman.
Whether that is possible depends on the nature of their job, she says. “If they work as a physical
laborer, that often just can’t continue no matter what. If the person has more of a desk job and it
feels manageable, continuing to work is usually something that can make them feel more like
themselves for a period of time, and that can be very positive,” says Elman.
Accommodations are protected under the Americans With Disabilities Act (ADA). Examples of
these sorts of changes would be a flexible schedule, the ability to work from home sometimes,
mobility aids, or even modified assignments. Elman often writes letters of accommodation for
individuals who want to continue working. “For example, I have some patients who might work
two days from home and three days in the office to cut down on the fatigue and to keep them
working longer,” she says.
The range of possible accommodations is also an important consideration for people diagnosed
with muscular dystrophy as children who are entering the workforce with some physical
limitations. The Job Accommodation Network is a good place to turn to for information and ideas
on how various disease-caused limitations can be accommodated.
[… ]
Article available at: https://www.everydayhealth.com/genetic-diseases/everyday-guide-to-livingwell-with-muscular-dystrophy/
38

Living with disability
By Sikhumbule Ngqokoma
My name is Sikhumbule Ngqokoma, the author of two poetry books about living with
disABILITY.
Publishing my two books was the most traumatic experience but exciting at the same time. One
of the most difficult challenges I had to face was to find a publisher, and also financial issues. I
published my first one in 2019 and the second one in 2021. I'm still selling my books myself,
since I have not yet found any libraries or book stores for them.
I think they are good books, because most of the poems are encouraging and motivating,
especially for those who are living with disABILITY and also those who want to understand more
about people with disabilities. The books talk of ABILITY within disability.
My biggest dream is to get sponsors for them, so that they can reach more people. I believe in
writing because words are your voice that can speak even when you are dead; they can talk on
your behalf to people that you will never see.
I'm still struggling to publish more books, but one day it'll be fine.
39

Actor and comedian with muscular
dystrophy works to open doors for more
disabled stories
By Scott Fontana
Everyday Health, 7 August 2020
Steve Way advocates for universal healthcare, disability rights, and more film roles for disabled
actors.
Steve Way wants you to know that, really, he’s “a regular guy.”
That’s not entirely true. Most regular guys aren’t earning recognition for their acting on TV like
Way, who appears in the award-winning Hulu comedy series Ramy. The 29-year-old even had a
For Your Consideration campaign to earn an Emmy nomination for his portrayal of Steve, a
heightened version of himself.
And while in many ways, Way is a regular guy who has to pay rent and work for a living, a
millennial who likes video games and watches pro wrestling, he points out, “I need help with a
lot of stuff.”
That’s the reality for Way, who was diagnosed with congenital muscular dystrophy at age 4. At
25, his diagnosis was clarified as Ullrich congenital muscular dystrophy, which Way calls “super
40

are.” Although he doesn’t know exactly how many people have it, he says that “for my specific
genetic mutation, there’s only one other person who has it.”
To this day, Way sees the same orthopedist and cardiologist who saw him at birth, when he
“came out backwards, upside down, with my feet wrapped around my head, and my hands and
my feet were floppy.” He did not walk until age 2, and he has been in physical therapy “for as
long as I can remember.” He has not walked since age 10, when he became a full-time
wheelchair user.
Lifelong Friendship Born of Adversity
While Way would not walk again, it was around that age that he was already laying the
groundwork for a career on screen. He got involved with public speaking through the Muscular
Dystrophy Association. He also struck up a friendship with Ramy Youssef, who has gone on to
become the creator and Golden Globe–winning star of Ramy.
In fall 2001, Way switched schools within his hometown of Rutherford, New Jersey, because his
former school was not wheelchair accessible. Youssef was already a student at Way’s new
school.
“The way we talk about it now is like, we kind of bonded [over] being outcasts,” Way says. “Me
being the new kid in school, and everyone else kind of hearing what their parents are saying
about Muslims after 9/11 and seeing Ramy and not really getting it. So, we really got together
because of [our] shared experiences. And it really took the show for us to understand those
feelings.”
That experience was dramatized for a season 1 episode of Ramy, which drew critical acclaim
for depicting a fictionalized version of how Youssef, born in New York City to Egyptian parents,
experienced the aftermath of the September 11 terrorist attacks as a Muslim fifth grader just
miles away from the World Trade Center in the New Jersey suburbs. The episode ends with
Youssef’s character, Ramy, a fictional version of himself, meeting and walking to school
alongside 10-year-old Steve.
“Really, what you saw in episode 4 is pretty true,” Way says of the birth of their decades-long
friendship.
Brutally Honest Stand-up Comedy
As Way and Youssef grew older, they both gravitated toward TV and film. They had access to
the Rutherford High School TV studio as freshmen and took full advantage. Way says that
teacher Alan Weber put off retirement thanks in part to the boys’ enthusiasm for film, and the
borough’s board of education granted their petition to have an independent study for film as
seniors.
“We would always take out cameras, make videos, and that really kind of grew all throughout
high school,” Way says. “The production and the quality of our videos just got better.”
Shortly after high school, Way and Youssef entered the New York stand-up comedy scene,
performing at the Peoples Improv Theater in Manhattan’s Flatiron District, before shifting to
acting. Way acknowledges that he stands out in that world, so he makes sure to address his
disability every time he performs.
41

“I absolutely have to,” Way says. “Because if I don’t, they’re going to make assumptions. And
right from the very beginning, I have to make sure that they don’t feel bad for me. Because if
they do that from the beginning, then it’s not going to change, or it’s going to be really hard to
get them to change.”
Those who have seen Way’s character on Ramy or have seen his web series Uplifting
Dystrophy know what his brand of comedy is like: in-your-face, profane, and “brutally honest
about my life.”
“I’m not afraid to hide the more uncomfortable details of my life,” says Way, who cites George
Carlin, Rodney Dangerfield, and Hannibal Buress as his top three comedic influences.
Auditioning to Play Himself on ‘Ramy’
Way says the Steve viewers see on Ramy is “pretty accurate” to how he is in real life, with one
distinct difference from the most Steve-centric episode of the first season: “I never hooked up
with an underage girl. That never happened. That’s a fictional story in a fictional universe. It
never happened. I’m playing a character. I have to say all that.”
Stories such as that one, while merely a work of fiction, illustrate how Way is playing against
stereotypes for people with disabilities. And behind the scenes, he’s working to bust down doors
for disabled actors. To even appear as Steve on Ramy, he and Youssef had to sell executives
on the idea of a disabled actor portraying a character with a disability.
“Basically, [Youssef] wrote my part, he showed Hulu my parts, he showed them my stand-up, he
showed them a bunch of my other videos I had done, Vines, other videos I was in,” Way says,
“and Hulu responded with, ‘Great. Who’s gonna play Steve?’ And Ramy said, ‘Steve is gonna
play Steve.’ So I still had to audition for my own part.”
Way says this particular audition was “pretty much only me” vying for the role but that “there
have been times where I was the only disabled person auditioning for a disabled character, and
I didn’t get it.”
Hopes for More Disabled Actors Telling More Disabled Stories
Already, Way believes attitudes are changing in Hollywood about casting disabled actors and
telling disabled stories.
“I think people see me on this award-winning show, and I think they’re starting to understand:
‘Oh, if he can do it, anyone else can do it.’”
He is currently developing a series with Apple, hoping to get the green light for what he refers to
as “my Ramy. But I’m not gonna call it Steve. Ramy has a much better ring to it than just Steve.”
“I just want to open the door for more disabled stories and more diverse disabled stories,” Way
says. “I’m disabled, but I’m also a straight white guy. I can’t tell the story of someone who is
Black and disabled, or gay and disabled, or trans and disabled. Those stories have to be told
too. So that’s what I really want to happen.”
Advocating for Access to Better Healthcare
Plenty of actors are socially conscious, but few of them get involved in the same manner as
Way. In his hometown, he cochairs the Rutherford Civil Rights Commission, which he joined
after experiencing discrimination at a local restaurant. He recently joined the board of Disability
42

Rights of New Jersey, a nonprofit that advocates for the human, civil, and legal rights of citizens
of New Jersey with disabilities, according to its website.
Ultimately, Way hopes to use his platform as an actor to spur change and fight for a better world
for those with disabilities.
“I kind of want to use that to be the guy that goes in front of Congress or the New Jersey State
Senate and be like, ‘Hey, we need that. Yeah, you know me, I’m on TV. But, we’re having these
problems.’” Way says. “Kind of like how Jon Stewart was the guy for 9/11 first responders, I
want to be that guy for the disabled community and healthcare.”
Way is passionate and vocal about the need for U.S. healthcare reform. He has chronicled a
2½-year struggle with his health insurance provider to get “just the bare minimum care” to
survive, which he says tends to be the norm.
“I can't even get that,” Way continues. “And my health insurance provider tells me that I’m not
disabled enough because I don’t fit the criteria on a four-page rubric that determines how
disabled you are.”
As far as what he might tell a legislative body if given the chance, Way has a few ideas for what
improvements he would suggest.
“One is, obviously, universal healthcare. Another is changing Medicaid restrictions. Because,
right now, people on Medicaid, they cannot have more than $2,000 to their name. They cannot
get married. They cannot own a home. They cannot own a vehicle. It’s a system that’s just
designed to keep us in poverty, to keep us from moving up in society.”
Total Lockdown During the COVID-19 Pandemic
Since the arrival of the COVID-19 pandemic in the United States, Way has been forced to adjust
to an even greater degree than most. Because of his disability, he is immunocompromised and
thus is at higher risk for contracting a severe case of the disease that has turned the globe
upside down for much of 2020.
A big part of managing his disability, as well as a heart condition, is “doing anything I can to not
get sick, doing anything I can to keep my lungs clear and healthy and open,” he says. Clearly,
that’s more important than ever in the current climate.
“Now, I don’t go out at all. I don’t do anything. I don’t interact with anybody. It’s pretty much just
[a] total lockdown,” Way says. “… I’m losing my mind. If I have to do that to stay alive, then so
be it.”
Still, Way continues in his various roles from the bedroom of his parents’ house, thanks to
videoconferencing. He says that if the technology had been available and widely adopted for
students and professionals when he was growing up, it would have made a world of difference
during his childhood. At various points as a young student, he was not physically at school with
his classmates for months at a time and was forced to keep up with his studies from home.
“If I had all this [videoconferencing] 10, 15 years ago, oh man, it would have made my life so
much easier,” Way says. “If kids can have that now, that’s great.”
43

Visibility, Good; Recognition, Even Better
While Way did not garner a nomination for Outstanding Guest Actor in a Comedy Series for his
work in the May-released second season of Ramy — and hadn't harbored high expectations
before the July 28 announcement — he’s still looking at the bright side.
With Ramy renewed for a third season earlier this month — and Way’s pal Youssef one of six
nominated for Outstanding Lead Actor in a Comedy Series — Way may get another chance for
recognition for his work on the acclaimed series in the future. He also observes that to be
nominated would be a serious boost to disabled actors in Hollywood.
“That would just change the game even more,” Way says. “Me being on TV definitely changed
the game. But getting a nomination — that shows this is serious. Writers, directors, producers,
casting directors, they [would] have to take us more seriously.”
Article available at: https://www.everydayhealth.com/genetic-diseases/actor-and-comedian-withmuscular-dystrophy-works-to-open-doors-for-more-disabled-stories/
Article
News.
master’s
Dystrophy
Betty has a
44

Travel
SETTLE INN @ ADDO
By Hilton Purvis
Long-term regular readers will know that we frequent the Addo Elephant National Park as often
as we can. Looking through our archive of photographs, we see that the digital images go all the
way back to 2001, and the old film images will probably go even further, probably back to 1995.
We cannot get enough of the elephants and never tire of their sightings. They are without
doubt the most rewarding game animal to watch, and Loretta has in the meantime become a
recognised elephant photographer.
On our last trip up the Garden Route we decided to try something completely different. For
some time now we have been contemplating finding more affordable accommodation outside
of the Addo national park. SANParks accommodation has become extremely expensive and
increasingly geared towards foreign tourists, whilst at the same time the condition of their
chalets has deteriorated noticeably.
After a great deal of googling, countless emails and WhatsApp messages combined with
cellphone photographs of bathrooms going backwards and forwards, we finally settled,
appropriately, on an establishment called "Settle Inn".
Located just 1 km from the southern Matyholweni gate, it is about as close to the park as one
can get without actually being inside the park. We had to shift our mindset 180° since we
normally stay in the main camp, which is located in the north of the park, and spend the day
travelling south. This time we would be staying south of the park and spending our day
45

travelling north. Either way we had the opportunity of covering as much of the park as we
required each day.
Settle Inn is located within a secure complex of houses and offers a remarkable level of comfort
for a price of less than half of the SANParks chalet rate! This meant our decision to stay with
them was effectively a no-brainer.
Settle Inn offers a variety of rooms
depending on the number of
occupants, and we chose the
accessible unit which has a single
bachelor apartment type of layout
with a small lounge, dining area,
sleeping area and open-plan kitchen.
The unit is extremely well appointed
with every conceivable comfort and
kitchen appliance you can imagine. It
was effectively a home from home.
The bathroom is accessible, with a grab rail for the toilet and a roll-in shower. The hand basin is
difficult to reach because of a cupboard placed underneath, and the mirror is above a seated
person's height. The only thing which we missed was a hand shower in the shower cubicle,
which would have made it a lot easier. There is plenty of space in the bathroom, and the room
itself is extremely spacious. Access from the parking area is completely level and fully paved.
Finding Settle Inn has been a revelation,
effectively allowing us either to halve our
accommodation costs or to double the
amount of time we spend there! Not
sure which one is the most appealing, but
it's wonderful to have choices!
And how was the time spent in Addo, I
hear you ask? The same as it's been on
every one of our previous trips, an
absolute treat! Wall-to-wall elephants,
probably nearly 300 each day for eight
days! What more could one ask for?
Keep safe!
Settle Inn
+27 (0)82 489 8816 settle@vodamail.co.za
46

FAIRVIEW HOMESTEAD
By Hilton Purvis
Our favourite, very wheelchair accessible, self-catering accommodation in the little town of
Sedgefield unfortunately closed its doors last year, meaning that we had to then find new
options if we wished to continue to visit that most enjoyable part of the Garden Route. In the
last couple of years we have developed quite a liking for the region, and along the way we have
developed an increasing circle of friends in the surrounding towns. Crossing it off our holiday
destination list was therefore definitely not an option!
We did a great deal of research, most of it
quite frustrating – one would think that
accessible accommodation would be more
readily available by now. Sadly this is not
the case, and genuine wheelchair access
remains as rare as hen's teeth. Don't get
me started on the topic of "universal
access" – a ticked box which everyone
appears to claim for their establishment
but which very few understand or conform
to. Trying to provide something for
everyone is resulting in there being nothing
for anyone.
Months of patient, and often frustrating,
investigation led us to finding a selfcatering
establishment called "Fairview
Homestead", located in the heart of the
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town of George. The historic Cape Georgian home, dating back to 1861, has been faithfully
restored by the existing owners, who took occupation in 1994.
They have a number of rooms which are accessible in varying degrees depending on whether
one is able to stand and/or take a couple of steps. One of the rooms is more wheelchair
accessible than the others and fitted with a roll-in shower and grab rails in all of the appropriate
places, together with an accessible hand basin and mirror (quite a rarity these days). The
magnificent formal garden is accessible in a wheelchair with a little bit of assistance here and
there. The accommodation is easily accessed from the paved parking area across a paved patio.
We would urge anyone staying to set aside a morning or afternoon to spend time enjoying this
garden with the amazing plants and flowers and its abundant bird life.
The town of George also provides one with an interesting focal point from which to explore a
number of enjoyable parts of the Garden Route. There is the Outeniqua Mountain Pass, which
is incredibly scenic, together with the famous Seven Passes Road, which links the town to
Knysna via an amazing meandering route through the forests, crossing over a number of
historic stone bridges. In the town of George itself one should take some time to visit the Red
Berry Farm, which will keep you entertained and well fed at the same time!
Due to its location one can easily use George as a hub for travel to Sedgefield, Herolds Bay,
Groot/Klein Brak, Knysna, Buffels Bay and Mossel Bay.
Fairview Homestead
36 Stander Street, George, Western Cape
phildafairview@gmail.com
+27 (0)82 2269 466
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Regular features
Sandra’s thoughts on…
Your brave space
By Dr Sandra Bredell
An environment that promotes learning, sharing, and personal growth is known as a brave
space. This means that people who are in safe environments can express themselves and
explore new ideas without feeling excluded. Although some topics might make some people
uncomfortable, the pursuit of knowledge or finding a solution is vital.
But let us think about other spaces in life for a minute. Think about what being in a bad space
refers to. It means that things in life are maybe not going your way right now, or that you have
received bad news or experienced loss, or that you are struggling to work things out ‒ there can
be many more examples of being in a bad space. On the other hand, what does being in a good
space mean? It usually refers to being in a good mental or emotional space, believing in
yourself, trusting your abilities, being motivated and energised to do what you are supposed to
do, working towards your goals.
If you are experiencing a bad space, you might feel that it steals your energy and motivation
and ability to think of solutions and affect your decision making. However, being in a good
space makes you believe in your abilities and strengths, and you have a lot of self-confidence. It
might improve your personal growth and development and your sense of being able to make
decisions and find solutions. There is nothing necessarily wrong about being in a good space or
even a bad space.
But against this backdrop, let us look at being in a brave space. Being in this space allows the
person to look at the reality and process the information. Before moving to either one of the
other spaces, a brave space provides you with the opportunity to think critically about the
situation. If it is a challenging situation and needs a solution, a person in a brave space will look
at similar situations that they had to deal with and specifically at how they responded. What did
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they do? The important part here is what worked previously. What did you do that worked well
in the past that could be relevant to the current challenge? Immediately there is room for you
to think about and evaluate past successful decisions and interventions and see how they could
be utilised in the current situation. By doing this, you would feel empowered knowing that you
have some skills to overcome whatever you are facing. You would also experience having the
energy or motivation to make useful changes for the current situation.
In a brave space we not only remember the decisions previously made and the actions taken,
but we also to admit to the feelings we experienced or are experiencing. This allows us to
benefit in a brave space from the opportunity for personal growth and development.
Considering the following six pillars of a brave space (Stubbs, n.d.) might help you to be in your
own brave space:
1. Vulnerability: “Vulnerability is a state of emotional exposure that comes with a certain
degree of uncertainty” (Fritscher, 2021). This does not mean that you have no
boundaries but rather that you are receptive to input that is unfamiliar. You still have to
know what your boundaries are and to keep them in place.
2. Perspective: The way we see things is affected by our own lived experiences. We need
to be alert to this and know it, as our perspective influences how we listen to other
people. This does not mean that we need to think differently, but rather that we should
be aware of our normal outlook.
3. Experiencing fear: This is not always a bad thing. Being willing to face situations that are
unfamiliar and make us nervous can open up opportunities for us to learn and discover
new things about ourselves and others.
4. Critical thinking: This means being willing to question each other’s beliefs and
preferences without taking it too personally and being oversensitive about it. Questions
provide an opportunity to develop in your thinking and ideas.
5. Intentions/expectations: This means being clear about why you say or do something.
What do you intend the outcome of your words or actions to be? This helps you to
clarify your motives.
6. Mindfulness: This is consciously allowing yourself to be in the present moment and to
observe your inner dialogue and emotions. Being mindful of your thoughts and feelings
allows you to quieten them without passing judgement. Practising mindfulness also
enables us to put the other five pillars in place.
We live in a real world with real challenges, so we need to create a brave space for ourselves in
dealing with our experiences. Our brave space might not be perfect, but it is somewhere to
start fostering our growth and development and to continue doing so. All the best in creating
your brave space!
References
Fritscher, L. (2021). Recovering from the fear of vulnerability. Updated on July 15, 2021.
Verywell Mind. https://www.verywellmind.com/fear-of-vulnerability-
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2671820#:~:text=Vulnerability%20is%20a%20state%20of,to%20love%20and%20be%20lov
ed.
Stubbs, V.D. (No date). The 6 pillars of a brave space. University of Maryland.
https://www.ssw.umaryland.edu/media/ssw/field-education/2---The-6-Pillars-of-Brave-
Space.pdf.
Further resources
Creating a brave space for dialogue. (No date). Roosevelt Union Free School District, NY.
https://www.rooseveltufsd.org/site/handlers/filedownload.ashx?moduleinstanceid=3566&
dataid=4472&FileName=Creating_A_Brave_Space.pdf.
ERIC ‒ Education Resources Information Center. (No date). Safe spaces, brave spaces: diversity
and free expression in education, by John Palfrey, MIT Press, 2017 [book review summary].
https://eric.ed.gov/?id=ED590313#:~:text=In%20safe%20spaces%2C%20students%20can,
may%20make%20certain%20students%20uncomfortable.
WINTER IS COMING ....
Cold weather is a challenge for many of us, but for people with muscular dystrophy who are
permanently confined to a wheelchair, it can be a real struggle. We face unique difficulties that
can make wintertime a constant battle. The issue of staying warm…. We tend to have less body
mass, making it more difficult to generate heat. To stay warm, many people with muscular
dystrophy have to pile on layers of clothing, blankets, and even heat packs. But this can make it
difficult to move and manipulate their wheelchairs, not to mention it can be uncomfortable.
Many deal with decreased sensation in their limbs, making it difficult to know when they are
too cold.
So, what can be done to help? A few strategies can make a difference, and I have been
enquiring, googling, debating and agonising over them as I prepare for a winter with possibly
minimal Eskom power.
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Ahh, the age-old question: to air-condition or to heat? First up, let's talk about air-conditioning.
It's the cool kid on the block, the one everyone wants to be friends with. And why not? With its
ability to keep you nice and cosy on even the chilliest of days, who wouldn't want to be its BFF?
Air-conditioning systems are much more energy efficient than portable heaters (gas, oil-filled,
and electric fan heaters). Plus, with all the different options available, you can choose an airconditioner
that fits your specific needs. Whether a window unit, a portable unit, or a central
air system, there's something for everyone.
Second, there's the portable gas heater. This guy is like the road trip buddy you always wanted
– it's portable, it's convenient, and it's always there when you need it. But just like any road trip
buddy, it can get a little smelly and a little noisy. Plus, you have to keep an eye on it or you
might end up setting your house on fire. So, if I like to live life on the edge, this might be the
option for me.
Next, there's the oil-filled 12-fin heater. This guy is like the grandpa you always wanted – it's
comforting, it's dependable, and it's always there when you need it. But just like any grandpa, it
can be a little slow and a little outdated. Plus, you have to keep an eye on it or you might end
up getting an oil leak all over your floor. So, if I wish to take things slow and steady, this might
be the option for me.
And last but certainly not least, there's the electric fan heater. This guy is like a party animal –
it's fast, it's fun, and it's always there when you need it. But just like any party animal, it can be
a little noisy and a little unpredictable. The problem is that while he is wowing everyone on the
dance floor he is consuming power at an alarming rate! Plus, you have to keep an eye on him,
or you might end up overloading your circuit and blowing a fuse. So, if I choose to live life in the
fast lane, this might be the option for me.
So what have I chosen? If the truth be told, I have not committed my credit card to anything
yet, although I am leaning towards an air-conditioning unit. Here's hoping for a warm winter,
with the lights on! I will keep you posted.
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What is genetic testing?
Genetic testing is a type of medical test that identifies the changes in our genes that cause
disease. It is usually performed by studying DNA – the genetic code that provides the instruction
manual to our body.
Why should I have genetic testing?
The results of a genetic test can confirm a suspected genetic condition (diagnostic testing). Once
a genetic diagnosis is confirmed, more specific management and therapy may be provided.
Increasingly therapies are becoming available, which require the exact genetic diagnosis to be
defined. Patients with different genetic faults may qualify for different therapies.
Many patients and their families ask about the possibility of other family members developing
similar symptoms to those of the individual with muscular dystrophy. Accurate information can
be provided only once the genetic diagnosis is determined, as conditions which look similar
clinically may have different inheritance patterns and thus different risks.
Some tests may be able to predict whether an individual is likely to manifest a condition that is
present in their family (predictive or preclinical testing). They may also be used to determine if
an individual is a silent carrier of a condition and whether they are at risk of having an affected
child.
What genetic tests are available for people with facioscapulohumeral muscular
dystrophy (FSHD) and limb-girdle muscular dystrophy (LGMD)?
FSHD and LGMD are two of the muscular dystrophies featured in this issue of the MDF
Magazine. They have some overlapping clinical features but illustrate some important principles
in genetic testing.
FSHD is caused by a complex genetic alteration. The testing requires a laboratory with specific
expertise in FSHD to do the analysis. FSHD testing is usually done as a single test for this
condition. A positive test confirms the diagnosis, and a negative result makes it very unlikely
that the condition is FSHD.
LGMD is a large, complex group of conditions with variable but overlapping clinical features.
There are over 30 genetic subtypes, each of which may be caused by faults in different genes.
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Thus, in 2023, if a diagnosis of LGMD were suspected, the most appropriate genetic test would
be the so-called gene-panel test, where many genes are analysed simultaneously in order to find
the single disease causing a fault in an individual. Such analysis has not always been available
but is increasingly available now with newer genetic testing techniques. Such tests may miss
specific conditions like FSHD.
It is important to emphasise that genetic testing is complex and expensive. It should be
individualised and performed through a medical geneticist or genetic counsellor, who can help to
select the test that is most appropriate for the patient and is most likely to provide the required
information. Such health professionals would be able to explain the value and limitations of
genetic testing for any individual.
Random gravity check…
networking
By Andrew Marshall
Howzit guys,
I was going to write about a project that I have been trying to get underway for ages, but
because of a combination of factors it has taken a bit longer than expected. Hopefully in the
next issue I will be able to tell you about at least one arm of it. Some friends and I are still
working on it, and I don’t want to jinx it ….
I was thinking about what else to write about and had an idea that my china Tyrann brought to
the surface when we were brainstorming ideas for my project. He is actually a huge part of this.
He wanted me to explain some of the things I have accomplished in my life and some of the
incredible experiences I have had, which I couldn’t have accomplished or experienced without
the backing of my awesome family and friends as I have run life’s gauntlet. When you think
about it, we are just monkeys in shoes, and as a species we rely on others from our our ‘troop’,
who work together with us to better our society or fulfil our own personal tasks. Humans are
social beings ‒ it’s just in our nature. Okay, this gets tricky when you bring disability into the
equation, because back when we were less developed and civilised it was a case of survival of
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the fittest. But luckily our society generally values our lives equally now and supports us. I want
to incorporate the support I have personally had into my overall project somehow.
I know I have been born into a very privileged world compared to the vast majority of my South
African peers, but if I didn’t have the people I do in my life I would not have had even a tenth of
my experiences of different cultures and ways of life, both close to home and internationally. I
think the way we interact with each other and treat everyone has a major role in bringing these
opportunities into our lives. If we were full of bitterness and anger because we had been dealt
the cards we have, people may think twice about interacting positively with us and opening the
way for us to share in the kinds of opportunities or experiences they have had.
I have learned along the way that these opportunities and experiences are not always giftwrapped
and handed to us on a silver platter, and sometimes we need to knock on doors and
introduce ourselves to new people and ask for help. The worst that can happen is that they tell
you to go take a hike (and saying this to a dude who is in a wheelchair is pretty rude). Very
often these new people will become good friends. When I met the guy who edited my memoir
a few years ago, and who walked me through the process of writing and publication, all I knew
about him was that he and his wife owned an art gallery and he had written and published a
novel. He was ‘walking’ with a crutch, and it turned out that he had spinal muscular atrophy ‒
some of you may know him, Andrew Miller, who has written for this magazine before. Our
meeting came about at his art gallery in Rosebank, where an artist friend of mine was showing
some work. Andrew delivered a speech on the occasion and mentioned that he was a writer,
and because he also had a disability I thought he’d be a good person to ask to read what I had
written towards my memoir and tell me his opinion. I thought that his having a disability would
help him relate to me better. It turned out he had edited a few books before and worked as a
corporate writer, so he worked with words all day. We are still really good friends to this day,
and he is helping me with the writing of some of the material for my new project. That’s what
knocking on doors can do.
I think any relationships you have need to be nurtured and tended to, though I’m guilty of not
always doing this. I try to keep in contact with all my friends, but most of them have emigrated
and are all over the world now. This is sadly what can happen when corruption gets out of hand
in a country. We are lucky enough to be living at a time when technology is available for us to
video-call each other and use social media to see and comment on one another’s posts, photos
and jokes. I share an inordinate number of jokes on Facebook! My niece tells me that I am old
because I don’t use Instagram, Twitter or TikTok. I have them on my phone but I don’t really
use them ‒ dude, I am getting old.
I also think having a common interest with someone will solidify that relationship. A few years
ago I did a basic psychology MOOC (free online course) and I also have a few friends who have
studied psychology. Talking to them about the topic that they have based their working lives on
and asking them questions brings us closer. One friend who is now an educational psychologist
took me to a brain injury rehabilitation clinic a few years ago after I had done my psychology
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course because I was, and still am, so interested in everything to do with cognition and how the
brain works. And how it sometimes doesn’t.
I also enjoy meeting new people and learning about new ways of life and different cultures. A
group I belong to networks with disabled people in South Africa who have discussions and
teachings on Zoom every fortnight. It is hosting an NPO called Ask a Stranger (I think it’s pretty
much the same concept as the Human Library, which hosts conversations on all sorts of topics).
They train people to meet with strangers on the computer and have them ask people questions
they may not ordinarily ask. I haven’t done this yet but I’m really looking forward to finding out
more about it.
So what I’m saying is people need each other to work with each other ‒ which reminds me of
these well-known words of John Donne (written in 1623):
No man is an island, entire of itself; every man is a piece of the continent, a part of
the main; if a clod be washed away by the sea, Europe is the less, as well as if a
promontory were, as well as if a manor of thy friend’s or of thine own were; any
man’s death diminishes me, because I am involved in mankind, and therefore
never send to know for whom the bell tolls; it tolls for thee.
(From Meditation XVII in Devotions upon emergent occasions, by John Donne.
https://www.luminarium.org/sevenlit/donne/meditation17.php)
We all still need each other. Why not step outside and network? Who knows what experiences
could come our way?
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In Memoriam
Our sincere condolences to the families of our deceased members:
Philip Mphela
Emile Smith
Settie Rossouw
Thyimi Sesetha
Our sincerest condolences to the families at this time. You have our deepest sympathy and unwavering
support. Wishing you peace, comfort, courage, and lots of love at this time of sorrow.
Emile was the author of our children’s book, “I am Zario”. Our hearts go out to his family at this difficult
time and to everyone whose life he touched.
-Ed.
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