MDF Magazine Issue 73, April 2024

MAGAZINE
Summer Issue 73
April 2024
Little Heroes of Hope

MAGAZINE
MDF Support Information
MDFSA NEWS
MD INFORMATION
Stephen Gawking aka The Nuclear Lyricist Bio
Welcome to the Castle: Facing Down and Defeating Your Fears
Dreaming of a good night’s sleep?
Stand Up and Go with Mobile Standers and Standing Wheelchairs
Why I’m looking forward to celebrating my first Valentine’s Day
Breathing problems
Scoliosis in Children with Muscular Dystrophy
REGULAR FEATURES
The view from down here
Sandra’s thoughts on living a simple life
Doctor’s corner
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
The Muscular Dystrophy Foundation of
South Africa
We are a non-profit organization that supports
people affected by muscular dystrophy and neuromuscular
disorders and that endeavours to
improve the quality of life of its members.
Copy editor: Keith Richmond
Design and layout: Gerda Brown
Cover photo of Robert Scott & Dante Fourie at
Muscle Riders function 2023

MDF support information
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 10, 24 Somtseu Road, Durban, 4000
Banking details: Nedbank, current account no. 1069431362, branch code 198765

In the ever-evolving landscape of information dissemination,
the Muscular Dystrophy Foundation of South Africa (MDFSA)
is embracing change. Responding to the dynamic needs of its
readership, the decision has been made to transform the
traditional magazine into a more interactive and accessible
format— a quarterly newsletter in PDF format and an
engaging blog.
Beginning with the quarterly newsletter, the MDFSA aims to
compile a comprehensive overview of all news related to the
Foundation. By collating this information into a succinct PDF
format, the newsletter ensures easy distribution and accessibility
for all readers.
This shift to a more condensed format allows for a more
streamlined reading experience. Readers can download the
newsletter directly, making it available for offline reading,
printing and easy sharing within the muscular dystrophy community.
The focus is on delivering impactful and relevant information
directly to the readers' fingertips.
Simultaneously, the MDFSA is introducing a blog to bring
about a new level of engagement. The blog will be home to
various categories, prominently featuring muscular dystrophy
news, the latest research breakthroughs, innovative treatments,
heartwarming "feel-good" stories, and more.
The blog will be the go-to platform for real-time updates on
research, breakthroughs and advancements in the field of
muscular dystrophy. Readers can engage with these updates,
sharing their thoughts, opinions and personal experiences.
This interactive space aims to create a sense of community
among those affected by muscular dystrophy and their supporters.
Well-loved sections from the traditional magazine, including
"The View from Down Here," "Sandra’s Thoughts," "Doctor’s
Column," and "Random Gravity Check," will now find a new
home on the blog. These features will continue to offer insightful
perspectives, personal stories and expert advice, fostering
a sense of connection within the community.
By transforming the magazine into a newsletter and blog, the
MDFSA is keen on facilitating discussions, interactions, and a
shared sense of community. The intent is to create a space
where individuals affected by muscular dystrophy, their families
and supporters can come together, exchange ideas and
find support.
As the Muscular Dystrophy Foundation of South Africa takes
this exciting leap into a new format, it is with the hope that
the newsletter and blog will not only disseminate information
effectively but also foster a stronger sense of unity within the
muscular dystrophy community. Stay tuned for the inaugural
newsletter and blog launch, marking a new chapter in
MDFSA's commitment to providing valuable, accessible and
engaging content.

Navigating Challenges to Deliver Essential
Social Services in Gauteng
By Rothea Louw
In the bustling landscape of Gauteng, the Muscular Dystrophy
Foundation (MDF) strives to support individuals facing the
challenges of muscular dystrophy (MD). However, our journey
is marked by obstacles that test our resilience and commitment
to deliver essential social work services. From the struggles
of undiagnosed members to the uncertainties tied to government
subsidies, we persevere in our mission to make a
positive impact in the lives of those affected by MD.
One of the primary challenges we face is the lack of awareness
about muscular dystrophy within the community. Many
individuals, unbeknownst to them, have MD, preventing them
from reaching out for the support they need. To bridge this
gap, MDF Gauteng conducts awareness programmes at clinics
to make contact with members.
Gauteng is not only vast but densely populated, making our
outreach efforts a logistical challenge. The social work and
auxiliary workers do home visits in Gauteng, even to difficultto-reach
areas. They aim to identify and assist those who have
MD. This shows the commendable commitment of our team.
As an organisation providing vital social work services, MDF
Gauteng is dependent on subsidies from the Department of
Social Development. This dependence, however, creates tension
and uncertainty about the future of our services. Despite
these challenges, we persist in our efforts to support our
members.
Creating awareness about muscular dystrophy is at the core of
our mission. However, securing time from clinics, schools and
hospitals for our awareness programmes proves to be a challenge.
We persist in our outreach to break through these barriers
to ensure that the community is well informed about MD
and the services we offer. Securing airtime to raise awareness
about muscular dystrophy poses an additional challenge.
Newspapers demanding payment for articles and the financial
strain of depending on donations for equipment support are
additional hurdles we face. Despite these financial challenges,
we remain steadfast in our commitment to our members. We
have an application system in place by which every member
who applies equipment is put on a waiting list. As far as financially
possible, we try to supply them with equipment and
support for their unique need.
In the face of adversity, MDF Gauteng remains unwavering in
its dedication to the community. Despite the obstacles, we
continue to reach out, advocate and provide essential services
to individuals affected by muscular dystrophy. Our story is one
of resilience, community and an unyielding commitment to
making a positive impact, no matter what challenges we encounter
along the way.
Spoiling our Volunteers
By Siphokazi Wonxi
Who wouldn’t want to start their workday like this? In the
basic setting of Edgemead Spar on 13 December 2023,
MDF staff and charity shop volunteers spent time together
over breakfast as they closed the year. This provided
an opportunity for the whole team to connect and share
conversations about ordinary things.

Hope is Running Shaped
By Robert Scott
The Akasia Athletic Club started 30 years ago (in 1993) and
hosts two big races each year, namely the “Akasia 3 in 1”, featuring
three distances to choose from, and the “Dawn 2 Dusk
Circuit Race”. Up until 2010, every year at least 50 of their
members would take part in the Comrades ultramarathon. In
recent years the club has become smaller, but despite this
they have continued to host races and events and to be involved
in community engagement projects and giving back to
those less fortunate.
Sport Pretoria Marathon 2024, participating in the 5km, 10km,
21.1km and even 42.2km races!
Please show them your support by making a donation towards
their Backabuddy campaign and their mission to raise R20,000
for their 2024 running season.
Please show them your support by making a donation towards
their Backabuddy campaign and their mission to raise R20,000
for their 2024 running season.
They have made the incredible commitment to dedicate their
2024 racing season to MDFSA, Gauteng Branch so as to raise
hope and donations for those who are affected with muscular
dystrophy!
Members of the Akasia Athletic Club took part in the Balwin

Muscle Riders flexing for their anniversary!
The Muscle Riders charity cycling team started in 2013 with
the idea of cycling for those who couldn’t. A group of amazing
individuals banded together and decided that they would take
part in the 947 Ride Joburg cycling event every year to raise
awareness and donations for those affected with muscular
dystrophy. The 947 is also not a short ride; it is 97km!
Last year, 2023, was a special year as it was the 10th anniversary
of the team and saw the return of many of our loyal supporters.
On 18 November 2023, the Gauteng Branch hosted their annual
function to say thank you to all the cyclists and supporters.
Our Little Heroes of Hope were also in attendance. The
kids’ team had taken part in the 947 Kids race the previous
weekend and the mountain bike events.
We were totally shocked when the G-Force Cycling Club and
Glencore presented us with a cheque for R250,000. This
amount took the total donations for the Muscle Riders in 2023
to over R320,000, which trumped 2022 and became our most
successful outing ever!
We would like to thank all our cyclists for their amazing support
in 2023 and for helping us in our mission to improve the
quality of life of those affected with muscular dystrophy!
A special word of thanks goes to our amazing sponsors Wheelchairs
on the Run, Cool Tech and Mitsubishi Electric. Your continued
support is deeply appreciated!
We look forward to the 947 Ride Joburg 2024 and cannot wait
to see you all there!
By Robert Scott

Improving Quality of Life
By Robert Scott
Specialised disability equipment is vitally important to many
people living with muscular dystrophy, as it can make a huge
difference in their overall quality of life and our mission at
MDFSA Gauteng to improve our members’ quality of life. We
do our very best to assist members with this equipment when
we have the necessary funds available.
We are extremely grateful that last year we were able to help
many of our members with their equipment needs. Many lives
were improved!
Iron Family takes on Ironman
By Robert Scott
The Ironman event is something amazing, a gruelling event
that consists of a 1.9km swim, 90km bike ride and lastly a
21.1km run!
This sounds intimidating and truthfully it is. But it wasn’t that
intimidating to four (4) remarkable individuals....
Tinus, Marizaan and Roelf Vermeulen, as well as Hildi Steyn ,
decided to take on this immensely challenging event in support
of MDFSA Gauteng Branch to raise awareness and
desperately needed donations.
The event took place in Mossel Bay on 19 November 2023 and
they all finished it! Not only that, they raised an awesome
R10,000 in donations too.
Thank you so much to Tinus, Marizaan, Hildi and Roelf for
their support – we are so proud of you!
PS: Even the MDF mascot, Abiri, went down to Mossel Bay to
show his support!

Parents and Adults Support Group Outing
By Siphokazi Wonxi
On 3 February 2024, the Muscular Dystrophy Foundation Cape Branch team,
together with the Parents and Adults Support Group members, looked like
they were going to release the hottest rap album of 2024 as they enjoyed a
Valentine-themed time out at Green Point Park. Some parents brought along
their kids on this bring-and-share event, and fun was had as we broke bread
and nibbled together. What a grand way to open the year!
It’s feeling a lot like Christmas
By Siphokazi Wonxi
Just like all kids, children with special needs enjoy engaging in fun activities because it allows them a chance to explore and
express themselves in a joyful manner. For some, such activities also give them a chance to break barriers and challenges they
may face in their daily lives. A Christmas party was organised by MDF staff in November 2023 for the muscular dystrophy children
from Astra School. The children enjoyed ten-pin bowling and other games at the Magic Kingdom. The event was supported
by Reach For A Dream. A big thank you to Grand West Spur for sponsoring our lunch on the day.

Parting Ways with Gratitude: A Farewell
to Raj and Lovina Mahadaw
By Wilna Botha
If the KwaZulu-Natal Branch of the MDF could put in an order
for what would seem to be a perfect Treasurer and Office
Manager for the branch, it would probably have looked something
like this:
A Treasurer who is meticulous about managing the organisation’s
money and ensuring that it remains financially
sound; and
An office manager who not only handles the day-to-day running
of the organisation, but also has the professional
knowledge and deep compassion to give counselling and
support to affected members and their families.
If those had been the specifications for an ideal Treasurer and
Office Manager, then Raj and Lovina Mahadaw, who retired
from these positions at the end of March 2024, would have
been the perfect candidates.
Raj had been an Executive Member and Treasurer of the KZN
Branch since 2008, and Lovina was the office manager from
2022. And while both will still be available to provide advice
and, in the case of Lovina, counselling and support where
needed, their departure is undoubtedly a huge loss for the
Branch.
Raj is, however, adamant that it is time for him to go, in order
to ensure the longer-term financial health and sustainability
of the Branch.
‘The EXCO has come on Board now, which is very positive.
Other people must be given an opportunity to step in. There
are other capable people around and we need young blood.
‘We also need someone who is contactable and will be prepared
to work out in the field. It is very important to be there
for the parents – that is probably the most important aspect
of our work.’
A perfect fit for their roles
Both Raj and Lovina have the perfect professional and personal
background to have filled their positions.
‘Because of my background as a forensic investigator and certified
fraud examiner, says Raj, ‘I have had zero tolerance for
any dishonesty or wastage. I’ve treated the MDF KZN Branch
as if it was my own company in which I have a vested interest,
because I understand that everything that we do is for the
children who need all the support that the Foundation can
give them.’
Lovina previously worked for 40 years as a registered nurse
and midwife, and she has poured her nursing experience, as
well as the compassion for others that is so clearly part of her
DNA, into her work for the Foundation.
An even more significant reason why both Raj and Lovina
have been so well suited to operate the MDF’s KZN office is
their experience as parents of their beloved son Shivern, who
was diagnosed with Muscular Dystrophy in 2006, when he
was four years old. He passed away in 2013, at age 11. This
gave them the first-hand insight and a motivation to play a
role in supporting other families and affected members.
As Lovina says: ‘Joining the Foundation, working for it and
reaching out to others helped to give us closure after the loss
of our boy. Sharing the grief of others and giving them whatever
support we could was part of our healing process.’
Drawing on her and Raj’s experience as the highly supportive
parents of Shivern, Lovina has been able to give invaluable
advice to other parents and to young people.
Raj as a ‘zero tolerance’ Treasurer
Raj shares his experience as Treasurer of the KwaZulu-Natal
Branch over 16 years:

‘When I joined, my first focus was to improve the financial
position, taking it from good to great. I monitored expenses –
every cent. I also monitored areas like staffing and labour expenses,
making sure that the salaries we paid justified the
outputs.
‘Some of the Branch’s Executive Committee members, including
myself, all have or had children with muscular dystrophy. I
would like to believe that everyone is therefore personally
committed to making sure that the branch moves forward.
‘Fundraising has been a huge challenge. There are so many fly
-by-night non-profit organisations, which make it very difficult
for genuine organisations such as the MDF.
‘Government doesn’t give us a cent. The new government
made changes in legislation, which shifted funding away from
organisations such as us. Other branches have had to let go of
social workers.
Educating communities
Both Raj and Lovina believe that there is a major need to educate
communities about muscular dystrophy.
Very few parents know what their child’s condition is when
they first recognise that there is a problem. It is important to
educate community members as well as clinic staff.
In South Africa about 1 in 1 000 children is likely to have muscular
dystrophy, but with the population of the country, not
even a fraction of those children is ever diagnosed.
Lovina’s role in sharing her experience as a mother
As a mother who had had no idea what muscular dystrophy
was when Shivern was first diagnosed, Lovina has been able
to share her experience with other parents who have been or
are in a similar situation. She explains how they supported
Shivern when he was still going to school.
‘We have never employed social workers, but as a qualified
nursing sister, Lovina has stepped in to contact parents who
lost their children and to see to their needs. This has been a
great advantage for the Foundation. The two of us have also
made a point of always trying to visit families who lost a child.
‘Fortunately we get a subsidy from the Department of Social
Development, but this year we unfortunately lost out on Lotto
funding.
‘We now have a full-time staff member, Debbie Goldstone as
office administrator. Debbie was the office administrator some
years before, and we urged her to apply for the job once
again. She was interviewed by Head Office, and we were delighted
when they recommended her for the position.
‘Debbie plays an important role in fundraising and is a great
asset. For organisations like ours, fundraising is always a challenge.’
Creating an advisory panel of MDs
One of Raj’s dreams is to create a system whereby all hospitals
will have the name of a doctor as contact person who
could be called on for advice or assistance when parents
come in with an affected child.
‘At the base hospitals, our children need to be treated in a
specific way in comparison to the normal way children with a
disability are treated and hospital staff often do not know
what treatment they need. One contact person in the provinces
central hospital is not enough. Parents are so often given
the runaround and sometimes end up advising the doctor at
the base hospital how to deal with the process with the
knowledge they have, but they should not be the medical advisors
communicating with the attending doctor.’
Raj also believes that affected children should have an emergency
card with them, so that an attending doctor has the
necessary information.
‘Doctors are our point of call for treatment, and it is vital that
the attending doctor at the base hospital should be able to
speak to a doctor at the central hospital, to get the necessary
information.’‘
‘We worked out how to take care of him and what would
make him comfortable at school. I would for example make
sure that he had a fork with which he could eat. Although he
could use the urinal and toilet, caregivers at the school had to
learn how to take care of him and how to make him comfortable.
‘I would send notes to the school about ways in which staff
could support him, help him manage his challenges and build
his self-esteem.
‘It was important for teachers and other children to look at
him and give him a smile, to show them that they were aware
that he was there and to build his self-esteem.’
‘I still talk to parents about ways in which they can boost their
children’s self-esteem.
‘Some time ago we went to a family to communicate with
their son. He would not talk to us but sent notes instead. I told
him to tell his parents to take him out. His muscles are weak,
and so he should go out in his wheelchair. But he can play
games, go to the movies and get out to be with others.
‘This youngster is now working. He is working flexi-time, but
he has a job. And if you talk to him, he will respond to you.
‘It is most important to build young people’s self-esteem. You
don’t need to give gifts, just time and a smile. And members
with MD will give you a smile back.’
Challenges and successes
Raj, Lovina and other members of the Foundation have tried
to support members in other ways, by for example organising
a roadshow across KwaZulu-Natal, but they did not get
enough support from others. Raj still hopes that this this can
happen in future.
While the Foundation has had ups and downs over the 16
years since the Mahadaw’s became involved, there have been
several positive highlights.
After almost a decade of trying, the KZN Branch got registered
as a Non-Profit Organisation (NPO) in 2008. This has opened
up new funding opportunities.

The attendance at the KZN’s AGMs has continued to increase
year by year, a tribute to Lovina’s, Raj’s and Debbie’s efforts
to market the event and make it a memorable occasion. Last
year’s attendance on 9 September broke all previous records.
A highlight was the positive and courageous stories which
young people who are positive role models shared as inspiration
for other affected young people, as well as for their families.
Volunteers have also played an important role in extending
the manpower of the organisation, particularly in setting up
and manning MDF stands at different events across KwaZulu-
Natal.
The next phase
There is no doubt that both Raj and Lovina have made an
enormous contribution to building the KwaZulu-Natal Branch
of the MDF into a strong, vibrant and caring organization
which provides positive support to affected young people and
their families across KwaZulu-Natal.
It is good to know that they are both still prepared to give
guidance, advice and support to others: Raj his profound insight
into the financial management of the Branch, and Lovina
her compassion and deep understanding of how to support
affected children and families.
‘If anyone wants to speak to me,’ says Lovina, ‘I will still be
there for them as a volunteer. I’m happy to listen to someone
on the telephone or be a shoulder to cry on. We won’t desert
members who need us.’
Both Raj and Lovina reflect positively on their years of involvement
with the MDF.
‘We have always led a balanced life with space for the MDF,
our religious organisation, family and leisure. It is true that the
Foundation was taking up most of our time, but we have enjoyed
our involvement. Sometimes just being able to talk to
an affected member or parent and listening to them was
enough reward.’
No doubt every member of KZN’s and the national MDA wishes
Raj and Lovina all the future health, happiness and time for
positive experiences that they richly deserve.
Toughness Trek for MD
Support Genelle’s “Toughness Trek for MD” as she competes in the Half Iron Man race to benefit MDFSA and those living with
muscular dystrophy. Your contribution can make a real difference. To donate, please visit her fundraising page. Thank you for
your generosity!
https://www.backabuddy.co.za/campaign/toughness-trek-for-md

Stephen Gawking aka
The Nuclear
Lyricist Bio
By Frontline Media
Ijay Swanepoel, professionally known as Stephen Gawking,
The Nuclear Lyricist, is a remarkable musician whose journey
is defined by an unyielding spirit in the face of severe
disability. Afflicted with Spinal Muscular Atrophy Type 2
(SMA), a condition akin to that of Stephen Hawking, Ijay
transforms his challenges into a symbol of hope and inspiration.
Embodying the mantra, "My life is a portrait, and I hold the
paintbrush. I got dealt a bad hand, but I'll play it like a royal
flush!" Ijay leverages his immense musical talent to uplift
and motivate diverse audiences, particularly those facing
adversity, whether disabled, different, oppressed, bullied,
or navigating the myriad challenges in life.
Stephen Gawking's musical journey transcends boundaries,
showcasing the transformative power of resilience,
hope, and inclusivity. Through his compelling story and impactful
music, Ijay Swanepoel stands as a beacon of
strength, turning adversity into art and challenges into triumphs.
Despite his personal struggles, Ijay's musical prowess extends
to impactful collaborations in tribute to others, inspiring
through his art. Notably, in 2023, he released the
single 'Cheslin Kolbe In An Office Cubicle' featuring HemelBesem,
Loufi, Gazelle, and Vicus Visser. This powerful
Hip-Hop/Pop anthem serves as a call to pursue dreams
despite naysayers, echoing the ethos "rather try and fail,
than fail to try." The collaborative effort is a testament to
inclusivity and inspiration.
In the same year, Ijay also honoured the memory of his late
sister Andria, who succumbed to Spinal Muscular Atrophy
Type 1 in 1994 at the age of 5. Collaborating with Eduan,
Kat, and Kulax, he released the poignant song 'Andria the
Angelic,' a heartfelt reflection on the impact of her loss and
a testament to finding beauty amid tragedy.
In 2024, Stephen Gawking's musical journey takes a profound
turn with Demons and Disorders, a thoughtprovoking
exploration of depression. Steering away from
definitive answers, the song challenges mental health stigma,
emphasising the intricate interplay of scientific, psychological,
and spiritual elements within depression.
Through nuanced storytelling, it advocates for understanding
and compassion, fostering an open conversation about
mental health. The artist's goal is to provoke reflection and
discussion, ultimately advocating for a more inclusive and
compassionate approach. In addition to his personal tributes,
the Stephen Gawking project reflects the diversity of
South Africa and beyond.
Article available at: https://footnotes.co.za/in-conversation
-with-stephen-gawking/
The following are additional online links to Stephen Gawking:
- Linktree: https://linktr.ee/stephengawking
- Facebook: https://www.facebook.com/NuclearLyricist
- Twitter X: https://twitter.com/NuclearLyricist
- Instagram: https://instagram.com/nuclearlyricist
- YouTube: https://www.youtube.com/
@stephengawking6821

Welcome to the Castle: Facing Down and Defeating
Your Fears
by Andy Rusch
In Muscular Dystrophy News Today, February 3, 2021
His palms firmly pressed against the pommel, he holds the
sword close to his chest. He can feel the heat from the fire on
the other side of the stone wall. Fear has no home in this dangerous
place, and yet, there it is. It sits on his heart like a black
stain, overstaying its welcome.
He takes a deep breath before storming the lifted gate into
the castle, facing what he’s been running from for a tremendously
long time — 33 years, to be exact. He turns the corner
and there it stands, the dragon that has claimed this castle.
Riches and jewels line the fortress walls. And there, sitting at
the feet of the enormous dragon, the name of the beast
etched on a solid gold bar: “Becker.”
But this isn’t a tragedy; quite the opposite. This is a story of
acceptance and resilience. It is an uplifting tale, involving a
series of quests to figure out who the main protagonist really
is. There are chapters of light and chapters of dark, shrouded
in a mist that obscures the path ahead.
This is my story.
My journey previously saw muscular dystrophy relegated to
the shadows, and for a long time, I tried to keep it that way. I
was able to act as if it didn’t really exist, because my physical
abilities remain mostly intact.
As it turns out, I was born the same year that scientists discovered
the cause of Duchenne muscular dystrophy and the milder
Becker muscular dystrophy: the lack of, or a shorter version
of, the dystrophin protein.
I was diagnosed with Becker muscular dystrophy when I was
about 5. My half-brother began to show the classic symptoms
of falling and labored efforts to get up from the ground. From
there, it was a matter of doctors suggesting I be genetically
tested to see if I had inherited the disease, too.
Back then, I had no idea what this would mean for me, because
at the time, I was functioning normally, with only
dormant missing muscle proteins.
Eventually, when I became an adult, I learned of the term
“invisible disability.” The word “disability” was something I’ve
always had a hard time relating to because my only education
involved the people surrounding me when I was young. My
half-brother used a wheelchair, so he was disabled. Sure, but
not Andy.
One important detail about Becker and Duchenne is the
amount of variability from one person to the next. This variability
affects us in varying degrees. Since I fell on the milder
side, people tended to forget about my disease. The book
slowly collected dust on the basement shelf.
For example, when I was younger and attended MDA summer
camp, I felt out of place, as though I was taking someone
else’s spot — someone more deserving than I was. I could still
do most things for myself, aside from knowing my limits with
exertion. Most days are good for me, but if I push myself a bit
too hard, I deal with muscle soreness for a few days, among
other issues.
As I’ve grown older, it shows more than it used to, and I am
learning how to accept this, one day at a time. I’m growing
more comfortable in my own skin, which includes opening up
to people about the challenges I face so that they may see any
disability, large or small, in a new light. My goal is to illuminate
the path to the stone that firmly clutches the sword, a sword
that is reserved for the hero.
I write this now as a symbol of accepting who I am: I am a person
with a disability. I write this column to encourage others
with hidden issues to face down their dragons and conquer
their fear of acceptance; to rise above the parapets and
scream triumph to the world.
As the hero faces down the dragon, the sword slowly drops to
the stone floor. The hero closes his eyes and holds out his
hand to the emptiness, surely to be burned to an ashen crisp.

The dragon pads voraciously forward only to find a single outstretched
hand blocking his path to the intruder. Bewildered
by a courage previously unseen, the dragon bows and releases
the rage of fire he had held inside. The smoke rises, and the
hero stands lion-hearted next to what he’s been running from
for too long.
I hope you will join me on this next adventure and feel empowered
to live and share your story, as only you — the hero
— can. I’m not certain what the next page will hold, but I have
a hopeful heart for myself and for you.
Welcome to the castle.
Article available at: https://musculardystrophynews.com/
Moulded
By Mandy Martin
Until I was just 19 this was unseen
I mean I am just a normal human being
Can god really be so mean?
I am an active person, a kid enjoying life
Then for a doctor to tell me I will lose a fight
The words that he said I can still hear
You will be in a wheelchair soon my dear
What is this MD, will it take my life
Am I prepared for a losing fight?
Muscles deteriorating
My body disobeying
If colors were my struggles
Sizes and shapes all changing
Like a piece of clay being handled for training
Bit by bit is being eaten away
Oh dear god, please take this away
Sitting and standing wasn’t a chore
But today it became painful and sore
As years go by my image changes
My body and mind, not in the same places
I am tired of waking up in tears
I cannot put to bed these phobias and fears
I am new to this grief I cannot explain
But I am no stranger to this heartache and pain
I could make a damn painting

Dreaming of a good night’s sleep?
By Claire Sykes
In Quest Media, Thursday, August 5, 2021
Muscular Dystrophy Association
More than one-third of adults in the United States fail to get
the seven to nine hours of sleep they need, reports the National
Sleep Foundation. Children and teens require even
more sleep, which too many also miss out on.
Getting quality sleep can be challenging for people with neuromuscular
disorders. However, with the right tools and habits,
you can turn a fitful night into a more peaceful one.
Poor sleep, poor results
“Sleep is as important as breathing clean air or getting enough
high-quality nutrition,” says Craig Canapari, MD, a pediatric
pulmonologist at Yale School of Medicine in New Haven, Connecticut.
Scant shuteye can cause a host of conditions, which can get
worse the longer it continues:
• Irritability
• Difficulty concentrating
• Low energy
• Daytime drowsiness
• Restlessness
• Poor motivation
• Learning difficulties
• Anxiety
• Depression
• Suicidal thoughts
Insufficient sleep also does a number on you physically. “Sleep
is when the body heals. It’s critical for recovery and healthy
immune function. If you’re sleep-deprived, it can impede your
ability to fight off infection,” Dr. Canapari says.
“With chronic lack of sleep, you risk getting severely sick. It
especially affects the respiratory system and heart and lung
function,” says Melanie Taylor, MD, a neurologist at Mercy
Health in Grand Rapids, Michigan. Inadequate sleep also is
linked to cardiovascular disease, stroke, obesity, adult-onset
diabetes, and mortality.
Nighttime breathing
Sleep interruptions and insomnia can plague anyone, but particularly
if you struggle with respiratory dysfunction, the main
culprit for poor sleep in those with neuromuscular disorders.
“Respiratory muscle weakness or decreased lung elasticity
means your chest wall can’t expand as fully,” Dr. Taylor says.
Shallow breathing causes nighttime oxygen levels to drop and
carbon dioxide to rise, possibly leading to obstructive sleep
apnea (OSA). “This results in sleep arousals and fragmented
sleep,” Dr. Taylor says.
Central sleep apnea is less common in people with neuromuscular
disease. This is when breathing repeatedly stops and
starts during sleep because the brain doesn’t send the proper
signals to the body.
If you’re showing signs of poor sleep or you have respiratory
muscle weakness, your doctor might recommend a sleep
study. This can be done overnight in your home to measure
levels of blood oxygen and exhaled carbon dioxide, or you can
spend the night in a specialized sleep laboratory or center,
where a polysomnogram will assess brain and muscle activity,
eye movement, heart rhythm, and other factors.
What keeps you awake
When respiratory muscle weakness compromises nighttime
breathing, the common solution is to use a bilevel positive
airway pressure (BiPAP) machine, which pushes pressurized
air into the lungs to open them for more oxygen. However,
the BiPAP, meant to help with slumber, also can interfere with
it. Some people find that the feel of the mask on their face or
the noise of the mechanical pump makes it hard to sleep.
Limited mobility also may be a sleep challenge, making it difficult
to shift positions to relieve pain or numbness. Several
products are available to address repositioning in bed, from
slide sheets and draw sheets to turning beds and alternating
pressure mattresses.
In addition, having something on your mind can keep you
awake. “Neuromuscular diseases can be stressful,” Dr. Canapari
says. For example, he points out that children who use a
wheelchair generally get up 30 to 50 minutes earlier than their
peers to get ready for school. “And we know that 70% of high
school students are sleep deprived,” he says. “Many kids with
neuromuscular disease experience anxiety or depression. And

we know that 70% of high school students are sleep deprived,”
he says. “Many kids with neuromuscular disease experience
anxiety or depression. And sometimes they worry at
night.”
If you find yourself unable to fall asleep, Dr. Canapari recommends
doing something relaxing until you feel tired. But avoid
using electronics for entertainment because that could keep
you awake. Their blue light suppresses the release of melatonin,
the hormone in your body that helps you feel sleepy.
More Zs, please
Prevent and lessen sleep problems by following these ten
pointers:
1. Stick to a schedule. “Go to bed and get up at the same
times every day, even on weekends. It’ll be easier to
fall asleep and wake up,” Dr. Taylor says.
2. Set your body clock. Get to sleep when it’s dark to help
your body release melatonin for sleeping, and wake up
when it’s light to help shut it off.
3. Prep your bedroom. Keep it a cool 60-70 degrees.
Block out any light with a sleep mask or blackout curtains,
and reduce noises with earplugs or a fan.
4. Master mindfulness. “Practice deep breathing, relaxation
techniques, meditating, and being in the moment
during the day, to be good at it for bedtime,” Dr. Taylor
says.
5. Move within your ability. “Regular exercise can help
you fall asleep faster and stay asleep longer,” Dr. Taylor
says. Any movement you’re able to incorporate into
your day could have an impact. Dr. Taylor recommends
starting with mild activity and slowly increasing if you
can.
6. Consider catnaps. “Short, 20-minute naps help alleviate
fatigue and provide cognitive benefits,” says Dr.
Taylor. “But if you have trouble sleeping at night, avoid
them.”
7. Consume with care. “Avoid cigarettes, caffeine and
heavy meals in the evening,” Dr. Taylor says. “Maybe
you fall asleep faster with alcohol, but it can wake you
in the night.”
8. Reduce screen time. At least 20 minutes before bed,
refrain from movies, video games, and other electronic
-device activities, Dr. Taylor advises.
9. Wind down. Mark the move toward sleep with a calm
routine: Read an easy book, light a candle, sip some
herbal tea, pet your cat, or listen to soft music.
10. Team up. “If you’re struggling with sleep, reach out to
your primary care physician or a pulmonologist,” Dr.
Canapari says.
Article available at: https://mdaquest.org/dreaming-of-a-good
-nights-sleep/
MDFSA is turning 50!
In honor of our 50th anniversary, we invite you to make a symbolic R50.00 donation, reflecting 50 years of dedication
and support to those affected by muscular dystrophy.
Your contribution will help us continue our mission to make a difference in the lives of individuals living with muscular
dystrophy.

5 SECOND SUMMARY
Do you want to get the health benefits of standing without
sacrificing mobility? Then here’s what you need to know about
features, pricing, and funding for mobile standers and standing
wheelchairs.
Mobile standers and standing wheelchairs are for people who
want to stand without having to stand still.
Medical professionals agree that standing is good for the musculoskeletal
system, and most experts recommend standing
30 to 60 minutes a day, depending on the user’s level of tolerance.
(Note: Always consult a doctor before starting a standing
program.)
“Standing allows the individual to bear weight on their legs,
which assists in building or maintaining bone density and muscle
mass,” says Kelly McCann, an occupational therapist (OT)
who specializes in treating individuals with neuromuscular
conditions in Mebane, North Carolina. A doctor-approved
standing routine provides pressure relief, reducing the risk for
pressure ulcers and muscle contractures by putting muscles
and joints through a full range of motion.
Jose Flores uses his time in a stander to stretch or answer emails.
Kelly notes that standing also can have a positive impact on
bodily systems that depend on gravity to function correctly,
such as blood pressure, breathing volume, and the digestive
and urological systems.
There are also many psychological benefits of standing. “One
of the biggest benefits is that it can increase independence
and allow the individual to be an active participant in their
daily routines,” Kelly says.
But reaping the physical and psychological benefits of standing
can come at a price — loss of mobility. Mobile standers and
standing wheelchairs get around this problem by offering users
access to their environment.
Mobile standers
Similar in appearance to the average stationary stander, mobile
standers have wheels and can be driven indoors while in
use. They are either manually propelled by users with the arm
strength to propel a manual wheelchair, or they are powerdriven.
Two companies offer manual-drive mobile standers for adults:
Altimate Medical and Prime Engineering [...]. The standers are
moved by pushing on the wheel push rims located at arm level.
They come with either a manual hydraulic lift system or a
power lift system to raise users from sitting to standing.
Some models require users to transfer into the device’s seat
before standing, while other models allow individuals to roll
up in their wheelchairs, line up their knees with the kneepads,
put the lift sling under their bottom, attach it to the lift, and
stand up.
Manual or power?
One manually propelled mobile stander is the EasyStand Evolv
Mobile from Altimate Medical. The push rims are close to the
user for easy steering, and they can be moved forward to allow
more room for transfers. The Evolv Mobile retails for
around $6,000.
Of course, many people with neuromuscular diseases have
limited arm strength and may have difficulty self-propelling a
manual stander.
Stand Aid of Iowa is the only company that offers a power -
driven adult stander. The Stand Aid 1503 has a joystick-

-controlled power drive system and a power lift system, and
it doesn’t require transferring from the wheelchair into the
device before standing. It retails for $9,500, or mechanically
inclined individuals can purchase the mobile kit to add on to
their existing Stand Aid 1501 for $3,200.
Using a stander
There are many benefits to allowing a person to get out of
their wheelchair to stand and stretch their muscles. The key
is not to overdo it, as Jose Flores learned. Jose, a corporate
speaker who has spinal muscular atrophy (SMA), uses the
EasyStand Strapstand for 30 to 45 minutes twice a week during
physical therapy to stretch out his arms and legs and prevent
the onset of muscle contractures.
Jose has been going to physical therapy and using the stander
for more than a year. Before that, his wife and sons used to
stretch his arms and legs.
“The first time I used the stander, it was the first time that I
had stood in 23 years, and it felt amazing. When I sat down, I
noticed that my muscles and my knees were a little sore, but
it only lasted for 5 to 10 minutes,” Jose says. “Now, when I
stand, I don’t notice any discomfort at all.”
While standing, he likes to stretch his arms up and out. If he
is short on time, he will put his phone or laptop on the builtin
tray and answer emails while standing.
Standing wheelchairs
Why be limited to standing or sitting when you can do both?
Standing wheelchairs offer the ability to rise into a standing
position when needed and then return to a seated position at
any time.
Standing wheelchairs also make it easier to get in more
standing time while going about your regular day.
Some experts suggest that standing several times during the
day provides greater benefits than standing once for a prolonged
period.
Power or manual?
As with mobile standers, standing wheelchairs come in two
forms: power and manual.
Most can hoist users upright to a maximum of 85 degrees.
Standing upright at a full 90 degrees (as can be done in a mobile
stander) would throw the wheelchair off balance, although
there are some power wheelchairs that stand users up
to 87 degrees.
Most power standing wheelchairs can be driven while users
are standing, whereas manual standing wheelchairs must
remain stationary when in the standing position. However,
those who like to travel may prefer the greater portability of
a manual standing wheelchair.
The Levo LAE is a lightweight (37 pounds) manual standing
wheelchair with a folding backrest and quick-release rear
wheels for easy transport. The LAE lifts via a gas-powered
spring and allows users to lift themselves into any angle between
sitting and standing with one-handed operation. It
retails for $4,800 to $19,000.
Permobil’s F5 Corpus VS and the M Corpus VS offer the ability
for the individual to stand at various degrees. The F5 Corpus
VS can achieve up to 80 degrees of standing, while the M
Corpus VS can achieve up to 70 degrees of standing. These
power standing wheelchairs can remember a user’s favorite
standing position, whether it is sit-to-stand, recline-to-stand,
or anywhere in between. Fully drivable while standing, the F5
Corpus VS and the M Corpus VS have advanced suspension
systems for a smooth ride.
[…]
Article available at: https://mdaquest.org/stand-and-gomobile-standers-and-standing-wheelchairs/

Why I’m looking forward to celebrating my first
Valentine’s Day
What true love looks like to me, through the prism of Duchenne
by Shalom Lim
In Muscular Dystrophy News Today, February 7, 2024
Amid a topsy-turvy start to 2024, I’ve marked a date on my
calendar I’ve been looking forward to more than any other:
Valentine’s Day. While it might not be a particularly significant
day for many others, it’s a big deal for me. It’ll be my first time
celebrating the day after unexpectedly falling in love last April.
I’ve written previously about how I see love as more than just
physical romance; for me, it’s a profound emotional bond
shared by two people. In my opinion, love is something that
we Duchenne muscular dystrophy survivors experience in a
unique way.
From a young age, our lives are inextricably intertwined with
our care providers. Whether it is with a family member or a
paid caregiver, our experiences include a range of emotions,
including despair, hope, loss, and joy, which fosters an unbreakable
bond between patient and caregiver.
Our often bittersweet and intense feelings of love may make it
difficult for us to find a partner who accepts us and understands
our plight. Living with Duchenne entails many things,
and our partners must also navigate our darkest moments and
excruciating pain. It means, at times, prioritizing the needs of
the person with Duchenne at the partner’s expense.
Whether or not those of us with Duchenne ever find the kind
of love that mainstream society celebrates, such as that typically
acknowledged on Valentine’s Day, one thing is certain:
We know what love is and what it feels like to be loved by another.
A rainbow in the storm
The new year so far has been nothing short of a nightmare for
me. I’ve had withdrawal symptoms from tapering off antidepressants
and steroids, which appeared with a devastating
vengeance. This has led to many sleepless nights, emotional
dysregulation, and mood issues.
My girlfriend, Amanda, has helped to prevent me from falling
into the clinical depression I had suffered a couple years ago.
Without her, I don’t know how I would have weathered these
tumultuous events, which have also included my caregiver
Glenda becoming ill and my grandfather’s death. I’ve been
depending on Amanda’s love and support more than ever.
Amanda has been the light at the end of my darkest tunnel
and has made my life worth living. I couldn’t be more thankful
to her for coming into my life at a difficult time and giving me
a new reason to hope for a better future. She helps me see
brighter rainbows ahead amid my storms.
While the physical and emotional struggles from having a fatal
disease will never disappear, at least there’s one person on
Earth who makes my suffering and pain worth it.
As I look forward to celebrating my first Valentine’s Day with
her, I am reminded that our love for others makes living with
Duchenne a blessing in disguise.
Article available at: https://musculardystrophynews.com/
columns/why-im-looking-forward-first-valentines-day

Breathing problems
Muscular dystrophy is a group of conditions characterized by
progressive muscle weakness. In addition to affecting muscles
used for movement, the disease can cause weakness in muscles
needed for respiration, which can result in breathing
problems.
Trouble breathing means that the body isn’t getting enough
oxygen. Common respiratory symptoms in muscular dystrophy
include shortness of breath, wheezing, or abnormally fast and
shallow breaths. Breathing problems also can cause sleep disturbances
if the person isn’t getting enough oxygen while
asleep.
Causes of breathing problems
One of the most important respiratory muscles is the diaphragm,
which sits just below the lungs and helps in the process
of inhalation to supply oxygen to the lungs. The weakening
of the diaphragm in people with muscular dystrophy results
in reduced oxygen intake and decreased lung function.
Different muscles are involved in exhalation to remove carbon
dioxide from the body. In patients, the excessive workload on
the lungs, due to poor diaphragm function and the weakening
of abdominal muscles, hinders the elimination of carbon dioxide.
Weakness in the muscles of the upper respiratory tract — the
nose, mouth, throat, and voice box — can cause difficulty
breathing, particularly during sleep. This makes muscular dystrophy
patients prone to breathing problems such as sleep
apnea, when a person temporarily stops breathing during
sleep.
Respiratory muscles also support coughing, and their breakdown
makes coughing difficult. Difficulty coughing, in turn, can
make it harder to clear mucus and other substances from the
lungs and airways.
Postural problems such as scoliosis (the abnormal sideways
curvature of the spine) affects the structure of the chest wall,
and can also contribute to breathing problems.
Testing the lungs
To track and manage breathing problems, muscular dystrophy
patients should have their lung function evaluated regularly
starting in childhood. Generally, lung testing is done annually
while patients are able to walk, and every six months if they
are no longer able to.
The most common lung function test is called spirometry,
which basically involves measuring how much air a person can
breathe out in a forced breath. This is used to calculate the
By Marisa Wexler
In Muscular Dystrophy News Today
Last updated Jan. 13, 2022
forced expiratory volume, the amount of air that can be exhaled
in a specific amount of time, and the forced vital capacity,
or the total air exhaled.
Other tests may be used to measure how much pressure the
lungs can exert while breathing in or out — referred to as
maximal inspiratory pressure and maximal expiratory pressure,
respectively — or the strength of a person’s cough, often
measured with peak cough flow.
Pulse oximetry is a simple test to measure how much oxygen
is in the blood, an indicator of lung function. Sleep studies
may be helpful for identifying breathing problems that occur
during sleep.
Treatment and management
Treatment to address breathing problems in people with muscular
dystrophy is tailored based on their breathing symptoms.
Children with muscular dystrophy are prone to respiratory
infections such as pneumonia so a pneumonia vaccination is
recommended as a preventive measure. Annual vaccines
against the seasonal flu are also recommended for people
with muscular dystrophy.
A number of medications may help alleviate respiratory symptoms,
including bronchodilators (to widen airways), mucolytics
(to help break down mucus), and/or decongestants, which
help to decrease swelling and inflammation.
For acute respiratory infections, antibiotics are prescribed to
kill disease-causing bacteria.
Chest physiotherapy can help to strengthen breathing muscles.
Additionally, assistive devices, such as vests, can help in
clearing mucus, and prevent recurrent infections.
Physiotherapy can also help manage scoliosis. Surgery may be
required for more severe cases of scoliosis to relieve the pressure
on respiratory muscles and ease breathing.
Ventilation can help patients with respiratory failure or
hypoventilation (excessively slow breathing) to breathe normally
using non-invasive as well as invasive means. Noninvasive
ventilation involves using a face mask, whereas invasive
ventilation involves inserting a tube into the windpipe,
either through the patient’s mouth or nos[e].
Article available at: https://musculardystrophynews.com/
breathing-problems/

Scoliosis in Children with Muscular Dystrophy
By Jason E. Lowenstein, MD.
Muscular dystrophy (MD) is a genetic disorder that results in
progressive muscle wasting. Nine forms of MD exist, each
affecting different sets of muscles. Some children who are
diagnosed with MD may develop an abnormal curve in the
spine known as scoliosis. This can lead to pain, decreased
function, and respiratory problems.
Undergoing treatment for MD-related scoliosis can help slow,
or even stop, the spinal deformity from progressing. As a result,
the child will become more comfortable and enjoy a
better quality of life. In addition, treatment may improve the
child’s ability to perform the activities of daily living more independently.
The two forms of MD that typically lead to scoliosis include:
• Duchenne Muscular Dystrophy (DMD): The most common
form of MD, affecting 1 in every 3,600-6,000 newborn
males. Virtually no functional dystrophin is made
by the body. Symptoms usually start between the ages
of 1 and 5 and start progressing rapidly. Early indicators
include delayed motor skills like sitting, standing, or
walking. Eventually, the child will lose the ability to
walk—usually requiring wheelchair use by adolescence.
In addition, the lack of dystrophin weakens the heart
muscles, leading to a condition known as cardiomyopathy.
How does muscular dystrophy affect the spine? What are
some ways in which doctors can slow the progression of this
degenerative disease? And, when is surgery necessary? Use
this guide to understand more.
Understanding Muscular Dystrophy
Muscular dystrophy is often the result of a mutation in
someone’s genes. In fact, some families display a history of
the disorder. Other children may develop it without any prior
family history.
MD affects the gene responsible for making proteins—mainly
dystrophin—that allow the body to build and maintain healthy
muscles. Specifically, the loss of dystrophin affects skeletal
muscle cells. As a result, certain muscles become weak and
start to waste away. This leads to problems with ambulation
and meeting certain developmental milestones. Some forms
of MD can also affect the heart, lungs, and pulmonary function.
In addition, the degeneration of the muscles can lead to scoliosis.
This abnormal sideways curve of the spine can be painful
and severely limit a child’s abilities.
• Becker Muscular Dystrophy (BMD): A less common
form of MD. In fact, BMD only affects about 1 in every
30,000 boys. The symptoms are similar to DMD but
start out later in adolescence—usually during the teen
years. Symptoms typically progress much slower than
with DMD. With BMD, the body still makes some partially
functional dystrophin. Muscle weakness generally
starts in the hips, pelvic area, and thighs. Some children
with BMD may also have enlarged calves due to fatty
deposits replacing muscles. Prognosis is generally
better for those with BMD, although it depends on how
badly the heart is compromised.
How Muscular Dystrophy Leads to Scoliosis
As is the case of children with DMD, muscular weakness begins
to affect their ambulation and ability to change positions.
They usually exhibit one of the tell-tale characteristics of
DMD—Gower’s sign. This sign manifests when a child rises
from a sitting or lying position by walking his hands up the
legs. In particular, this motion helps to compensate for the

the weakness in the gluteus maximus and quadriceps muscles.
A child with DMD usually loses the ability to walk between the
ages of 6 to 12. At first, the child can maintain posture and get
around with wheelchair use. This lack of mobility, combined
with increasing muscle weakness, eventually leads to changes
in the trunk. As the trunk grows weaker, neuromuscular scoliosis
may develop.
Understanding Scoliosis
The spine isn’t a straight line that extends from the base of
the neck to the pelvis. It actually contains natural curves that
distribute weight and stress as the body moves or rests. These
natural curves turn forward and backward in the body. If you
were looking at an image of the spine from the side of a person,
it would actually resemble an “S” shape.
Some curves aren’t natural. Curves that twist to the left or
right are not normal. This is a condition known as scoliosis.
Calling it a curve, however, may be oversimplifying. It is actually
a complex condition that involves the rotation of the
spine. As a result, areas between the vertebrae become compressed
or overstretched, causing painful and chronic conditions.
Scoliosis has several causes. For those affected by muscular
dystrophy, it is generally due to wheelchair use and progressive
muscle deterioration. As the trunk muscles lose their ability
to support the body, the spine begins to change. For those
with DMD, this can happen rather quickly. In fact, boys with
DMD can experience an increase in scoliosis angulation between
16 and 24 degrees per year.
In addition, the shape of the spine for those with DMD is
different than for those with other forms of scoliosis. Those
with another common form of the condition—idiopathic scoliosis—usually
experience the curve higher in the body, typically
near the middle of the chest. The apex of the curve for
those with MD usually occurs where the chest and lower back
meet. As a result, the area can also have an abnormal outward
curve (kyphosis).
Treating Scoliosis in Children with Muscular Dystrophy
When a child is diagnosed with MD, especially DMD, taking
measures to prevent scoliosis is very important. Once a child
with DMD develops scoliosis, surgical correction is the only
solution.
By using a multidisciplinary approach, children with MD can
stay independent for longer. The more that a child can move
around, the more strength that he can maintain. This affects
the severity of scoliosis in the long term.
A typical multidisciplinary approach includes input from physiotherapists,
physical therapists, pediatric spine specialists,
respiratory therapists, and cardiologists. Each discipline offers
different benefits for the child with MD. For example, physical
therapy can help maintain a child’s muscle tone and reduce
the severity of joint contractures.
Steroid injections offer several benefits for children with DMD.
This includes increased muscle strength, independent ambulation,
and the decreased progression of scoliosis. If a child can
maintain ambulation until his pubertal growth spurt, it may
reduce the risk of developing scoliosis. A steroid injection can
also aid with breathing and heart function.
Steroid therapy has some risks, however. Decreased bone
density, spinal compression, and long bone fractures are a
concern. Also, some boys will develop cataracts from steroid
use. Vitamin supplements, proper nutrition, and adjuvant
therapies can help decrease these risks.
In addition, developments in orthotics and wheelchair technology
can increase a child’s comfort and slow deformities of
the spine. Scoliosis bracing may also be an option before the
spinal deformity becomes too defined.
Treating Scoliosis with Surgery
As you probably know, MD has no cure. Surgery, however, can
relieve painful symptoms, stabilize the spine, and resolve
some respiratory problems. Candidates for surgery include
those with a quick progression of scoliosis and those who are
suffering from heart and breathing problems. Surgery is often
recommended for developing boys with a scoliotic curve beyond
20 degrees.
Spinal fusion surgery can correct the spine and stop the progression
of scoliosis. Usually, this surgery uses a bone graft
and surgical hardware like pedicle screws to stabilize the spine
and help vertebrae grow together. In time, this fusion limits
any extra movements of the spine, despite weakening trunk
muscles.
In general, those with MD who undergo surgery for their scoliosis
experience favorable results. This includes better sitting
balance and improved function. Less pain and decreased deformity
also improve the child’s quality of life. Experts still
disagree about the effectiveness of scoliosis surgery on respiratory
function. Therapies like steroids, non-invasive ventilation,
and respiratory therapy, however, can be combined
effectively with surgery to increase respiratory function and
prolong life expectancy.
[...]
Article available at: https://jasonlowensteinmd.com/scoliosisin-children-with-muscular-dystrophy/#:~:text=Scoliosis%
“A hero is an ordinary individual who finds the strength to persevere and endure in spite
of overwhelming obstacles.”
Christopher Reeves

HOW TIMES HAVE CHANGED...
We first started travelling and exploring the world
with a wheelchair when dinosaurs roamed, long before
the development of the internet and the common
use of e-mail.
For us, the most amazing piece of technology that
had become available was the fax machine! This incredible
device allowed us to communicate overseas,
rapidly, without having to write letters, which
took ages to arrive, and wait for replies which took
just as long. Even today I can remember the excitement
we experienced when the fax machine sprang
to life and a little roll of paper began creaking and
crackling out the top of the machine, with us peering
over to read each line as it came into view. The
fax only ever awoke when someone was trying to
send us travel information, so it had to be interesting!
Along with the fax machine, we tapped into the
amazing resources offered by books, those chunky,
heavy tomes filled with things called pages. The two
most memorable were Lonely Planet and Rough
Guide. Not only did they provide one with great insight
into one's destination but they also provided
valuable information on accommodation and
transport. I always had a soft spot for Rough Guide.
After each holiday I would write(!) to them and detail
our experiences as wheelchair travellers, point
by point, with regard to accommodation and
transport. They, in turn, would send us the latest
edition of our choice – a generous contribution and
one which we always appreciated. Needless to say,
we have quite a few versions of Rough Guide sitting
on the bookshelf in the study!
Sourcing wheelchair accessible accommodation was
a real challenge. The guides did give some indication
as to whether there was wheelchair access, but this
was in no sense detailed, simply a couple of words.
The contact numbers contained in the guide, combined
with the fax machine, at least allowed us to
make further enquiries and ask pertinent questions,
but even then we were heavily dependent upon the
perception and observation of the person replying.
At some point we just had to quite literally "take the
plunge" and confirm the booking, sight unseen.
In 2002 we took the conscious decision to plan our
first holiday making use solely of e-mail. If you didn't
have e-mail, we didn't communicate with you.
We wanted to see just how far we could go with this
new technology. It was perfectly successful, and
from that day on it became our modus operandi. It
wasn't difficult, because at the time digital communication
technology was developing at an incredible
rate, and by the time we were organising our next
holiday, e-mail and the internet had become standard
fare.
So much has changed since then, and although
sourcing wheelchair accessible accommodation remains
frustrating, finding out the finer details is an
awful lot easier, thanks to the modern technologies
we have available to us. The fax machine was extremely
useful while it lasted but became redundant
rapidly after the increased adoption of e-mail
around the world. It still provided us with a number
of laughs, particularly when we would fire off an e-
mail of enquiry and receive a fax in reply! Some
folks just took a little longer to come to the party.
The growth of the internet led to a massive increase
in the number of websites created by small

usinesses, in particular those offering travel accommodation.
Everyone wanted you, the traveller,
to know about their holiday destination, complete
with descriptions and photographs. It wasn't foolproof,
and we soon learned that some folk could be
very "creative" in their interpretation of wheelchair
access. You still needed to do your research and
double-check each destination. Search engines,
most notably Google, have played a huge role here
– so effectively, in fact, that we don't really recognise
how important they have become in sourcing
information, and, in our case, sourcing information
specifically for disabled accessibility. Google really is
our friend and probably one which we take for
granted more often than not. It has largely usurped
the role of the Lonely Planet and Rough Guides of
the world, not only providing access to similar information
but also ensuring that it is as up to date and
current as possible.
In our opinion the next big thing for the disabled
traveller was the rise of the smartphone, most notably
in conjunction with the messaging application
WhatsApp. This opened the way for anyone to easily
capture images and video and pass them on to
the interested party on the other side of the planet
in just a matter of minutes. Suddenly we were no
longer dependent upon the interpretation of someone
thousands of miles away, who often spoke a
different language and wasn't really sure of your
request. The old adage "a picture is worth a thousand
words" holds true. A WhatsApp photo or video
of a bathroom or access area immediately shows
the viewer whether it is likely to be accessible or
not.
The whole transaction, from initial enquiry to acceptance,
can be handled in a matter of minutes, no
matter where in the world one might be. It is hard
to imagine these days how we managed without
social media and smartphones. We often look at
one another and say that we must have been crazy,
and we probably were! Ignorance used to be bliss.
Fortunately, today we've got some great tools that
can help us, firstly to source accessible accommodations
and secondly to confirm that their levels of
access are suitable for our individual needs.
We service, repair and sell mobility
products, wheelchairs, powered
wheelchairs and mobility scooters
Wheelchairs on the Run
Tel:011 9557007
https://wheelchairsontherun.co.za
Supplier of Mobility and
Disability aids for Independent
Living

Sandra’s thoughts on...
Living a simple life
By Dr Sandra Bredell
What does it mean to "live a simple life"? The Merriam-
Webster Dictionary describes it as “a manner of living in which
a person does not own many things or use many modern machines
and usually lives in the countryside”. According to Calvin
Holbrook, "[c]hoosing simplification creates a life filled
with meaning, a life lived on your own terms". He continues
by saying that in crowded cities and locations, life can become
hectic and somewhat overstimulating, overwhelming our
minds and sometimes making us feel anxious about our own
lives. The benefits of leading an "outwardly simple, inwardly
rich lifestyle" are covered by Duane Elgin in his book Voluntary
simplicity.
and make your life simpler and happier. Self-care is still the
most crucial thing to do.
3. Donate items: In addition to helping you with the decluttering
process, giving things away that you no longer need
or use frequently will also make you feel good about yourself
by improving someone else's life.
Set boundaries and maintain them: In addition to taking care
of yourself, you must develop the ability to say "no" to requests
and things that make you uncomfortable or that you
know will make you feel stressed or unhappy.
Simplifying your life does not mean that you have to give up
everything you own, including your house, car, and belongings,
and relocate to a secluded island where you will be living
alone. Additionally, it does not at all imply that your life should
become monotonous. You can read and learn more about
simplifying your life by using the resources listed at the end of
this article. Some of the points they agree on are as follows:
1. Decluttering: Reduce the amount of stuff in your house
and arrange it so that there is a better flow of space and fewer
things for you to maintain and clean. A cleaning and organizing
schedule is crucial to the decluttering process. Decluttering
also applies to our thoughts, helping us to replace negative
ideas with more upbeat ones.
2. Put yourself first: Recognize what works for you, what you
enjoy or dislike, and what brings you joy and relieves anxiety
or negative thoughts. You will be able to make some changes
as a result of doing this because it can give you some direction
Please take the time to read more about this topic by consulting
some of the resources listed below. Take care and remember
that making changes takes courage!
Resources
Antonia. 2023. 15 simple living tips for less stress and
more freedom. Balance through Simplicity. https://
balancethroughsimplicity.com/simple-living-tips/
Elgin, D. 2010. Voluntary simplicity. 2nd edition. New York:
HarperCollins.
Gardner, B. 2023. Simple living: 7 ways to live simpler in a
modern world. Becoming Minimalist. https://
www.becomingminimalist.com/simpler/
Happiness.com. ©2015–2024. https://happiness.com
Holbrook, C. 2023. Living a simple life: 6 science-backed benefits.
Happiness.com. https://www.happiness.com/
magazine/personal-growth/six-key-benefits-of-living-a-
simple-life/#:~:text=up%20your%20possessions.-
,Choosing%20simplification%20creates%20a%20life%
"Disability is not a brave struggle or 'courage in the face of adversity.'
Disability is an art. It's an ingenious way to live."
Neil Marcus

I have been diagnosed with muscular dystrophy and my husband
and I want to start a family. How can I prevent my
child from inheriting muscular dystrophy, and are there any
newborn screening tests available in South Africa?
Your question is an important one. In order to answer it accurately,
there are a number of important considerations. The
answer may be different for each couple and would depend on
the exact type of muscular dystrophy you have. In general, it
would be important for you to be seen and assessed by a genetic
counsellor or medical geneticist who would be able to assess
your personal history, family history and what genetic testing
is required, and then provide you with available options for
both assessing the risk and preventing your child from having
the same condition.
Muscular dystrophies are a large diverse group of inherited
conditions. They may be inherited in different ways. This socalled
pattern of inheritance would determine whether or not
your child is at risk. In some cases, a condition is present in a
number of family members. In this case the pattern of affected
individuals may allow a geneticist to determine the risk to your
child (even without further testing). In others, an individual
may be the only one with the condition in the family, or the
pattern may not be so clear. In these cases, genetic testing may
be necessary to identify the precise genetic fault causing the
disease in an individual and the risk that other family members
or a child could be affected. Thus, once an affected individual
is diagnosed in a family, it is essential that the exact genetic
condition be defined and, ideally, the genetic fault identified.
This allows for a family to be given precise information as to
who else is at risk and exactly what the risks are, as they vary
considerably in different conditions. Testing to identify a disease-causing
fault can be time consuming and must be performed
prior to planning a pregnancy.
In a family in which a muscular dystrophy is identified and a
future child is at risk, the disease can be prevented in future
pregnancies in a number of ways. A family that wishes to explore
these options needs to consult with a geneticist to discuss
which options are most suitable to their exact situation. They
also need to make informed choices as to which options are
correct for them as a family. For example, a couple may
choose to avoid the biological risk by adopting an unrelated
child, or a donor egg or sperm could be used to prevent the
faulty gene from being transmitted.
An at-risk couple could also choose to test an at-risk conceptus.
This testing can be performed only if the exact diseasecausing
genetic fault in the family has been identified prior to a
pregnancy, so that testing in a pregnancy would be more efficient
and streamlined, as there are time constraints. Testing an
at-risk conceptus can be done in two ways:
Prenatal testing can be performed on an at-risk established
pregnancy. A sample can be obtained from the fetus
by either chorionic villus sampling (CVS) at approximately
12–14 weeks of pregnancy or by amniocentesis
at 16–18 weeks. This material can be tested for
the family-specific genetic fault, and this information
can be used to accurately determine if the pregnancy
is affected or not. If the fault is not identified, a couple
can be reassured of a healthy outcome. If predicted
to be affected, medical termination of pregnancy
can be offered.
Preimplantation genetic diagnosis can also be offered.
Here a couple would need to go through in vitro fertilisation
(IVF) using their own sperm and eggs. Embryos
are created in the laboratory and then tested for
the family-specific genetic fault. Once this is done,
healthy embryos can be implanted in the woman’s
uterus to achieve an unaffected pregnancy. Embryos
with the genetic condition are not implanted.
Newborn screening is not routinely available in South Africa
and would not detect most muscular dystrophies, as they are
diverse and rare. Screening is typically offered where there is
no known family risk. It would not be appropriate for determining
whether a newborn with an affected family member
has muscular dystrophy. However, if a newborn is known to be
at risk, for example because a parent is affected, specific testing
could be done at birth to determine if the baby is affected
or not.
There have been many recent genetic advances, and there is
hope for the future that new gene therapies may be able to cure
some genetic diseases, if affected embryos or newborns are
diagnosed early enough. These options are, however, not yet
available. There are many technical and ethical challenges that
remain before such therapies become available to at-risk couples.
The determination of risk to an embryo or newborn is complex.
It is strongly recommended that a geneticist be involved
in the process to ensure that timely and accurate options are
offered. The options available for each couple need to be individualised
on the basis of the couple’s preferences, the genetic
risk and the genetic testing available.