13 Things You Need To Know About Living With Muscular Dystrophy


1. The
term muscular dystrophy covers a wide range of conditions.

The term muscular dystrophy covers a wide range of conditions.

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It’s kind of an umbrella term, says physiotherapist Sunitha
Narayan, clinical coordinator in neuromuscular conditions
at University Hospital Southampton.

“Muscular dystrophy is the term used for a group of
inherited genetic conditions that gradually cause weakness
of muscles,” Narayan says. “This eventually leads to a loss
of functional abilities like walking, dressing, feeding,
etc, and in some conditions can lead to death.”

We spoke to people living with different types
of muscular dystrophy to find out more about their lives.

ID: 9853925

2. The main
symptoms are all similar.

There are branches of muscular dystrophy that only affect
certain people, such as
Duchenne muscular dystrophy, which mainly affects young
boys, Narayan says. “The main symptoms that people recognise
is weakness of muscles. This is generally described as
difficulty in carrying out day-to-day activities like
running, climbing stairs, and walking uphill, as well as
repeated unexplained falls, difficulty opening jars,
difficulty lifting arms overhead, and difficulty standing up
from low surfaces.”

For example, the heart and lung muscles may be affected.
“Depending on the muscles that are affected, a wide range of
activities become difficult.”

ID: 9854612

3. But
everyone faces different challenges.

But everyone faces different challenges.

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David Gale

“Unlike a lot of other people with
Becker muscular dystrophy, at my age [32] I am still
able to walk unaided. But I do face a lot of the common
obstacles many disabled people face, such as using stairs,
climbing steep gradients, being quite clumsy, and tiring
quickly. I also walk with a slight limp and curvature of
the spine (scoliosis). It can also cause pain in my lower
back, hips, and pelvis due to it making these areas tight
and constricted.

“But on the whole I manage a lot of things pretty well.
It’s mainly picking things up off the ground I can have
difficulty with if it’s not at waist height. It’s
particularly difficult having a baby boy and not always
being able to lift or carry him. Also as a side effect of
the condition I have slight cardiomyopathy, which is common
with men who have my condition. I have to take beta
blockers as a precaution, which always gets looks of
bemusement off chemists when I go to collect them as it’s
medication you don’t necessarily associate with someone my
age.” – David Gale, 32

ID: 9854898

4. There
is no such thing as a typical day.

There is no such thing as a typical day.

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Karis Williamson

“My day-to-day routine varies widely but my illness [Karis
has congenital muscular dystrophy] is progressive and
although I used to be able to eat and drink, sit up, and
speak quite loudly, my muscles have weakened and I am
unable to do all of these things. I have never been able to
walk or stand. I’m still able to speak but I need a
microphone as my speech is muffled by the ventilator mask,
which I have to wear full-time now.

“I need assistance with all aspects of personal care,
medicines, etc and I use a powered wheelchair. I also need
a portable ventilator to help me breathe and I have
nutrition through a gastrostomy tube as I can’t eat any
more. I need frequent suction for secretions and it takes
me about two hours to get showered and dressed, I then have
to use a machine to help me cough, after which I’m usually
working on my OU work or English, maths, or French,
interspersed with breaks for resting or going outside into
my garden or down town shopping or for coffee. I go to a
digital animation class every Friday from 4-6pm with a
friend who acts as my hands for me.

“I really like going to the cinema, and theatre, and I even
got to Glasgow to see and meet Macklemore and Ryan Lewis,
courtesy of Starlight. As you can
see, it can be a life of extremes! I love travelling and we
try to get to the south of France every year, but we have
to drive all the way as I’m unable to fly because of the
air pressures and I would need a cargo plane to take all
the equipment I need with me!” – Karis Williamson

ID: 8578090

5. Most
people are just trying to live a normal life.

Most people are just trying to live a normal life.

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Hayley Lloyd

“Tommy was diagnosed with muscular dystrophy when he was 6,
although we had to wait 18 painstaking months for his type
to be confirmed. It was so rare, that’s why it took so long
[Tommy has limb girdle muscular dystrophy].

“From Tommy’s point of view, he would say that ‘I get much
more tired than everyone else’, that ‘my legs and arms
hurt’, and for everyone to understand why he can’t keep up.
Tommy can still walk, so it’s not obvious he has a
disability.

“He waddles when he walks but children just think he is
slow and not capable. A typical day includes school as
normal. Tommy may need to take more breaks if he has PE.
Depending on how tired he is after school, he may need
additional rest. I will always ask him how his legs are. We
have a scale of 1-10. If he’s 5 or above I know he needs
rest. Tommy can’t go to sports after-school clubs as he
can’t manage this. He does love his youth club though.
Apart from that he is just like any other 11-year-old,
playing games and doing homework.” – Hayley Lloyd

ID: 9854859

6.
Genetic history has a large part to play.

Genetic history has a large part to play.

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Claire O’Hanlon / Muscular Dystrophy UK

Though muscular dystrophy is a genetic condition, it’s not
as simple as testing for a gene.

Narayan says: “Sometimes all you need is one faulty gene
with a mutation from one parent and you could have the
condition. Sometimes you need two faulty genes with
mutations from both parents to manifest the condition. At
other times you might have a new mutation no one else in
the family has that could cause the condition.

“If there is a family history, and if it is likely that
other members of the family could be affected, then most
genetic services will offer genetic counselling to those
who might be carriers or at risk.”

“I was about 5 months old when I was diagnosed but it was
devastating for my family. My mum had been screened for
muscular dystrophy and the results said I wouldn’t be born
with muscular dystrophy, but obviously they were wrong. My
brother had died of the same illness just before I was born
and so it was the worst possible news and the process was
horrific.” – Karis Williamson

ID: 9854874

7. Some
forms of muscular dystrophy are less visible than others.

“Once, after returning back from a two-day, full-on intense
conference (Action
Duchenne) in London, learning about what is happening to
my son’s body and brain and what the labs are doing so that I
can have some treatment for my child, totally tired, drained
with information…

“A woman of two young children turns to my children, who were
standing in the lifts at Leeds train station, and says, ‘So
which one of you two is the lazy child that needs one of
those with big wheels?’, referring to my son’s wheelchair. My
son is not lazy, he has poorly muscles, and at the time had
some mobility but required wheelchair support for long
distances. Muscular dystrophy gradually works on weakening
the leg and trunk muscles and then works its way up to affect
the arms, lungs, and heart. Sometimes, when the term
‘disease’ is used next to muscular dystrophy, people often
presume that muscular dystrophy is a contagious illness, but
it’s not.” – Anisa Kothia

ID: 8449497

8. And
people can be ignorant.

“People think that everyone with muscular dystrophy is in a
wheelchair and will be dead by the time we are 30. Or that
being in a wheelchair or having this condition makes us in
some way have a lower IQ and stupid. I have Becker muscular
dystrophy, which can be very far removed in severity from the
muscular dystrophy ‘stereotype’ of Duchenne. I also have an
engineering degree, and I am a long way from stupid.

“I wish everyone knew that not all disability is visible
straight away. If you saw me sat in a chair, you wouldn’t
think I had a disability. Watch me walk up stairs and you
would, but it’s not always obvious.” – Jon Powton

ID: 8449529

9.
Day-to-day life involves lots of planning.

“Yusuf (who has Duchenne) has good days and bad days. The
level of mood and tiredness requires thoughtful consideration
about the day ahead as it will affect his physical and
emotional ability to do things. If Yusuf is physically tired
and/or is feeling overwhelmed by certain things, then lots of
support and positive encouragement is needed to go to school
and engage in activities.

“At playtimes, Yusuf requires support from his ETA
(educational teaching assistant) to help him socialise with
his friends and understand the rules of games so that he is
able to play and keep up with them. Physio needs to be
carried out in school.

“Due to the low dystrophin in his body and brain, Yusuf
struggles with processing information and learning, and has a
poor working memory. This means we have to do a lot of
overlearning in school and at home and a lot of patience is
required by Yusuf and us.” – Anisa Kothia

ID: 9854655

10. Parents
have to navigate an ever-changing condition.

“Duchenne muscular dystrophy is a degenerative genetic
condition that gradually causes the muscles to weaken leading
to increased impairment. Yusuf’s muscles are currently
weakening significantly in his legs and trunks, and the
muscle strength in his arms is also weak. This decreases his
ability to mobilise as he becomes extremely lethargic.

“Two years ago, Yusuf was able to crawl up the stairs and
stand up off the floor. He was able to enjoy his trips to the
park and carry out activities with support. We made the most
out of play gyms, parks, shopping trips, etc, but now it
feels like slowly these opportunities are taken away from him
as he physically struggles and gets tired very easily.

“As parents, the choice to give daily oral steroids to our
child was an extremely difficult decision. Steroids can
prolong muscle strength for an unknown period of time. Yet we
have had to weigh this decision up against the many side
effects, like behavioural issues, diet, and weakened bone
density.” – Anisa Kothia

ID: 8449486

11. And
it can be lonely for parents and patients both.

And it can be lonely for parents and patients both.

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Hayley Lloyd

“Tommy is currently still ambulant. We’re lucky, but we’re
not sure how long this will last. He has a wheelchair for
bad days, when he’s exhausted and his legs are hurting.
Tommy struggles to get upstairs now too.

“Tommy wants to carry on as normal, he wants to be like his
friends at school, but he’s slower and can’t keep up. This
upsets him. I know he feels isolated sometimes, and he’ll
say to me: ‘There’s only two people in the UK with my type
of muscular dystrophy. Nobody understands how I feel. You
don’t know what it’s like to have MD.’ This is very
difficult for me. I’m a single mum and I have to cope with
this on my own.” – Hayley Lloyd

ID: 8449628

12. The
illness has a mental impact as well as a physical one.

“The physical impact of my condition is quite mild in
comparison to a lot of other sufferers. I can still walk at
42. I can’t climb a ladder, or run, or even jump without
either falling off or falling over, but I can get about. I’m
a foster carer for two small children. It’s busy and tiring
and hard and stressful and wonderful. I do all the things
everyone else does, just differently.

“This illness has had perhaps a more notable effect on my
mental processing. It has very much changed the way I think
and process what other people do without conscious thought. I
have to plan how I move about – I have to think about each
footstep, scan the ground for uneven surfaces, estimate the
solidity of the ground I’m walking on, plan how much speed I
need to be moving at to get up a kerb or step. It all happens
very quickly, but I have to think about what I do all the
time, and it can be draining.

“Other than limiting what I can physically do, all of the
effects for me are in my head. Some are negatives – this
condition can be hard to cope with in terms of accepting
people staring at you when you fall over in the street. It
can be embarrassing, it can be depressing if you let it. But
in a funny way it can have positives if you look for them.
Having spent so much time inside my own head, I know myself
very well. I can see how I have become more determined, and
more compassionate, how having to struggle every day made me
stronger. So for me I suppose it’s a balance between physical
limitation and determination to do it anyway.” – Jon Powton

ID: 8449526

13. And a
positive mental attitude is invaluable.

And a positive mental attitude is invaluable.

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David Gale

“I think the main misconception in my opinion is that it’s
seen as a death sentence. I don’t really see it that way,
and I have met many other people with muscular dystrophy
who live life to the full, no matter what obstacles each
variation of the condition may cause.” – David Gale

“Sometimes society is more of a disability than having
muscular dystrophy itself! When you have a life-limiting
illness, every minute is precious, so I don’t want to waste
it negotiating obstacles either physically or
metaphorically.” – Karis Williamson

ID: 8449607



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