Friend With Muscular Dystrophy.

Hi Felix,

Welcome to the forum. We are pleased to have your input and question. Glad you
have found us.

The first thing to say is that MD is a very misunderstood medical condition. It is misunderstood by
the medical proffession, the sufferers and by the public at large. Currently there are over 60
different types and lots of confusion. Many people will go many years without being fully diagnosed
and their symptoms fully understood.

The point you make about exercise is very valid as it is vital to keep the muscles as strong as
possible for as long as possible. Having said that being very tired and sleeping a lot more
is also a symptom of sveral of the different MD varieties. I personally am going through this at the
current time. I cannot explain the full levels of fatigue and tiredness that suddenly arrive. Before I could not
envisage that such fatigue could exist. I have an MD trained Physiotherapist that has come up
with a bespoke exercise programme for me and my condition.

Your friend might not fully understand what is happening to her. MD is a progressive, multi-system disease
and it could be that her body just cannot function without the levels of sleep it is telling her to do.

Very pleased you are looking out for her and getting advice. It is so complicated and misunderstood though.
Some patients do not even give their symptoms fully to their GP’s because they do not realise
it is all the same problem. I do sympathise with her. It is just weird when just a short trip to the
corner shop sends you straight to sleep. I do not know how to describe the fatigue.

Maybe she could get her exercises in different ways when she is awake.

Hi, I was wondering if there were two things going on – are they so tired they ‘have’ to sleep or be passive/still because of MD or is it that they could do activities but haven’t found anything worth getting up for. Is the difficulty physical, mental or a bit of both? Either way their might be some relief in doing things a different way, getting health generally checked out?

I have a type of Limb Girdle and fatigue is worse if my breathing is not sufficient (CO2 rises that makes you sleepy or actually fall asleep if you are not strong enough to take proper useful breaths). Sometimes people don’t realise it’s happening. Heat and humidity makes me more tired and even certain times of the month are worse. A small cold brewing can also knock the wind out of my sails… so many things come into play – even simple dehydration or just plain old lack of good sleep!

Also – could it be something totally different – like an undiagnosed impairment, anaemia or similar condition and not MD at all?

best wishes – Louise

Hello Felix,

Mr Fox has given an excellent reply, which I hope will be helpful to you. What I wanted to suggest, is that if your friend is applying to go to university, she must have the necessary qualifications to believe she has a chance of a place. Therefore she must have studied sufficiently hard to achieve them. However, studying at university will probably not allow her the luxury of sleeping for two thirds of the day [not if she wants to graduate with a worthwhile degree]. There might be help available for her, but she would have to ask first. Is she aware of this? It would be such a waste of time and money if she really cannot physically do the course due to tiredness and staying in bed.

You sound like a really kind and good friend – would it be worth having a chat to her, mentioning that you’re concerned for her well-being. Sometimes it’s easier to open up to friends than it is to members of the family.

I think [aside from the sleeping issue] that you might be right in your belief that she won’t do anything unless it is helpful to her career. It could be that she feels so utterly drained by coping with the dystrophy, that she really has no energy left for things that she feels are not so important to her.

I am sure others from the forum will have more to say, so keep checking the site.

Sybylla

I was thinking… perhaps she hasn’t matched up having a career with accepting that you also have to keep up your health and wellbeing as best as you can (physical and mental) – like eating well, exercising, keeping mobile or on top of things to help take away the effort to get he job done? Also, I know some people are very career focused but I personally couldn’t survive on work alone – had to be motivated by some fun or crazy stuff!!

The worst thing would be for them to have a realisation in x years that there is a life out there – but look back and regret hastening the muscle weakness perhaps by passing the time of day in bed in those earlier years?

Maybe meeting or talking to people with a similar type of MD or similar progression level would help with realising that everyone is different and whilst we all get weaker – the rate of progression and the exact way it effects people is so totally different that no Dr can tell EXACTLY what that will be or how it will show up! As they say, it isn’t over until the fat lady sings… and until then there is so much of life to get on with :-)

You sound like a wonderful friend – they are very lucky.

Hi felix,
All i can really do is echo the views of other members.
I too took diagnosis badly, not wanting to go out, and adopting the “whats the point attitude”.
Eventually i decided to ge out there, take part in simple hobbies like fishing, and evntually joined my local powerchair football team.
I know it may sound corny, but realising there are people out there that are worse off helped kick my arse. I was diagnosed late on in my early 20’s, so i had the oppportunity to play sports at school. Seeing these little kids that wont get that opportunity yet stil smile and carry on bought it home to me.
Also going to a local md group meeting also helped to share experiences etc.

Good luck and hope it goes well.