September 28, 2012 at 5:02 pm #74561Entering the fatigue stage but not yet requiring a
Hi – I have a friend whose daughter has some form of limb girdle (7years old)
She struggles to go up stairs, lags behind on walks and generally tires very quickly.
Aches in legs at night times.
This has come as a huge shock to the parents and they are finding this very tough to deal with.
Is there anybody who can be of emotional support and guidance to the future. Main stream school? Or schools which will offer special needs in the future?
What activities for theses young children entering the fatigue stage but not yet requiring a wheelchair?
How to keep ahead without knowing how severe it is?
Any information will be greatly appreciated.
Original post on the general board… Zamora – forums in general and this board will perhaps help as an information source?
I was diagnosed at age 7 with Limb Girdle because I wasn’t walking properly or raising my arms above my shoulders etc. My schooling was in the 80’s largely – so very little was understood about inclusive education. I went to several mainstream primary schools (changing because some of them had only steps etc that I later could not climb up). I’m glad that I did because the education in ‘special’ schools at the time was not focused on getting any qualifications – mostly care and therapy. There is much debate about what sort of schools offer the best type of education today.
One of the key things I remember about growing up was one of the things you mentioned – that bit where you get really tired and can’t keep up yet can still move around enough not to have considered a wheelchair (and indeed all that comes with that such as access in your home/garden/school/friend’s houses etc.)
I was left out of playing with friends and going to the places they went to – because I was just too tired, couldn’t keep walking, couldn’t do the activity at the same pace, couldn’t get up the steps in their houses or ride a bike (and the worse one was I couldn’t sit on specific chairs as I was often too tired or lost the strength to be able to stand up).
A lot of these exclusive activities could have been more inclusive if I had been able to have a wheelchair at a younger age – even if it was just to play with friends. Education on inclusive play and environments might have helped for my own parents and those of my friends. Perhaps people could have come to my house more if was more accessible or my friends parents might have been able to use some portable ramps or took an interest in helping me get around – like looking at different ways I could get in the house! Things that could have taken the worry out of falling and looking awkward trying to get up from a dinner table! Just general awareness and attitudes goes a long way – a willingness to do small things that make a difference like offering a higher chair to sit on!!
I had lots of ideas about how I could be involved in life and ‘play’ but no adult really wanted to hear them. They were focused on therapies, sedate activities involving sitting and staying indoors and avoiding wheelchairs. For me that was a very bad approach. I had to relearn social skills and so many different things as an adult because of this. I think take time to listen to young people with MD is so important :-)cripticParticipantPosts: 307Joined: 15/03/2011October 1, 2012 at 1:55 pm #86520Re: Entering the fatigue stage but not yet requiring a
You paint a very real picture for a lot of people out there. I think I must be on the mild end because although I get fatigued and when I over-do it exercising I can’t lift my legs well, it’s never really caused a major problem where something needs to be modified (ie: ramps, stairs) for me. Also, although I can lift my arms over my head I can’t keep them there for a prolonged period of time without feeling tired and breathless. I’ve discovered (through doing certain exercises) that my shoulder muscles are EXTREMELY weak. There are certain movement that I simple cannot for the life of me do. It feels a bit defeating when your body won’t do what you are telling it to. My case is so mild that I sometimes wonder if I really do have a problem but I think of all the contractures I have in all my joints and all of the pain I feel everyday and know that can’t be true. At the very least, I wish more was known about my type of MD. Then I would know the things I feel are normal. Ya know?
Off to the neurologist today for a general checkup.
Thanks for your post Louise!
MelissaAnonymousInactivePosts: 0Joined: 01/01/1970October 3, 2012 at 1:26 pm #86522Re: Entering the fatigue stage but not yet requiring a
Some ideas for you that are helping my 8 year old……use wheelie bag not rucksack for school, have locker at waist height and not in a corner, sit at desks near the entrance of the class room, leave 2 minutes before the end of class with a buddy so that corridor jostling is reduced, buy a mini folding stool for school that can be used for assembly, sports, christmas concerts etc ie any activity with prolonged standing or getting up and down from the floor, get permission for child plus buddy to go to school library or somewhere similar if fatigued at lunchtime or break, brief school on difficulties and encourage each teacher to give your child permission to raise fatigue with them…..this can be as simple a saying at the start of term “just let me know if you need to rest for a minute/slow down etc”. This is especially important for any teachers that your child finds intimidating. Cut down on after school clubs and feed immediately on pick up with carbs. snack at break. Ask school to exclude you child from any ad hoc tasks require carrying or stairs….give them other tasks instead. If walking to school confidr drubbing or rocket electric scooter (ours was £50 refurbished). Gosh….i could go on, but basically eliminate all boring energy spend too save it for fun stuff! Good luck to her.. (confidr drubbing is consider buying…..phone refusing to edit it!)AnonymousInactivePosts: 0Joined: 01/01/1970
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