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Wheelchair hire/buy

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  • August 12, 2011 at 2:45 pm #73870
    Wheelchair hire/buy

    Hi there,
    I posted in November when waiting for a diagnosis for my son. Unfortunately our appointment was cancelled because of the snow, but we eventually heard in April that he is confirmed as having Bethlem Myopathy.
    Getting this diagnosis has actually been beneficial as the wheels have started turning and he is getting appropriate help. I still have one query though. Most of the time Adam’s mobility is fine, due to Bethlem’s being quite mild, but he does get very tired when on day trips etc. or when required to walk quickly. I was wondering about getting a lightweight travel wheelchair for him for this occasional use but didn’t really know where to look.
    Any ideas anyone?
    Also he has been referred for surgery to lengthen his achilies tendons but the surgeon wasn’t very helpful! he says that Adam, my little bumblebee :) , will be weaker after surgery and that this may not be recovered. He also said that it was my choice as to whether to proceed or not. How do I make that choice? Has anyone else had, or knows someone who’s had, this surgery and can you advise me please.
    Thank-you. x x

    Adamsmum
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    August 12, 2011 at 3:22 pm #81412
    Re: Wheelchair hire/buy

    Is the achilies tendons surgery to allow him to put his foot flat so that he doesn’t walk on tiptoes?

    Vicki
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    August 12, 2011 at 4:27 pm #81413
    Re: Wheelchair hire/buy

    Hi Adamsmum

    I had the achilles release surgery when I was 6. I can only comment on my experience but I do not regret having this surgery, if i had not had it I would not still be able to stand (I am 33 now).

    I had tiptoes and stopped walking at the age of 5. After referral to the Dubowitz Muscle Centre at Hammersmith Hospital, I was diagnosed with Congenital MD, now it is thought to be a variant of Ullrich CMD. I had the surgery and was in plaster, straight legged, for 2 weeks to prevent the tendons rejoining, followed by intensive physiotherapy and fitting for callipers. Once home I wore callipers in the day and night splints at night to maintain the 90 degree angle at the ankle – my ankles remain today my best feature!!

    I have just spoken to my Mum who remembers a lot more than I do of this time and she is pretty sure that I did not weaken after the operation.

    If you are not sure about what to do, are you able to get a second opinion? It is hard to make these sorts of decisions without more information from helpful professionals. I think some other of our members have had this surgery, perhaps they will be able to add some different perspectives.

    A learning experience is one of those things that say, “You know that thing you just did? Don’t do that.” - Douglas Adams

    sar78 sar78
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    August 12, 2011 at 6:31 pm #81414
    Re: Wheelchair hire/buy

    I too have had the same surgery. I was 11 (now 37 and I have Limb Girdle MD), when I had the surgery. I had stopped walking for a couple of months, although i could still stand when it was decide to go ahead and have the op. I was in full leg plasters for two weeks and during that time I was fitted for callipers and night splints. I remember the physio’s at school telling my parents not to do it as I would never walk again!! My parents chose to ignore them feeling that the physio’s and doctors at Hammersmith knew best.

    I did weaken after the op but only to the extent that I could not walk or stand without the callipers. With them I carried on walking till I was 16 and although it got to the stage at 16 that I didn’t have the strength to walk anymore I was still able to stand till the age of 23 which was extremely helpful for transfers and toileting.

    It is no easy decision to make and not one that can be rushed into. you have to do what you think is best for your son.

    Vicki
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    Joined: 05/03/2015
    August 18, 2011 at 8:44 pm #81415
    Re: Wheelchair hire/buy

    Hi

    Our son Dan (who is 2 and a half) has also recently been diagnosed with bethlem. Not sure if you are looking for a buggy style chair or a wheelchair. We are looking for a bigger buggy as Dan too gets tired. The websites we were given by the OT are…

    http://www.specialneedspushchairs.co.uk/index.htm

    http://www.specialkidsintheuk.org/resources/links/mobility.html#Chairs

    We too have been relieved to get a diagnosis as we have had a lot more support in last few months. I would be very interested to hear about how your little boy is coping and any advice you might be able to share.

    Debra

    Debra
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    September 29, 2011 at 3:52 pm #81416
    Re: Wheelchair hire/buy

    If the amount of walking is too wearing on him then I think it is a wise idea to get the wheelchair. If he has no qualms about it then I think that is great. My son isn’t quite as mild and when we got the wheel chair and wheelchair van; it was a godsend for him. He was able to do so much more without tiring.

    karen
    Participant
    Posts: 5
    Joined: 29/09/2011
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