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Thread: Advice needed please .

  1. #1
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    Advice needed please .

    Thank you for all your messages of support .I was diagnosed with ALS MND a few weeks ago and am feeling overwhelmed . I have been having tests for severe walking problems for two years and for a while it was thought to be due to a long existing back problem.Because of this we luckily moved to a bungalow and I have been using a mobility scooter for several months. I don't think I am in denial still and I am trying to take one day at a time. Fortunately there seems to be much support from the MND team( and my practical husband ) who are trying to be one step ahead and forsee what I will need before it becomes a crisis. As I can't walk unaided I have had a wheel chair assessment and OT and the physio are calling next week. I would appreciate any advice about adaptions to the house and useful equipment because I wouldn't like to find we need more later. The other thing I am finding really hard is telling people. We live in a small community and I want to be out and about but don't want to be emotional when explaining to people.
    Ṣrry for the long post and thanks again. Also Sorry if this is in the wrong section of the forum .. am just getting used to it. Best wishes to everyone
    Debbie x

  2. #2
    Forum Member Terry's Avatar
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    Hi Deb;

    You might find it easier to print out some sheets something like these so that people can just read them.

    mnd help 3.jpg

    mnd help 31.jpg

    Love Terry
    Last edited by Terry; 16th May 2018 at 15:19.
    TB once said that "The forum is still the best source for friendship and information."

    It will only remain so if new people post and keep us updated on things that work or don't work and tips.

    Please post on old threads that are of use so that others see them and feel free to start new subjects and threads.

  3. #3
    Forum Member Ellie's Avatar
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    Hi Debbie,

    Yes it is overwhelming but it does calm down, honestly! It's quite amazing really what one can get used to if you're in the right frame of mind - and positivity goes a long way to making your life easier on various levels.

    We always say to try to stay one step ahead regarding aids and appliances, but in reality that is not always possible!

    You've had your wheelchair assessment, which is good. N.B. Make sure it is the MNDA approved special neuro chair spec - not eveyone gets the correct spec, for some absurd reason

    For the OT - think safety!!

    Grab bars/hand rails in bathroom, on stairs, front door.
    Think of how you'll transfer from chair to armchair/loo - you may benefit from using a transfer turntable in the future.
    A riser-recliner armchair is really useful, even now.
    Wheelchair accessibility in & out of house.
    Cutlery, eating etc.
    Shower chair that goes over the loo.
    Level access shower and appropriate sink.

    These are the main points - no doubt I've forgotten things but someone else will know In essence, the OT should be on the ball, but some are not...

    How are your hands and feet? Might a splint help? Ask the Physio to show you simple stretches and range of movement exercises to do.

    If you live in a small community, the bush telegraph probably has done its job by now! If you want to tell some trusted friends to spread the word, that might take pressure off you - it worked for me and I added a stern warning of "Don't give me looks of pity!!"

    Love Ellie.
    ​Diagnosed 03/2007. Sporadic Definite ALS/MND Limb Onset.

  4. #4
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    Quote Originally Posted by Ellie View Post
    Hi Debbie,

    Yes it is overwhelming but it does calm down, honestly! It's quite amazing really what one can get used to if you're in the right frame of mind - and positivity goes a long way to making your life easier on various levels.

    We always say to try to stay one step ahead regarding aids and appliances, but in reality that is not always possible!

    You've had your wheelchair assessment, which is good. N.B. Make sure it is the MNDA approved special neuro chair spec - not eveyone gets the correct spec, for some absurd reason

    For the OT - think safety!!

    Grab bars/hand rails in bathroom, on stairs, front door.
    Think of how you'll transfer from chair to armchair/loo - you may benefit from using a transfer turntable in the future.
    A riser-recliner armchair is really useful, even now.
    Wheelchair accessibility in & out of house.
    Cutlery, eating etc.
    Shower chair that goes over the loo.
    Level access shower and appropriate sink.

    These are the main points - no doubt I've forgotten things but someone else will know In essence, the OT should be on the ball, but some are not...

    How are your hands and feet? Might a splint help? Ask the Physio to show you simple stretches and range of movement exercises to do.

    If you live in a small community, the bush telegraph probably has done its job by now! If you want to tell some trusted friends to spread the word, that might take pressure off you - it worked for me and I added a stern warning of "Don't give me looks of pity!!"

    Love Ellie.
    Thank you so much for your advice... I am sure the bush telegraph is working well .. everyone is so kind it's just me that's sensitive and not wanting pity. I think the OT is from the MND team and to be honest it will just be a relief to feel more safe in the home. I have had some bad falls. In a strange way it's also a relief to use a wheel chair and not try to do what my body won't ! At the moment my arms feel OK but the latest EMG showed some weakness .Thanks again and wishing you all the best.
    Debbie X

  5. #5
    Forum Member Ellie's Avatar
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    Quote Originally Posted by Deb View Post
    In a strange way it's also a relief to use a wheel chair and not try to do what my body won't !
    Yes, once I got my wheelchair I was instantly more mobile & independent !
    ​Diagnosed 03/2007. Sporadic Definite ALS/MND Limb Onset.

  6. #6
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    Hi Deb. I was similarly having problems and had severe back problems for 38 yrs. The first neurologist that I saw sent me for a spine MRI (showed severe deteriotated discs, no surprise to me) then he discharged me. I didn't realise he'd discharged me and waited months for a recall. After about nine months I went to my GP who was as bothered about it as I was so referred me again. The next neurologist I saw seemed to suggest MND right away but he was reluctant to say for definate until a brain MRI was done and that revealed the scary horrible truth. This was autumn 2017. I have a 3 wheeled walker but I tire quickly so it's only useful and safe for shortish distances. I have a manual wheelchair that I cannot use independantly because of both the weakness in my arms but also a longstanding pain problem in my right arm. My OT has arranged for wheelchair services to come out to assess me for a powered wheelchair. Their criteria is very tight. You have to need to use a powered chair indoors before they'll consider giving you one. The local services wont supply disability scooters. If I want one of them I'll gave to get saving out of my meagre benefits. I'm glad that you have a scooter and your enjoying the freedom that it gives.

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