• Peter Powell posted an update 1 year, 9 months ago

    Brand new to all this. Appointment on the 7th March with an apparent internationally know Neurology expert who will Probably answer my queries. However my main focus now is the following:
    When does the clock start ticking 8 months ago when I first noticed hand weakness and shortness of breath….or when diagnosed?

    I am still working, driving a car? Doing chores ( often breathless), walking around without aids etc etc.

    So recognising that there is a vast difference in how people react or deteriorate…any suggestions when my ability to do things normally, would be compromised. e.g. when would I be confined to a wheel chair, unable to drive a rat etc?
    I realise that the progression varies enormously, but it would be nice to know ball park timeframes….

    • Hey Peter, hate to say this but… it depends. I started with hand weakness four years ago. I am still talking, feeding myself, standing up to take a leak, and having a pretty good time. I am not walking (in a power chair), left hand is pretty useless, little core strength, and a hard time rolling around in bed.

      On the other hand, many people are deceased by now. It is so variable. I pay attention to this forum and avoid the doom and gloom of others. Being positive and resilient matters a great deal. And I would follow Dagmar on this website. She has a handle on all of this.

      Do all that you can while you are still able. Although the rate of decline varies, the disease is immutable. You will be surprise by the number of good days that you have. Best wishes on your journey.

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