Old 10-25-2010, 08:43 AM #1 (permalink)
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Default How long for limb onset to total loss of limb movement?

I know everyone detiororates at different speeds but I would like to guage how quickly I'm going down and how long before I have total loss of legs and arms. I started with footdrop and difficulty walking with my left leg 8 months ago.

Today both legs are just about gone...both very weak. I can still move my toes and can stand up with some help and stagger along a little holding on to someone. Both my arms are very thin and weak. My right more than the other the fingers are very stiff and weak. The left is just starting to get stiffness in the fingers.

The changes recently make me think I only have weeks before total loss I can't bear the thought of living not being able to move.
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Old 10-25-2010, 09:43 AM #2 (permalink)
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Default Re: How long for limb onset to total loss of limb movement?

Hello. It is hard, and I'm so sorry. Do you have a power wheelchair yet? It sounds like you need to be using one. I believe that the loss is less if you "conserve" and don't use all your strength. With the help of a wheelchair, you should have a month, perhaps, while you can still transfer with bars to the toilet from your chair as well as get out of bed to your chair. You need to get a lift unless you have someone with you all the time who can pick you up and carry you. Both power chair and lift should be had as soon as possible. My guess of a month is only a guess.

The arm changes including both weakness and stiffness make any guess impossible for me. Some people do retain one finger which they can use to push buttons, a joystick on the wheelchair, and slowly type with... as you say, however, it's so very individualized, impossible to say. I hope that you have someone who can help you organize and get the helps which you need.

Sending you a warm hug,
Ann
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Old 10-25-2010, 09:43 AM #3 (permalink)
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Default Re: How long for limb onset to total loss of limb movement?

Good question,that is my main question and I can not get an answer.I looked your location up on Google,WOW I see a lot of beauty there,hang in do your best.
Ken (beach Bum)
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Old 10-26-2010, 10:59 AM #4 (permalink)
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Default Re: How long for limb onset to total loss of limb movement?

Hi Land

My mom start felt weakness on her hands first sometime last year. She keep losing her thumbs / hands / arms muscle. How ever right now over a year she is still able to use her hand for most of the activities except for doing small things like button, zip and carried heavy stuff. I drive her to Suan Lum (a Park) every morning and she will go back home herself. We asked her to take a cab but she is quite stubborn she always takes public bus you know. So we need to call to check if she already reach home safely. She even continue do cooking dinner for me. I asked her to stop doing that but since she love to do and she is still able to do so I let her do what she love.

Currently I notice she slurred on some of her words but still understandable. I hope her progress is slow and wish her to stay with me as long as possible with some comfort level.

How are you on the Riluzol ? does that help ? last time you mentioned you have difficult time to breath how is that now ? hope everything go well with you and getting better.

Nid.
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Old 10-26-2010, 07:27 PM #5 (permalink)
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Default Re: How long for limb onset to total loss of limb movement?

My first limb symptoms were in 2004.I needed a wheelchair shortly after diagnosed in 2007.I lost everything a year ago. It was slow and steady. Everyone is different. I really think it is better for you NOT to measure your progression against any others. The thing we have in common is the diagnosis and our warm,unwavering support of each other.
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