2 replies to this topic

[dfnapier]

Can anyone help me please, I am not a full paraplegic, quadraplegic etc but I do have a significant mobility problem and at times it realy gets me down and I have been unable to find any one who has symptoms like mine, which makes it more difficult for my wife who is also my carer and myself to cope.

I realise that in comparison to the hurdles the majority of you have to face mines may seen minor in comparison.
Although I live in Australia, I was born and brought up in Scotland.

I was diagnosed with Subacute Combined Degeneration of the Spinal Cord when admitted to hospital in Oct 2004, this was caused by a severe B12 deficiency that was not picked up for about 10 yrs, cause unknown after a miriad of tests.

I was then put on Monthly injections of B12, this was then changed to fortnightly injections after consultation with my neurologist

As this condition progresses you can suffer from Spastic Paraplegia as I now am.

Questions

Do any of you have the following symptoms.

Getting int the car, Bottom on seat 1 leg in and 1 outside that just wont move for a period of time.

When you lie down at night time do you lose the ability to move your legs for a period of time

Do you have instances when even when you are out walking you stop and then cant move your legs for a period of time

Sitting down for say about 1/2 an hour and then when you try to get up your legs wont support you, infact at times I need 2 people to support me to get up.

I have already stuffed my right shouder through over use.

I am no longer allowed to drive and use an electric to scooter to get around localy, and I have a wheel chair that I use for going to the shopping centres etc.
I suppose my biggest fear is ending up in a wheel chair full time.

My Neurologist says that there is nothing else he can do to assist me

If you can help me in way it would be greatly appreciated.

[Simon]

Hi
Some here may be able to give their experiences but your symptoms sound more similar to Hereditary Spastic Paralysis (HSP). We had several clients here this year with HSP. They were all members of the same family at varying stages of HSP. The mother was in a w/chair, the son walked with difficulty while the one daughter also walked with difficulty but less so than her brother. Meanwhile the other daughter was totally unnaffected.
My best friends family also have HSP. He is unaffected, while both his brothers are in w/chairs.
Its is a degenerative disease and sufferers must have had similar issues to yours.
Simon

[Joed]

 dfnapier, on Oct 28 2006, 05:50 AM, said:

Do you have instances when even when you are out walking you stop and then cant move your legs for a period of time

I don't have your condition, but the above quote is a problem I deal with all the time. I've started a thread on here "A Question for the Walkers..." about gait disruptions like what you're experiencing.

I find too, that I must keep moving when walking, or else I'll get 'stuck' and have to start all over. It seems to be a momentum thing.