living w/als over 10 years

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sbabber, I'd like 2 know more like why did it take 12yrs to diagnosed u ? were there other complications that made it impossible to diagnosed.
 
I'm surprised that it is not that interesting to find someone with als that has lived as long as I have and not have tons of questions for that person I remember meeting Kurt whom was one of the longest living als patients I ever met on line and his informations and inspiration was wonderful. I needed to know there was hope. that I could live longer, that it wasn't an immediate death sentence. I am here for anyone who has questions, a shoulder to lean on or a shoulder to cry on.
 
Hi Hope2000, my dad would like to know if you have been taking Rilutek?
 
When people on this thread say ALS diagnosis, they do not mean PLS or PMA? Or upper motor neuron dominant ALS? I am not trying to be picky but have heard stories of longevity with ALS only to find out the person has PLS - very diiferent in terms of life expectancy. All best, D.
 
Ray was diagnosed with ALS 8 years ago- but he isnt self sufficient anymore. He's locked in. Has eye movement and some facial expressions.
 
When people on this thread say ALS diagnosis, they do not mean PLS or PMA? Or upper motor neuron dominant ALS? I am not trying to be picky but have heard stories of longevity with ALS only to find out the person has PLS - very diiferent in terms of life expectancy. All best, D.
Dani, do you think that Stephen Hawking has ALS? One of my neurologists, a Brit, before ALS was even suspected in me, told me he didn't think he did. Why do you include "upper motor neuron dominant ALS" in your list. Do you not regard it as a true variant of ALS?
John
 
Thanks All,

I know that people with the 'classic' ALS can exceed given life expectancy but functionality tends to be dimished in most cases.

John, I really don't know about Hawking, just the short overview about MND on his site. I have heard PLS from MNDers here in the UK. He does state he could still dress himself till early 1970s, some years following the diagnosis, so I guess it is slow. I always thought he was on a vent...but no, he is breathing independently.

As for upper motor neuron dominant ALS - I do think it is a 'valid' variant, but it would imply less atrophy, hence greater functionality. I have seen a great range where atrophy is concerned amongst PALS, from what I would call a barely noticeable weakness/mild atrophy to a complete lack of muscle (the latter is the case with my partner's arms). I think atrophy impacts on functionality and independent performance of tasks a great deal more than spasticity. One would have to really push a consultant here in the UK to even utter the phrase 'upper dominant', they simply prefer MND - all in one. Some PALs have disovered they have PMA or PLS years after the final diagnosis, and while there maybe a scope for deferring PMA or PLS diagnosis (in case the patient gradually develops additional symptoms), initially the lack of distinction provides very little hope.

Dani
 
Dani, Hawking was diagnosed about 1963 so it sounds like his ability to dress himself lasted around 10 years. I have just finished my first 10 years and I still dress myself although buttons are difficult. Wikipedia claims "Hawking has a neuro-muscular dystrophy that is related to amyotrophic lateral sclerosis". I thought he was on a vent too. He had a tracheotomy in 1985 but apparently can still breathe on his own.

Your comments on atrophy vs spasticity are interesting to me. I have more spasticity than atrophy and although I have quite weak legs and increasingly arms, I still can use both.

Thank you for your thoughts on this.

John
 
yes joelc I insist on having my own thread futhur more I believe my story should be read let people newly diagnosed know some of us do live longer than the doctors say. Let them know there is hope, if we don't have that what do we have? So for some of you whom have been newly diagnosed it hard I can't tell you different my best advice is take things slowly take care of yourself first and foremost do plenty of resting take your vitamins and try to enjoy life we really do only live once someone said that for a reason. I will soon be posting my story on the als newletter look for it and GOD BLESS YOU ALL !
 
hope2000, how come I cant leave you a visitor message? Please get in touch with me, I'd like to share something!
 
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