ALS - 22 years

[TBear]

I also talked to Dr. Strong about this and he was then thinking that ALS wasn't one sickness but a whole class of failure. He also indicated that 80% of what is known about ALS has come about in the last 10 years! I'd also heard that, plateaus can be reached for extended periods of time but that slides are better tolerated by males than females. That was an observation that I'd heard at one of the clinics... can't rememeber if it was London or Sunnybrook.
Al... you can get to Sarnia in 54 hours but you have to go to Tuktoyaktuk first and walk back.
CHeers

T.

 

[Timshelper]

By Greyhound my freind! Flying is for the birds and 4 times expensive. About chubby versus skinny I think its a good thought . Little Tim was only 140 pounds maybe 5-4 when all this started now hes down to I think 80 1bs and has a feeding tube. He was in excellent shape for his stature worked out, ate right all those things but he wasnt a very big man. His immune system was good though and still is thank goodness. How come we never get a professional on this forum adding their 2 cents? I guess they dont know anything either?
Kim
ALS About Loving Someone

 

[lacey]

SOme interesting ideas here. My mom was diagnosed at age 50 and she was a little bit of a thing. About 5 feet tall and 9o lbs. As I had said she lived for 16 years, most of which she was able to walk, talk etc. The last 3 years or so she went downhill rapidly. SHe also had a negative attitude so it was not positive thinking that helped her! There was no apparent reason for her to have lived for so long other than the fact that her doctor says they see this in about 10% of all ALS patients. Who knows but just wanted to add my thoughts!

 

[trisha p]

I have read (in one of the ALSA journals, if I remember correctly) that they have found a correlation between how "thin" a person is and having ALS but with many of the possible risk factors for ALS, there are enough people who have ALS who were did not necessarily have a small physical stature as well. My brother does fit - 5'7", and absolutely no body fat. He used to train as a body builder and was very very active. They are moving into their new (one level) house today. Thank God for his wife, I think she was sent straight from heaven to be his partner. Next week she will start to build a deck in the back where they can install a chair lift, and a ramp on the side of the building. He doesn't need the wheelchair yet, but he is finding it difficult to climb the stairs. I guess they are finally sending a physiotherapist over to help work with the stiffness in his joints. He says they have been bothering him lately. But no bulbar symptoms yet, thankfully.

Chris and Mike, any recommendations on how to ride mechanical bulls during stampede? I'll be visiting my brother the second week of July and will be bringing my cowboy boots and hat. I figure it'd give my brother a great laugh....

Hugs to all....

 

[christinapace]

I would be so interested to know what you friend Gerry has been doing or taking to have been given such a great chance at life after his diagnosis. Please let us know what he is doing so the rest of us can get hopefully the same results. Age at diagnosis is interesting in terms of prognosis, there is just so much to learn from this illness.

Pacer

 

[christinapace]

I am anxiously awaiting your reply on what Gerry might be doing that can help other PALS. Any word yet?

Christina