Question About ALS Progression...

[Colly-Root]

hello,

my step father was diagnosed with this mother sucker (leg onset). by the time of his diagnosis (2 years ago), his progression seemed rather quick...but now miraculously seems to have slowed down quite a bit (to a moderate progression)...
his specialist is now telling him that his progression may stay this way... and that therefore he has much more life left than previously expected. we don't know if we should be happy, or if ultimately this will reveal itself to be a fluke for the time being. I guess time will tell.
I guess my question would be if ALS progression typically fluctuates? The doctor says that young adults (which my step dad is obviously not) usually show signs of slower progression, but that the rate of progression is slow from the get-go, and does not typically fluctuate. also mentioned that this could be a "plateau period". but it doesn't seem much like a plateau, as it does a slowing down of the process. or is that the same thing? errrr... frustrating disease, this is.

anyway. we find this to be a weird blessing. I hope all pALS experience this!

 

[Rhonda Kim]

Hi Colll-Root
My husband was diagnosed june 08. He seems to have very stead progression. There do seem to be plateaus but it only last for a week or two and it starts again. It most likely never really stops. I read once that a person doesn't feel changes in there body until the change reaches 15%. Joe seems to have attacks on parts of his body and once the attack calms down he feels the effects of what it has done to him. He may have bad cramps in his neck and yaw uncontrolable for a week, then he will have a noticeable change in his abilite to eat ect. And on it goes, now he is breathing at 23% he deteriorated at .64% a week, almost like clock work. I don't know if this is fast or slow progression. He seems average for the bulbar for. If a person is part of a study group it could speed things up or down but you won't know because Lou is very unperdictable any way. A man at one metting said his wife was in a wheel chair in 3 months she got in a study and things seem to stop progressing but as soon as the study ended she went back to that fast progression and died soon after. I am sorry for your step Dad and you and your family. It has taken us this past year to calm down. What a slap in the face when a family hears this news. God bless you all.
Rhonda

 

[asantiago]

Anything is possible with this disease. There have been cases where progression plateaus for a while and I really hope that is what your step-dad is experiencing. Stephen Hawking has been living with Lou Gehrig's disease for about 40 years. While nobody likes false hope, sometimes hope is all that keeps us going. Time will tell, how long has it been that his symptoms seem to be slowing?
God Bless!

 

[Al]

I've been 6 years this Oct. with limb onset. They I'm a slow progresser so you never can tell. Live each day to the fullest. Tomorrow will come whether you worry about it or not.

AL.

 

[Colly-Root]

Thanks for the responses.
and yes, we tell my step-dad to live each day to the fullest - and he does. he doesn't complain about his disease... he's always been a very easy going guy anyway... but we're just happy to see that his progression has slowed down, and hope to see it that way.