Long Stage One?

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KissJ

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Joined
Jul 6, 2011
Messages
380
Reason
Loved one DX
Diagnosis
05/2011
Country
US
State
Pennsylvania
City
Greensburg
I need a bit of hope. Has anyone here experienced a long stage one with ALS? My husband has his limitations, but if he could only last at this stage a while, longer than usual, it would be a miracle that I pray for. If we could have some of the retirement time we wanted and now sort of have with his disability time I would be so very, very grateful. Anyone? How long was stage one? Thank you! God Bless you All!
 
Im not sure what you mean by "stage one". Can you clarify please? Thanks
 
People progress at different rates. i was wheelchair bound within four months of diagnosis. It's now seventeen and one half months and I don't want to go anywhere. Wishing you the best.
 
I don't know what stage one of ALS equates to so I'm of no help.

What I do know is that progression rates vary from person to person and can change without notice.
 
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My husband was diagnosed in '06. He was pretty "normal" with a little help. Now it's a different story.

I think you or someone else has asked about stage one before. There are no "stages." It is what is is, with each individual.
 
I have read an ALS Caregiver publication that has three stages and what are general guideline for what to expect and what equipment will be needed.
 
ok then so what is stage one?
 
I think I found the info she spoke of.. it was pretty generalized Stage one symptoms start Stage two symptoms get worse Stage three symptoms are really advanced. It also said repeatedly that no two cases of ALS progress the same way. KissJ... it is impossible really to answer your question because with the subtlety of early symptoms and the high rate of misdiagnosis... many of us simply don't KNOW how long our PALS had early symptoms.
 
That manuual lists early, middle and late stages, not 1,2,3. Even they say no one knows how long a stage lasts. Live for today.

AL
 
Well HOPE is what keeps us going, kiss....I was diagnosed last August. But my foot drop came 6 months earlier...it has now been a year and I am still able to walk about a block, but that reallly tires me out, so now I use a scooter. I think Al has it right: Live for NOW...don't go to the future until new symptoms start to show up, otherwise you get all bent out of shape and ruin the present moment. Enjoy all he can still do, and then when that passes, enjoy what else he can still do....but hang onto hope. ((hugs))
 
I must agree with Sequoia...well spoken! We simply do not know and Hope is what we cling to.
Hope for Today is all we are guaranteed and we dont know how much of that..try this
Stage 1...Hope, Live, do, conquer
Stage 2...Hope, Live, do, conquer
Stage 3...Hope. Live, do, conquer
Sending ((Hugs)) your way :)
 
I started a thread called" Happiness Now"...its a place where we can share what we are hopeful about, what gives us joy TODAY ! I find that if I am grateful for what I have today, tomorrow does not seem so hauntingly bad...there is always something to be grateful for. Come to the thread and give it a try...when you are grateful for what you have, it seems the list just gets longer...8)
 
My husband Bob was in "Stage 1" for about 3.5 years which was before diagnosis. It's been 8.5 months since diagnosis. Now we're getting closer to the end. Everybody is different.
 
I was diagnosed a year and a half ago with atrophy in one shoulder. It has now progressed to the other shoulder and the back of my thighs. I can still walk, talk, eat etc but can't run or lift my head very well. I choke easily and have to eat slowly.

I'm going for a second opinion on the ALS diagnosed this month. It took me this long to get over the shock of the first diagnosed. I've been on antibiotics since and my energy comes back with the meds. I'm still hoping I was misdiagnosed.
 
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