Progression speed - how defined?

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HottingerD

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Joined
Jun 27, 2020
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2
Reason
PALS
Diagnosis
05/2020
Country
US
State
CO
City
Westminster
My doctor says “you’re progressing as expected”.
I see on this forum others mention...”slow progression” or “fast progression”. How is this defined? in real time or only in hindsight?

I feel like I’m declining quickly.
January - June 2020 - still doing everything, just a bit slower (foot drop)
July 2020 - still able to climb stairs slowly with cane, using AFO (only 1leg/foot seems to problem)
August - using Walker full time (fatigue really hitting me hard)
September 2020 - no more stairs, Walker & manual wheelchair, BIPAP started (now 2nd leg became weak)
October 2020 - manual wc only, still able to stand for transfers with gait belt, poor sleep due to immobility pain
November 2020 - Hoyer only transfers, PWC, still not sleeping well, both legs useless
December 2020 - adjustable bed & PT helps with pain, weak cough
January 2021 - right arm weakness

Yes, there are physical changes every WEEK! Is this considered, by those with hindsight, Fast Progression ?

While the final results of ALS is consistent with all of us, it seems little else is.

I’m a realist, and I don’t plan on getting a Trach, so how likely will I last 3 more years, let alone more?

Truly have appreciated all who have posted on this forum, it has provided so much knowledge as well as comfort Knowing I’m not alone.
 

Nikki J

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Mar 22, 2012
Messages
10,159
Reason
PALS
Diagnosis
04/2014
Country
US
State
MA
City
Boston
the things that kill us directly as you no doubt know are malnutrition and breathing. If you plan a feeding tube you can avoid the first.

you don’t plan to trach ( neither do I) Do you plan to use noninvasive ventilation ?( bipap etc).

your progression seems moderately fast thus far. I have known people dead in just a few months. but it sounds like you have lost your leg use, are losing an arm and the weak cough is worrisome for diaphragm weakness which is quite a lot in a year . Do you know your svc? That is a big survival predictor. However progression is not linear and you might plateau as my sister did.

have you asked your doctor directly About survival? They don’t have a crystal ball and none of us have an expiration date stamped on our bodies but they might be willing to answer the question as to chances of surviving one year, two years 3 years or more.

I am sorry none of this is easy or fair
 
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