HottingerD
New member
- Joined
- Jun 27, 2020
- Messages
- 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.
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.