- Joined
- May 18, 2025
- Messages
- 10
- Reason
- PALS
- Diagnosis
- 05/2025
- Country
- US
- State
- TX
- City
- Boerne
See UT San Antonio this Monday 16th, hopefully care team will be put in place Initial symptoms late oct 2024 left drop foot confirmatory ALS diagnosis May 2 Mayo clinic Still using walker
What Ive done in last several weeks:
1 Installed 21 inch high toilet with Bidet system in master with grab bars
2 Continued physical therapy 2 times per week
3 using 4 inch step to stretch lifting muscle on outside of left shin so AFO with hopefully work better doing both sides now 4 times a day sets of 10 withe 15 s second hold trying to get ankle flexion up to90 degrees or more which brings my heel down
4 AFO consult done and brace ordered once medicare approves left foot lite wt carbon type 2 wks out
5 Hard foam pads for chairs as risers for help standing up after sitting
5 6 inch risers put on couch and loveseat
6 Cal King bed installed electric base with head and foot lift capability and 3 massage settings Brand- Reaniman Bed Bath and Beyond $998 delivered works very well
7 30 inch bed rail installed on exiting side of bed, strapped under mattress tightly secured and has nite light and pouch for remotes etc , Its good for holding onto and pushing against for tuning over on my side
8 pee bottle wherever i go taking AZO overcounter med
9 suction type grab bars put in shower as touch points
Challenges due to progression
1 Losing grip in left hand hard to cut meat and open anything
2 Muscle fatigue may be due to meds anti spasisity and rilusole or just not sleeping well
3 Side sleeper turning over in bed Bed rail helps
4 getting boxers and shorts on Have to sit in walker and use grab stick same for shoes
5 bending down is impossible due to stiffness must use grab stick
6 purchased gummies my use for anxiety as needed
7 Right side not progressed as much so still drive but ony locally
8 will start voice banking soon
9 eating and swallowing still good no wt loss
10 spasisity more pronouncedworse at nite tazanidine helps 2mgs every 3 to 4 hrs
11 must be very careful with walker turning around a challenge it is nice one with brakes
12 major balance issues
Just wanted to share i dont see posts like this your thoughts prayers and experiences are appreciated
What Ive done in last several weeks:
1 Installed 21 inch high toilet with Bidet system in master with grab bars
2 Continued physical therapy 2 times per week
3 using 4 inch step to stretch lifting muscle on outside of left shin so AFO with hopefully work better doing both sides now 4 times a day sets of 10 withe 15 s second hold trying to get ankle flexion up to90 degrees or more which brings my heel down
4 AFO consult done and brace ordered once medicare approves left foot lite wt carbon type 2 wks out
5 Hard foam pads for chairs as risers for help standing up after sitting
5 6 inch risers put on couch and loveseat
6 Cal King bed installed electric base with head and foot lift capability and 3 massage settings Brand- Reaniman Bed Bath and Beyond $998 delivered works very well
7 30 inch bed rail installed on exiting side of bed, strapped under mattress tightly secured and has nite light and pouch for remotes etc , Its good for holding onto and pushing against for tuning over on my side
8 pee bottle wherever i go taking AZO overcounter med
9 suction type grab bars put in shower as touch points
Challenges due to progression
1 Losing grip in left hand hard to cut meat and open anything
2 Muscle fatigue may be due to meds anti spasisity and rilusole or just not sleeping well
3 Side sleeper turning over in bed Bed rail helps
4 getting boxers and shorts on Have to sit in walker and use grab stick same for shoes
5 bending down is impossible due to stiffness must use grab stick
6 purchased gummies my use for anxiety as needed
7 Right side not progressed as much so still drive but ony locally
8 will start voice banking soon
9 eating and swallowing still good no wt loss
10 spasisity more pronouncedworse at nite tazanidine helps 2mgs every 3 to 4 hrs
11 must be very careful with walker turning around a challenge it is nice one with brakes
12 major balance issues
Just wanted to share i dont see posts like this your thoughts prayers and experiences are appreciated
