andyvaughn
Distinguished member
- Joined
- Feb 12, 2008
- Messages
- 144
- Reason
- CALS
- Country
- US
- State
- ca
- City
- thousand oaks
I am just curious to see what everyone's experience is in getting support from their ALSA chapter. I know for us, while we had a kind and compassionate case worker, there was very limited benefit from the chapter to us on a personal level. I was wondering if everyone might want to tell of their experiences, and what they would see as beneficial as a Pals/Cals. My thoughts were that I would take suggestions to our local chapter - trying to improve the lives of Pals that might benefit from much needed services.
Here are some of the things I wish we would have had.
1. A full home review upon - or shortly after diagnosis, with suggestions as to critical modifications, comfort modifications, and a list of local, reputable contractors with experience in handicapped renovations and a list of preferred vendors, prepared by ALS patients, of good quality items at best cost, such as bidets, grab bars, etc.
2. A quarterly lottery system for a bathroom redo. Perhaps they could even get a local hardware/home improvement store to donate a set amount quarterly, and a contractor to donate services quarterly in exchange for publicity.
3. Regular visits from a PT/OT/ST to eval home needs as disease progresses.
4. A comprehensive list of loaner equipment available.
5. A resource/list of items for sale - such as vans, lift recliners, etc. that Pals are no longer using.
6. A volunteer pool, perhaps of local college and high school students - to help with errands, yard work, whatever.
Of course, the list could get MUCH larger, but what would you guys deem the most important thing that the ALSA can do, or did/does do for you that would directly improve your quality of life?
Andrea - wife of former Pals (now Angel) Jim
Here are some of the things I wish we would have had.
1. A full home review upon - or shortly after diagnosis, with suggestions as to critical modifications, comfort modifications, and a list of local, reputable contractors with experience in handicapped renovations and a list of preferred vendors, prepared by ALS patients, of good quality items at best cost, such as bidets, grab bars, etc.
2. A quarterly lottery system for a bathroom redo. Perhaps they could even get a local hardware/home improvement store to donate a set amount quarterly, and a contractor to donate services quarterly in exchange for publicity.
3. Regular visits from a PT/OT/ST to eval home needs as disease progresses.
4. A comprehensive list of loaner equipment available.
5. A resource/list of items for sale - such as vans, lift recliners, etc. that Pals are no longer using.
6. A volunteer pool, perhaps of local college and high school students - to help with errands, yard work, whatever.
Of course, the list could get MUCH larger, but what would you guys deem the most important thing that the ALSA can do, or did/does do for you that would directly improve your quality of life?
Andrea - wife of former Pals (now Angel) Jim