patoyeah
Distinguished member
- Joined
- Mar 30, 2016
- Messages
- 249
- Reason
- PALS
- Diagnosis
- 11/2012
- Country
- US
- State
- NJ
- City
- Dover
we are behind in getting equipment for als / paralysis.
i spent the first two years of this, researching and trying experimental treatments. my wife and i went to Thailand for 7 weeks chasing stuff. drove out to Colorado, spent 7 weeks there, chasing stem cell.
my body continued losing function. we realized, we need to get prepared, we may not stop this als.
we realized, we need to move. we lived in North Jersey, in a small, tight 2 floor Colonial. it would not accommodate a wheelchair, or much equipment. we decided to find a ranch house, not many of these in North Jersey; took some time.
we bought a ranch house, renovated it, moved, sold first house and in that time als kept busy also. i was unable to communicate for 9 months, till i got this tablet, a few months ago. i have enough paralysis to be bedridden since October.
we have been using a loaner chair, that does not tilt. we went for a wheelchair fitting yesterday at Hellen Hayes Hospital.
we were understandably told there is no way for me to control a power chair, therefore medicare will only cover a manual chair. unless we can justify to medicare, that my wife needs a power chair to move me around. i am about 140 pounds, so we can not use my weight as a reason for a power chair.
for folks that are fully paralyzed, how often do u use a wheelchair?
is / would a power chair be helpful?
might a manual chair make sense for us? it is very hilly, where we live.
i am guessing, that i will not use a chair much, since i can not control a power chair.
we will decide soon. input appreciated.
morning,
pat
i spent the first two years of this, researching and trying experimental treatments. my wife and i went to Thailand for 7 weeks chasing stuff. drove out to Colorado, spent 7 weeks there, chasing stem cell.
my body continued losing function. we realized, we need to get prepared, we may not stop this als.
we realized, we need to move. we lived in North Jersey, in a small, tight 2 floor Colonial. it would not accommodate a wheelchair, or much equipment. we decided to find a ranch house, not many of these in North Jersey; took some time.
we bought a ranch house, renovated it, moved, sold first house and in that time als kept busy also. i was unable to communicate for 9 months, till i got this tablet, a few months ago. i have enough paralysis to be bedridden since October.
we have been using a loaner chair, that does not tilt. we went for a wheelchair fitting yesterday at Hellen Hayes Hospital.
we were understandably told there is no way for me to control a power chair, therefore medicare will only cover a manual chair. unless we can justify to medicare, that my wife needs a power chair to move me around. i am about 140 pounds, so we can not use my weight as a reason for a power chair.
for folks that are fully paralyzed, how often do u use a wheelchair?
is / would a power chair be helpful?
might a manual chair make sense for us? it is very hilly, where we live.
i am guessing, that i will not use a chair much, since i can not control a power chair.
we will decide soon. input appreciated.
morning,
pat