Stephanie52218
Member
- Joined
- May 22, 2018
- Messages
- 10
- Reason
- PALS
- Diagnosis
- 12/2015
- Country
- US
- State
- NY
- City
- Poughkeepsie
Hello to everyone, this is my first post, after spending a lot of time browsing the forums. It seems like a very supportive place.
I've noticed in these groups as well as in the local ALSA support group we go to, that some people are dealing with the stress and demands of a fairly rapid progression: that is, in 3 - 4 months, going from ambulatory to powered wheelchair. Big changes in a short time.
On the other hand, I have had symptoms since 2006 and began with foot drop in 2010. Although formally diagnosed in 12/15 it was mostly my procrastinating about it--my neurologist had urged my going to a specialist who'd make the diagnosis since 2011. Although symptoms have now spread to both arms and both legs, I can walk and I drive (with a modification to the car), go to work and APPEAR almost normal to the casual observer, especially if they don't see me walking much. What's happening to me is upsetting and frightening, as for everyone else, but in a different way, I guess. Varying degrees of dread and anxiety about the future spread over many years, while gradually losing the ability to do most of the things I enjoy. Lots of strangers asking if I hurt my leg, etc.
I have some issues and concerns that are totally different from those people who are struggling with a more rapid rate of change. I feel hesitant to even bring up some of these things, when other people have it so much worse. One thing I have some choice about is whether to move out of my house which is not ideal in terms of accessibility--and if so, what type of dwelling--house, apartment, CCRC?
I wonder if there are others with the same very slow progression, and if so, what are your primary concerns?
Thanks for any input!
I've noticed in these groups as well as in the local ALSA support group we go to, that some people are dealing with the stress and demands of a fairly rapid progression: that is, in 3 - 4 months, going from ambulatory to powered wheelchair. Big changes in a short time.
On the other hand, I have had symptoms since 2006 and began with foot drop in 2010. Although formally diagnosed in 12/15 it was mostly my procrastinating about it--my neurologist had urged my going to a specialist who'd make the diagnosis since 2011. Although symptoms have now spread to both arms and both legs, I can walk and I drive (with a modification to the car), go to work and APPEAR almost normal to the casual observer, especially if they don't see me walking much. What's happening to me is upsetting and frightening, as for everyone else, but in a different way, I guess. Varying degrees of dread and anxiety about the future spread over many years, while gradually losing the ability to do most of the things I enjoy. Lots of strangers asking if I hurt my leg, etc.
I have some issues and concerns that are totally different from those people who are struggling with a more rapid rate of change. I feel hesitant to even bring up some of these things, when other people have it so much worse. One thing I have some choice about is whether to move out of my house which is not ideal in terms of accessibility--and if so, what type of dwelling--house, apartment, CCRC?
I wonder if there are others with the same very slow progression, and if so, what are your primary concerns?
Thanks for any input!