Tokahfang
Moderator emeritus
- Joined
- Jan 31, 2010
- Messages
- 791
- Diagnosis
- 07/2009
- Country
- US
- State
- VA
- City
- Richmond
Hello!
I have come to this place by a circuitous route, but I hope you won't mind the intrusion. I started a mostly typical course of sporadic (no family history, didn't get genetically tested for cost's sake) HSP in 1994ish. I had hand involvement, but that is part of a few variants. Years of insidious progression did their thing, and I was a full time manual wheeler by 2006. Being freed from using all of my energy to try and keep my walking gave me life itself back, and I got to spend several years as a wheelchairing outdoors enthusiast. The beginning of 2009 brought a sharp increase in progression, and then in the end of October it took a huge dive far deeper than even complicated HSP goes.
Right now I'm bedridden due to not having enough trunk strength to sit up independently and am waiting on a powerchair. Holding my head up is tough, and swallowing difficulties have set in. Weirdest yet, my reflexes have become asymmetric. I found a good specialized neuro and he is still working out exactly where that puts me.
Since I first accepted I was permanently disabled, I have been plugged into the online community and have very much benefitted from the moral support, sharing of coping strategies, etc. I am still trying to contribute to the paraplegia communities I belong to, but my needs and challenges are of a different order of magnitude these days. I have been lurking here, holding off joining in until I'm formally diagnosed, but the the wealth of resources here has overwhelmed my reticence with sheer gratitude! Discovering Dasher alone would be worth a "Thank you!", as in mere days it has fully restored the writing voice that hand weakness stole. To find discussions of blended food recipes and a virtual panoply of other advice for someone of my function level has been a great source of hope that my family can make it through this.
I have come to this place by a circuitous route, but I hope you won't mind the intrusion. I started a mostly typical course of sporadic (no family history, didn't get genetically tested for cost's sake) HSP in 1994ish. I had hand involvement, but that is part of a few variants. Years of insidious progression did their thing, and I was a full time manual wheeler by 2006. Being freed from using all of my energy to try and keep my walking gave me life itself back, and I got to spend several years as a wheelchairing outdoors enthusiast. The beginning of 2009 brought a sharp increase in progression, and then in the end of October it took a huge dive far deeper than even complicated HSP goes.
Right now I'm bedridden due to not having enough trunk strength to sit up independently and am waiting on a powerchair. Holding my head up is tough, and swallowing difficulties have set in. Weirdest yet, my reflexes have become asymmetric. I found a good specialized neuro and he is still working out exactly where that puts me.
Since I first accepted I was permanently disabled, I have been plugged into the online community and have very much benefitted from the moral support, sharing of coping strategies, etc. I am still trying to contribute to the paraplegia communities I belong to, but my needs and challenges are of a different order of magnitude these days. I have been lurking here, holding off joining in until I'm formally diagnosed, but the the wealth of resources here has overwhelmed my reticence with sheer gratitude! Discovering Dasher alone would be worth a "Thank you!", as in mere days it has fully restored the writing voice that hand weakness stole. To find discussions of blended food recipes and a virtual panoply of other advice for someone of my function level has been a great source of hope that my family can make it through this.
