Suzannah
Distinguished member
- Joined
- Mar 19, 2014
- Messages
- 132
- Reason
- DX MND
- Diagnosis
- 08/2014
- Country
- Uni
- State
- TEXAS
- City
- Deep in the Heart of
Hi all,
Well, as my title suggests, everything's really starting to catch up with me since being diagnosed with HSP last summer. For those who don't know, hereditary spastic paraplegia is a pure upper motor neuron disorder. HSP is not fatal, generally moves slowly and mostly affects the legs. I was (and still am) profoundly grateful that this was the diagnosis. It's kind of the "least worst choice" of the motor neuron disorders, I suppose.
I've suspected for quite a while that I might lose the ability to walk at some point, and I had somewhat reasonably come to terms with that. I knew I could still live independently, keep playing sports, keep running my business, etc.
But now things are moving very quickly, and I am having major symptoms and spasticity in my hands and arms as well as my legs. My hands are starting to be closed into fists almost all the time, my fine motor skills are terrible, and my arms are starting to draw in towards my chest. This changes everything.
Suddenly, I am terrified of the future. I just turned 36 last week, and all my friends are having babies or raising families or training for insane triathlons. And I am single, without any kids or a partner, worrying about how long I can safely live independently in my 2nd story unit, and whether or not I'll still be able to walk by the time I turn 37 next year.
HSP is not fatal, and people in my family tend to live a long time. The thought of 30, 40, 50 more years of decline and disability is pretty horrifying. Lately, I've starting having these little mini panic attacks, these moments of terror where it all hits at once and I end up bursting into tears. I feel terrible even admitting that, because I know that virtually everyone on the ALS board would give anything for more time. (My sincere apologies if I offend anybody with this post).
I guess maybe I'm just now hitting the grief stage ....
Thanks for listening.
Suzannah
Well, as my title suggests, everything's really starting to catch up with me since being diagnosed with HSP last summer. For those who don't know, hereditary spastic paraplegia is a pure upper motor neuron disorder. HSP is not fatal, generally moves slowly and mostly affects the legs. I was (and still am) profoundly grateful that this was the diagnosis. It's kind of the "least worst choice" of the motor neuron disorders, I suppose.
I've suspected for quite a while that I might lose the ability to walk at some point, and I had somewhat reasonably come to terms with that. I knew I could still live independently, keep playing sports, keep running my business, etc.
But now things are moving very quickly, and I am having major symptoms and spasticity in my hands and arms as well as my legs. My hands are starting to be closed into fists almost all the time, my fine motor skills are terrible, and my arms are starting to draw in towards my chest. This changes everything.
Suddenly, I am terrified of the future. I just turned 36 last week, and all my friends are having babies or raising families or training for insane triathlons. And I am single, without any kids or a partner, worrying about how long I can safely live independently in my 2nd story unit, and whether or not I'll still be able to walk by the time I turn 37 next year.
HSP is not fatal, and people in my family tend to live a long time. The thought of 30, 40, 50 more years of decline and disability is pretty horrifying. Lately, I've starting having these little mini panic attacks, these moments of terror where it all hits at once and I end up bursting into tears. I feel terrible even admitting that, because I know that virtually everyone on the ALS board would give anything for more time. (My sincere apologies if I offend anybody with this post).
I guess maybe I'm just now hitting the grief stage ....
Thanks for listening.
Suzannah