miércoles, 31 de julio de 2013

A Newfound Discovery After 30 years - Hereditary Spastic Paraplegia (HSP) community - RareConnect

A Newfound Discovery After 30 years - Hereditary Spastic Paraplegia (HSP) community - RareConnect

Online Communities For Rare Disease Patients

Hereditary Spastic Paraplegia: a new discovery after 30 years of living with the disease … and learning more every day 

A Newfound Discovery After 30 years

I have learned more in the past 9 months about HSP than I have in the past 30 years. I am originally from VA where there was limited information available to me. I relocated to Massachusetts and it has been like a whole new world opened up.
Written by quenalyne, published 9 days ago.
I have gathered that the condition was inherited from my grandfather's side of the family. I only met him directly not other members of his family except for his sister. I saw in her late years how she was too affected. I do not know the original story. Folks in the family just lived with what was dealt to them. I had reconstructive surgery when I was 12yrs old. I have 2 stainless steel screws in both my ankles. I have had muscle tissue removed from my rightside thigh to put in my right leg calf. I have continual spasms in my legs. It has become true that continual exercise does the trick to relieve me. I do not take any medications nor do I use a walker or cane. I recently started PT after having my 1st son. I have been experiencing AFO with custom made orthotic inserts. It feels better but it ultimately doesnt change the image of how I walk. I dont think it ever will. I have had such an issue with embracing regular exercising. I have handled myself from childhood with a "Mind over Matter" mentality...that approach doesnt work as your body gets older and starts to work against you...and in me special case I am already at a disadvantage. Still a work in progress.....
In other areas of my life, I am a devout Mormon. I have been married for 5 years. I have a 9 month old son, named Noah. I have 10yr+ career in Higher Education. I currently work at a community college in Massachusetts. I love what I do.

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