Hereditary Spastic Paraparesis

By sirbear62

1 min read

The Marine Corps found the disease in 1986. Sent me home and would not tell me why. The disease came on July 2012. A rare disease that no doctors know much about it. Losing my legs with no YMCA till next week. Use a walker for mobility. Came in at 49 years old. 58 now.

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Lori Foster Member
Hi <inline-mention user-id="4084563" username="sirbear62"/> . I am sorry you are dealing with this. It must be difficult when so few people share your disorder. Have you found anyone else on social media or near you? I hope the YMCA reopens soon so you are able to get back to your exercises. If not, can you ask your doctor for a referral to physical therapy? My heart goes out to you! – Lori, <a href='https://multiplesclerosis.net' target='_blank'>MultipleSclerosis.net</a>, Team Member
sirbear62 Member
My Neurologist quit doing Botox injections in my legs and can't get approved for another Neurologist yet. Last injections 01/20/2021. Supposed to be every 72 days. Can't drive anymore.
1. kayleighhill Community Admin
 <inline-mention username="sirbear62" user-id="4084563"/> That's got to be really frustrating waiting on that approval. Has you doctor discussed anything you could try at home until your approval goes through and the YMCA opens back up like Lori mentioned with physical therapy? Sending out warm wishes your way sirbear62. Kayleigh, <a href='https://multiplesclerosis.net' target='_blank'>MultipleSclerosis.net</a> team
sirbear62 Member
My YMCA is open but with no Neurologist for 6 months I can't drive my car. No help for the conversion for hand controls for my car in the Spokane Washington area. Golden West mobility quoted me$2995.00 to install. Need help.
1. Lori Foster Member
 That's crazy, <inline-mention username="sirbear62" user-id="4084563"/>! Have you ever heard of the The National MS Society's MS Navigator Program? They might be able to help. Here is a link: <a href='https://www.nationalmssociety.org/Resources-Support/Find-Support/Ask-an-MS-Navigator' target='_blank' rel='noopener noreferrer ugc'>https://www.nationalmssociety.org/Resources-Support/Find-Support/Ask-an-MS-Navigator</a>. You might want to call around to different mechanics in the area. If you buy the equipment on your own, an experienced mechanic should be able to install it. It's pretty easy. The problem lies with learning how to drive with hand controls. You can teach yourself if you have an open and safe area to practice in and someone with you who can help is something goes wrong. I hope this helps. Best wishes! - Lori (Team Member)