Just found this site and decided to introduce myself. My disability is now dominating every part of my life and am struggling to deal with the existing medical system, maintaining my independence, creating a social life, staying positive and sane, and making the most of every resource But I am physically and mentally exhausted, tolerating symptoms throughout my body, and struggling to get through each day. I operate on sheer determination, ingenuity, and desire most days. But I need to ways find to make life easier so I don’t burn out or end up a shadow of myself.

I am a 58 year old guy, who has lived with a rare disease (Hereditary Spastic Paraplegia) since age 29. It originally affected my gait, balance, coordination, flexibility, etc. I was able to walk in a weaving foot dragging manner using a metal forearm crutch until 2006, when a major progression occurred. I began using a power chair and HSP began to affect my stomach and GI system and the level of neuropathy and spasticity increased. So I am living with constant aching, nausea, constipation, and fatigue (mental and physical). All these symptoms continue during the night, making my sleep very inadequate. There have been no effective treatments and I have ended up like a volley ball being passed form neurologist to various specialists and back again.

I live alone. I was widowed in ‘99 when my wife’s MS led to a septic infection. I am now separated from my second wife, who lives 300 mies away. My friends seem too busy with their own lives or don’t feel comfortable watching me lose my capabilities. So my social life has become very lacking.

I take care of my home, cook my own meals, drive reasonable distances, and usually have several projects underway. I stay busy and curious about everything. But there are numerous repairs that need to be made, which I can’t quite afford. I was desperate and stupid enough to become involved with a down-on-their-luck family that took financial advantage of me (disappearing when promised payment of a loan was due); so I am paying off a large credit card debt). I have enough to live on, but nothing extra. I am able to afford 2 hours of cleaning help each week. But that means not buying something else. So paying for other help is impossible.

I am about to begin a neuro rehab program at a local hospital to help me perform household tasks more easily particularly those involving my hands, since I now drop a dozen things a day, make a mess in the kitchen just stirring soup, and have to change clothes before I eat so all my shirts don’t end up with spots on them. I was told by the physiatrist that I am doing a great job of remaining independent, but really need daily assistance. If I were to injure myself and end up in a hospital, I would not be able to prove I could take care of myself at home and they would send me to a nursing home. So they are going to advise me on what my options are in order to avoid this. I probably need to set up a trust to avoid a Medicaid spend-down.

Sorry to ramble on. I am hoping to touch base with others who are disabled and trying to live productive lives. Sometimes, it is a matter of discussing symptoms and treatments. And sometimes, it is just offering support and realizing we aren’t alone in this struggle/adventure.
Hope to find others dealing with similar issues and that we can learn something from one another. Explaining life with a disability is like a foreign language to most people.

--- leftyjoe57 ---