Long Intro - Lots to deal with
 

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 ---

Greetings!!
 

Dear Leftyjoe
 

Hello, and welcome to Neuro Talk. I am sorry to hear how hard things have become for you. You do need help, and there has to be some service offerered in your community.
I have to say something about a trust. My parents set up a trust for me with a lawyer, as they knew I was sick. Unfortunately the lawyer didn't have knowledge of medicare/medicaid law. No matter what the trust said in regard to not spending my trust for medical issues, the state forced me to spend it before I was given any help at all. My parents should have given all resources to my son, outright with no trust involved at all. I had 9 surgeries that effectively brought me into poverty, with medical bills. What two generations saved for was gone, and I was heartbroken. My own finances, my own earthly earnings were in the trust too.
Please make sure if you do the trust, your lawyer has adequate knowledge of the laws involved.
Neuro Talk, will help support you emotionally. I will be here to listen anytime.
My son is a OPT, and works in an assisted living home. I hope you do all you can to try not to have to go into one. However, that is not always bad, depending on the facility. The one my son works in is awsome, and so is the staff. He sees alot of people, that learn more skills, and then get to return home. I wish you all the best, and I will keep you in my thoughts and prayers. ginnie:hug:

Thanks
 

Ginnie,

I really appreciate your concern. I will make sure I have a lawyer experienced in this area. I have done some research myself and know the right questions to ask. The weird thing is that all the articles assume the trust isfor a disabled child or aging parent, as if no disabled person ever worked hard and invested their own money. I saved this money to create a safety net and aloow me to expand my life when my disease progressed. But it has progressed much faster and attacked parts of my body I did not expect. So I am trying to make the best of a difficult situation. I am the youngest child and did not have kids because my disease is hereditary. So there's no one able to help me on a regular basis.

I am too independent and stubborn to go to a home. I don't want others making decisions for me. I am still able to do most things, though it is much harder and I feel sicker. I will probably need a PCA or similar helper, though it would really be a matter of following me around and getting what I need at the time. But I don't need nursing. And I don't want to have to spend my last dime in order to get the help I need.

I learned today that there is a waiting list for the rehab program. And an evaluation has to be done before any treatment begins. But I do get the impression they will be focusing on quality of life issues. Most doctors just tell me my symptoms are caused by my nervous system (like this is news to me) and they have no treatment.

Your situation sounds awful. Having 9 surgeries and ending up broke is more than anyone should bear. I hope you at least have reached a stable level physically. I am hoping I can connect with other disabled folks here and offer ideas when I can.

---- Joe ----

Hi Joe
 

Keep on trucking and being independant. I wish you were in my neck of the woods, I know my son would have helped you at home.
Thank you for your concern about what happened to me with my own financial situation. I now get SS and SSDI. Not much, but enough to stay stable. No insurance on my home however, and that is a concern, considering where I live. That was what the trust was for, for taxes and insurances.
I hope you can get the help to decide how to handle your finances. Just be careful, and know that our system isn't always fair.
I understand about not having kids. My son chose not to as well, as I have multipal things wrong, and he already had thyroid cancer in his thirties. That was a tough choice for him too and he lost a real close person to him over it.
You made the right call not to pass down the genetics.

Sorry life is hard for you. It is for me too at times. I came here a few years ago in bad shape. I found alot of people willing to listen to me and help. Never left the site, these people are now friends.

What is the hardest issue for you regarding your life at home? Sure wish all this health stuff didn't happen to really good folks. Seems that life really does give lemons at times. Keep in touch. ginnie