Tuesday, March 14, 2006

A clear end for the day

It’s a downhill slide. Both ears are ringing and I am running pretty slow. Tried to publish a picture on the blog but it wouldn’t work. Then I tried to find help in the blogger stuff but just got confused. The more I tried the more confused I got. Right now I would guess I am down to a 3 on the Bob scale. My typing speed is pretty slow. The migraine is still there but not as bad. It’s hard to tell just how slow I am until I have to talk with someone. That brings it out. I think I will go back to bed now. This sucks.

8:00 – I am doing just fine. I hate it when I lose a whole day. Now I am running at an 8 on the Bob scale. I wish I could arrange the slow times to happen late in the day instead of right in the middle of it. I am going to write Wayne’s story now. Never got to it before.

We had hamburgers for dinner. I mixed jalapeños in mine. Good for the cholesterol. After that I made oatmeal cookies with chocolate chips, raisons, and pecans. Too good and too rich which will make us too fat. But we’re having fun getting there. I got Cherie laughing so hard she spewed the mini marshmallows she was eating all over. Yeah I did it on purpose. Caught her right after she had a mouthful and started acting like a fool. It works every time cause I got the acting like a fool thing down pat. Nothing like a lifetime of practice, of course now I do it for fun but before I did it cause I was an idiot.

It is 11:00 at night now. Of course my mind is awake and active. Go figure. I explored some of the traces from hits on this blog and found a blog called “Grits with breakfast”. Cool stuff. I like this guy and he is involved in some issues near to my heart such as prison reform and many other areas where the government needs someone with a flashlight uncovering what they want to keep hidden. I just finished the first draft of the paper I transcribed for Wayne. This will hopefully be taken to the M.S. national office and help them develop policy for their future. This is just the first draft so it will go through revisions. I’m open to suggestions. Hell I’m always open for any input.

My life with Multiple Sclerosis
By Wayne Schmitz

When I was first diagnosed with M.S. I didn’t know a thing about this disease. I didn’t think it would change my life too much. Boy was I wrong.
I’ve worked hard all my life. As a young man I was in the army during the Vietnam war. After that I went into the steel working trade, welding and pipe fitting in the ship yards and then in an iron foundry. When that plant shut down I went to school and became a truck driver. I was doing good in life, or at least I thought so. The trucking job came to an end so I took a position as a security guard till something else opened up. This was in 1996.
After a ten hour shift I was worn out. My but, tailbone, and lower back were all killing me so I figured a good scalding hot shower would help. I turned the pulsating shower head on and let the heat soak into my muscles. That’s when it happened. My legs went numb and just died and I collapsed in the shower. I yelled for my son and he came in with his girlfriend. She was a nurse at St. Vincent’s hospital. At her insistence I went to the hospital. I really didn’t want to because I always took care of my problems and would just tough things out.
After three or four days of testing they gave me a spinal tap. That was when Dr. Mareska, the neurologist, told me I had Multiple Sclerosis. It really didn’t register. I’ve heard about it but didn’t have a clue what it was and meant. I kept on working and things didn’t really change for about six years. Walking long distances was getting harder and after a while even short distances took a bit out of me. This made my job tough because as a security guard in a large refinery my hourly route required walking a pretty good distance.
It became known I was diagnosed with M.S. and the security company began writing me up for offenses I never committed. These were used to justify firing me. I didn’t think it would be hard to get another job but I was wrong. I wouldn’t lie on my applications and frankly didn’t understand the stigma that came with having this disease. I found that I could no longer drive truck because of M.S.
It didn’t matter how many applications I put in for work, regardless of what the job was. No one was going to hire me, I think because of the potential impact it would have on their health insurance but I don’t really know. All I know is I was losing everything at an increasing pace. Walking was getting harder, my savings were eaten up as I struggled to hold on, and it seemed harder for me to think and remember.
I had to park my car in front of my son’s place because I couldn’t afford to get the plates renewed. I put what I valued most in it because I couldn’t even afford to pay for a storage unit. That included things like pictures and records that can’t be replaced along with most of my clothes. I had talked to the landlord and he agreed to give me time to move my stuff out of the apartment because I still had time left on the month.
I called the MS Society for help and was told they could only give me a small, one time financial assistance and that was it. I came home to find that all my furniture had been moved out to the street and everyone was going through it, taking what they wanted. My car had been towed for the expired plates and was sold. I was unable to recover the personal possessions that had been stored inside it. Now I was homeless and destitute, with only the clothes on my back.
I made it to St. Paul’s homeless shelter where I met Bob Westbrook, who was to become a good friend and more. He too was homeless due to a brain injury and a resulting memory loss. He had been learning how to do basic things like ride the bus and, more importantly how to access the government agencies that are set up to help those who were in dire straits.
Bob worked to get the Veterans Administration motivated by filing grievances and acting as an advocate. He showed me how to take the bus to places I needed to go and then got me approved for Section 8 housing. This got me out of the homeless shelters, which were not the safest environments. Then he took me to Family Services and got me approved for food stamps. Through his efforts and because of his ability to write I learned there was a program that would pay me $115 a month while waiting for my Social Security Disability to be approved.
That is another area Bob has been working hard on. Much of this I didn’t have a clue about and was just living from day to day, happy to get food and a bed to sleep in. Without his guidance I would still be in the homeless shelters, unaware of what was available to me. We are now on our third year fighting to get my disability. The doctors that Social Security sent me to see, who were to verify I had MS and was disabled, never bothered to even send in any paperwork on me. Thus I was denied again and again. I am sure that these doctors, who work for the DDS program funded by the Federal government but administered by the state of Ohio through the Ohio Rehabilitation Commission, got paid for seeing me. Evidently there is no oversight to insure they do what they are paid to do. And people like me are the victims of this corruption.
It’s been a hard struggle but I don’t give up easily, I never will. I fight the pains of M.S. everyday, both physically and mentally. My M.S. has slowly been getting aggressive but like I said I’m not giving up.

I am transcribing this for Wayne. The next two pages were a description of his physical and mental condition. I thought it would help to sum it up here. Wayne has Primary Progressive Multiple Scleroses. His pain level is fairly high and mobility is limited to the point where a walk through the grocery store stretches his limits. He requires a walker to get around. His cognizance is not too bad though he has difficulty maintaining a train of thought. The short term memory is an increasing problem that I am teaching him methods to compensate for.
I would like to say that what Wayne needed the most at the start of this ordeal was simple guidance and advice. This would have prevented his loss of everything and helped him navigate the maze of bureaucracy that can confuse anyone much less someone experiencing the pain and mental confusion Wayne has. I will put his last four sentences just as he wrote them. Bob Westbrook.

It’s like your looking for help but you don’t know where to go. You have to rely on others because you can’t remember what to do. God please keep helping me. You ever feel like you’re screaming for help but no one listens to you.
(signed) Wayne Schmitz Sr.

I suppose that should do it. Cherie has gone to bed and I should also but I like to take advantage of these moments of mental clarity because I never know how long they will last. It is what I call “Prime time”. I lost much of the day and that always frustrates me.

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