I've been astonished at the response to my request for help so I can
acquire the needed items to learn HTML and programming so I may help in the support of my family after being diagnosed with the rare disease SYRINGOMYELIA (sah-ringo-my-e-lee-ah). 10 operations on my spine in 3 years have left me bed and wheelchair ridden. However the last 2 years have stabilized enough that I can spend up to 8 hours a day in front of my Mac.
Syringomyelia is a rare progressive spinal cord disease affecting only 1/10 of 1% of our population. Talk about rare! I've been able to speak with only one other person that KNOWS what I'm going though. She has had only 3 operations though and couldn't IMAGINE having 10. I feel blessed to have spoken with her.
The disease can be from trauma to the spine OR from a birth defect. In a case of trauma to the spine, the disease normally presents itself within 3 to 8 years following. Such as say, a motorcycle accident. In my case however, we believe it happened at birth, not from a defect, but from being dropped in the operating room and having broken my neck at that point. The thinking is, because I have a broken neck BUT have never been in a accident where it could have happened.
The disease forms syrinx's or "pockets" in the canal in the spine that carries the spinal fluid from the brain down to the tip of the spine where it is dispersed into the body tissue. These pockets hold some of the fluid and "swell" and causes the spine, which has your nerve fibers as a casing on the outside, and pushes against the interior of the vertebra, causing loss of sensation to parts of the body. When the syrinx is in the upper part of your spine you lose sensation and muscle control on the top 1/2 of your body, and lower, the lower 1/2. I have multiples in both areas. Each being replaced many times.
The choice is to operate and attach a "one-way" valve to the spine, (a delicate deal) and siphon off to another body cavity (heart, lung, stomach etc. I have all the above) thus helping to alleviate more loss of sensation, or just not to operate and just continue to deuterate. These very simple valves simply either don't work immediately or just stop functioning shortly there after or once in a while one just refuses to quit. You would think you could get a answer as to why? But you can't. There are no guarantee's in this business. You must first decide to take the chance of death, complete paralyzation, loss of bodily functions and anything else bad you could possibly think up, have the operation go through rehab then turn around and make the decisions all over again, 9 more times. All in a period of 3 years. Each time losing in the nerve re-generation department. Once you cut the spine your nerve use factor goes say to zero (0). The with rehab, nerves try to regain lost function, but unfortunately only at 1 cm (or is that 1 mm? In any case, minute.) per week. That's per WEEK folks. And then only to a indeterminate level. Are you still with me?
I'm at a level where I can still control my body functions (albeit in bed, but VERY important to me) and can transfer to my electric wheelchair with the help of my wife Donna and spend 8 to 10 hours a day at my beloved Mac on the Internet, then it's back to bed when Donna is home to help. A very delicate situation being alone all day in my condition but unfortunately we have no other choice. The twice a week in home insurance care STOPS after SIX WEEKS. (Maybe your suppose to DIE before that time. Forgive me but it's true) Don't get me started because what the government puts you through BEFORE you get $1 in disability is 1-1/2 to 2 YEARS of NOTHING. Basically using EVERY available $1 they can squeeze from your assets leaving you with $0 (they are no dummies) and hopefully your home. Although it's difficult to just pay taxes. Without family help the house would have been sold just to pay taxes. You make it but can't help and wonder how some people can.............Makes you feel bad that you where you are and wondering where they are. BAD!
This is a HIGH LEVEL pain disease. I'm on a low level controlled substance pain program.This may sound bad to some of you, I know it did to me because I have NEVER, ever done any of that. But believe me when I say, when taken with the proper reason in mind this is not a bad thing nor addictive. And as proof in that regard I point to although it is easily available to increase my dosage by simply asking, I have not in over 3 years. Dr.'s say it's unusual. To me it's just something I've always had do, going through life with a paralyzed left arm. You know, a freak, a one arm bandit, among other things. Believe it or not things are said a lot uglier than those. Kids can be cruel, adults can be ugly.
Basically paralyzed from the neck down, I do have 25% use of my right arm. That thank god allows me to type and function on the computer. I have a Lucite removable tray that attaches to the front of my chair. And my chair. It just rolls off my tongue. But believe you me you've got to FIGHT for EVERYTHING you get. Don't accept no the first 12 times from the insurance companies. Keep getting another person to talk to. Keep records. Be persistent. If it's not your nature, you better change and NOW! Without it your done. History. Toast. Stick a fork in you, your DONE!
Through the continued support of my MacHead's™ (named for purchasers of my so named bookmarks available on-line at MacWorld, MIT's INFOMAC and others) by paying the SHAREWARE fee for the bookmarks, my dream is going to come about slowly but surely.
Mac people are the GREATEST! They prove it to me every day in envelopes I get in the mail and the inspiring email's. God bless ALL of you.
And lastly I want to mention my wife Donna. She never signed on for all this stuff 35 years ago when she married me. But without her I can't imagine ANY success. I OWE it ALL to her. She does it all for me and still finds time to work. In my eyes she's the miracle. And the beat goes on................
