Trauma trigger warning: This story discusses suicide, suicide ideation, and the aftermath of a suicide attempt resulting in carbon monoxide-induced Parkinsonism, and some people may find it disturbing. If you or someone you know is suicidal, please, go to your local ER or call the suicide prevention hotline in your country. For the United States, the numbers are as follows: The National Suicide Prevention Lifeline at 800-273-TALK (8255), or message the Crisis Text Line at 741741. Both programs provide free and confidential support 24/7.
Mine is a very unique story. You're probably saying "Oh, here we go, another very late or early diagnosis." Nope. My story should go viral within the P.D community.
I was 18, and I felt like I wanted to die. A strange psychological illness, which is a great piece of literature in itself, had haunted me for three years. On the morning of October 31st, 1988, I decided that I had been through enough. I went out to my car in the driveway, pulled it into the garage, closed the door behind me and lay down in the back seat to die.
Carbon monoxide-induced Parkinsonism
My mother found me unconscious but heart still beating about three hours later. Rushed to the nearest hospital with a hyperbaric chamber, I was all but given up for dead. Four days later I woke up from coma to a new, horrible, reality. Scans of my brain showed that I had incurred bilateral lesions to globus pallidus interna and externa. This left me in a state of atypical end stage Parkinson's. There was no tremor, but I was incredibly rigid and spastic. I couldn't eat, speak, walk, or do any of my ADLs. The next two months were spent in the rehab unit of the hospital. I was incompletely rehabilitated and sent home where my mom (a nurse) would take care of me.
Over the course of the next two or three years, I gradually improved to the point where I was able to walk and even run a little. I was educated at the University of Wisconsin-Milwaukee, where I graduated with honors in Marketing for about five years after the brain damage. "Hurray, you succeeded!" Not quite. Most people with CO induced Parkinsonism are expected to recover completely. Mine was not the classic case, however, and the years since I graduated have seen a slow decline in function, with a number of ebbs and flows, peaks and valleys. One thing is obvious: I am constantly getting worse. Weakness, fatigue, and inability to take two steps by myself have made me start crawling to get around my house. The pain is so intense sometimes I just want to scream.
Strength in impossible situations
There is a little good news here for the diehard optimist. In December of 1999, I convinced a beautiful woman to marry me, we were able to have a daughter together and she recently gave birth to my grandson. Now to put a damper on that - my wife was diagnosed with Rheumatoid arthritis in 2003, and now is almost as disabled as I am. We live with her mother. The point of the story is not "Don't try to kill yourself by carbon monoxide poisoning," not even " Don't try to kill yourself." I guess what I am trying to say is that you will be given the strength to make it through whatever life throws at you, even if that is a seemingly impossible situation. I am now 50 years old. I have been in this state of permanent Parkinson's for 32 years. I don't think I have a lot of time left here, but it has been a hell of a ride, literally.
Do you live with any sleep disorders (eg. insomnia, RLS, sleep apnea) in addition to PD?