Fundamentally I am a healthy person. I do not go to the doctor’s much. Yearly for the Pap smear is my regular trip to the doctor’s office. I don’t eat flour or sugar and have maintained a 100+ Weight loss since my mid 20’s. I have to admit I have struggled with my weight. I have had my ups and downs over the years. I would love to drop that final 20 pounds all from my stomach. I do smoke which I know is bad but hard to let go.
So I sound like the average person right? No one can look at me and know I have a Dopamine Deficiency. I have been on medication since I was 19 years old. I haven’t seen a neurologist in years. I have my medical records for any new primary doctor changes. I will bring my records and they will full my prescription with no issues.
This affliction I have been blessed first revealed itself in the fifth grade. My handwriting started to go downhill. My teacher from the fourth grade was never consulted and they thought I had special needs. They tested me and I tested so far beyond my grade level they could not keep me in special education classes. They chalked it up to bad handwriting. My struggles continued and worsened with age. My parents not hands on at all nothing was done about it. I brought home good grades and my handwriting the initial signal that something was wrong was ignored. When I reached high school my hand had a severe tremor. My grandmother bought me a word processor (well before the Personal Computer age) due to all the complaint letters that came from my teachers. There was still no inquiry to what was the real problem. I decided to do something about this on my own, noticing that the tremors were getting worse.
I went to see a neurologist. I was told I had tremors. I had a MRI done they found no abnormalities. I was given a series of medicine that did nothing for me. With each medication was a series of side effects. I couldn’t handle being a Ginny pig any longer. Still very little family evolvement and I went to my doctor’s appointments alone. I made all the decisions and the doctor never seemed to question that even thought I was not at legal age. I asked him will this condition kill me. He said “No”. I told him I was done and no longer wanted to do this.
I proceeded to college where my condition has gotten a lot worse. Now it affected the way I walked. A child asked me if one of my legs were longer than the other. I couldn’t do anything that took precision. I couldn’t put an earring in my ear. I couldn’t carry a cup without dropping the contents. I knew things were getting out of control but I ignored it and accepted I could do nothing about it. I had guys ask me if I had epilepsy. I had no knowledge of my condition and had no idea how to answer the question. I didn’t have seizures so I ruled that out.
I went to a regular doctor’s appointment at the school health clinic. I had my own insurance through my college. When I got into the doctor’s office ready to get my annual Pap smear the doctor told me the nurse had concerns about me. I guess she was watching me when I came into the office. She wanted him to watch the way I walked. Then he did a few cognitive tests. Then he told me he thought I had Parkinson’s disease. I had no idea what that was. This was years before Mohamed Ali and Michael J Fox made this disease national known. I went to my dorm room with this news and started to do some research. I was convinced I was going to die. I called my mom in uncontrollable tears of my appending death. I was given a referral to a Parkinson disease specialist. It was ironic he shared a practice with the same doctor who said I had tremors years earlier.
I went to my appointment and sat in the waiting room with a bunch of elderly people who were shaking uncontrollable. I broke down in tears. Sobbing, snotty crying tears in the waiting room. When the doctor finally saw me he embraced me and consoled me like a father. My parents absent as usual, I stand there alone. After I have calmed down he did the same test the prior doctor had done. He informed me I did not have Parkinson’s disease. I finally stopped feeling my heart beat. He did put me on a Parkinson’s disease medication. After a week of the medicine all my symptoms went away. It was a miracle as far as I was concerned. I finally felt free from this issue. After a few visits I was told I have a Dopamine Deficiency.
How has this affected my life? Well after the medication 25/100 Carbidopa/Levodopa that I take every day. I was free of my affliction. Everything was good until I asked a question that did not have any importance in my life at 19. I asked if I had a child would this drug give my child birth defects. I was given conflicting answers from different doctors. One doctor said it should not be a problem. Another doctor opinion is I would have to get off the medication because it is a class C drug. It was known to give rats birth defects. There is not much research on the subject because the people who take this medication are well beyond baby making years.
Wow news I was not expecting. I have no idea what not taking this medication will do to me. I know if I miss one day my symptoms begin to come back.
I have not met anyone else with affliction. I guess I could use the World Wide Web to connect. I don’t know if I am ready for answers to my questions.
What is the future of my disease? Has anyone had children with this disease? I cannot make the connections until I am ready for the answers. So that is where I leave it!!!