George & Norma J.
George:
I was thirty-six when I was diagnosed. Twenty-two years ago. It destroyed my family.
When I came home from the doctor, I told my wife that I had Parkinson's and the first thing out of her mouth was “now what am I going to do?” That destroyed me. It was not “what are we going to do?” She didn't want anything to do with me.
She was more worried about how to support four kids on her salary as a nurse. It shot our future and our relationship. I had to take care of myself.
I've taken every medication ever designed for Parkinson's, some of which had some very serious side effects. The worst one almost cost me my freedom. I was doing drugs and drinking and trying to hide the symptoms of Parkinson's in a failing marriage. The meds were feeding me all kinds of brain chemicals. Emotions, one on top of another. It was hard to clarify anything, nothing was clear. Everything was compulsive. I barely survived that. I lived on the streets for two years.
Then my social security finally came through and I slowly got myself back on my feet, I meet Norma online and things brightened up after that considerably.
Norma:
I was forty-three when I was diagnosed. I had crunching in my toes. One would bend down and I couldn't unbend it so I couldn't walk.
I'd have to stop what I was doing and sometimes I even sat in the street because I couldn't walk. As it progressed, my whole body crunched up and then I couldn't do anything at all. I couldn't even walk to the bathroom.
George:
She would get these full body crunches. They're called dystonia. She would curl up in a fetal position. The pain would last for hours and nobody knew what it was or what they could do about it.
Norma:
I had trouble with the same med that George did. It cost both of us our first marriages really. I didn't realize that my behavior was compulsive but I was drinking too much and spending too much and had sexual side effects. I became a totally different person. My first husband had health problems too so there wasn't enough energy leftover after I cared for him to take care of myself.
George and I have a different relationship because we are equally patient and caregiver.
George:
Our relationship is wonderful. We both have Parkinson's and have somebody who knows what the other one is dealing with and has compassion for it. Really saved my life.
Norma:
When, the medication was really making me crazy and I couldn't sleep I'd get up in the middle of the night and drive around and get completely lost. I'd call George and he'd come and get me. If it wasn't for the DBS surgery we both would probably be in nursing homes right now or in some kind of living facility but as of now, we're still living independently.
George:
I really consider Parkinson's a gift in a way. It sounds weird.
It forced me to make some changes in my life and think of myself as somebody surviving Parkinson's and to make an impact. It’s my legacy so to speak. I want to make an impact in the Parkinson's community. We started a support group ten years ago and we've met thousands of people with Parkinson's who share their stories. What we've done is bring together a group of people to share information and share common experiences.
Norma:
It's rare for me not to feel anxious with people. But I don't really get anxious with the people from the Parkinson's group. It doesn't matter how we are in the group because everybody gets the same way at times.
I was thirty-six when I was diagnosed. Twenty-two years ago. It destroyed my family.
When I came home from the doctor, I told my wife that I had Parkinson's and the first thing out of her mouth was “now what am I going to do?” That destroyed me. It was not “what are we going to do?” She didn't want anything to do with me.
She was more worried about how to support four kids on her salary as a nurse. It shot our future and our relationship. I had to take care of myself.
I've taken every medication ever designed for Parkinson's, some of which had some very serious side effects. The worst one almost cost me my freedom. I was doing drugs and drinking and trying to hide the symptoms of Parkinson's in a failing marriage. The meds were feeding me all kinds of brain chemicals. Emotions, one on top of another. It was hard to clarify anything, nothing was clear. Everything was compulsive. I barely survived that. I lived on the streets for two years.
Then my social security finally came through and I slowly got myself back on my feet, I meet Norma online and things brightened up after that considerably.
Norma:
I was forty-three when I was diagnosed. I had crunching in my toes. One would bend down and I couldn't unbend it so I couldn't walk.
I'd have to stop what I was doing and sometimes I even sat in the street because I couldn't walk. As it progressed, my whole body crunched up and then I couldn't do anything at all. I couldn't even walk to the bathroom.
George:
She would get these full body crunches. They're called dystonia. She would curl up in a fetal position. The pain would last for hours and nobody knew what it was or what they could do about it.
Norma:
I had trouble with the same med that George did. It cost both of us our first marriages really. I didn't realize that my behavior was compulsive but I was drinking too much and spending too much and had sexual side effects. I became a totally different person. My first husband had health problems too so there wasn't enough energy leftover after I cared for him to take care of myself.
George and I have a different relationship because we are equally patient and caregiver.
George:
Our relationship is wonderful. We both have Parkinson's and have somebody who knows what the other one is dealing with and has compassion for it. Really saved my life.
Norma:
When, the medication was really making me crazy and I couldn't sleep I'd get up in the middle of the night and drive around and get completely lost. I'd call George and he'd come and get me. If it wasn't for the DBS surgery we both would probably be in nursing homes right now or in some kind of living facility but as of now, we're still living independently.
George:
I really consider Parkinson's a gift in a way. It sounds weird.
It forced me to make some changes in my life and think of myself as somebody surviving Parkinson's and to make an impact. It’s my legacy so to speak. I want to make an impact in the Parkinson's community. We started a support group ten years ago and we've met thousands of people with Parkinson's who share their stories. What we've done is bring together a group of people to share information and share common experiences.
Norma:
It's rare for me not to feel anxious with people. But I don't really get anxious with the people from the Parkinson's group. It doesn't matter how we are in the group because everybody gets the same way at times.