This did make me think of the woman I knew with Parkinson's when I was a little kid and would talk with her about it because I suspected when I was around 10, that it may be why I was shaking, from other adults I knew who were shaky. However this woman was not, shaky, which surprised me when she told me she had parkinson's. I continued to know her and have many conversations with her over the years, mostly about things not Parkinson related. Although sometimes it came up, and she had talked about maybe three times on why at some point when she had been younger, after many discussions with her brother, who was a medical doctor, she had decided to stop with the medication because of the side effects. I had almost forgotten about that, because I hadn't known her in the time she was still on it, and she had expressed shame although understanding about how for a time she became addicted to gambling. She hadn't even known anything about gambling before she found herself in this situation. Thankfully her brother realized what was happening. He wanted her to be as well as she could, but understood her decision, with not only that effect, but others. Also her symptoms were not so much the shaking, but many of the other things people don't see. I knew her, long enough to know when she died and how she was found by elders of the church, which was explained to me, in my thirties. She was sitting straight up reaching into the air with her hand. I am able to understand that now, with the way dystonia effects me, and what happens if I don't randomly hear something go off that brings be back into movement. I have so many talking devices and random neighbor sounds around me, that I suspect that keeps me roused often when I might not be, but I don't know that for sure. The dystonia has progressed more and more since the first weird experience I had with it in 2009. I never knew the word for it, for years and years. I know it's not just charlie horses, or shin splints. It happens in all muscle locations notifying me of places I never would guess there are muscles. I knew many people with Parkinson's but none like her. She told me more practical things without really elaborating much about the hurting part, but that it did wear her out some times where she stayed home and missed us sometimes. She was able to listen to things and accept them in ways that my family just wouldn't just on all the things women and girls go through. She was a single woman living by herself and always helped us girls know that was also an option we could choose. The pressure to get married was very extreme, in both the secular and faith based culture we lived in. This was just what I was thinking of during my first listen to this as I was crashing out from the long errand I had two or three days ago. I am still feeling the effects of that coupled with the weathering outside conditions I couldn't avoid that day. The autonomic things that usually help people in extreme heat and marathon type things, simply don't quite help me like before, no matter how well I prepare and plot my journey to avoid the sun as much as I can. I had to deliver yet another whole boot box of files to another agency to meet a hard deadline in order to survive some more, as I try to regroup still. The person at the agency seemed to grasp why I needed to be sure everything was as thorough as possible to their satisfaction because it would be several days before I could possibly turn up in person again. ...even if I were married and a spouse could drive me over or fill in paper forms for me. It turns out the agency person had, had heat stroke as a child, which effects her to this day. I felt awful that she had to go through this as a child, but so lucky she really could understand the invisible parts of the situation. A lot of times people see my muscles and don't understand how that could be a problem, or I could be very debilitated. This person knows these are not super powers. 😊
This did make me think of the woman I knew with Parkinson's when I was a little kid and would talk with her about it because I suspected when I was around 10, that it may be why I was shaking, from other adults I knew who were shaky. However this woman was not, shaky, which surprised me when she told me she had parkinson's. I continued to know her and have many conversations with her over the years, mostly about things not Parkinson related. Although sometimes it came up, and she had talked about maybe three times on why at some point when she had been younger, after many discussions with her brother, who was a medical doctor, she had decided to stop
with the medication because of the side effects. I had almost forgotten about that, because I hadn't known her in the time she was still on it, and she had expressed shame although understanding about how for a time she became addicted to gambling. She hadn't even known anything about gambling before she found herself in this situation. Thankfully her brother realized what was happening. He wanted her to be as well as she could, but understood her decision, with not only that effect, but others. Also her symptoms were not so much the shaking, but many of the other things people don't see. I knew her, long enough to know when she died and how she was found by elders of the church, which was explained to me, in my thirties. She was sitting straight up reaching into the air with her hand. I am able to understand that now, with the way dystonia effects me, and what happens if I don't randomly hear something go off that brings be back into movement. I have so many talking devices and random neighbor sounds around me, that I suspect that keeps me roused often when I might not be, but I don't know that for sure. The dystonia has progressed more and more since the first weird experience I had with it in 2009. I never knew the word for it, for years and years. I know it's not just charlie horses, or shin splints. It happens in all muscle locations notifying me of places I never would guess there are muscles. I knew many people with Parkinson's but none like her. She told me more practical things without really elaborating much about the hurting part, but that it did wear her out some times where she stayed home and missed us sometimes. She was able to listen to things and accept them in ways that my family just wouldn't just on all the things women and girls go through. She was a single woman living by herself and always helped us girls know that was also an option we could choose. The pressure to get married was very extreme, in both the secular and faith based culture we lived in. This was just what I was thinking of during my first listen to this as I was crashing out from the long errand I had two or three days ago. I am still feeling the effects of that coupled with the weathering outside conditions I couldn't avoid that day. The autonomic things that usually help people in extreme heat and marathon type things, simply don't quite help me like before, no matter how well I prepare and plot my journey to avoid the sun as much as I can. I had to deliver yet another whole boot box of files to another agency to meet a hard deadline in order to survive some more, as I try to regroup still. The person at the agency seemed to grasp why I needed to be sure everything was as thorough as possible to their satisfaction because it would be several days before I could possibly turn up in person again. ...even if I were married and a spouse could drive me over or fill in paper forms for me. It turns out the agency person had, had heat stroke as a child, which effects her to this day. I felt awful that she had to go through this as a child, but so lucky she really could understand the invisible parts of the situation. A lot of times people see my muscles and don't understand how that could be a problem, or I could be very debilitated. This person knows these are not super powers. 😊
Older women would be good for the panel