richard gitschlag
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I don’t refer to myself as a ‘parkie’, but I reserve that for the disease itself, as in “The Parkie riding on my back”. That seems to keep it a bit lighter.
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I have a reasonably open ability to discuss most issues with my Neurologist, but even with that, it was a bit difficult opening up about the sexual malfunctions at first. It is still a bit hard to go into specifics, but at least broke the ice there and we were able to discuss it, at least in general. She has been very professional in bringing up other personal topics that I have been facing, and non-judgemental in some of the ones I brought up. That has made it at least a bit easier for me to bring up my other concerns.
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Finally! Someone is thinking about a smart phone usable by a Parkie! Not just a tracking app, but an actual, usable phone.
I would think about a ‘clickey’ keyboard, and a screen that can be calibrated for sensitivity. I am really tired of the multiple hits due to my tremors, and unintentional apps starting up after a lazy finger has the slightest brush across the screen.
That’s my first reaction. Thanks for asking.
Rich G.-
Here’s the link: https://forms.gle/rKZAmkQtM9HqqrQ19
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Not all that much. My dad was Plant Manager of a weed killer manufacturing plant, making 2,4-D and MCPA, not to mention 2,4,5-T in earlier years. We used those as I was growing up. y dad lived into his high 80’s, as did my uncle, who worked out in the plant. We lost Dad to dementia, with only a slight Parkinson’s toward the end. I think this may have increased my risk factors, but I don’t see a direct cause-and-effect in my Parkinsons.
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I’ve noticed that when particularly stressful (especially emotional) events occur, it can be like “Hey, who turned off my meds?” Even at the peak “on” time of my Rytary schedule, it’s like a light being switched off. It’s just gone, and the PD is on in full force.
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It’s hard to pinpoint my “first symptom”, as there were several seemingly unrelated things that had been developing over the months before my official diagnosis. In no particular order, there were:
My sense of smell had long departed.
My wife started asking why I looked sad or angry when I didn’t feel anything like that at all (masked face).
My wife asking about my walking “stiff-armed” (w/o arm swings). I was unaware of this, but I had noticed my self-winding watch kept running down, even when I was walking vigorously every day.
Once during an argument, I had a severe tremor in my hands & forearms (mostly right side).
Once while target shooting with a handgun, I started to tremor in my right (gun) hand. I just thought it was fatigue at the time.
While cutting firewood with a chainsaw, I started to tremor in my right hand. I just thought it was fatigue at the time.
While hanging a new projector from an overhead beam at the church, I got to where I could barely turn a screwdriver, or hammer in a wire staple using my right hand. That’s when I started to think that there was something else going on, and started seeking medical help.
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I have been using the term “Parkie” to name my disease as my opponent. I have found that personalizing it (and naming it as my enemy) makes it a lot easier to deal with the deterioration and various setbacks that I experience daily. I don’t call a real person enduring their own PD battle as “a Parkie”, unless we’re well acquainted with each other. -Rich G.
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I have personalized this disease by using the term “Parkie” as my enemy and burden, as when, in a particularly bad day I can blame “the Parkie is riding my back harder today.” That seems to lighten my attitude at least a bit.