@virtualsalt
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Robert Harris replied to the topic Twitches and Falls in the forum A Forum for Parkinson's Disease Caregivers 1 month, 2 weeks ago
I’ve had PD since about 2005. I had one period of sudden falls, but then they went away–until just recently, five or more years later. I am trying to analyze my CDL dosage to see if that makes a difference. My working hypothesis is (1) underdose = weakness, upset stomach, tiredness, difficulty moving. (2) overdose = dyskenesia, nocturnal k…[Read more]
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Robert Harris replied to the topic How can we make improvements to the forums? in the forum Using our forums 5 months, 3 weeks ago
I agree with Clive. I have had a handful of my replies deleted silently, and have never had a response when I have asked why. Moreover, there are no posted rules or guidelines that explain what is required and what is prohibited.
I have spent several hours on one or two occasions writing up a post that I thought would be helpful, only to see it…[Read more]
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Robert Harris replied to the topic What are all of your symptoms that are PD related. Please list them. in the forum Parkinson's Disease Symptoms 6 months, 3 weeks ago
Here’s my jewel box:
loss of sense of smell (anosmia)
handwriting has become illegible (micrographia)
constipation (I use a tapwater enema each day to flush out the lumpy blockage)
insomnia/poor sleep
klutzism (excuse me, may I knock over your lemonade gladd?)
balance issues (I call it the drunkard’s walk. It got me a free half sandwich in…[Read more]
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Robert Harris replied to the topic Long term Levodopa use in the forum Parkinson's Disease Medications 8 months ago
Here is what I have experienced over the years. Some, all, or none of these experiences may apply to you if you have Parkinson’s.
1. Neurologists who don’t have many Parkinson’s patients still call CD/L “Simemet” because that was/is the brand name when the med was rolled out. No generic for many years.
2. Neurologists who don’t have many…[Read more] -
Robert Harris replied to the topic What helps you live your best life with PD? in the forum Living With Parkinson's Disease 1 year, 4 months ago
Alan:
You are very welcome to use my posts in your work. I have also written a partial book, The Parkinson’s Book, which is on my Web site. I’m not sure if I can put the URL in a post, but I’ll find out.
Thanks,
Bob (aka Robert)
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Bari and
Robert Harris are now friends 1 year, 4 months ago
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Robert Harris replied to the topic What helps you live your best life with PD? in the forum Living With Parkinson's Disease 1 year, 4 months ago
Robert; B1950; Dx:2005
What Helps You Live Your Best Life, Part 2
3. Get Organized. Parkinson’s throws a wrench into the machinery of you life, making planning, focusing, and completing tasks much more complicated and time consuming. So, while you are still able, take the necessary steps to make you current life your “best life” and your f…[Read more]
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Robert Harris replied to the topic What helps you live your best life with PD? in the forum Living With Parkinson's Disease 1 year, 4 months ago
Robert; B:1950; Dx:2005
Ally:
Here is my list of “what helps” me live my best life with PD.
1. Get serious. Yes, this is the “fix your attitude” order. Most people seem to make themselves unhappy by obsessing on what they don’t have or by constant whining over their pathetic lives. And yet the live in a culture, economy, and technological…[Read more]
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Robert Harris replied to the topic Do you use humor to cope? in the forum Diagnosis Information and General Questions 1 year, 4 months ago
Robert; B:1950 Dx:2005
Mary Beth: I’ve been poking around the blog to see what various threads there are, and when I came to one by RicH, I saw his bit of wisdom: “Life doesn’t stop with a diagnosis.” I would like to suggest that you moderators read through the past posts in your threads and glean out whatever wisdom (and maybe humor) you fi…[Read more]
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Robert Harris replied to the topic Best Mattress for PD? in the forum Living With Parkinson's Disease 1 year, 4 months ago
Robert BD 1950 Dx 2005
During my years of experimenting with sleeping adjustments to improve my sleeping (I’ve had insomnia since about age 8), I bought an offensively expensive mattress and automatic frame adjustment system. The top of the mattress reached 26 inches from the floor, which I encountered twice while asleep. About the same time, I…[Read more]
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Robert Harris replied to the topic Walking/Bumping into objects in the forum Living With Parkinson's Disease 1 year, 4 months ago
Robert B:1950 Dx:2005
Alan, you asked about employment after diagnosis. I was working as an instructional designer and manager at a call center. I had begun to see symptoms in myself about 2004 or 2005 (dates are not guaranteed unless you have our extended warranty), mainly consisting of (1) loss of sense of smell and (2) loss of dexterity in m…[Read more]
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Alan M and
Robert Harris are now friends 1 year, 4 months ago
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Robert Harris replied to the topic Walking/Bumping into objects in the forum Living With Parkinson's Disease 1 year, 4 months ago
Robert B:1950 Dx:2005
Alan, I was going to shut up for now, but since it appears that I’m a little overmedicated right now, I will add my two cents to the topics you recently breached (or is it broached)?
Got drooling? The medspeak term is sialorhea. Excessive drooling might be dubbed hypersialorhea. Excessive night time drooling could be…[Read more]
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Robert Harris replied to the topic Walking/Bumping into objects in the forum Living With Parkinson's Disease 1 year, 4 months ago
Robert B:1950 Dx: 2005
Hi folks. A comment made by one contributor (short term memory impairment prevents my giving the name) about the younger PWPs learning something valuable from the older and more symptomatic gave me the idea of attaching, on a completely volunteer basis, the birth year and the date of diagnosis of the person posting
. That…[Read more]
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Robert Harris replied to the topic Walking/Bumping into objects in the forum Living With Parkinson's Disease 1 year, 4 months ago
For awhile, my neurologists would ask me regularly, “Do you experience hallucinations?” and I would say, “Nope.” Then, after they stopped asking, I did have one. I looked out at a parking lot that suddenly did a wave movement–that sort of traveling ripple that moves across the ground. That was it, done, gone, where’s the popcorn? Now, for a…[Read more]
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Robert Harris replied to the topic Walking/Bumping into objects in the forum Living With Parkinson's Disease 1 year, 4 months ago
Isn’t it just so bizarre that you can be standing there minding your own business when all of sudden you notice that you have just let go of the form you are in line to get rubber stamped, and it has floated to the ground? And with just a bit of replay analysis by your brain, you realize that you did it yourself? I would rather blame “Them” as C…[Read more]
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Robert Harris replied to the topic Walking/Bumping into objects in the forum Living With Parkinson's Disease 1 year, 4 months ago
In the last year or so, I have developed a decidedly klutz-like behavior. By that I mean that inadvertently knocking over water glasses, turning a corner in a hallway and walking into some poor, unsuspecting person, hands slipping on a screwdriver–I’ve never had so many “accidents” as I have recently.
Perhaps related is that regularly I will be…[Read more]
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Robert Harris replied to the topic Do you have theories about why you have Parkinsons? in the forum Diagnosis Information and General Questions 1 year, 6 months ago
Thinking about THE cause of Parkinson’s is like thinking about THE cause of cancer. Think instead about the underlying cause of PD symptoms: dying brain cells. Then, think about what you have experienced that is/was killig your brain cells. Candidates for my case inclde ***playing with mercury as a kid, ***using large amounts of bug spray in a…[Read more]
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Robert Harris replied to the topic Do you think your stress levels have gotten worse over time? in the forum Parkinson's Disease Symptoms 1 year, 6 months ago
If you connected a “Stress Detector” to my nervous system, it would say that my genuine stgressors (I think that’s the name for the things that cause you stress, such as letters from the IRS) have objectively gone down as time has passed. I retired in about 2014, and I have had less stuff to worry about since then. But even though I’m ensconced…[Read more]
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Robert Harris replied to the topic Has your PWP lost interest in things they once liked? in the forum A Forum for Parkinson's Disease Caregivers 1 year, 6 months ago
Mary Beth:
Yes, it didn’t take long to make the association between protein and OFF periods (in other words, “Eat a cheeseburger, feel like zero.” So the remedies are (1) mix your protein with low or not protein food: hamburder and rice, hamburger and noodles, beef soup with lots of vegetables, etc. (2) increase your meals to five or six a day,…[Read more]
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