Sherman Paskett
Forum Replies Created
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Fourteen years post-diagnosis, I was bouncing between constipation and diarrhea daily. I because concerned about overuse of laxatives and decided to take a different approach: I examined the food I ate and found my typical American diet consisted of meat and carbs and an occasional carrot. For the past few months I have made sure I get plenty of natural fiber daily along with a supplement. I take magnesium which promotes sleep and has a laxative effect, but also many other beneficial effects. I eat about 2/3 cup of quality yogurt (plain, not flavored) to which I add some fresh fruit. I intend to try kefir soon. And I mind hydration. When my mouth gets dry I hit the bottle, taking sips, not gulps. Your body will just dispose of the water if it gets too much too fast. This is especially important if your water has a fiber supplement or magnesium citrate in it. So far I have reduced laxative use from once or twice a day to once every five days.
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I went to my first session yesterday. I had a blast. I have never been very good at anything in the sports department other than bicycling and that is what I have always gravitated to. But yesterday I went in with the attitude that I was going to have fun and laugh at myself. And I did. I laughed at myself a lot. This is so much better than that ballroom dance class I let my wife talk me into fifteen years ago. I suspect that I am their only customer they have ever told not to come back. I kid you not…
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My heart aches for you. This is not a simple subject and hinges largely on what you and your husband believe about life in general. My wife and I had this discussion long ago and we both agree that we do not want feeding tubes. A feeding tube will prolong life, and if that is most important to you and your husband, then by all means do it. But a prolonged life is not necessarily a good life, so make sure you are both in agreement because the decision will affect both of you.
This is one of the horrors of PD: one way or another, no matter how hard you fight it, PD always wins. If you are a person of faith, meet with your spiritual advisor. If not, talk it over with a like-minded friend. Consider why, or why not, you want to take this next step and whether it is in your or your husband’s best interest.
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For a little about light therapy 100 years ago, see https://daily.jstor.org/colorful-lights-to-cure-what-ails-you/
I am not a medical person, but I am an engineer and at one point I offended my neurologist by telling him that the only difference between his profession and mine is the type of computers we work on. Mine are silicon-based, his are carbon-based. There is one other difference, though — I know how mine work, he hasn’t figured out how the carbon-based computers work. He didn’t like me much after that.
I don’t want to trigger a firestorm or make it hard on the moderators, so I’ll say no more. Everyone is entitled to an opinion, wisdom is knowing when to keep it to oneself.
To the moderators: This is a great forum. Keep it up and thanks.
daily.jstor.org
Colorful Lights to Cure What Ails You - JSTOR Daily
Between 1920 and the 1960s, tens of thousands of people received treatment with a Spectro-Chrome to address various ailments.
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Thank you, Jackie, for your insightful book, The First Years…. It was one of a dozen books I read when first diagnosed 13 years ago and the only one I point new PDers to for information. I wish there were a comparable book for the middle years and especially the final years.
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A year ago I had virtually quit driving because off time had become longer than on time and I couldn’t drive safely when the meds were off. Fortunately my doctor added Amantadine to my cocktail and off time went away. My wife still did the bulk of the driving until she had her right knee replaced and the recovery went south. Four months post-surgery her knee is still extremely painful and she can’t bend her knee enough to drive, so I am back to doing all the driving. We avoid rush hour as much as we can and don’t drive at night but it is still a tense situation when I get behind the wheel. It has been a struggle.
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I want a remodeling contractor who does what I want, the way I would do it, and not think he should get $200 an hour plus materials for the job.
I know, I lead a rich fantasy life. Merry Christmas and God bless all the PD sufferers and those who suffer with them.
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I got my first pair of Kiziks last week. First impressions are they are what they claim to be—easy to put on—but for me possibly dangerous. I have slipped twice , once on the laminate floor in our house and once on loose gravel in a parking lot. The soles are too hard and for me do not provide enough of an arch support. I will try a different model and hope they use a different sole material.
I have worn New Balance 574 for 30 years or so. They are the perfect shoe for me with one exception — I have to tie the laces. But with a perfect fit it’s worth the effort.
My son recently introduced me to Hey Dude, more slipper than shoe, these can be worn in public but are very casual.
Finally there are good old Minnetonka moccasins. These are as close to going barefoot as you can gat. They come with a hard sole or a soft gum rubber sole. I have worn some version of these for over 60 years. They slip on easily and while they have ties of a sort they can be pre-tied and slipped on and odd easily. They can accommodate orthotics if needed, or retail store insoles.
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YES! To nearly everyone outside of our household I am perfectly normal, except that I fly into rants once in a while. I used to have a pretty good filter, now my wife has that job —when she is around. But nobody else ever sees me when the meds are off. They have no clue that it takes five minutes to get out of bed in the morning (in fact, even the Occupational Therapist at the PD clinic couldn’t grasp that one) or why I will suddenly jump up and leave a meeting on a race to the bathroom (speed walking because I can no longer run). Or why I am so slow at everything I do. Even I struggle with that one — I still estimate jobs as I would have in the pre-PD days — and instead of being low by a factor of three I am off by a factor of ten. People at church wonder why I never volunteer to set up chairs or help someone move anymore. BECAUSE I LOOK SO DA## NORMAL!!
Nobody, not even my wife, knows what I am going through, but she is as well informed as I can persuade her to be. It’s not the big stuff, it’s not fear of dying — it’s the little things— brushing my teeth in the morning, getting dressed, driving and constantly having to remember that I do not judge distance or speed of approaching cars well, dealing with constipation, forcing myself to walk normally when my brain is saying “it’s okay to shuffle, nobody will notice you dragging your foot, you don’t have to hide that tremor… .”
And all that time other people are thinking “What is wrong with that guy.” When I get a chance to explain, the usual response is “I never would have known,” and they wouldn’t have known because to them PD is an old man with a tremor, and I am not old enough, yet.
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There are several things I do that I never had to think about before PD. I keep a water bottle nearby at all times. I look at my urine. The darker it is, the dryer I am. But mostly I pay attention to my mouth. If my lips are dry I take a small swallow and keep that up, every ten minutes or so until the feeling goes away. If my mouth is dry I drink more, but I never chug it. When you drink too fast your intestines can’t absorb it so they just flush it out of your system.
Drinking a lot can leave you low on electrolytes, so I will often add a bit of Gatorade powder, about a third of what they recommend, to replace electrolytes and add a little flavor, but Gatorade mixed to their recommendation is too sweet for my taste.As I mentioned in an earlier post, one other thing I do is prepare my daily dose of water in the morning. That goes into a monster thermos, 2.5 quarts, and goes with me everywhere. I rarely empty it out but it keeps the water cold and helps me keep track of how much I drink. One advantage of living in a desert is nobody thinks it is weird to carry around a huge thermos full of water!
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I have a 2 1/2 quart thermos that I fill with ice and water every morning. I also have a 20 ounce water bottle. I transfer water from the thermos to the bottle and keep it by my side all day long, sipping water and refilling the bottle throughout the day. I drink until the thermos is empty.
Chugging water does not hydrate; it just makes your kidneys work harder and you pee it all out in less than half an hour. Frequent small drinks give the body time to absorb the water. You can add a squeeze of lemon or line or a couple spoonfuls of Gatorade powder to give it a little taste, but for me plain water ice cold does the trick. -
I live in the Phoenix area and the heat is unbearable this time of year. My back is covered with sweat after standing outside in the sun for five minutes — doing nothing!
this is just one more of the many symptoms of PD. There doesn’t seem to be anything to do about it. I wear shorts and peel off my shirt when in the house. Outdoor activities are on hold until October.
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Dry eyes was probably the first PD symptom I had and didn’t recognize. That started over 20 years ago. I have used Restasis ever since. Restasis works well for about 80% of the people with dry eyes, but it is horribly expensive and rarely covered by insurance.
This is not advice, but the ophthalmologist who initially prescribed it told me in a round about way to use up the vial contents. Instructions say to only use one drop per eye and toss the rest of the vial. This is because it has no preservatives and there is a risk of infection because one of the ingredients is an immunosuppressant. I have used it for 20+ years and never had any problem but I am very careful to avoid touching the tip. I get 6 to 10 drops out of each vial which makes the stuff almost affordable..
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My father-in-law about 1996 one close friend about 2014, and one not-so close friend about 2021.
When you have PD you cannot avoid thinking about end of life. It becomes very real. When I get out of bed each morning I tell myself that this day is the best day of the rest of my life. It encourages me to make the most of each day and also reminds me that the next day will be just a little bit harder. My f-I-l was a serious challenge in our lives and made everything as difficult as possible. My friends, however, were both fighters yet compassionate with their caregivers. How we approach end of life is a choice and our caregivers deserve some consideration.
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Both of my fellow-travelers on the PD train have reached their final destination. I admire them both; neither surrendered to the disease; they went down fighting and I intend to do he same.
My support group consists of my very understanding wife who keeps me out of trouble and our neighbors and friends at church, who are always willing to lend a hand when we need help.
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I noticed that any stress — physical or emotional — exacerbated the PD symptoms before I even had a diagnosis. I had just woken up from shoulder replacement surgery and realized that I had a tremor in my right foot and couldn’t wiggle my toes. I had already decided I had PD but held off on a diagnosis until after I got a new shoulder.
After living with shoulder pain for 25 years I was not going to let anything stand in the way of getting that fixed. A dozen years later the neurosurgeon who fixed my back explained that putting any metal in the body advances PD symptoms substantially. He did his work without the usual metal strap to hold things in place but the PD still advanced a great deal during the surgery. I went from six 25/100 Sinemet per day to 11.5 plus Amantadine to get the same control over my tremor. Because I track my symptoms, I can nail the change to the exact hour when I was on the table.
I don’t regret having the surgery; what I regret is what I did that led me to need the surgery.
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I was very open with my employer, in part because my job performance had slipped and I wanted them to understand why — and that I was doing something about it. I was on Mirapex at the time and the stuff made life a living hell. I couldn’t sleep at night but found plenty of opportunity to sleep at work. If I had not been open with my boss about PD I would likely have been fired. As soon as I got off the Mirapex and on carbidopa/levodopa my good sleep habits returned along with job performance. However, the project I was working on at the time was nearing completion and with no new work coming I was facing an almost certain layoff, so I was in the job market.
I found a good position with a company doing the same kind of work in the same area. It was perfect and I told myself that I would consider it a success if I lasted three years. With this employer I was again open and frank about my limitations, which were not significant when I started, but at the five year point I started having serious problems. I could work on my main project just fine — it was work I had done for 25 years — but on newer projects, where I had to learn a lot of new, complex detail (I am an engineer), I couldn’t keep up with anyone else. I had to read paragraphs over and over to burn them into my brain. I was apathetic about the work, except for my pet project. At the six year mark I realized that I needed to give it up and retire. I announced my retirement for early 2020, but was persuaded to continue on a part-time as-needed basis. Then COVID hit, and that provided a convenient excuse for them to lay me off. They gave me a generous severance package. I really cannot complain about the way I was treated by either company. I turned out to be the sacrificial lamb — our division was understaffed and needed to add people, but the corporate guys wanted every division to feel some pain, so they were required to lay off one person. I was the lucky one.
I would not do anything different if I were in the same situation again, but every situation is different. If one does not have a good relationship with their employer, having PD may get them fired, particularly in small companies that are sensitive to cost.
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I tell people that the hardest thing I do every day is get out of bed. Then I explain what that means: In the morning, the meds are off and the legs don’t work right. I use my arms to roll out of bed and land on my knees. Now, facing the night stand I can push myself up onto my feet. Then I say my little mantra to myself: Today is the best day of the rest of my life. And I mean it, because every day I lose another little piece of myself. Then I do the Parky Shuffle to the bathroom and take care of pressing business, weigh, take my meds, and try to walk the kinks out of my back before braving the stairs down to the kitchen to get a little food before I urp up the meds I just took.All of this takes place in slow motion because without the meds, everything slows down. I can’t move fast enough to spring out of bed in the morning; I can’t build up enough momentum, so instead I let gravity do the work, which is why I land on my knees.
In a half-hour I am functioning more like a normal person, but without the meds I would be pretty close to a vegetable now.
People don’t get it. How could they? Even after caring for a father-in-law who had PD I didn’t get it; my wife didn’t get it. She, while incredibly supportive, still doesn’t get it anymore than I comprehend her own chronic disease.
As for comfort, yes, there is comfort in commiserating with a supportive person and sometimes with anyone who will listen. My wife and I journal. I have found it helpful to write about my experiences in my journal and we each share our entries every night. That is sometimes better than talk.
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In my 12 year sprint with this disease I am on my third neurologist. Each has seen me every three to four months. Each has been an excellent doctor, though the first one was a bit of a curmudgeon. He retired, #2 went to work for a drug company, and #3 completed her fellowship under #1 and #1 a couple of years ago.
I call when I have a problem, so there is contact between appointments; usually to straighten out problems getting meds from the pharmacy and once in a while for a med adjustment.
The clinic I use is excellent. If you live near Phoenix AZ, you can’t do better than Barrows.
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It’s complicated. The last year at work (11 years after diagnosis) I was both a valued and essential asset to one program I worked on and dead weight on two others I supported. When COVID came around it provided a good excuse to let me go and 2 to 1 in favor, I walked out the door with my box of Dilbert paraphernalia a free man. I was angry for a minute, then I told myself: Wait a minute. I worked 4 months past my announced retirement date (Like I said, it’s complicated). They gave me a good severance package and set me up to claim unemployment insurance. What is there to be angry about? Besides, it was time, it was really overdue. While I could perform very well on the one program because I had worked it and related programs for more than ten years, the other two were new to me with new methods and requirements. I no longer had the mental horsepower to take on new work, so it was time to go.
My only regret — that I did not leave on my own terms — but they did better for me under their terms than I could have on my terms. It’s complicated.
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I have never seen an ad for any PD products. That may be due to my lifestyle, though — I don’t watch broadcast TV, I stream everything I view; I have ad blockers and my VPN also blocks ads.
What is the point in advertising to consumers, anyway? I would not go to any doctor and ask if I could just try some PD med I saw advertised on TV anymore than I would ask for a specific brand of shoulder replacement or catheter or bandaid. It’s ludicrous.
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(I hope this reply goes in the right place)
Mary Beth,
Thank you for your kind response. Now, imagine just for a moment that the person you are caring for is not loved, just barely tolerated. My father-in-law was not a nice man. I will not give you the details, but I had no love for the man. My wife, Christian soul that she is, felt that she was working through some kind of penance for the abuse she suffered at his hand as a child.
We became his caregivers when my wife’s brother showed up with him on our doorstep and said, “I‘ve had him for two years, it’s your turn now.” We had him for ten years and as he declined physically and mentally his behavior became worse, to9. He was a full time project for my wife who was raising two needful teenagers, but she had to neglect them to see to his needs. Our boys suffered so she could tend to him. He pointed to the younger one one day and said, “Now that one, I don’t like him; don’t like him at all.”My wife and I were battling depression and sleep deprivation and struggled to keep the marriage together. I kept telling my wife there had to be some alternative to keeping him in our house. Finally, she overheard me telling him exactly what I thought of him and she agreed that we needed to get him out of the house.
The story doesn’t end there. He lived a few more years and managed to torture us remotely. We would get calls from nursing homes to come and get him, he had punched a nurse. Or we had to provide someone to be in his room 24 hours a day. So we would have him in our home until we could find another bed somewhere, often for months at a time. I could tell a thousand more stories, but I have written enough to explain why I am in favor of euthanasia. If the time should ever come that I am like him, please do the honorable thing and put me out of your misery. (The wording is quite intentional.) Some people will say this is morally reprehensible. So be it. It is also morally reprehensible for an entire family to suffer to protect the life of a miserable man who is functionally incapable of caring for himself, that the medical community is Incapable of caring for, and is stealing precious time that rightly needs to be spent raising honorable children. There is a lot more to this story but I have said way too much already.
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@Barbara, have you been to an ophthalmologist or just your PCP or optometrist? As in all things Parkinson’s it is important to see the right doc. An ophthalmologist will do a Schirmer test to diagnose the problem. If he prescribes Restasis, it works in about 75% of cases. It is used twice a day, whereas conventional wetting eye drops might be needed 20 to 50 times a day. It is worth trying. My optometrist, who prescribes it now, uses a Canadian mail order pharmacy at about 1/10 the cost.
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I have a recumbent trike. It is a very stable ride. The trike you sit upright on can still fall over; I have a friend who fell and broke her collarbone. It’s impossible to fall out of a recumbent. Take a look at Terra Trike. They aren’t cheap, however.