Sherman Paskett
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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 keep mine in the original container in my medicine chest over my bathroom sink. They require 3/4 of the shelf space. Every night, before bed, I count out the next day’s meds: 10.5 C/L, 1 Rasagiline, 2 Amantadine, and put them in a little metal pill canister on my keychain, so I always have a day’s meds on me.
If I am traveling I generally count out enough for the trip and put a day’s worth in one of those daily pill minder things, then transfer them to the keychain each night. I also pack a few days extra meds, just in case something causes a delay. I have had PD for 13 years and never been off meds for more than a few hours. I do not want to find out what might happen if I am off meds for a week.
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Oh, sorry. C/L is carbidopa/levodopa, otherwise known as Sinemet. There is a lot more I could have said, but I opted for brevity. Here’s the whole story:
C/L is the go to drug for treating Parkinson’s symptoms. One problem with it is that it has a very short half-life, so it is normally taken three to four times a day. As you continue to use it, it starts to wear off faster, resulting in “off times,” e.g., times between doses that the med is no longer effective.
There are various ways to deal with this problem; controlled release forms such as Rytary; larger dosage; a device similar to an insulin pump that meters out a liquid form into your body, etc.
In my case, we went the simple route—because I was not experiencing significant off times during the day—of adding a half-dose right before bed. That gave me a solid 4 to 6 hours of sleep before my bladder told me I had to pee. So I was able to get up once, rather than 3 or 4 times a night.
What I am suggesting is that it may not be a urinary problem at all, but could be associated with the meds wearing off as we sleep, and when they are sufficiently off, we start losing control of the little sphincters (valves) that hold back the urine.
My doctor needed a little persuading, but I keep pretty good records of my symptoms, urinary and bowel habits, mealtimes—anything I think could help me understand my disease, and I could show her that I was experiencing a need to pee whenever my meds had worn off during the day. It was a short leap from there to presume that the same thing was happening as I slept, but without the benefit of a next dose until I started the new day. In my case, I took my last dose at 6pm, went to bed at 10, and started getting up to pee about once every hour or so around 11pm or midnight. Adding a half dose right before bed (10pm to 12am) gives me an additional “on” cycle and the ability to sleep 4 to 6 hours before getting up to pee, and then only once before I get up and start my day.
Long, but hopefully helpful. Apologies if TMI.
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I started sinemet 25/100 twelve years ago at 1 pill four times daily. Then it went to 1.5, then 2, then 2.5 four times a day and 1.5 when I go to bed — that’s 11.5 per day, about the max they will prescribe. I also take rasagiline, added 6 years ago and amantadine added 5 months ago. My neurologist say I should start preparing myself for DBS in a year or so.
For 13 years my symptoms have been well managed with meds and physical therapy but that is nearing the end and surgery is the next step.
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PD has its own schedule for what it steals from us and when. I am 68 and was diagnosed 13 years ago. Over that time my fine motor skills and vision have degraded to the point that I have given up on my electronics hobby, something I have pursued since I was 8. I still have a woodworking hobby, but am moving away from power tools — they are becoming too dangerous.
My main coping mechanism is to insist that my wife and caregiver never help me do anything I can still do for myself, no matter how long it takes. When you stop trying PD has won.
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This is an old post, but one of the many changes to Medicare last year was a change that is intended to reduce the donut hole. I hit it last year. You have to be very careful picking your Part D prescription plan. Medicare has a very good webpage that will help you with that — it tells you what your projected prescription costs will be, but that assumes there are no changes in your meds. If your doctor switches you from C/L to Rytary mid-year, for example, be prepared for a shock.
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I live in the desert and our outdoor activities are pretty limited in the summer. It is then that I notice my PD symptoms getting worse due to lack of physical activity.
October through April, however, you will usually find me pulling the tools out on the driveway (my woodworking shop) and working on various projects. During this period of high activity I am virtually symptom free, so long as I stay on my meds. But after a few days of limited activity the tremor is back with a vengeance.
I have not found an exercise program I can do inside that I can sustain any interest in. I have to be outside, with my tools and some wood.
I have this wonderful recumbent trike I bought years ago when I first felt my balance going south, but I don’t ride it — it’s too slow — even though we have paved canal banks that are very bicycle friendly. I need to dust off the thing and get some lower body exercise.
BTW – planing a board is a great upper body workout. Don’t let some doctor tell you that woodworking is not exercise.
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Perhaps I am a bit dense, but what defines a “dementia friendly/PD friendly” community?
I am also wondering why we are lumping dementia and PD in the same category. People with dementia should probably not be allowed out in the greater community unaccompanied; people with PD, well, it depends on many factors.
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I am 67 and was diagnosed 12 years ago. I started on Mirapex, which was a horrible experience. I couldn’t sleep, obsessed all night, got up and made electronic stuff when I should have been sleeping. I could sleep well enough at work, though, which nearly cost me my job. Switched to C/L after a year, first a single 25/100 4 times a day, now up to 2.5 25/100 5 times a day. I also take resageline 1mg every morning. I don’t believe it does much but doctor says it is “neuroprotective,” so I take it. Just added amantadine 2 months ago because off time was getting to be longer than on time. The amantadine works great and I have virtually no off time, but I am experiencing RBD every night now. Haven’t cleared it with doctor yet, but the past few nights I have taken an additional C/L about 3:30AM and get through the night with no RBD events. Praise the Lord! RBD is the worst part of this experience so far.
As noted, there are differing opinions on when one should start C/L, but there is concern about how long it can be effective and many doctors like to hold it in reserve for when things get bad. The next step is DBS when C/L is no longer effective, not to be taken lightly. The younger one is when diagnosed the less likely doctors are to prescribe C/L as the first drug.
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Everyone has his way of coping; denial is one that works for a while. One thing you can be grateful for with PD is that there really is no cure — the disease progresses no matter what you do — but there are things you can encourage him to do that will slow the progression of the disease. Encourage him to keep moving, get exercise, eat well (a Mediterranean diet is good), and stay involved with friends and family.
If there were a cure or even a pill that would significantly slow the disease he would lose opportunity for a higher quality of life through his denial, but since there isn’t, the disease will progress anyway and at some point he will give up on denialism and seek help.
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Several years ago I started keeping a spreadsheet in which I record when and what symptoms occur, when I take my meds, when I eat and about how much I eat. This helps a lot when it comes time to talk with the doctor about a med change. It doesn’t take much effort; I use my phone to record the data and create graphs on the laptop before I go to see the doc.
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For me, when the meds are on I am much more likely to do or say something out of character. By that I mean engage someone in political discussion who I know will not appreciate my views, or accuse a friend of doing something harmful to me, or make a risky driving maneuver. When meds are off I am more likely to just sit and be quiet. It causes problems at times because my wife does not fully appreciate the emotional roller coaster I ride with the meds. When I clam up and she is carrying the load of conversing with friends she will poke at me under the table. I just sit there. It’s awkward.
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For years I have taken Sinemet (carbidopa/levodopa) and Rasageline but last year I was in a fog all the time and struggled to stay awake during the day. The C/L dosage was not sufficient to control the tremor but left me in dyskinesia about 6 hours a day. Off time had grown to 2 hours out of every 4, so about 8 hours a day. The Dr. added Amantadine to the cocktail a few months ago and it is as if the PD clock has been turned back 5 to 8 years.
Sinamet is the gold standard for PD treatment. Rytary is still just carbidopa/levodopa (e.g. Sinamet) in a time-release form. Why it is so horribly expensive is a mystery. Not familiar with LDN. Anyway, Amantadine solved my problem,
Amantadine is added when the C/L dose becomes high enough to introduce dyskinesia before effectively treating tremor. It eliminated off time for me and I rarely notice tremor anymore. I have some mild dyskinesia sometimes in the afternoon, but mostly the PD symptoms are gone. So, you might ask your Dr. if you could give Amantadine a whirl along with your regular C/L dose.
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People who have had DBS surgery can often reduce or go off C/D entirely. Like you, I have only seen it increase over time; my dosage has been on the rise lately with 3 increases in the past 12 months.
When claims of reducing dosage come up, I first ask what they are doing that makes their symptoms improve. There is either a cause or a misdiagnosis, if you ask me.
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I struggled with urinary urgency for a number of years until I made the connection between C/L off time and the need to pee. I would experience urgency multiple times during the day and get up as many as four times at night to produce a tablespoon of urine. I broached the subject with my neurologist and asked if we could add a fifth dose of C/L just before I go to bed. She added a half-dose that I take each night and the need to pee has dropped off to once a night and often not at all. If you take a longer acting med than C/L this may not solve your problem, but it sure helped me.
She also added amantadine to my cocktail. This med has eliminated the daytime off-times which was causing the urgency during the day.