Sherman Paskett
Forum Replies Created
-
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.
-
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.
-
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.
-
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.
-
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.
-
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.
-
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.
-
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.
-
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.
-
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.
-
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.
-
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.
-
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.
-
There were a couple: couldn’t wiggle my toes; and couldn’t put a sandwich in a baggie to save my life. Something about getting the slices of bread to stay together and line up going into the bag was nearly impossible. I took to wrapping my sandwiches in plastic wrap.
I would wonder, what is wrong with me? Then the tremor started and I knew. Got the diagnosis a year later, when I became convinced that things were becoming too difficult.
-
+1 for @Daniel. “Sticky” threads at the front of each topic with especially relevant content would be nice.
Some forums offer a way that people can submit articles they have written that go into more detail on a certain topic and are more of a one-to-many rather than a many-to-many distribution model. Contributors are vetted by the moderators before they can submit an article and the moderators must approve the content before it posts — this keeps rants and crackpots out of the picture.
As for our moderators — I think you do a very good service to all of us. I have been “corrected” by moderators a few times (not on this site — yet) and there are two ways to respond: I could be offended or I could learn. I always seem to come around to learning from the experience though sometimes it takes a little time. You do a great job.
-
I haven’t, but I have read reports from others who have been stopped for a DUI. The particular case that I read on another forum was reported by a woman who had been given a DUI because she was drifting across the lane lines. She went to court and the judge dismissed the case when she told him she had PD, which I found interesting. The judge must have had some significant awareness of PD or I would have expected her driver’s license to be permanently suspended. Or maybe the judge was just a compassionate person. The DUI was inappropriate, but if I were not able to stay centered in my lane I would not want to be driving. Sometimes that means when the meds are off I don’t drive and that can mean I am stranded wherever I am until the next dose kicks in.
Recently, though, I took my midday dose an hour early due to driving across a timezone and my smart clock in the car advanced an hour which I forgot to compensate for. The dyskinesia, which was already problematic, was so intense for a couple of hours that I was staggering all over the place. I just had to sit down and wait for the overdoes to wear off.
-
All symptoms?? Really? People with mid-stage PD have dozens of symptoms and/or side effects of the treatment. Sometimes it is hard to separate the two.
For me, 11 years post-diagnosis:
- Tremor
- Poor impulse control
- Dyskinesia (random head/shoulder movement – med side effect)
- Bradykinesia (freezing)
- Short term memory loss (“mild cognitive impairment”)
- Pain (dopamine is a pain modulator)
- Sexual dysfunction
- RBD (active dreams, usually violent and very real)
- Sleep disruption (wake up when the meds are off)
- Daytime sleepiness
- Difficulty swallowing, gagging
- Poor impulse control (saying the wrong thing at the wrong time)
- Dry eyes
- Dry mouth
- Drooling
- Constipation
- Urinary urgency (when the meds wear off)
- Pain (dopamine is a pain modulator – chronic pain increases when meds are off)
- Loss of balance
- Double vision
- Loss of facial expressiveness
So now what? 11 years into this, I am still able to do nearly everything I want to do, I just do it much slower and not as well. I have my woodworking hobby, electronics is out of the question now due to vision issues; some related to PD. We travel and go camping, though my wife is the primary driver now. We completed a 3800 mile trip last month; she drove about 3000 of them. I have not been on a bicycle in 5 years due to balance issues, but have a really nice recumbent trike. Life goes on.
-
I could put it all under the heading “Loss of Mobility.”
After successfully dealing with PD for 11 years, last year I had a back injury that required surgery, and immediately after surgery my PD symptoms had surged. I required a 50% increase in C/L just to get symptoms back to where they were pre-surgery, and the rate of progression of the disease has accelerated.
I move slower, I shuffle, I have balance issues, I have had to quit driving. I hurt. I feel as if I have aged ten years in the past year. My advice to anyone with PD: Avoid serious physical trauma (good luck with that) — getting hurt can really mess with PD.
-
Been jabbed 5 times; never had a serious reaction, nothing more than a bit of fatigue the next day.
PD for me gets incrementally worse every time I suffer any kind of physical trauma, be it a serious injury or surgery or even a bad cold. I do not enjoy the PD experience so I will get any kind of vaccination that is offered: flu, shingles, pneumonia, you name it. If I can get it, I will.
-
Years ago, long before PD was ever on the radar, I took advantage of my employer’s offer to provide long term care insurance. We’ll see how that works out in a few years.
-
I discovered some time ago that 6 hours after my last does of c/l for the day I urgently needed to pee. This would wake me up every night at midnight, then every 1-2 hours thereafter. I convinced my neurologist to add a small dose at bedtime. Now I get a solid six hours sleep before I have to get up and pee.
-
Omar, sorry that your father is suffering. Sadly, it has been my experience that PD symptoms worsen dramatically whenever the body undergoes any serious trauma, whether it be an injury, a serious illness, or even an emotional event. A Covid infection would certainly qualify as traumatic. High neurologist should be consulted to reevaluate his meds.
I started on rasagiline and it was a horrible experience. He is old enough he could take carbidopa/levodopa and not have to worry about long term side effects, and not have to deal with the problems rasagiline causes, such as sleep disruption and obsessing.
-
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.
-
Interesting, Tony. It was inability to judge distance to oncoming cars that got me, too. Also taking too long to make decisions — I would see an opportunity but the thought process of deciding it was safe and executing the move now takes longer and I don’t factor that in. So far I have just been honked at, but I can see the time will come that something bad happens.