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Parkinson's: What tips do you have for caregivers?

Caregivers | Last Active: 9 hours ago | Replies (13)

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vette98,
First, I must get this out of the way: I am assuming that you have a 1998 Corvette. I am beyond jealous! I settled for a 1986 Fiero (Red, of course. I drove it until I got a new VW Beetle about 2000 - blue - with License plates DJ VW (which was far inferior to both the Fiero and the original VW Beetle (we had a 1968 VW). Ok, on to PD stuff.
First I need to specify that:
(1) I am not a health care professional, but merely a PD patient diagnosed in November 2023, after 3 years of chasing a diagnosis (during which time I found out there were many diseases that I did NOT have).
(2) I am not giving you medical advice. I am only giving you an example of a medication regimen that worked for me so you will have some idea of what I mean by that term. I inferred that none of the doctors you encountered in your search for a diagnosis set up a medication regimen that included l-dopa. If that's correct, then that's a..(I'm struggling for a word that can be used in polite company but I can find nothing even close, so I'll settle for "travesty" or "abomination" which are weak substitutes for the other words I have in mind. It seems like they just shrugged their shoulders and sent you on your merry way, wih bupkus. At the end of my last hospitalization, the 3rd,after all the tests , the head of this 3rd team of neurologists also had no diagnosis. But, as a last effort, the doctor in charge thought of one more thing to try, just to see what would happen. It was to simply give me an l-dopa pill and see what happened. There was nothing to lose, it was cheap, easy, and results would come in 1 hour. He examined me - the usual pulling your arms, pushing while you resisted, the standard drill you no doubt have seen at least 2,987 times yourself. An hour later, he returned and tested me again, to behold what I could only describe as a miracle as I described yesterday, so that won me my official diagnosis - Idiopathic Parkinson's, meaning it doesn't meet the textbook standard, but we've ruled out a trillion other things and it the patient responds well to l-dopa, so what the heck! We're just going to call it PD, and treat it as we'd treat PD, because it's not any of these 3 trillion other diseases it could be and, if it looks like a duck, and talks like a duck, it's probably a duck. We'll just slap that 'idopathic' on the front of it because it's more professional that just callng it BTSOM (but that's what it really is). So the patient and her l-dopa lived happily ever after. My primary care physician referred me to an excellent neurologist who started me out on a regimen of l-dopa and I started to actually have a life again. Here is the regimen that ultimately evolved. Over time, the disease progresses and the regimen will be tweeked to meet the new requirements.There are lots of different kinds of l-dopa pills. There is a capsule that provides time re-lease so that you take it when you got to bed and it will last through the night. There's another that is quick acting in cases where you over-exert yourself, or have forgotten to take a dose and you are heading toward the horrid OFF-Land. There's a lot of trial and error and juggling you'll need to do. For one thing, you must fast for 2 hours before you take an l-dopa pilll and an hour after you take it. I was taking various pills 8 times a day, and that involved a 3-hour fast for each. You may notice that 8 X 3 = 24 hours, so if you followed the directions strictly, you'd have to eat a meal in about 60 seconds. It causes havoc if you want to go out for dinner or eat anywhere that isn't your home, because most diners don't have such rigid requirements for the timing of a meal. Also, few meds need to be taken at such specific times. If you forget to take a thyroid pill 1 hour before breakfast, it's no big deal because you can put off breakfast a little to accommodate your error (or you can just take it and eat breakfast in 30 minutes or so. Parkinson's meds aren't quite so flexible. In my case, if I am 2 hours late with a med, I will take a little trip into OFF-land and it may take me 3-5 hours to get back to my happy place, and it would significantly disrupt the rest of my schedule for the day. Nurses who have no specific experience with Parkinson's patients are not aware of this and you can seem like an irrationally demanding patient if you emphasize the importance of getting your meds on time. As you no doubt know, Parkinson's is caused when the part of your brain that produces l-dopa dies and no longer produces l-dopa (which is essential for transmitting messages to your muscles telling them what they should do).
An example of a medication regimen follows. I hope you have a General Practitioner that can refer you to a neurologist that you can ask about doing a week-long trial of a regimen appropriate for your husband, and I hope it works for him as well as it worked for me. Keeping my fingers crossed for you (and, since I live in Germany, I'm also wrapping my fingers around my thumbs, which is the German equivalent).

SAMPLE
NOTE: In order to get the full benefit of oral medication, you must not eat for 2 hours before and 1 hour after taking these pills.
ORAL MEDICATION PLAN: Patient
DOB: 13 Juvenber1900 DATE: DECEMBER 2024
TIME DOSE (pills) MEDICATION
06:00 1,5 Madopar 125 mg Madopar combines levodopa used to treat Parkinson's disease. It helps increase dopamine levels in the brain while minimizing side effects associated with levodopa alone, such as nausea and cardiovascular issues.
10:00 1,5 Madopar 125 mg
14:00 1,5 Madopar 125 mg
17:30 1,5 Madopar 125 mg
21:00 1.0 Ongentys 50 mg Ongentys inhibits the degradation of certain neurotransmitters such as dopamine, epinephrine, and norepinephrine so your Madopar lasts longer.
21:30 1,0 Madopar 125 mg
24:00 1,0 Madopar Depot 250 mg
As needed, < 2 per day Madopar LT

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Replies to "vette98, First, I must get this out of the way: I am assuming that you have..."

@jatonlouise
To address our love of cars- I did own a 1989 Corvette-I just reversed the numbers! It was my dream car that I owned for 10 years. Age crept up on me and I got to the the point it was difficult to get in and out so I sold the car but have never lost my love of Corvettes. I have owned VWs early in my life. They were economical and fun to drive-great little vehicles. I have always had a love for sports and luxury cars! My next dream car would be a BMW or Mercedes.
Sounds like you are very well versed on PD meds. I have just been overwhelmed with all the meds my husband has been prescribed that he no longer is taking. At times I think doctors are just throwing pills at him to see what works. He is currently taking Carbidopa/Levodopa for his PD twice a day. So far this has kept his falls and shaking somewhat under control. I feel that his advanced age has something to do with how much doctors are trying to help. He is 92. Last year, his symptoms included TIAs, stroke symptoms, violent shaking (like seizures) and probably 20 falls. At no time did doctors say he had a stroke. He has had EEGs, CT scans and MRIs. I am at a loss of what to say to doctors anymore. At one time I actually had a doctor that discharged him from the hospital tell me not to bring him back unless his symptoms lasted more than four hours. It has been very frustrating to say the least.
Good luck with your medication regime and thanks for your comments!