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

This may not help very much, but the hard truth is that Parkinson's is difficiult to diagnose for 2 reasons: (1) There is no 'gold standard" definitive test for it, unlilke cancer. I have seen a couple of references to some tests that may be definitive but I've not encountered them in my 3-yearj-long quest what finally got me a diagnosis and therefore got me meratment. (2) There are several diseases that mimic Parkinson's. The reason a doctor may be reluctant to declare it Parkinson's is that if he's wrong, and starts the treatment for Parkinson's and it turns out that it was one of the other diseaes that mimic Parkingson's, then he'll give you the wrong treatment. Some of these mimicking diseases can actually be cured, but in any case, a wrong diagnosis gets you the wrong treatment. Another problem is that there's a veritable smorgas board of symptoms for Parkinson's and almost everybody has their own special set of symptoms. Then ther are folks like me, who had only 1 obvious symptom - I just kept getting more and more profoundly fatigued. I had no tremors nor did I haave any obvious symptoms that would make it clear that it absolutelly was Parkinson's After spseding 100 days in the hospppital, going through rigorous neurological exams at 3 different hospitals, I finally got a diagnosis, but it was only because, after the 3rd try, when my doctors still couldn't declare a diagnosis, one doctor tried one more last-ditch test -- he just gave me some l-dopa and watchd what happened. I was previously bedrdden and an hour ater l a single-dopa pill I could walk to the barhroom on my own, sit down, stand up, do things as if I had gon to a revival of faith healers. I wasn't healed but I certainly am tons better. Ican go out alone to walk to the pharmacy or grov=cery store 2 blocks from my house. So, the experience you're having with your husband IS grueling, heart-breaking, and frustrating, and you are having a rational response to the reality of how horribly difficult this can be.I can understand the doctor's reluctance to give you an exact time frame for how ,much longer your husband would live.But it does sound like you have not gotten the optimal support your husband's siuation warrants.Has anyone given him a regimine of l-dopaa? You may want to see a neurologisst outside of the VA (particularly given what is going on in the US at the moment, ) But if all they did was shru;ng their shoulders and send him home, they haven't really addressed his treatment very well, it seems to me. If no one has put him on a regimine of l -dopa to se if his PD can be managed a bit better than it iasa, I f it were me, I'd tr to find a neurologist who would at least doit wo get a feel for whether this could help. It helped me enormously. If I hadn't gotten a diagnosis when aai did, I would not be alive now. Instead, while I don't have some of my faculties, I am semi inedpendent, I have good days, and I am 1,000 times better than I was = just a blob in a bed, waiting to die. There is some reason for hope, if you can find a doctor to try it.

what is I-Dopa

@brumarle1

@vette98 Welcome to Mayo Clinic Connect! This is a very difficult time for you and your husband. And I’m so sorry for what you and your husband are going through now. I’m certain that you’ll get some answers here. You asked for some ‘information that you could go by.’ Do you mean more information about Parkinson’s Disease and its progression? Or how to care for your husband at home? Or hospice? I’m sure that the members will help you with anything and everything.

@brumarle1 L-Dopa is a medication used in Parkinson’s Disease. It replaces an enzyme. (?) that was formerly made in the brain. With the drug people, who had all the symptoms of Parkinson’s, were able to walk, no hand tremors. Sort of like a miracle drug.

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

@jatonlouise
My husband has seen a neurologist outside of the VA. At first he was treated for seizures after a doctor and nurse witnessed this during one of his hospital stays. He was given an EEG while in the hospital and then taken off medication for seizures after the neurologist determined this was not his issue. Last year he has numerous CT scans, MRIs and many other tests during his hospital stays and ER visits. I thought he was having TIAs and at one time a stroke. He is now having angry outbursts which I have never seen during our 11 years marriage. He has always been a kind and sweet man so this is so out of character for him. He is 92, so I am afraid that because of his age that doctors are just not trying hard enough. Once when I thought he had a TIA or possibly a stroke the doctor in ER told me not to bring him back unless his symptoms lasted more than 4 hours. I know for a fact there is a one hour window to get a patient to the hospital for the injection to use for stroke patients. We are fortunate that the VA doctors and hospital my husband visits is one of the good ones. This hospital has a very high rating. Good luck in your progress. Glad have received the help you needed. Thank you for your good comments!

@becsbuddy
I would like more information about the progression and stages of Parkinson's Disease. My husband is already in Hospice Palliative care.

@vette98, The Parkinson's Foundation has some helpful information for learning more about the stages and more - https://www.parkinson.org/understanding-parkinsons/what-is-parkinsons/stages.

You might also want to connect with others and learn what they have shared in the different discussions on Parkinson's here on Connect. Here is a list of the different discussions - https://connect.mayoclinic.org/search/discussions/?search=Parkinson%27s%20disease.

@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!