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By number1daughter On 2008.01.09 13:27
My daddy's Dr is cutting his Mirapex in half and maybe eventually eliminating it altogether. Has any of you had the experience of taking the Mirapex away and what can I expect?

Also do any of your LO sleep all night and most of the day too? Sleep sitting even straight up in a chair....ANYWHERE he sits down.....

By rajenriver On 2008.01.09 13:55
No experience with Mirapex, but my FIL's always sleeping. He is in assisted living right now. We brought him to our house for Christmas and he slept the whole time except to open presents and eat a little jello. When we brought him home, he told the folks at the center that he had a wonderful time at our house. All I can think is that he just enjoyed being there with us even though he may have only been awake for a few minutes.

By number1daughter On 2008.01.09 18:01
Exactly rajenriver , daddy loves company but sleeps the whole time someone is there. It can be a room full of people and he sleeps away. SAD!

By Gidbud On 2008.01.09 18:43

I switched my wife from Mirapex to Requip because of the side effects of compulsive behavior. She does not seem to tolerate Mirapex well. She has some of the compulsive behavior with Requip, but not to the same degree. She is also stiffer on Requip compared to Mirapex. She is Stage 1 PD, sot the dopamine agonist class of drugs works well for her. Eventually she will transition to Sinemet, but for young onset PD the recommended medication is dopamine agonist until the disease progresses to the point where the Rx becomes ineffective, then begin L-dopa (Sinemet).

I don't know if your daddy is in Stage 1 like my wife. She does get fatigued easily, but does not fall asleep as easily as your daddy.


By number1daughter On 2008.01.09 19:02
Gidbud, Hey your photos are nice!

I'm afraid daddy is at the last or next to last stages of PD. He was diagnosed about 8 years ago but I am sure he has had it a long time before his DX...he is on senemet and has been for a fact the dosage was increased recently... I do think he has 1 or 2 of the compulsive behaviors related to Mirapex. over eating to be 1, the other I'm not sure of.....

I know not what to expect....I am really down in the dumps as my mother has Lewy Body Dementia w/Parkinsons...If not 1 then the other is down....this may be a LONG has really overwhelmed me....

It is so nice to have you all....No one knows except those who cares for PD and LBD...what life have we? I feel consumed....

By broncobud On 2008.01.22 15:37
My Mom's Dr. cut her mirapex which has helped with the number hallucinations she was having. I haven't seen any change in her eating or gambling since the change. She doesn't seem to hallucinate as much.

It must be very hard to watch both parents stuggle with terrible diseases. I was reading up on Lewy Body Dementia w/PD and am not sure about one thing. Is Lewy Body Dementia develop prior to PD symptoms? My mom has had PD for over 25 years, but reading some of the signs of LBD, it sounds like my mom.

By number1daughter On 2008.01.22 19:49
Hi Broncobud,

It is VERY hard having 2 parents with such dreaded diseases. There is not much time left to live YOUR own life.

In our case, daddy was diagnosed with PD about 10 years ago but I think he showed signs of it before that. He is now showing signs of cognitive disorder.

Mother has Lewy Body w/parkinsonism. Not long after the Parkinsonism showed up she began having hallucinations, delusions and illusions....

1. "Dementia with Lewy bodies" (DLB) is diagnosed when cognitive, psychiatric and sleep disorder features appear BEFORE or around the same time as the parkinsonism. (While parkinsonism is a symptom of DLB, it is not required for a diagnosis of DLB.)

2. "Parkinson's disease dementia" (PDD) is diagnosed when Parkinson's symptoms exist for at least a year (but usually longer) before cognitive and psychiatric symptoms appear.

Lewy body disorders include Parkinson's Disease, DLB and PDD, and are considered a spectrum disorder because they all have Lewy bodies (misfolded proteins called alphasynuclein) dispersed throughout different parts of the brains.

For those who would like to read a more detailed description of the symptoms, please read an overview of LBD, found at

I hope this helps. I am dumbfounded with all this. This was not in my plans for my adventures in life....It does help having all of you to share with. Knowing others have a good knowledge of what I am going through.


By sooboo On 2008.01.22 21:45
Man, you have really earned your moniker! I don't have much to add, except that my mom's nuero has been removing meds that don't seem to be working anymore. The logic seems to be why bother taking meds that don't work. It's costly and they can be hard to get down in the later stages. My mom was diagnosed 5 years ago. I think she is hovering between stage 4 and 5. I once thought she had LBD because of the fast progression and dementia, but I have been thinking this less and less lately, and from reading the link you posted, she probably just has fast acting PD. This is not what I planned for my life either. Juggling both of them can't be easy. I really feel for you.

By number1daughter On 2008.01.22 23:36
Thanks sooboo,

No it is not easy and I have a long road ahead. Do you think there will be anything to salvage of my life years down the road? I have so much stress and I have been reading of the dangers to caregivers health. Hopefully I can stay in 1 piece.

I agree with you, why take meds that have stopped working.

Daddy is taking such small tiny shuffling steps now. How long are they able to walk? He has lots of problems. Incontinence and sometimes keeping food down.
My gut tells me he will be very hard to care for when he gets REAL down.

Thanks for caring.

By sooboo On 2008.01.23 20:46
My mom has been in the hospital for the last three weeks (she's home now) and it caused me a tremendous amount of stress. I had to make decisions I felt not prepared to make, she looked terrible, and I was mostly by myself in caring for her. Things are improving (I hope) but I started to have real stress symptoms like nightmares, upset stomach, irregular heartbeat, and a rash on my face. I have been trying to think of ways to lessen the stress in my life. So far, I have cut out sugar and caffeine and I have begun to meditate twice a day. I keep reminding myself we have to take time for ourselves, or we aren't any good to the people we are caring for.

As for your question about walking, it seems to vary with different people. My mom has been in a wheelchair for the last three years. She can take a few steps, but it exhausts her. Our experts said that just because the walking went so early on that it doesn't necessarily mean she is advanced . Sometimes that just happens. There is a lot of info about the 5 stages and small tests you can take to see where your person is on the scale. Just google the five stages of Parkinson's. Again, I don't think it is really accurate, but they do provide a good basic guidline of things to come.

I have too begun thinking about what is ahead and I know that I have to start planning now because it's really hard to find good solutions in a crisis. Right now my mom is in assisted living, but we may need skilled nursing soon. I am going to start shopping for a place in the coming months. I have not wanted to face this part of the disease, but I have come to the realization that it is a progressive disease and all the PT, prayers, nursing, hospital stays, exercises cannot stop it, only slow it. It's best to be prepared.

I don't know your situation but it sounds like you need more help . It isn't fair to put your whole life on hold. I have managed to get some things done in the last few years (the things I have worked for the longest) but I have put off many others, travelling and a baby being chief among them, off. Sadly, I know that someday I will be able to do these things because she won't be around anymore (although I maybe too old for the kid). I try to hold off my resentment as much as possible and enjoy the few things we can still do together. Some days I am much better at this than others. We all do the best we can. Hang in there.

By number1daughter On 2008.01.24 15:14
You can easily be full of resentment about the situation as I was to the point of being angry all the time. I still have resentment but have learned to go with the flow a bit better. This should be a time in my life where I am free and can do all the things I want to do. Instead I am tied down.

We still have mother and daddy at home. I have a brother that helps and my husband does his share. I could never do it alone. Still it takes a lot of time from all of us for 2 such handicapped people. We all know it will get much worse.

I too am very stressed. Everything I do or try to do in having " a life " is stressful. In honesty, what makes it even harder is not knowing how many years this could go on.

I do count my blessings and know things could be a lot worse. I love my parents very much. I hope I don't sound like my main concern is "ME" "ME" "ME".

You hang in there too sooboo. I hope 1 day you can fulfill all of your dreams....

By RhondaM On 2008.01.24 16:31
Don't worry about it sounding like "Me Me Me" because this is a CAREGIVER's forum. That is what it's here for. We all know you love your parents or you wouldn't be taking care of them, and the fact that you are stressed is proof of how much you are doing. This place is where you can vent and not worry about what anyone thinks. No one here will judge you for feeling resentful or worrying about your own future. After all, we have lives, we have to take care of ourselves. If we don't, who will? And what will our loved ones do then? It's a very hard and thankless job to be a caregiver.

I'm very sorry you are going through so much stress. I can't imagine having two parents in that condition at once. I'm so sorry.


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