Parkinson's Disease Support Group

Cindy,

Due to the side effects of agonists that happen to about 30% of young onset PWP, there are many divorced parkies that are living alone or in new relationships!#1 to be your own caregiver is to get the best neuro that you can find! I'm in east Tennessee and my neurologists are in Augusta Ga. That is a 5 hour drive , one way! But both of my neuros are also speaking at the yopn conference! #2 Do as much research on PD as you can , while you can! #3 Get as much exercise as you can , this seems to slow the progression! Eat well and try to consume as many antioxidents and you can afford! #4 Reduce as much stress as you can from your life! Stress has been related to progression!

Your Friend in PD!
Michael

My circumstance is the same as yours, Cindy. I live alone and wonder if I can be my own caregiver. Has anyone else something to add to Mike's excelent advice? Kwan

Michael, thanks so much for your response. Oh, I have questions! I took an agonist for a few months but quit, as I teach and it fogged up my brain too much. But why would side effects, as you suggested, correlate with parkies living alone?

I am trying to do a lot of research. Some days I want to know everything, and other days my head is firmly in the sand!

Exercise. Whoa. Due to fatigue/apathy/depression it's so hard to exercise. What do others of you do about this? I used to think I had some self-discipline but now (!) I used to walk fast everywhere so needed little structured exercise. Now I walk with a cane and it takes some effort (knee wants to hyperextend). Do you or others have "glitch?"

So Mike, I'll ask more later. Thanks again for your kind and very helpful suggestions!

Happy 4th of July--

Cindy

Cindy,
Go back in the discussions and seek articles on Mirapex and Requip! You'll see stories of the side effects of the drugs and the OCD that they can create in about 25-30% of young onset PWP!I'll post my story here just to save you time ! Please don't judge me on the contents! After I wrote my story , som 30-40 other stories came out and there were 20 or so that I know had the sides that didn't revele their stories, and tht's just the ones I know!

Here is my Mirapex story !
I to was affected by Mirapex ! I was Dx with PD in July of '01 , after that I went looking for support and information on PD ! With more information , I determined that I had never more than took emails from her till then ! Well one time in November of '95 , after recieving my 1st PC , I typed in BIGTITS.com ,with encouragement from a friend and was amazed at what was available on the internet ! I shut it down and never thought about it till later in '05 ! I was put on mirapex in December of '04 ! No warnings were given by the neuro pertaining to this drug , verbally and having never been on any type of medicine for anything before, I didn't think to read the insert ! O f course , then it didn't mention :edema, insomnia, OCD, weight gain or dozing ! I was sceduled an appointment 6 months later ! During the time I was on mirapex , I gained 40 lbs. the first 5 months , had edema in my lower legs , and slept one day out of 5 and dozed unconsionously all day ! I went back to the neuro and he gave me fluid pills for my edema , which was so bad , I could only wear flip flops ! He gave me a sleeping pill for my insomnia and lexpro because , I teared up when talking about my Pd/mirapex sides and symptoms ! But I didn't have the courage to tell him ,I was ashamed of my behavior , sexually ! During this time , I met alot of PWP on Mirapex and in chatting and supporting each other , found that the chat lead to sexual subjects and after purchasing a web cam , started showing my private areas to some of the female PWP ! And watching them as well ! I was brought up better than that and so were they ! IN ALL CASES! During this time , I recieved a divorce settlement of $68,000 ! In 15 months time , had only a Harley Davidson and $1200 worth of Harley T shirts to show for it ! During the 2nd 6 months , I paid local collage girls that were bi-sexual to have sex in front of me ,to the tune of $1000/session, while I masterbated , paid prostitutes to masterbate in front of me , to the tune of $100/session ! Bought drinks for the local bar all night long and bought lotto ticket $500 to $1000 at a time ! I was vertually broke at the end of December '05 And there were other things much worse , that I won't mention ! Then I met a man whose wife had PD here in Bristol . He suggested I see a neuro in Augusta Ga. ! A five 1/2 hour trip from here , saying he was a great neuro that had made a difference in his wife ! I went there in December of '05 ! They did a background session on me , where it came out , my mom probably had eopd at 42 ! In investigation , I had RLS at age 14-19 and my actual PD symptoms started at age 32 ! Then they asked what med I was on ! And I told them ,Mirapex ! Then they proceeded to tell me my side effects ! With out me saying another word ! "How did they know ?" " Why did my neuro not tell me these things ?" They said Son , you've gotta get off of this stuff ! So they weaned me off and prescibe new meds and put me on a comparison study ! In a month , I found myself again , realized what I'd done and wrote my first mirapex story and posted it ! I could not believe how many more stories I heard other than the 45-50 I already knew ! If the pwp that i know are any comparison , there are 25-30 % that experience some type of OCD side effect and in early onset only , it is much greater !They all are not sexual , but OCD , still the same ! I urge you to reasearch further with an open mind ! If you don't see the pattern , I guess you never will ! I'm sorry a finger is being pointed at all Mirapex users , but If they don't have any of these side effect , in one way or another ... THANK GOD !!! The compulsion may be chat , fund raising , cleanliness or shopping ! But they are OCD too ! My wife said she wished my OCD was cleaning instead ! Thank GOD she understood ! I had a Asst. DA and a support enforcement judge that discounted the possibilities of a drug causing these kinds of behaviors, until I provided research and mirapex stories ! The female judge had made the statement that " my sister is on Mirapex and doesn't have these side effects ! (with a smart assed attitude) After reading and approaching her sister , found that her sister had online gambled to the tune of $16,000 in 4 months !!

Your Friend in PD !

Michael

Hi l live alone, and cope extremely well.. I guess i had pd when l was 43,,, i am now 48. You see l refuse to let it get me down, medication is great.

And there will be a cure, i am confident of that

Cindy,
You have received a lot of info on your meds and what you should or shouldn't do. Do you trust your dr? that is the question I ask everyone first. If not then find another one. He/she should tell you about the side effects and such if not you probably need to look further. Mirapex has many side effects I take it 4 times a day and I have found that yawning about 1/2 hour taking the pills is the least of the problem. I tend to over eat as many do and have gained weight. I also could be a shopper if given the chance, but fortunately I caught it and control it. Pd meds are powerful and you need to monitor effects with your dr. Good luck you will figure it out. We all work on it daily. Sass.

Thanks to all for your responses! I certainly will watch out for Mirapex--thanks, Michael! Am now on combo of Amantadine and Azilect--unsure that it's doing much. This a great place for support and advice. I do appreciate.
Cindy