parkinsons & personality changes
 

Hello everyone. My name is Heidi. I am new to this whole posting process. I decided to join because I'm in need of support and comfort. My husband of 23 years was DX with parkinsons less than 2 years ago at age 44. He is on Azilect, 1 mg and mirapex .125 mg x3. I have noticed tremendous changes in his personality - things totally out of character for him. I want to get him off all meds to see if this makes a difference but he is fighting me on all fronts - again something that is totally unlike him! Our marraige is suffering terribly. Is this part of the disease or could it be med related? I appreciate any insights.

http://www.lawyershop.com/2009/05/07...ers-of-mirapex
behavior changes are often one of the first indications that someone might have parkinson's independent of any medications. i believe these are more changes in higher executive functions such as more indecision, not obsessive/compulsive behavior.

this is something you should be discussing with your doctor imho. and possibly getting another opinion if he/she won't discuss it with you.

you can also pose your question here.
http://forum.parkinson.org/index.php...sk-the-doctor/

get thee to a caregiver forum
 

Hello Heidi,

I am so sorry to hear what you are going through, as it does not have to be this way. PD will change your marriage and family life, yes, but you can still have a wonderful life in spite of it. You need to arm yourself with information, compassion, empathy, patience, undestanding, humour, and friends who GET IT (there are never enough of those, though!). My best advice to you is to check out a caregiver forum as well, there is one specifically for PD, here's the link:

http://www.myparkinsons.org/cgi-bin/forum/forum_show.pl

You will find amazing people there who are caregivers to a loved one with PD, could be spouse, parent, inlaw, partner, what have you, at every stage of this journey.

I think you may find that maybe, just maybe, it's the mirapex causing this, talk to the doc for sure. I'll warn you, though, mirapex is a real b%#@! to try and quit, we have tried three times and failed, and it was a hellish experience, every one of them.

Good luck, I hope things improve for you both. Remember the man you love is still locked, trapped, inside his PD body, and did nothing to deserve this. No doubt he is wondering what in Sam Hill is going on, too:)

Thank you for writing back - i will definiely check out the support group website. I would love to go to a group but my husband cant stand the sight of anyone with PD, especially with noticable tremors, so online support would be helpful. Could you explain what you meant by failing to get off the meds? Was the return of the PD symptoms overwhelming? I have spoken to his Neuro but the Dr feels that the dose is so low that it couldn't be affecting him this way.

drugs
 

You can read testimonials about PD drugs and will quickly realize that everyone responds differently to them: how fast they hit, how well they work, what foods interfere with them, etc. I would never blindly trust what a doc says about a drug, and have learned that the best person to talk to about a drug, its side effects, interactions with other drugs, plasma levels in the body and even washout time, is a trusted pharmacist.

As for mirapex, we have tried three times to quit mirapex, going very very slowly which is what virtually everyone has said you have to do. So we would reduce our mirapex by, say, .25 per day for a week....then the next week reduce by another.25 per day...

The first couple of days on the reduced dosage, are always great, but then mirapex withdrawal sets in and it is horrible. Symptoms are: incredible pain, stiffness, aches, feeling like you weigh 500 pounds instead of the usual PD 250, you get the idea. The brain fog goes away, sure, but that only allows you to be more acutely aware of how shitty you feel! We just could not stick with it, and from what I have read, are not alone.

I have been actively researching PD for many years now and have only read of three, count em, three, people who were able to get off of mirapex. That tells us something. One person said her doctor told her getting off of mirapex was like getting off of heroin, and he had to supervise her closely and even then, if I remember correctly, it took almost a year. It's crazy addictive somehow and wicked to wean off of. Of course, none of this was mentioned when we were casually handed the rx those many years ago. It was touted as a wonder drug because it helped delay taking sinemet, or so we were told...

Tread carefully with any and all drugs, and know as much as possible about any drug actually taken.

While medications can contribute to personality changes, and PD itself can cause changes, do not discount that the symptoms of PD, which often by their nature lead to frustration, fear, and really a bit of a shock too in the early stages can also have an effect on personality, as can anything that interferes with communication, which PD can do in many ways. It maybe that some changes are to do with this aspect of PD, or even the feeling that maybe people are treating the PwP differently.

It is a mixed bag, PD, but most people who have it still feel they are they same person inside, but with changed circumstances. This not to negate anything that people experience with actual personality differences.

There is always a process of coming to terms with it, and I hope your partner will actually get to know others with PD, there are some great people with good attitude who have PD who have worked tirelessly to help other PwP feel that there really is life after PD, and it can be rich and good.

Wishing you both a good year in 2013

Lindy

I had a lot of personality changes on meds, especially mirapexin. My personality reverted completely to my pre-pd state once I got off all meds in sept 2009, though it took a while.

just to add another perspective, i know people who do just fine on mirapex.
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i was also in a clinical trial testing a new dopamine agonist against requip, another dopamine agonist similar to mirapex. so i could have gotten a capsule with requip or the new drug. the trial lasted 3 months,we got increasing doses until we reached a dose that was the "best" then continued at that dose. then we dosed "down" to zero, then went to 6months of open label administration of the new drug. i found out i was on requip and had no problem getting off it nor the new drug when the trial ended.

i'm sure people switch all the time between mirapex and requip or drop them and go to sinemet. i like many pd'ers was initially put on mirapex, dropped it because it put me to sleep which overshadowed any possible personality changes.

there's always the chance your neuro is right and along with soliciting opinions from this board i would solicit a 2nd opinion.

I was put on Mirapax and had similar reactions to your husband's. I switched to 8 mg of ReQuip XL and have been able to SLOWLY titrate down to 4 mg of ReQuip XL where I've been for the last three years or so. It was really hard to reduce the dose but not impossible and I'm glad I did it. You should also check the Pedaling for Parkinson's thread and other exercise threads on this forum. Pedaling kept me sane and continues to stabilize my symptoms for the most part. Al the best.

You are at the right place.
 

Heidi, you are at the right place for support for help in dealing with this disease. What sort of symptoms is your husband experiencing? Were they present before the diagnosis? Are they compulsive behaviors? When I was on mirapex I could stay up for three days straight constantly doing something, was sexually compulsive-in overdrive to the extent that it bothered ME! I did not gamble but was constantly on the internet. I desperately hope that you can overcome this situation. I hope that you find the answers you need, if the docs aren't helping you find one that will. By the grace of God I realized what was going on and stopped taking the medication. You could not pay me to take it again. I'll be praying for you and your situation.