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/

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.

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

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.

Hi again. I would say my husbands symptoms of personality changes have to do more with obsessions than compulsions. We would joke for years about his not being able to go to sleep unless he checked to see if he locked the doors - but that was infrequent and not an actual obsession/compulsion in our minds. But recently, and by that I mean since starting on mirapex/azilect he seems to be obsessed about being a father figure to two teenagers that we know. We never had any children of our own, by choice, so the intensity with with he has assumed this role has caused not just myself but others to comment on his possessiveness and protectiveness with them. If it was just my observations I would say that I could be jealous, or struggling with insecurities, something along those lines. I know this seems insignificant in comparison to the warning obsessions listed on the drug paperwork but it truly has caused problems in our marriage. I have also spoken with a PwP who became obsessed with mathematical equations and had to get off sinemet, so I guess anything is possible since its the brains pleasure center that is being stimulated by these drugs.

Heidi, do you join your husband during his neurologist visits? I've discovered that it's a must to have my wife there with me. She notices a lot that I miss plus she always knows as much as I do (or more) about what the doctor says.

It's her time to chime in!

Steve

What everyone has offered so far is great. I might add a few things:

Mirapex is an agonist (stimulates dopamine receptors). Before you ask to switch agonists...

-have you talked with the neuro about a slow release agonist where he takes one pill a day? This can help smooth out side effects.

- know that it is very easy to over medicate. When I visited my GP she was concerned that I had drug induced bi-polar disorder, so I dropped down from 12 mg of Requip XL to 8 mg slowly with no adverse effect on my symptoms, yet before had no clue I was over doing the drug in the first place.

-Exercise is vital; this can really help with anxiety and depression.

-Anxiety and depression go hand in hand with PD itself and agonists can make anxiety worse.

What doctors do not tell you is that agonists also are much likely to induce hallucinations, hypomania, and a delusional jealousy known as Othello-Syndrome.

Frankly, the compulsive behaviors associated behaviors, imho, are the tip of the iceberg with this class of drugs. Your doctor should inform you of all your treatment options; give you the low down on each and let you both have a say on your treatment. Yes, Sinemet has a serious drawback, but people used to take much higher doses and there were no behavioral reports published then, even current reports on that are sparse. If I were you, I would tell the doctor your concerns re: personality changes (call him to talk privately if necessary). Give him a few examples; then ask what can be done.

Hope this helps somewhat...

Laura