parkinsons & personality changes

[heidil]

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.

[lurkingforacure]

Originally Posted by heidil

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.

We asked a former neuro about the mirapex compulsion thing, as we had read about it (this was also years ago, it was known even then). His comment was that the drug's effect was more of an exacerbation of already existing traits instead of giving someone those traits who had never had them before. So if you liked to gamble or shop before starting mirapex, you might find yourself gambling or shopping much more....but if you were never a gambler to begin with, you would not suddenly find yourself at all hours of the day and night gambling online.

I know many, many PWP will disagree with this, but since we have not had any of these issues and have been on mirapex for many years, for us, at least, it has held true. I know things change, though, and often rapidly and without warning, so we could wake up tomorrow and find 20 pairs of new shoes in the house! But so far, and again, for us, we have thankfully not had these issues.

Think back your your husband's personality and see if the mirapex is merely magnifying those traits or is actually creating ones you have never seen a glimpse of before. That may help answer some of your questions.

[heidil]

Thank you for that insight. It is true my husband has always been a people person - that was one of the most appealing parts of his personality to me. But it does sound reasonable that the mirapex is magnifying traits that were there but not quite as prominent as they are now. That gives me something to think about - I really appreciate that.

[Jim091866]

Oh Danielson, the one who spoke before me in the prior post is very wise. I recall that the symptoms that I showed were indeed magnification of the very things I had struggled with before mirapex. They just got bigger when I started taking the drug. Remember these little pills are altering our BRAIN chemistry. That is an awesome and frightening thought when you really begin to wonder what this medication is capable of. Yikes!!!

[heidil]

hello everyone. My husband recently admitted to being obsessed over an issue we've been dealing with for the past year. Altho this could change tomorrow since what he believes/agrees to one day changes the next. We were shown an article about manganese toxicity so he now feels a blood test will be the "cure" to his parkinsons.

Manganese is present in the flux from welding rods and is an additive in gasoline. He has welded for years, and has done mechanical work since he was a teenager, washing his hands in gasoline. I was able to reason with him that if this is not the answer he is hoping for, that perhaps we can get off these parkinsons meds and try something natural with the understanding that we could always go back to the meds in the future if needed. I truly believe that these meds have changed his personality - I only hope that getting off them will bring back the personality I've known and loved for almost 24 years.

[Songfellow]

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

[heidil]

Yes I always go with him to see the neurologist and I add things that might get overlooked otherwise. We had emailed the neuro about the blood test for manganese and he said I highly doubt that this is the case but if you need to do it because you need to know then I can work with you on that. I was pleasantly surprised that he had a neutral attitude because some Drs feel you are challenging their diagnosis. Since my husband is only on Mirapex .125 mg/3 times a day we cut the night time dose in half and will stay with that for a couple of weeks before reducing further. I had spoken before with the PA at the Neuro's office about this obsession almost a year ago and while she didnt dismiss the idea when she brought it up to my husband he was unreceptive. She did tell him tho that your wife would be the one to notice any changes in you so listen to what she says because we are messing with your brain chemistry after all!

[johnt]

Heidi,

I was diagnosed with Parkinson's nearly 8 years ago at the age of 49. The diagnosis, more than the disease itself in those early days, was devastating. Instantly, my dreams of skiing across Greenland at 65 or sailing around the World at 70, and a thousand other things, were shattered. What took me longer to realize was the extent to which my wife's dreams were shattered too.

Parkinson's affects the whole family.

Parkinson's itself can lead to personality changes. The drugs can have the same effect. But also, I suggest, the circumstances can change the personality of other members of the family as well.

So when you write "he is fighting me on all fronts", I want to hear your husband's side of the story too.

I note that he is on a typical drug regime. I'd be interested in knowing why you favour the "natural" approach.

My one piece of advice is that you both join a support group. There you will find people who live well in spite of Parkinson's.

Finally, you mention talking to someone obsessed with mathematical equations. I do maths exams in much the same way as people do sudoku. Compulsion? Obsession? I think of it as fun!

John

[Songfellow]

Heidi, I'm glad to hear that his neuro is so open-minded. It can make all of the difference in the world. I know that mine has been exceptional as far as listening to what I have to say.

By the way, my family went through similar stuff with me a while back. I just felt angry all the time. My wife is the one who discovered after she talked to our pharmacist that a couple of my meds had a history of bad interactions. When I dropped the one med, my personality immediately improved.

The large drug store chains (i.e. Walgreens) have huge computer databases of drug interactions, etc. You might want to speak to them. It is in their best interest to help you.

My wife says she can handle my grumpy spells by just ignoring me. I can accept that! (smile)

Steve

[Mari-Mari]

Even though we have Parkinson's, there are many differences among us. I was dx. 14 years ago----my type is very slow moving & very mild---but I definitely have it.
Mirapex is a wonderful drug but.....it took me 3 tries to get on it and fortunately, not as long to get off it. I received wonderful advice here (I think from Jaye & others) & even though my drs. recommended 1 mg tablet 3x daily, I cut way back & finally "got on" Mirapex by taking .125mg once a day for a week. Then .125 mg twice a day for at least a week. You get the idea. Once a dose was comfortable and/or helping, I would stay on it as long as possible. I take it on an empty stomach, which is helpful with any of these meds.
I worked with my drs. who were very supportive, even though I wasn't on very much Mirapex. But it did help, especially with walking & my tremor. After about 8 years, though, I developed hallucinations and had to taper off the Mirapex, which I did very slowly. I was finally on 1 mg, 3x daily when I had to taper off because of the side-effects.
Again, the important words are--Go Slow!
I then did a slow progression onto L-dopa. Unfortunately, I have not been helped much with the L-dopa. It's not of much help with my tremor or dystonia. I have tried other meds & combinations and will keep on using the L-dopa. Depression & anxiety are always lurking, which is another factor to deal with.
Good luck, Mari