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

John T - thank you for your input. I would love to hear my husbands side of the story too! As I mentioned in an earlier post he does not want to join a support group because he doesnt want to see others that have PD - it upsets him to think he may look like that one day. As it is now he can move freely, usually only tremors when stressed, and doesnt display many outward signs of PD. So the reson I would like to persue something more natural is that as time progresses so will the need for more medicine. If he has quality of life now, and can do without being medicated for as long as possibel, why not do it? Also the person I mentioned that was obsessed with math - those were his words and he described the obsessions as all consuming trying to find patterns/equations in every thing

he's on a pretty low dose of mirapex 3 x .125mg? does he get any benefit from that?
and i assume azilect because they think it's possibly neuroprotective?

never hurts to get a 2nd opinion, maybe he can get by with nothing.

i think a lot of us tried everything in the book for symptom relief before taking meds.

even if your husband doesn't want to go to a YOUNG ONSET PD GROUP, you can and at least check them out, see if others switched from mirapex to requip or sinemet and did better, compare neuros, supplements, etc. maybe get a better understanding of your husband. there might not be anyone with advanced symptoms so your husband could go.

i've only gone to one parkinson's support group meeting, just lazy i guess, but there was a FIANCE of a pd patient wanting advice on how to convince her "husband to be", who was just diagnosed with pd and not there, to not cancel the marriage, he didn't want to burden her. interesting.


keep in mind the one active ingredient in sinemet is a naturally occurring simple amino acid, LEVODOPA, found in plants, and CARBIDOPA, which inactivates an enzyme which breaks down LEVODOPA so more gets into the brain. it's pretty natural imho.

the key imho is to find the right organization to help you, not just a neuro. not sure if there is one in your area, here's one in the seattle area
that tries to address the whole patient, something you can hopefully find in your area:
https://www.evergreenhealth.com/for_...s_care_center/

one thing about "obsessiveness" and any incurable chronic disease. with the advent of the internet, there is site after site claiming there is a cure for your disease and testimonials, blah blah blah. i know after my diagnosis i spent hours on the internet, obsessed, thinking i would get lucky and find some obscure report about someone getting cured, some hope. and i tried a lot of things, spent a lot of money, there was no end of people who thought they could help me and wanting to do endless trials and tests, from chelation to massage to magnets, i could go on. nothing helped, including chelation therapy which i was assurred would remove the mercury that was causing my pd. just the diagnosis totally changes your life to say the least.

i second the value of exercise, it might slow down the progression. i was very athletic when i was diagnosed so i was already exercising. whether he needs to be on meds to exercise aerobically might be an issue.

did you say your husband was still working since that would make the medication issue that much more important.

Yes the dose is low, and it seems that he gets some benefit from it - but its hard to tell if some of it is coming to terms with having a disease or if its truly beneficial. For instance, we did cut his .125 mg pill in half for his evening dose. He has slept better all week and did not thrash around at night. It was wonderful for both of us!! Im encouraged by this, and hope to gradually continue to cut back. He is on Azilect because the orig. neuro felt it was neuroprotective. The neuro he sees now is a movement disorder specialist at a teaching university and seems ambivilent about its benefits. I havent seen on this site if anyone else is using that drug or if there were problems getting off it as well. I really appreciate all the helpful advice I've gotten here. I know im somewhat of an outsider since I am not the one with PD and cant truly understand how my husband or anyone else feels with having PD - so any insight is recieved gratefully!

Well, the test for high manganese came back with normal levels, which was what we really expected, altho it was nice to hope for a little while that the PD symptoms could have been due to a blood abnormality! We have now cut back another half pill and amazingly I am seeing bits of his old personality come back - Yahoo!! Two other friends have said something similar recently, not knowing that we have been gradually decreasing the mirapex. So i am a definite believer in this drug being the cause of his personality changes. As JohnT commented earlier PD affects the entire family, and I am responding positively to the changes I see in him so its been a win-win situation.

Here's my observstion and experience: both PD and the medication can cause personality changes. They can be very subtle and incremental...sometimes it may start as a mild deviation or grown from one's original character attitude to become noticeable behaviorbsession or compulsive ...whatever you named it. They are consciously "unwanted" behavior, differences in the degree of control.

There Is not much help from neurologist as it proves to be too complex for them.

Ling2 - thanks for your insights. May I ask if you are the one with PD? If so, were you able to recognize the changes in yourself? If others were the ones to bring it to your attention, did you resist their observations? It scares me to think that these personality changes are more than from the meds alone.

Hi Hiedil - it seems we have a lot in common. I have been married for 25 years and my husband was diagnosed at 40 yrs old. When he was dx'd, he went through all of the phases...disbelief, scared, anxious, angry. ( No violence - just feelings) I should say "we" went through all of the phases, because my feelings were there with him every step of the way...right up until the angry phase. I didn't understand all his frustrations at the time, which were: What if I can't work? How are we going to raise 3 kids and send them to college? Will I be able to walk our daughter down the isle at her wedding? ( She is 8 yrs. old) How am I going to be able to coach and play sports with our boys? Am I going to miss out on their lives? I don't want you to have to take care of me! Etc. It was really tough for awhile. Then our MDS sat down with us and explained that this was not a death sentence and our lives would be manageable with meds, patience, love & support. I vowed again on that day, just like on our wedding day, that I would be there every step of the way! I have to say that our turning point was when he started taking Azilect. It was unexpected and all of a sudden I realized that he was back to his old self and has been ever since. It changed everything! That was 8 years ago. I want lie, it's not always easy, because all of those worries are still there and they take their toll sometimes. I have just learned to become more patient. I'm sure you know, Stress is his worst enemy and I remind myself of that every time I want to get upset about something petty. It's just not worth it! However, I am not a saint - I do have my moments...I just choose my battles carefully! Wine helps too!
We have actually talked about my husband getting off Azilect to try other meds, but the more I talk about it, the more it seems it has been a real benefit. I truly believe it helped his anxiety and he has never had any compulsive disorders. If he only has slight tremors, I would question being on the Mirapex, at all, too! I hope you can work through this! It is a very trying time, but if you can get the right med regimen, take the back seat for a while and let compassion take the front...I think you will be okay. (Except for compulsion issues - of course, you have to jump back in front) We are here for you!

Take Care!
Cynthia

I'm a PD dx 12 years ago. At first, my wife noticed my obsession in photographing and I defied her observation. However, when I looked back my buying behavior of photographic equipment, I must admit such pattern could not have occurred to me before PD or taking PD drug.

Don't over panic! Though I believe both - the disease and drugs itself, can cause personality changes, the tipping point is still the drug.

Have faith in yourself , think positive.

Hi Ling2 - I have another quesion for you. You said you were able to look back and see where you may have been compulsive/obsessive about buying photographic equipment. What gave you the ability to step back and examine the situation? Had you changed anything about your meds/routine? Or did time play a factor? Im really curious to know.