Husband having DBS on Monday, scared but hoping for best. Anything to get him off of Mirapex and have some relief from his Parkinson's symptoms. After 25 years of marriage it has been the worse year and a half of our married life with gambling compulsions out of control. It has destroyed our marriage and trust. I would say Mirapex was a miracle drug as far as controlling his symptoms, but it destroys lives. Hoping no more Mirapex after the surgery and maybe our lives can be a little bit more normal!

Best wishes to you and your hubby!

Just wondering, though, was Sinemet or Stalevo ever tried?

Hi cmm, I hope all goes well for your husband on Monday. Keep us posted. I wonder his doctor didn't take him off Mirapex, though, considering the wide range of other agonists on the market. I took it myself for a short time and all it did for me was make my legs, hands and stomach swell and change my behaviour. Nasty stuff for me!

He does take Sinemet and Azilect along with Mirapex. He was on a very high dose originally of Mirapex and doctor took him off when found out about compulsive gambling, tried Stalevo but couldn't sleep all night with dyskenisas. Tried just Sinemet, but didn't control his symptoms. He, therefore, went on a low dose of Mirapex because he could not move without it, but still has compulsive gambling. The neurosurgeon says its definitely the Mirapex, but I am beginning to wonder if it is just a symptom of the Parkinsons??? He was never ever a gambler in 25 years of marriage!

Welcome to the board!

Compulsive behavior is a side effect of the Mirapex..There are a couple of folks in my support group who have had gambling/compulsive shopping issues, and when they got off the Mirapex the problems stopped

requip causes same problems, good luck on the surgery, been there, doiing it, i know what your going through, but hang in there and remember its not his fault always remember he didn't choose this anymore than you did I know that doesn't help much but just to let you know your not alone in this

Hi CMM,

I wish you the best for your husband’s upcoming DBS.

I had DBS in 2005 at age 59 after 20 years of pd . I have never regretted my decision.

Prior to the surgery I was taking Sinemet, Permax, Amanditine, Comtan 6-7 times a day. After the surgery I was able to drop the Permax and Amanditine completely and reduce the daily doses to 3. If I were not still working I think I could reduce the meds even further. My fingers get awfully stiff and it is difficult to use the computer or I would forgo the meds and endure the symptoms to lessen the affects that 22 plus years of Sinemet is going to create.

My prayer is that he will be able to rid the Mirapex from his meds with the surgery.

May I ask where you had your surgery? Any speech problems afterwards?

Hi CMM - I just had to respond because my husband (age 59) just had his DBS on Feb 7th. The reduction in drugs (especially Requip) has pretty much eliminated all his compulsive behaviors. His speech was initially effected but seems to be improving now that he is again using the Power Lung recommended by Vicky (I think) some time ago on the old BT.

The GOOD News

1. Dyskinesia is gone
2. Dystonia is much improved
3. “Off’s” are barley noticeable
4. Taking about 50% less drugs
5. No longer bound to the clock
6. Meals have less impact on function
7. Less obsessive behavior
8. More facial expression.

All this just 4 weeks post surgery. When he first had it done I thought we had made a huge error as he was pretty non functional. However, as he has healed the progress has been remarkable. No regrets here!!

Kevin had it done in Dallas Presyterian and participated in 3 weeks of rehab post surgery - a great DBS team and great program.

Best wishes on your husbands DBS. Rememeber - healing takes time!

Gayle

Sorry I didn't respond yesterday. Had a seminar to go to and was wiped out last night.

I had my DBS in Seattle at Northwest Hospital. I have some speech problems but went through the Lee Silverman program with a speech therapist and that helped a lot.

I would trade the small speech and balance problems I now have for the less meds and little to no tremors.

Good luck.