For those who care for someone with Parkinson's disease
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By cmonge On 2011.07.17 18:39
Hi everyone,
I just joined today. My husband is 54 and was diagnosed last year but I'll forgo the long story-he's had PD for about 4 and probably a lot longer. He is progressing rapidly. He had DBS surgery which helped with the movement but is losing his memory and cognitive abilities. His condition is complicated by the fact that he is bipolar and can't tolerate any of the meds, he's had horrific reactions to all of them. PD is causing a complete personality change from minute to minute. I really hate this disease, what it is doing to him and my frustration level is at its max. I wonder if I will really have the strength somedays to not lose my own mind. Glad I finally found a sounding board!

By HappyPuppy On 2011.07.18 12:01
I just wanted to share a welcome with you. This is a warm group with all levels of experience. My PD-Dad and I are still fairly new to this tho he does not seem to be responding to Sinemet.... He has had some ups and downs with cognition and mild hallucinations but we have just started the Exelon patch last week and he already seems a bit shaper - here's to hoping.... You will find some good advice and stong shoulders here!!

By packerman On 2011.07.19 10:11
welcome cmonge!
we are in similar situations. my PD hubby is also 54, is bipolar and has also had DBS surgery (2007). it is quite the balancing act, but with meds, good nutrition, proper sleep and less stress, we are managing alright (so far).
he sees both a Movement Disorder Specialist and a Psychiatrist for his conditions.
they coordinate meds and treatments. it has been a long road (18 years), but we take it day to day.

praying for both you & your hubby.

By cmonge On 2011.07.19 10:58
Thanks Packerman. Unfortunately, my husbands psychiatrist and movement disorder specialist do not see eye to eye on a lot of things. I tend to go with my husbands psychiatrist since my husband was stable until the Parkinson's meds came into play. He cannot tolerate any of them, has had side effects from them all. We are so frustrated. But what I am learning is that every patient is different so the more you read and talk to people the better you feel. I thought I was crazy and that what was happening to my husband was unusual, then I read the stuff on this forum and realize it happens to a lot of patients. I am not crazy, the disease is. There seems to be so much we really don't know about it.
By the way, Pat what area do you live in-I may move there just to have a movement disorder specialist and psychiatrist who play well together since that is a rare find!

By packerman On 2011.07.19 12:57
we are in Nashville and he sees docs at Vanderbilt.
we have been quite pleased with his care there.

By cmonge On 2011.07.21 10:52
Thanks Pat. Basically, every Parkinson's med throws my husband into a manic state. So it is best to stick to his Lithium/Paxil mix for bipolar and just deal with the Parkinson's with the DBS. Right now he is suffering from some sort of dementia and they are running all sorts of tests for that to see what is the cause. It is so frustrating. The dementia is progressing. I feel I will get no answers and soon he will be gone, from a mental standpoint.

By packerman On 2011.07.21 14:38
could his stimulator setting need adjusted? maybe that's a contributing factor in his mania?
where do you guys live? are you near a teaching hospital?

By cmonge On 2011.07.22 13:22
They seem to have determined that it is not his stimulator, they turned it off and there was no change. We are near teaching hospitals however, we are doing a comprehensive workup before going that route.

By poppadum On 2011.07.22 16:16
Hi Cmonge,
Referring to Karolinakitty's posting on PD Meds & Side Effects dated 2011.04.08 yet again (sorry, Karolinakitty), I hope that it will switch a light on for you too, like it did for me.
When I took a printout to our doctors and our neurologist, they too were surprised.
It helped to give various PD behaviour patterns a place. My frustration isn't over, but most of what remains is due to my own failing health which prevents me from doing what I could still do 2 years ago.

By karolinakitty On 2011.07.23 07:49 need to apologize, I'm glad it helped you out... that's why we are all here. We may not have all the answers all the time, but knowledge and experience with this disease weighs far above what any doctor, neurologist and movement specialist can ever give us. It's not that all of them don't care, but, it's hard to be up on ALL the things PD folks go through since ALL people have different things happening in their bodies.
As an example our movement specialist never heard of the 2-3am snack attacks...he was surprised when i told him how many folks here have issues with that and couldn't give me an explanation other than it might be night time sleep aids, but again I blew that out of the water because we don't use any.....
If neuros and specialists could monitor these websites I think there would be more answers to our questions.. or at least they would be looked at......

By poppadum On 2011.07.23 09:34
Many thanks, Karolinakitty!
Our neurologist does try to keep up via specialized med magazines, conferences etc. Unfortunately he was out of the picture for a year due to a... brain tumor. We've seen several other neurologists. They weren't a patch on him. He listens, takes our words into account, is prepared to try alternatives and he doesn't behave as if my plentiful migraines are just an inconvenience and has no "how dare you take up my time for such a 'minor' ailment" attitude. But then, he's had the experience of being a patient himself and better still, he also learned from it. And he's a really good friend to hubby; best thing one could wish for in a doctor.

By cmonge On 2011.07.23 15:39
Thanks everyone! The more I read, the more I understand that basically everyone is in the same boat as me, just trying to deal with a loved one who is slipping away mentally and physically with really no explanation. My husband went for more tests this week to try and explain his "sudden" onset of dementia, but I honestly don't expect any definitive answers, nor do I expect the neurologist to give me a miracle cure. I think he is just progressing rapidly and I have to be prepared to deal with it. All we can do is treat every day as a gift and hope for the best. For me, keeping busy and "planning" for the final outcome actually helps. It doesn't feel sad, it eases some of my anxiety. I hope that doesn't sound morbid, but it adds order and comfort to my life that is filled with dealing daily with an unpredictable disease.

By LOHENGR1N On 2011.07.23 16:44
cmonge, This "sudden" onset of dementia? To me it sounds like delirium. Delirium can come on quickly dementia is a slow development or onset. I would question His Doctors on this. If it is delirium from a reaction to medication or even medication reacting to over the counter supplements it is treatable or manageable. If it is just delegated to dementia it will be delegated to more of a you just have to learn to live with it status. Challenge the Doctors! Right now You're the only advocate your Husband has and He's in trouble, not able to speak up for Himself. Please keep us posted and let Us know how you both are making out. Take care, best of luck and hang in there.

By cmonge On 2011.07.24 11:08
They were actually hoping it was a delirium from some of the medications, so we stopped them. Many of the symptoms went away. However, they memory loss and confusion have continued to worsen which is why they are beginning to test for forms of dementia. The doctor is not ruling out some form of delirium, but wants to run several tests to look for everything. I'll keep everyone posted.

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