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By vickilynn On 2010.11.29 21:38
My patient is under the care of a new neurologist and at first I thought he was going to be great but now, I'm not so sure. He said, "My goal is for you to walk into my office." I thought...that sounds great but what I didn't count on was the "psychosis" that can be triggered by the increase in Levodopa/Carbidopa therapy. He is actually making it much more difficult for me to care for her in a home setting. The medications he now wants to put her on are way too expensive, she cannot afford Stalevo because she is in the medicare "donut hole." Then he added Seroquel to control psychosis....also very expensive right now. He thinks that "quality of life" is her ability to walk on her own, go to the restroom on her own, etc. I would agree with that but her cognitive function due to the dementia is so poor that she doesn't recognize when she is doing something dangerous....what's the point in walking into his office if she is going to get out of her chair when I'm not looking and fall? As it is...she was on a low enough dose that we were able to manage and she could walk as long as I led her by holding her walking backwards. The higher doses cause her to have psychosis and panic attacks when they begin to wear off. Any advise?

By oshroshr On 2010.11.29 22:24
I feel for you. My husband had the anxiety several years ago and we did all kinds of things. We did a counselor one to two times a week and then we did acu puncture. These things in hindsight did not do much. Seems like with the dementia the key would be safelty. Can you return to the neuro who seemed to help control this?

By vickilynn On 2010.11.29 23:40
I have a call into her old neurologist (in Texas, we are in Oklahoma now) and I am also going to look at The Movement Disorder Clinic in Tulsa (a 2 hour drive). The doctor there trained at the Mayo Clinic. I just don't think this other doctor is going to work...he is missing the big picture, only looking at one aspect of quality of life.

By karolinakitty On 2010.11.30 00:16
One thing we have to remember when dealing with doctors... we pay them.....
Yes .. they are the authorities but we have the right to say no way .....
I would consider either calling and talking to the nurse, or seeing if the doc will talk to you. Tell him her cognitive issues straight up and your fears of her falling or getting into situations she shouldn't be in. While it is great that he wants her to walk in his office, at what price is she paying.
I highly recommend a Movement doc, as we too had outrageous things happen at the regular neuro and after my hounding them we finally got a referral and NOW because there is another doc involved, the regular neuro seems to pay more attention to US instead of the books. Our MDC is about 1.5 hours away so i sympathize with the travel, but like i said... it is well worth it.......
One question... has she been on anything for the dementia????/

By vickilynn On 2010.11.30 01:12
Thank you for your response....yes, she is on Aricept for the Dementia but I'm really not sure if it is doing much at this point. I have talked to the doctor but he is set on what he thinks should be done. I even had the Pharmacist talk to him. He is still set on his way of doing doesn't matter to him that she cannot afford what he is prescribing. He said that one of the reason she is having problems with some of the meds is because they are generics. Also, he seems aggravated with me because I need his help outside of the office visits. I told him that Clonapin made her psychotic and he prescribed it anyways...said to give it to her at night. All that did was make her psychotic at 3:15am.

By karolinakitty On 2010.11.30 07:51
not to sound like a know it all but it even says in the APDA booklets that patients stay away form clonapin.....
I know about the generics... my guy can't take them......bad bad side effects and i know about the gap in medicare we are in that now too.....

definitely see another doc ... fast ....find even a local doc and see if they'll see you asap, tell them the situation......

as an extra ... check and see if she qualifies for emergency aid from your county or state agency.... contact the makers of her drugs to see if they can help.....
before he got his medicare, ours gave us the county 20% discount as well as calling some folks to get me at least a reduction in the cost from the drug company..... Now i have a local pharmacist as i won't deal with these big pharmacies or walmart.......

By susger8 On 2010.11.30 08:54
This is the kind of problem I was having with my father's previous neurologist. He was really not aware that older PWPs who have had the disease for a long time might need to be treated differently from younger patients. He had Dad loaded up with a lot of PD meds and his mental status really suffered. When I switched to a movement disorder specialist, he took Dad off everything but Sinemet. Dad's physical abilities didn't really suffer, and his mental status improved somewhat (at least he had fewer hallucinations). And we are spending a lot less on prescriptions too. (Dad seems to do OK on generics, fortunately.)


By parkinit On 2010.12.03 21:59
vickilynn -

Not to put a wrench in your plan, but I've been to the MD Specialist (with my spouse) that was trained at the Mayo clinic. He was our dx right before my spouse started having major problems. At first, we thought he was great because he basically would do whatever we asked. Change meds, sure. change DBS device, sure. My PDer requested to adjust his DBS device and after a few days, I determined it had been turned up TOO much. I called the office in a panic as I noted my spouse was a lot "looser" (basically acting drunk - stumbling, falling) than normal which caused him to be in a greater danger of serious falls. I couldn't get the dx to see my spouse before his appt the following Monday (I started calling his office on the Wednesday before his scheduled appt.). Friday, my spouse fell hard, several times (7-8 times throughout the day), hitting his head - which caused a subdural hematoma that landed us in the hospital for over a week and caused an emergency surgery to drain the blood pooling on his brain.

I would ask your doctor - whoever it is - "If you make med adjustments, etc., and it isn't working, how soon until I can see you again or get a response if it appears to not be working?" IT IS VERY IMPORTANT TO HAVE A RESPONSIVE DOCTOR.

By LOHENGR1N On 2010.12.03 23:42
parkinit, You are so right! Over the years here I've read these horror stories of Doctors not getting back to patients and their staff running interference for them. As I've read them I'm always reminded how very fortunate I've been, I've never gone over an hour to hour and a half after placing a call to my Neurologist without Him returning my call! If I've needed to go in and see Him it is always asap, as soon as I can get to the office. It is so crucial to be able to talk to or see Our Doctor when having problems. Now My primary Doctor is another story!

I feel so frustrated for all who experience these delays! You are so very right and that's some great advice You've given! Take care, best of luck and hang in there.

By Michele On 2010.12.04 15:42
Yes, a responsive doctor is a major issue. My PWP husband went to a movement disorder specialist at the Univ of Pa. He was a good doc but it took months to get an appt and it was difficult to get a call back from his "assistant" let alone him. I had to call the office manager to get action on several occasions. We recently switched to a local neuro who is knowledgeable and responsive, and, we see him once a month if there a changes. More frequently if there are problems.

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