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BillBRNC

A Little Help Please

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I'm fairly new to all of this, and I posted this first as a reply in what I think was the wrong spot, so I put it here. I have Dementia with Lewy Bodies as primary diagnosis, with early onset Alzheimer's as a tag-along. I'm 66. To now, I've mostly dealt with the cognition and behavioral stuff, but now I'm having minor but noticeable shuffling, tripping, leg cramps in the morning, still legs in the morning, stiff neck and shoulder, some lower arm pain, and some limitation with arm swing. I again would describe all of this is relatively minor right now, but it definitely is starting and not going away. I have fallen several times, but there seems to always be something else that might explain it, like ice or rugs or steps or something. Anyway, I already take a ton of medications, but when should I start thinking about the meds you folks are talking about? Can my PCP handle this. He is a very smart fellow. If he doesn't truly believe he knows, he would refer me to a neuro guy we both know. My wife is also a PCP, but she is retiring next month. I want to avoid as many doctors as I can, as I'm screwed for sure with the Lewy Bodies and Alzheimer's anyway. Any ideas would be appreciated. I got my diagnosis at a memory assessment clinic at a major medical center, with testing and Pet Scans to go along with all the other testing. The experts there agreed that I could just return to my primary care doctor and let him handle the meds, and for him to call if he has any problems he's uncomfortable with. The bottom line is the dementia end of this is going to rule the day for the most part, and the docs say I should just enjoy the hopefully years I might have left. Anyway, I haven't put a lot of thought in the Parkinson stuff up to now, but it looks like I probably should, at least while I still know which end is up. Thanks. Bill.

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Bill:  My vote is for you to find a movement disorder specialist, at least to communicate with your PCP in between visits to him/her.  This is really complicated stuff you are dealing with, and I don't think your PCP would resent that at all.  (Might ask your wife how she would feel about having someone else to look over you?)    Best wishes, and thanks for posting.  You give us a lot to think about.

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I old talk to the group that sponsors this site, and for All heifers and see a combo specialist. The daily quality of life is much higher if your doc is up to date on the Med's and the interactions. Your wife will certainly help because she's a PCP, and you wouldn't go to a heart surgeon for a dermatology issue would you?

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Bill:  My vote is for you to find a movement disorder specialist, at least to communicate with your PCP in between visits to him/her.  This is really complicated stuff you are dealing with, and I don't think your PCP would resent that at all.  (Might ask your wife how she would feel about having someone else to look over you?)    Best wishes, and thanks for posting.  You give us a lot to think about.

 

I would humbly agree. A very complex scenario. This forum is a great source of information and support. Hopefully we can be of benefit to you.

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Thanks to all for the replies. Seems unanimous, so that's what I'll do. We have a good neurologist here, but the MDS is two hour drive away. Would the best idea be to see whether the neurologist is up to speed on this stuff, or just go ahead and take the two hour drive? By the way, does what I describe as my movement symptoms seem to call for me to look into this now? Thanks. Bill.

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I vote the two hour drive for the MDS (my drive is 3 hrs. one way).  And, yes, your movement issues might respond to PD medications.  It is worth the trip to find out.  Best to you, Gardener

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Gardener, thanks for the advice. I have lots of trouble thinking my way through all of this, but I'm working on it. I'm sure the same medical center I went to for the original assessment has a good MDS, as the memory assessment clinic is actually a sub-part of neurology department. One final question: With the various medications, do they simply reduce symptoms or do the slow the overall progression of the disease and ultimate outcome on the Parkinson side of things?

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The medicines do not slow progression.  It is difficult to say if they will help with the PD symptoms of LBD - you need an expert to sort this out.

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Yes, this seems to be the situation. The medications for PD can be used for Parkinson type symptoms for LBD, but the only one that seems to get much said about it is Sinemet, and they seem to suggest that it be used as little as possible due to making other things worse. The view seems to be to use it when the Parkinson movement stuff gets into the moderate to severe range, but that is unclear. There is certainly a difference of opinion in the literature and among experts. The doctors that diagnosed me indicated that by the time the Parkinson type symptoms get really bad for me that I'll likely be too far gone cognitively to even know it. Their view is to start talking and thinking about addressing the movement issues fairly far down the line, but truthfully they didn't even really want to discuss that part of it at the time. Seems the cognitive and other stuff with LBD is bad enough and enough to try to handle. It's hard for a fellow to know what to do, particularly since no two experts seem to think the same thing or trust the findings/opinions of other experts. Just saying from my little place on the ground.

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BillBRNC, 

 

I'm truly sorry for your diagnosis - it must be difficult finding answers.  Of course you belong on this forum.  There are good people here with lots of experience and caregivers who probably have a better grasp of the issues than those with PD.  We'll try to help you through your journey so keep asking questions and share with us as we can learn a lot from your experiences.  Gardener

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Thank you Gardener. I never was much for computer stuff or forums, but that all changed for me in recent times, because it is a great source of knowledge to be taken with grain of salt and for advice from those who have gone before me. I also enjoy caregiver boards, but they can be a little depressing, but they give me an idea of what might be coming my way. I like to plan while I still can. Merry Christmas to all.

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Bill -- as already mentioned best to have a team to look after you and advise.  I'd get up to the MDS one way or another.  Often with a three hour drive, less stressful to find a B&B close-by that you like.

Drive up the night before, enjoy a quite dinner, and spend the night at a B&B and get to the MDS / Medical Center early. 

 

I found a couple of great books on dog training to assist with disabilities. Teamwork I & Teamwork II by Stewart Nordensson.   Still a great reference to reminding myself what my faithful retriever is looking

for.

 

Limit your time on the computer, it can get depressing at times.   I try to stick with electronics and woodworking, but need to stop in metal working places for inspiration.  allmetalshaping is great inspiration,

you need to register to see the photo's, but fun to see some of the talent.  I took my son and attending one of Kent White's work shop a few years back. Had a blast but kept wondering what was going

on in my head as I would mentally freeze in the middle of doing something. I'd known Kent for some years and he realized something was off, but didn't know what it was at the time. 

Edited by TexasTom

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You did not mention (or I missed) your location. If you have not explored the National Parkinson's Foundation site for "Centers of Excellence", here's the place:

 

 

http://www.parkinson.org/find-help/resources-in-your-community?_ga=1.65420590.1638494502.1484682351

 

This would be a way to see how many advanced treatment centers are within your reach.

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