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Topic A good doctor, a good book. Go to previous topic Go to next topic Go to higher level

By VioletV On 2013.10.21 00:00
We've had some good luck and good information that I'd like to share.

After struggling to find decent care for my husband (local neurologist didn't know much about PD, travel to the movement disorders specialist was a nightmare we didn't want to repeat) we've finally had the enormous good luck to find a (so far) good Parkinson's doctor. He is a neurologist who has opened a concierge practice which he calls a Parkinson's Wellness Center. It's not inexpensive--but also not more than if my husband and I each had a latte at *$'s daily.

The way it works is you pay the annual fee and get pretty much on-call access to him. He answers his own cell phone on the second ring "Joe (not Doctor) Smith" (tho that's not his real name, but you know what I mean). He has taken 3 frantic calls late one at night when my husband's tremor just wouldn't quit, and gave quiet and helpful guidance. He responds quickly to texted or emailed questions; we've had two office visits so far of an hour each (since July) and will have an official 2 hour annual wellness visit later this month.

I guess I'm posting this because I'm thinking I can share the nuanced information he's given us, if others are interested. For example, we'd been trying to figure out how to implement the advice we'd read to avoid protein close to the time of taking Sinemet. He explained in some detail that for some patients, the transport molecules in the GI system are too few to carry both L-dopa and protein, so protein competes with Sinemet, but that this is true only for about 10 percent of people, so that you have to individually experiment to know whether it makes a difference.

I found that explanation tremendously helpful-- I need to know why - not just "it varies".

He also suggested a book, written by a colleague in another city, that I've found to be quite helpful in understanding the non-movement aspects of PD. It is: Making the Connection Between Brain and Behavior, 2nd Ed : Coping with Parkinson's Disease by Joseph Friedman MD.

Again, I've gotten so much reassurance from this forum as we move into the more restricted life of later PD. It's an adjustment all right.

VV

By countingmom On 2013.10.21 19:22
Thanks for the posting, I am always looking for more information, I downloaded the book you suggested, I have only read a little but I think it will be helpful. My husband has only been diagnosed for 3 months, even though we kind of knew before. We are glad to be able to read about behavioral issues. Apathy, depression,anxiety. Thanks again for your input.

By parkinit On 2013.10.23 22:53
Thanks for the info. What a wonderful concept this doctor has created. I wish others would follow.

By carman96 On 2013.10.24 14:11
Thanks. I downloaded the book onto my kindle. Kind of expensive but sounds like a good book. In our case, the behavioral problems are the worst right now for me anyway.

By LOHENGR1N On 2013.10.24 16:27
Violet, Did I read this right? You pay $2,500 to $3,000 per year to get an annual 2 hour visit and access to having the Doctor answer your phone calls?

By oshroshr On 2013.10.25 22:35
The book sounds greAt. Also we are at stage when tremor won't quit at night. What did you do?

By LOHENGR1N On 2013.10.25 23:54
Yes with the protein and L-Dopa if you think of it like a train. there are a limited number of coal cars to carry the coal and if you fill them up with rocks instead the train can't carry the full load of coal so if we eat protein (rocks) close to taking Sinemet, the L-Dopa (coal) can't fit in the full cars so it doesn't get delivered to it's destination (the blood/brain barrier and into the brain). Well that's how I explain it and for me that is easier to understand.

By carman96 On 2013.10.28 10:48
The book by Dr. Friedman was very informative. He does a good job of explaining the differences between depression and apathy, and the differences between illusions, delusions and hallucinations. Also a lot about why the brain changes and also drug affects, side effects, and interactions. It is good to understand the why and how of things.
However, the title of coping with Parkinson's is misleading. There are no practical ideas of ways to cope. Just explanations of why things happen. It was over $14 for the ebook, so if your budget is tight, It might not be worth the money.

By VioletV On 2013.10.29 13:17
Lohengrin,
Yes that is cost. I think we get a great deal for it - especially compared to the other choices available to us in our relatively rural out-of-the-way state.

Previously we saw a community neurologist who mis-identified tremor as dyskinesia (thus causing a reduction in the very medication that manages the tremor). Driving to the big Movement Disorders center in the closest big city was an all-day ordeal, and gave us 20 minutes or so with a big-deal teaching neurologist and her students, observation by her nurse, and what seemed to me to be an over enthusiastic discussion of DBS.

In contrast, the new doctor makes it his primary aim to fine tune the medications that help to control my husband's PD. In the 3 months since we first started seeing him my husband's UPDRS scale went down about 20 points. He sleeps better, constipation is managed. His balance has improved, etc. etc.

Having access to a doctor in the middle of the night, next-day appointments, and careful monitoring and management of medications is the kind of peace of mind that is worth it to us. And, fortunately, we are able to make that kind of investment. I know it's not available to everyone, and I'm very thankful that we can do it.

By jcoff012 On 2013.10.29 16:20
To each his own, I say...it is worth peace of mind when one lives in the boonies like we do, to find a GOOD doctor...if this works for her and her PWP, so be it. I know we are willing to drive three hours to UCSF for a good doctor because there is no PD neurologist or MD specialist within 100 miles of here..and I drive four hours each way to see my oncologist, and have done so for four years...again, peace of mind. ;) Hugs, Jane

PS The money is irrelavant to me...having lost a daughter to a massive brain stem injury, I KNOW we would have found the way to get her help to survive no matter what it took...and I would do so for any member of our family. There truly is no price for a life.

By VioletV On 2014.06.06 20:58
Well!

After a year or so with the concierge PD doctor I talked about in the original post here, we had the shock of learning from him last week that he is closing his practice and retiring in the Fall. He says "the numbers just haven't worked...and I can't see myself working for the large corporate hospital in town..."

So, after this excellent year of working with this doctor, we are starting out again to find the right medical care for my husband.

On the bright side, the year with this doc has been a wonderful learning experience. He is so clear that the PWP (and the caregiver) should be able to adjust his own medication--within some fairly narrow parameters--based on his experience and his knowledge of his own reactions. So we no longer have to call to ask -- "is a half-Sinemet boost OK in this situation?" These days my husband is now able to go to a movie or to opera) broadcasts (opera is kind of our thing in theaters. Six months ago he did not imagine that he could make the 4 hour drive north to visit our daughter in her school. Now, it's clear that he can, with some planning.

Still, to our knowledge there are only two other movement disorder specialists in the state--fortunately both are close. We'll meet both of them and then decide, but our year with the concierge doc has been an empowering education. It's disappointing that we're losing him, but . . . with PD it's always something.

By ResistanceFutil On 2014.06.07 06:29
A note on Dr. friedman's book: looks like it can be rented (like a library check out) on Kindle now for under $6 - I'm reading the sample now before I decide to buy. The appendixes look like its worth the buy


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