A prominent topic of discussion at many of our support group meetings is "What we like, or mostly what we dislike about our neurologists".

Mary Frances's experience is unbelievable. If Mary is half as beautiful as it appears she is in her avatar, I would not only remember her but would be scheduling weekly appointments not 6 months. LOL Seriously, a doctor should remember his patients if they are keeping 3 - 6 month appointments. At a minimum they should review the patient's records prior to seeing them so they would at least appear to remember them.

There have been 6 or 7 neurologists here in Anchorage since I was diagnosed. For the first 19 years I went to one that everyone else, which had gone to him, despised. Every woman PWP or caregiver that had gone to him, felt he belittled them. Being single I didn't have that problem but he never really talked to me. I probably never asked him the questions I should have to get the answers I needed but I never felt that he had a personal interest in me. I would have changed but no one else liked any of the others either so figured that it wasn't worth the effort to start over.

Three years ago he told me, "I've done all I can do for you so I'll send your records down to a MDS in the Lower 48" and basically told me he didn't want to see me again.

After having my DBS surgery I went to a neurologist that my DBS programmer was associated with. I only saw her twice before she retired. I now am going to a young man that is also my programmer. He asks lots of questions and is open with me but I think he would be very reluctant to try anything new. I asked him if I should try Azilect since I knew a lady, whose pd life mirrored mine pretty closely, had excellent results with it. He said he didn't think it would be worth it since it was merely another form of eldepryl and I had already maximized the life with it previously.

I think it would be informative to hear your experiences with your neurologists. Do you love them, hate them or just tolerate them?

Thanks, Dale... you are so sweet.

I can take or leave my doctor. He is busy and indifferent.

I think the problem is that there are so few pd specialists in the
area. Not much to choose from.

Help

Dale, I have had several neurologist's, since I have moved a couple of times.

My first was at the Univ of South Florida Movement Disorder Center, Tampa, FL. I like Dr. Hauser to a degree...he was my initial dx doc. What I didn't like about him was that he was always in a rush, but the staff were wonderful. He would prefer to be working on his book or doing the lecture circuit.

Then Dr. Zesiewicz..."Dr. Z"...came along intothe USF MDC and I like her a lot.

When I moved to NYS I saw a general practice neurologist. I was accustomed to the usual review of finger tapping, hallway walking, etc., a the MDC. The GPN did none of this...two years...and didn't have as good a grasp on PD. This was obvious to me, since she didn't do the scaling each visit and rarely changed my meds, and never suggested something new on the pharmacy shelves.

Here in PA I go into Baltimore to the Univ of Maryland. My current MD neurologist is great...Lisa Shulman. Empathetic and compassionate, and sees only PD patients. I like her a lot, although the staff could smile a bit more and be in less of an I don't care mood. It is a huge clinic.

Personally, I think anyone with a movement disorder should see ONLY a movement disorder doc, unless it is just to difficult due to distance.

Right now the distance is only about 75 minutes, but it is symptomically difficult for me...I am a symptom-mess when I arrive on the 3rd floor. So, when I think I am going to have a really difficult time, I can drive half way and then take the metro into the city, rather than drive into the city...ugh!!

I LOVE mine!! Jeff Bronstein will not give up!! He answers my emails and spends as much time as it takes to answer my questions. he is the head of the movement disorders clinc at UCLA. Before him I had a truly great one at USC. CAnnot think of his nname though. only reason I changed was UCLA had a better DBS program.

yes I do. He likes me as I am his only PD patient who is younger than him (by a few months). Means he can relate to me easier and I can call him an old man.

Neil.

Dr Cheryl Waters (Columbia University Medical Center) is my doctor. I like her very much. I also like her staff.

All the best,

Lloyd

Cheryl Waters was my first MDS when she ran the movement disorder program at USC. She is indeed a nice lady. Dr. Mark Lew took over for her when her husband got a job in NYC.

Charlie

I love my MDS when I see her in the office. (Dr. Paula Ravin - UMass Memorial in Worcester, MA)

The part I don't like is trying to get a hold of her in between appointments. It can take up to two weeks to hear back from her. She is understaffed unfortunately. And...when the secretary tries to make my next appointment it is always 9 - 12 months out. I have to become the "squeeky wheel" in order to get a better appt. Lat time I got 8 months..so my next appt isn't until Aug! I learned the hard way that 9-12 months is too long to go....

But, when I am there, my appt is always at least 2 hours...so she definately takes the time and always remembers me.

Janice

I also have Dr Ravin. I agree that she is a great neuro and I have had to wait upwards for 3 hours just to see her. But she is well worth the wait. I agree that she is understaffed and since I have been seeing her for the last 10 years she remembers my name very well.

I'm jealous of those that love their neuros or MDS's. I've been through 4 neurologists at my health care organization (Kaiser - ugh!) and I think they all skipped class the day Parkinson's Disease was discussed. I want to send them all the recently released book "Parkinson's Disease for Dummies" but my guess is they wouldn't read it.

Here's a couple of conversations I had with one neuro (whom they consider one of their best) a few months after my diagnosis (and I'm on Sinemet):

Me: I would like to try Sinemet CR at night to see if it helps me sleep better. Dr. Okun, the medical director for the NPF recommends it a lot.

Neuro: How long have you had trouble sleeping?

Me: A couple of years now.

Neuro: Then it's not Parkinson's related.

And one of my favorites:

Me: I'd like to get a prescription for Parcopa (orally dissolving Sinemet).

Neuro: What's Parcopa?

So while I fight my insurance company to go out of network to see a MDS, I pay out of pocket to see a MDS that is wonderful. She spends a lot of time with me and cuts me a break on her fee, which is really cool. The problem is, if she writes me a prescription, I have to pay for that out of pocket as well.

Be thankful for the good docs that you have, because some of us have to fight like hell just to get proper care.

Wish me luck!

Todd
PDTalks.com