[Forgetmenot]

My 50 year old husband has been recently diagnosed with PD and we are looking for an MDS in the Syracuse or Rochester area. Does anyone out there have any recommendations?

Thanks for any help you can give me!

[Tupelo3]

Originally Posted by Forgetmenot

My 50 year old husband has been recently diagnosed with PD and we are looking for an MDS in the Syracuse or Rochester area. Does anyone out there have any recommendations?

Thanks for any help you can give me!

The University of Rochester Movement and Inherited Neurological Disorders Unit (MIND) is a world class facility. If it were me, I would try to see either Karl Kieburstz or Irene Richard.

Good luck,

Gary

[Forgetmenot]

Thank you so much for your reply. Do you have personal experience with either Dr. Kieburtz or Dr. Richard? Their credentials on the website look great, but if I can find out any personal recommendations or experiences that would help me in my decision as well. I have someone on another PD forum who recommends Dr. Ray Dorsey who just came back to the University of Rochester after spending a few years as the director of Movement Disorder Division at Johns Hopkins. He is now heading a program there using telemedicine to treat PD patients who don't have access to MDS care but I guess he also sees patients in person because she is being seen by him and says he is very personable.

I'm trying to do a lot of research, and make the right choice of a good MDS for my husband. He's not used to going to doctors, in fact until now he didn't even have a PCP(and he's 50) hadn't seen a doc since he was a kid except for minor injuries in ER and such. After noticing his symptoms for 6 months to a year I finally convinced him that we needed to see a doc. We got him a PCP and after a few months were able to see a Neurologist (there is a shortage of Neuros here and it always takes months to get in to one). Well he diagnosed him at the first visit, prescribed Azilect, but sent him for a bunch of tests to rule other things out. All tests came back normal except an abnormal DAT scan. Since my husband is only 50, and he will be living with this for a long time, I'd like him to see an expert in PD. He's not too sure he wants to switch. This first Neurologist was nice but after I questioned him, he admitted he hadn't treated too many PD patients as young as my husband(50). When I asked him about seeing and MDS, he quickly told me if we did that then we wouldn't need to see him anymore because he didn't agree with having 2 docs working with one patient. Well that put up a red flag for me and I want my husband to see an MDS. My husband really doesn't want to go through the whole doc thing all over again, he's in the very early stages and feels like this doc will be good enough and he thinks he can wait until he gets really bad to see an expert. But he's willing to go along with what I think -- I have a chronic illness of my own, I 'm in school to be a nurse, and I am just more read up on science and medicine because it interests me, so he kind of looks to me to lead the way on these sorts of things. But I know he won't go along with a bunch of Dr. hopping and I don't want to do that either. And if I drag him an hour and a half away to see a doc I feel is an expert but he/she has an awful bedside manner, I know that won't go over well either. With PD it will be necessary to have a long term relationship with a Neuro and I want to make sure to make the right choice the first time.

So after listening to me run on -- do you have any further insights? Any personal experiences, or experiences you've heard from others on any of these 3 docs.

Thank you so much for your time, I appreciate your help so much!!

[Tupelo3]

Sorry for the delayed response, Forgetmenot.

No, I have never been treated by any of the doctors at U of Rochester. I live in NJ and get treated at a center in NYC. However, the whole staff at the U of R are highly qualified, including Ray Dorsey. I have seen many of them at conferences and presentations. I think what you'll find is that at the top MDS facilities, most, if not all of the doctors are highly qualified in PD. For me, the choice came down to personal interaction, "bed side" manner, and the amount of time the doc was willing to give me. Everyone has different preferences in what they are looking for in a doctor. I prefer sort of a partnership arrangement where I get all of my questions answered and we make joint decisions (in the end, its my body and my health that's at stake). Other people prefer the doctor to take more control and are happy not to have to make too many decisions. I can't tell you what is best, each of us is different.

You certainly have started the process off the right way by asking for referrals. What I suggest is that you get two or three opinions. This is a complicated disease and it never hurts to have a few opinions. It will also allow you to get a feel for different doctors and see which one you feel most comfortable with. I met with three doctors prior to making my choice. As I participate in a lot of clinical research trials, I've met many more of the top doctors over the past few years. From my perspective, I couldn't have made a better choice and it's worked out great.

One thing that may help in your search is the new Partners in Parkinson's search for a MDS app. It just went live a few hours ago and you may actually be the first person to utilize it. Just go to the site, put in your address, and you will find a list of MDS specialists in a 50 mile radius.
https://www.partnersinparkinsons.org/

Feel free to contact me if you have any other questions.

[Forgetmenot]

Thank you for your response,
When I viewed the U of Rochester Website and researched some of the names, they do look like they are highly qualified, and because I was concerned about "bedside manner", time given, accessibility, and yes a partnership style, I have been trying to get personal recommendations. But I find this extremely difficult. I have posted on a few of these forums and contacted the closest National Parkinsons Foundation support group. I have received only 2 personal experiences. One is as I stated in the post before, a recommendation for Ray Dorsey and another was a poor experience with U of Rochester MDSs in general. One PWP on a forum stated that the MDSs there at Rochester were too busy doing research to give time to patients and he wasn't happy with them. I have a phone call into Dr. Ray Dorsey's office asking if he will accept new patients, and we will see how long it will take to get in there.
I tried the Partners in Parkinson's search for a MDS App and it worked. When I first put in my zip code and the 50 mile radius, I found the one MDS that I knew was in my area -- in Syracuse. When I searched 100 miles many of the U of R MDS appeared (although not Dr. Ray Dorsey, however, since he recently moved back from John Hopkins maybe that is why), also some other names came up as well.
It would be closer for us to drive to Syracuse - 45 minutes vs. 90 minutes driving time. But I agree with you -- U of R seems to be a more "world class" facility. I'm just hoping they are not too "world class" and too busy to give each individual patient time. I think we will give Dr. Dorsey a chance -- but the first key will be how soon his secretary gets back to us and how soon we can get an appointment. It isn't an emergency, but if it takes too many months that will be a red flag to me that he is too busy.

Just as you do, we prefer a "partnership arrangement" with our docs. I have an autoimmune disease (similar to Lupus and Scleroderma) and my Rheumatologist works that way. He gives me my options and asks me "what do you want to do?" He tells me that he works for me, and he wants me to make the decisions on what treatments to try, etc.. I like to do research and be a part of my treatment decisions and so that works for me. As for my husband and PD-- he does not want to read a thing about PD-- but he wants me to research and learn and share with him(he prefers not to know the really scary possibilities, so I give him information that I think he needs, and can handle) then as far as treatment he wants this to be a joint decision -- so for us it will be more of a 3 way team: the doc, my husband, and I.
One more question, you said you tried out a few docs before finding the right one. How does that work with insurance? Will they pay for all that doctor hopping. Even if they would, I'm not sure that my husband would go along with it. He's not too keen on going to docs yet. I had to do some encouraging to get him to make this first step and see an MDS for a second opinion. So I am really hoping we can find the right person the first time. I'm hoping our insurance will pay for it! I did find out U of R is in network for us.

[Tupelo3]

I had no problem with insurance covering my visits (BC/BS).

The more active your husband is in the process, the better he will do. However, everyone handles things differently and comes to acceptance in a different way. The most important thing he can do right now, and every doc will or should tell this, is to remain active. Exercise is crucial. Bike, run, walk, dance, Tai Chi are all great. It's crucial that he does this within the limits of his ability. A healthy life style and diet is the goal, with a good amount of activity and exercise. Worst thing now is to be a couch potato.

[Forgetmenot]

Our insurance is also a type of BC/BS, so hopefully they will be fine with new patient visits with a new doc.

My husband is "active" physically. But he doesn't really want to be too "active" in the process of learning about his disease. I actually know a lot of people like him. Most people are surprised by how much I know about my disease, meds, etc.. I like to keep up with the latest research, and I'm OK with hearing the scary possibilities. But my husband I think is like a majority of people --he would rather not know what "might" be coming, he would rather live his life and take it as it comes. As to whether he would be willing to just trust the doc and do whatever he says - I'm not sure. He's never been one to go to docs or take meds, but I think if he was sick enough or in bad enough shape, he would probably just do as the doc says -- without looking into it much himself -- But I don't know -- pretty much, I think he feels that's what he has me for. It's just tough for me to know how much info to hand out to him when, as to not get him too anxious. I'm going to post a question or two on the forum and you'll see what I mean.

As far as a healthy lifestyle -- that is one of confusion and irony for us both. My husband and I have both lived very healthy lifestyles. So healthy, in fact, when I give my history I've had the nurses not believe me. We both married young (virgins, never another sexual partner), neither of us have ever tasted alcohol, never smoked, done any drugs, not even caffeine (we don't drink coffee, tea, or soda) both of us vegetarians our entire lives, and mostly vegans for many of those years. And by vegetarian/vegans - -we eat whole foods and are careful to eat nutritionally balanced meals, we have always exercised and pretty much been health nuts. You would think living these healthy lifestyles would put us at pretty low risk for chronic illness. Well, lo and behold, both of us come down with chronic illness in our 40s (well he just turned 50 but the symptoms have been there at least a year). Go figure. It has taught me that there are no guarantees. It is frustrating - but no we aren't going to throw in the towel on our healthy lifestyles -- we'll be the healthiest patients with chronic diseases that we can possibly be!! Another irony is that I think I read somewhere that people who smoke and drink caffeine have a lower risk of PD (maybe I've read that about alcohol too, I'm not sure). Is that true? Well he's definitely not taking up the smoking or drinking, but I'm wondering about the caffeine - would it help any with symptoms at this point? It is frustrating to think you are taking good care of your body and have it backfire.

My husband has a physical job, and has always been active in sports. This is definitely slowing him down, and some of his sports (basketball particularly) are just not working well for him anymore, but we are determined to keep him active and exercising, in any way we can. I notice sometimes I have to push him and remind him how important it is to exercise - as he is tired after work and would like to do the couch potato thing. But he is happy when I am his workout buddy and we encourage each other. Making sure he stays active will be a part of our decision about when to start taking meds - another big question mark for us -- probably is for many who are diagnosed at an early stage I am sure. I feel like even if there is nothing to slow progression --if the meds keep him active that in himself will help slow progression. But we kind of scared of the meds too and want to hold off as long as possible.

[Forgetmenot]

Oh boy, lots of typos. Is there no way to edit in this forum, once you post? Sorry for the poor English, I'm really not illiterate, just in a hurry

[Tupelo3]

I think you're doing a great job dealing with the initial phase of the PD diagnosis. You're husband will come around when it's right for him. Everybody handles these situations differently. He's very lucky that you are properly focused. Regarding his activity, you don't want to do anything harmful to the body. However, outside that, you really want to be as active as possible. It doesn't have to be sports. I also gave up basketball after I was DXed. But, I replaced it with Tai Chi and Qigong, along with walking and recumbent bike.

You should also keep an eye open for signs of depression, which is quite common. This is not just a function of feeling bad about the disease. It's mainly caused by chemical changes in the brain, which goes beyond just dopamine production. For example, Serotonin levels also change.

Unfortunately, living the healthy life style you described does not reduce one's risk of getting PD. In fact, in some cases it may increase it. As you already know, smoking and caffeine may actually lower risk.

Regarding meds, that's definitely a discussion to have with the docs you interview. Many people, including me, use Azilect as a first line drug. Some go for many years before they add on more drugs. Just keep in mind throughout this process, PD is a very individual illness. We all experience it differently, with different combinations of symptoms and different reactions to drugs. So, you can and should ask questions and get advice, but ultimately, you need to do what works best for your situation.

[Chemar]

Originally Posted by Forgetmenot

Oh boy, lots of typos. Is there no way to edit in this forum, once you post? Sorry for the poor English, I'm really not illiterate, just in a hurry

Hi
you can edit posts up to 24 hr after they have posted