I am so excited! We live in an area where we are so alone in this disease. Our neurologist just always says, "Yes. It sucks. And things will just get worse." Our primary doctor said, "You're my first HD patient. You know more about the disease than me."

I got through all of the red tape and got my husband an appt at the HD clinic at UAB in Birmingham, AL. We will finally be seen by experts who KNOW this disease!

Has anybody else been to this clinic or heard of it?

Kristine
I have not heard of that clinic but we were in the same boat. When Donnie was first diagnosed we were seeing a dr in Lawrenceburg, Tn. He was a neurologist but he had never had an HD patient. His famous words for me were always " unfortunately that is just part of it" I got soooo sick of hearing those words for a year.
We now go to an HD specialist clinic in Nashville, Tn. It is part of the Vanderbuilt Medical Center.
His name is Dr. Daniel Claaussen. and they are great!!!

Liz

Hey folks. We are just down or up the road from each other. Not many have experience with HD except the specialist.

Kristine I hope you have better luck with B'ham than I did. I would be interested to know.

Mike

Mike, now I'm curious. What was your experience?

I don't want to reduce your hopes. My "experance" with the HD specilist at Duke (in NC) did not go well at all. My impression was that the specilist are actually for a broader class of practice with HD being included. In our case the specilist could ONLY see movement disorder and that is ALL he want to address. My concern was behavior and the wife did not have any chorea but he still prescribe TBZ (even before it was approved) with the wife in a morbid phsycotic state to begin with

So if any thing positive I could share would be

Be aware of the specilist area of practice
Be aware of YOUR concerns
and ensure that treatment is for your love ones betterment and not just to add to that specilist status with a drug company

Very good information. Thank you!

Hi Kristine. I don't want to dampen anyone's spirits. There are a lot of people who did have a good experience at UAB. Unfortunately I was not one of them. From that experience I latter contacted Vandy and decided after talking to the Dr. it would be the same old same old stuff. Mayo on the other hand has been wonderful.

B'ham is set up as a COE and Vanderbilt if not already is trying to get accredited as one. The approach is good but I think too many things come into play such as what JFB stated above. I saw Dr. Sung and was quite disappointed in him professionally and from the standpoint of being concerned with my health vs. excessive testing and retesting (i.e. cash flow ). Anytime you see someone complain about the notes they had to read and comment on that facilities methods (although much better known than Kirkland Clinic), it is rather disappointing and unprofessional in my humble opinion. Keep in mind he is a movement specialist and if not mistaken a Parkinson's specialist which is not uncommon.

My hopes were to get closer to home instead of my wife driving 11 hours each way to my visits. Afterward she said she would rather drive eleven hours instead of two than deal with the attitude. I do want to point out his nurse was absolutely wonderful (she was even caught off guard) and the others on the team. He will be the first and last you see during your visit.

Keep in mind I am the first in my family to have HD. It is almost like they don't get it that it starts somewhere. No one ever considered HD till Mayo although I had so many symptoms. Most physician's I have had to deal with are compartmentalized into there area of thinking and very rigid in those thoughts. One difference between Mayo and other facilities they look at the whole person sending you through several areas of expertise before you find the right physician and then they expand from there.

I wish all the best on your visit. Please let us know how it goes. I will hope it is the very best experience for you both.

Mike

Hey Liz, check your inbox please.

Mike

Oh gosh, some of these clinics just seem so mixed up, compared to my experience. I go to the hd clinic here in Vancouver. Michael Hayden actually runs this clinic, although he doesn't see patients for their neuro exams, he sees patients more on the research end, like those in clinical trials and stuff, but he is head of all the staff too. When I go into the clinic for my yearly, there is a social worker I can see, although I choose not to see her. There are two neurologists, and an hd psychiatrist. Actually there used to be an hd psychiatrist, I loved him, but he left the clinic 3 years ago, and they brought in a neuropsychiatrist, who I haven't seen yet, to replace dr g. I actually haven't been able to get into the clinic for 3 years now because of my concussion symptoms, and right now, any long car ride makes my symptoms worse. So I would rather keep my hd doing ok, than having the concussion take me downhill real quick. Ok, back to topic When I go in, first I see the neuro. Everyone there specializes in hd, the clinic is only for hd patients, it's not a movement disorder clinic, it deals with all aspects of hd. The neuro checks me not just physically, but also cognitavly. After my hour with him, I am sent over to the psychiatrist, who is specifically an hd psychiatrist, who specializes specifically in medications. Then, after I am done with him, he and the neuro have a brief summary meeting with each other, to tell each other what they have come up with for me, and when they know they're both on the same page, they send me on my way. The first two times I went in to the neuro, I left really disappointed, because he just examined me, said ok, everything looks good, and sent me on my way. When I got home I was upset, because he didn't tell me how I was, other than you're good. So the next time I went in, he said, ok, you're good, see you in a year. And I looked at him and said, no I'm not good. I said you have just spent an hour examining me, and all you can say is you're good! I said let me tell you something. I am not one of your lab mice, that you get to just poke and prod, and then say I'm good with you. I said, I have been waiting all year for this exam, I come in here and give you one hour of my time, and you treat me like a lab rat. I am not here just so you can learn how hd is effecting me, like some science experiment, I am not here for you, I am here for me! I said, now that you're done with your experiments on me, it is time for you to say, is there anything I can do for you today. He apoligized so nicely, said he had no idea he had come across that way, and he said yes, you are the patient, and I want you to always feel that your appointment is about you. So he said, so what can I do for you today. So we had a conversation. I said, I don't want to hear that I'm just ok. I want to know, how did I do on my exam, did you find areas I'm improving, and what areas seem to be getting worse. I want to know what you found out in your exam. So he told me. Then he said, what else can I do for you. I said tell me what is going on in research, what your lab and Michael's labs are working on right now, I really want to know. He got really excited and started telling me stuff. Then I was able to ask if there are any trials that he feels might be good for me at this time, and if there is anything else he thinks I can be doing to help my hd. He was blown away, and then apoligized again, and explained why he never gives too much info. He said, some, actually most hd patients, really don't want to know how they're doing, or what is going on in research and trials, and they try not to give a person more info than they seem to want, so that they don't overwhelm then. But then he said, but thanks to me, he won't push anything on anyone, but from now on he will always ask each patient at the end of their exam, if they have any questions, and if there is anything he can do for them. It was actually out of kindness that he was trying not to overwhelm patients with too much info, but now he knows to ask, and he always does every time now. But there is also a flip side to this. If you start asking about every supplement in the world, they can get a cautious look on their face, so I will maybe ask about one supplement, and then about research, and they seem thrilled to be able suggest new findings. So, sometimes it's a matter of pulling the doctor out of their shell too, and finding a way to do it. My neuro also does not prescribe any meds, that's what the hd psychiatrist is for. So I'm really sad to hear that some of the clinics some of you go to are not hd specific, I'm just fortunate to live where I do, but also, I know many clinics in the US do not have a psychiatrist, an hd psychiatrist on as part of the team. I wish you the best with your appointment, and hope your experience goes well

Mike, I sent you a PM

If anyone lives close to Nashville, TN or can get there, I feel like We have found THE BEST CLINIC EVER!!!
It is called HUNTINGTON'S DISEASE AND CHOREA CLINIC. IT IS A BRANCH OF VANDERBILT CLINICAL NEUROSCIENCES.
feel free to google it.
Donnie's Dr's name is Dr. Daniel Claassen. There number is 615-936-1007. The whole staff there is soooo helpful. They have a whole team of people there that just specialize in all the different issues that go along with HD.

Liz

Mike,

Dr Sung is who we will see also. I'm going into it with an open mind. Our current doctors are clueless about this disease and just keep throwing meds at Rob. At the very least, this clinic can't be any worse. And hopefully we will gain some insight into what we can do.

Thanks for your input.

Kristine, I wrote you and others about what my hd clinic is like, but I don't think you saw it, because there were several new posts, and mine was about the third one up lol. I used to do that, if there was a new post, I would just look at the new one, not realizing there could be other new ones above that one, and didn't discover this until one time people were talking about something that I hadn't seen on the thread lol, since then if there's a new post, I always scroll up a bit and see if there are more posts lol, or maybe you guys did see my post and I'm just being anal LOL anyways, just thought I'd let you know

Barb,

Thanks for reminding me to scroll through ALL the messages. LOL

It was interesting to read about your clinic. I will definitely be assertive and ask the questions I want answers to. I will post an update after we go to the clinic.

Mike, I'm sorry to hear you have to take such a long trip to mayo, but, having said that, it sounds like that is an awesome clinic too, and it sounds like you are having a very good experience there. Glad to hear that

Kristine, I hope you guys do go in with an open mind. Like I said, many have had excellent experiences.

Thanks Barb. Yes, it's a hassle but necessary. I hope everyone can find a place they feel comfortable and secure in this process.

Mike

Hello Kristine. I was wondering if you made it UAB or are you still waiting. If you don't mind sharing, I would like to hear about it. Dr. Sung's nurse was wonderful. She wasn't able to be in my exam room at the time but was really disappointed for me it didn't go well.

Mike

Mike,

Thanks for checking on us. We had his appt last Friday. We had a wonderful experience. The nurse, other therapists and staff, and Dr Sung were all great. He really took his time to answer our questions.

He is helping us with my hisband's anxiety and depression and we just started new meds for that. Then we will start Xenazine soon.

For us, just seeing a staff that knows about the disease is refreshing.

If Memphis, TN is closer for any of you, my wife sees Dr. Mark Ledoux at the University of TN(Wesley Neurolgy Clinic) in Memphis. He is very knowledgable and is great with my wife. We have been involved in numerous studies and I would recommend him to anyone.

Kristine, I am so glad you had a good visit.

I was going to Dr. Ladue and found UAB. Wish now I went to Memphis.

Mike