I don't know if this is an appropriate question to ask or not. My father was diagnosed with LBD in September. Neither my mother nor I have been impressed by the care he has been receiving from his neurologist, my mother would like to get a second opinion, my father has finally concurred. I don't really know where to start in finding someone who would be especially helpful with regard to LBD or ruling out other dementias, or getting to the bottom of things generally.

My FIL suffered from FTD, so over the last several years I've done some research on dementia. I seem to recall there being some good docs in Philadelphia, but I can't remember how I found out about them and if I found them through my FTD research or LBD research so now I'm having trouble finding what I'm looking for.

I'm wondering if anyone here has any recommendations on where to look for a good doctor. Philadelphia is definitely accessible to us.

You could do a search of posts* containing the word "UPenn." There is a gentleman here (Jack?) who takes his wife to see someone at UPenn, whom he recommends though, as I recall, the MD had some offbeat views about Aricept.



* http://community.lbda.org/forum/search.php

Robin,
I'm not sure where I should post this. I will start here and see what you think. My LO was diagnosed with LBD almost two years ago. At first I did a lot of posting because I needed a lot of help. You and others on this site helped me a lot. I haven't been posting much lately, (just lurking in the backgroud as they say) but now I want to post something I hope may help someone else. I have been very fortunate to have found a neurologist that shares the same ideas as Dr Boeve. In fact he said he has gone to Dr Boeve's seminars. Can I share the name of neurologist? He is in Madison Wi.
Thanks Mary

Mary,
By all means post his/her name, as there is always someone looking for a doctor who knows LBD. Here would be fine but you may also want to put the name in treatments.

Mary,
You should certainly share the name. Have you mentioned the name before?
Robin

His name is Dr Chad Yucus from the Dean Medical Center in Madison Wi, He is wonderful!! Besides he is open to work with new ideas. I wanted to know if Aricept 23mg would help my LO. He said as far as he knows it hasn't been tested yet on LBD but if I wanted to try some samples he would give me some. He also said , next time he had to opportunity to ask Dr Boeve, he would ask about it. Dr Yucus is very kind and patient.
Thanks Mary

Dr. Yucus is also recommended by someone dealing with CBD (corticobasal degeneration) and MSA (multiple system atrophy) - two movement disorders that are also called "atypical parkinsonism disorders."

Michelle, I hope you have found a good neurologist for that second opinion. It could make a huge difference for you. It did for us.

We found Dr. Daniel Kaufer at UNC Chapel Hill. He specializes in LBD and has been a real blessing for our family. We have had many wonderful days with my John since coming under his care.
If we had stayed with the neurologist who originally diagnosed John, our story would be quite sadder at this point, more than 3 years after diagnosis. He gave us no hope.
Dr. Kaufer's approach has given us extra years of cherished time together with so many good moments.

Hang in there, and do not give up. There are good doctors out there who know how to help you!
In my research, I started by looking on the lbda website for board members who were doctors.

Mary,

Thanks for posting the information about Dr. Yucus! I just looked him up and discovered he also has hours at another Dean facility only 30 minutes away from me. For various reasons, I have been thinking about having my mother seen by another neurologist and was hoping to find someone really good with LBD. This is very helpful!

Julianne

michelle,
i just found a wonderful doctor by going to a local support group and asking questions.. maybe if there is a support group in your area you could visit ... i got this doctors name from almost everyone in there, so i figured he was good.. and he was!!

good luck!!
cindi