I'd like to add my comments to an earlier poster who had good things to say about Dr. Chad Yucus, a board certified neurologist and neurophysiologist in Madison.

My mother had an initial appointment with him today. He met with me privately first, at my request, so I could express concerns (my mother is getting very paranoid and defensive). Then he met with both of us, and the whole process took two hours, though we were scheduled for just 45 minutes. He was efficient but simply took the necessary time to do what he needed to do, which I found refreshing. He also took the time to answer all questions thoroughly, and he was very kind. I was very pleased.

He had the rest results from her workup back last year when she was diagnosed, and based on those and on his examination, he confirmed that he feels LBD is the correct diagnosis, and he explained why. He reviewed her meds and is going to make some recommendations to her PCP. He suggested another kind of a scan--a PiB scan--which he said would help to differentiate whether she also has an AD component to her disease as well as help him determination more about the progression of her disease.

Julianne

I'm glad the appt. went as well as can be expected and that you liked the dr. That is half the battle, isn't it? Good to work with someone you trust and seems capable and understanding of LBD. You're lucky to live somewhere that your mom can be seen by specialists. Lynn

Julianne,
Than ks for posting, I am sure it will help someone else along along the way.
I am glad he was a Doctor who took the time for questions and explanations, Having a Doctor who partners with the family is great !

Thanks Julianne for seconding the recommendation.

I'm so amazed at how rapidly the PiB PET scans are taking off in the US. Perhaps the scans are easy to read?? Yes, they detect amyloid, which is the protein involved in AD. Are you going to get the scan? Keep us posted!

Did you ask how the disease progression is affected if it's DLB + AD? Presumably the progression is faster.

We do plan to have the scan. And as far as having LBD and AD, the doctor didn't seem to think it would make much difference, if I understood him correctly. We didn't really spend a lot of time on that at this point, though, because he said he would know a lot more after the scan. I will let you know when that happens.

We live about 90 miles from Madison and saw him in a local clinic where he visits twice monthly. The scanning unit that would be most convenient is a mobile one, and I don't know yet how often it comes. The doctor is going to report to the PCP and we will go from there.

It really was great to find some knowledgeable who was also so approachable. My mother took to him right away, fortunately.

Julianne

It's wonderful to have a conversation with someone who understands!

I just read this sentence in a journal article tonight, which seems relevant to the question above: "One difference in the neuropathology between DLB and PDD is that a co-association with Alzheimer’s pathology is more common in DLB, which may contribute to the more rapid progression to dementia relative to the onset of motor symptoms."

Julianne,
I am the one that reported to LBD that my LO has been seeing Dr Yucus for about 2 1/2 years now. We will follow up with him again in June. I feel so fortunate to have found Dr Yucus. As you say, he is so kind and patient. Last time we were there he mentioned that he follows Dr Brad Boeve guidelines. My LO is now so stable that I almost hate to post but hang around in the back ground here. When I think back on my first days to this forum and how much improvement has been made its quite remarkable. I have this forum to thank for that and I couldn't help but put in a post when I found out your LO was seeing Dr Yucus also. We see him in the Madison clinic as we only live about 25 miles from there and the hospital there is where I worked my entire nursing career. Usually when we visit Dr Yucus, I write a note to him to read before he sees LO. I truly believe he listens to me. I will see on our next visit if he says anything about the PiB PET scan. I will be waiting to see your LO outcome.
Mary

Mary,
So glad to read that your husband is stable such that you have no concerns to post about!
Robin

Hi Mary,

I appreciate that you posted about Dr. Yucus. I feel much more confident in him than in my mother's previous neurologist. He was really good about seeing me privately before seeing my mother so I could be frank with him. The staff finessed it beautifully so that my mother wasn't aware (she defensive and paranoid). The PiB scan came up when I was asking questions about whether my mother likely had only LBD, AD or both, and whether it mattered, and also about her prognosis. Anyway, I was very impressed.

It's great to hear that you LO is doing so well!

Julianne

Mary, my LO also started out in dreadful shape, saw Dr. Boeve, improved gradually and remarkably and has been stable in early-stage symptoms for about seven years. I'm so glad to hear your similar story! May you have many more good years ahead.

Hanging around in the background is not my style, I guess, but sometimes I do feel almost like I don't belong here. Most of the caregivers here are dealing with much more advanced issues and my concerns seem trivial by comparison. I am learning so much from these caregivers.

Jeanne

Of course you belong here, Jeanne. You are a wealth of advice and information. Anyone who has even touched on this disease has something to contribute, and could be something that no-one else has experienced. Any issue to do with lewy is far from trivial. Thank you for all your advice and support. Ger xx

Jeanne - when I first joined the forum I felt kind of out of place, or like I shouldn't be here. So many had spouses with LBD, and my "person" was my dad. Some had LOs who had already died. Many had LOs who were in very advanced stages. Within days or weeks it seemed it didn't matter - we are a community brought together by a terrible disease and I'm glad I became a member of this very supportive and informative community.
I hope everyone who comes here feels supported and respected. (and if you don't, contact Irene, who is the volunteer in charge of steering us in a direction of respect and support when that doesn't happen ocassionally)
Sending you many positive thoughts and a big hug through cyberspace! Lynn

Don't any of you think of not coming on here…

Jeanne, You are exactly who I desperately need to hear….Coy's story gives me great hope….through you…listening to you helps me balance my dreams…without stories like yours...

This is what makes the forum a great community, everyone is in a different place with their LO"s illness and there are people here from all walks of life !

I hope this isn't a duplicae post as my last post seemed to vanish. Oh well,

Jeanne
Just wanted to tell you when I first found this forum, "I knew I belonged here". Hubby was one of those whose symptons came on fast and hard. All the typical symptons of LBD. I spent many hours reading and crying. Now after 2 1/2 years of Aricept and Namenda and a good doctor like Dr Yucus, our life is stable and if we can live like this for 7-8 years, I will feel fortunate. Oh yes, there are still signs of old Lewy hanging around but not as bad as before. We are still enjoying each others company although our relationship has changed but its a good relationship. Different but good. LO loves to dance on Saturday night. We always waltz in our living room.
This is our 3rd winter, after diagnosis of LBD, spending winters in Fl and LO still likes coming down here. I truly believe we are both healthier for coming to Fl in the winter. Winters in Wis are harsh. Down here we can walk daily.
Mary