My husband was diagnosed with LBD about 6 years ago having exhibited symptoms for nearly 13. Does anybody in the Tyler, Tx area have a neurologist who can be contacted between visits when there are questions about medication, etc. I have waited for 2 days for a call-back about severe problems with new med. I stopped them on my on because the reaction was so bad. I don't usually do this but it was this or take him to the hospital where they wouldn't know much about LBD. Any help would be appreciated. Trugie G

Trugie,
Not sure if this will help, I hope it does, I think in an illness such as this one we need Doctors that will partner up with us because of the many fluctuations and medication problems.

East Texas Medical Center, Neurological Institute of Movement Disorders George Plotkin, PhD, MD, Director 700 Olympia Plaza, Suite 904 Tyler TX 75701 (903) 596-3648

Irene, thank you for the recommendation. We have seen 2 of the doctors there but were not happy with either of them. One only lectured on the bad conduct of another doctor and made no notation of a return visit. The other was not available at any time other than our appointment time. If we had a question or problem we were on our own. However, we have not seen Dr. Plotkin. I will try to get an appointment with him asap. You are so right that we need doctors who will work with us and not just leave us to guess at what to do. I've just had to do what I think is best. Thanks again, Trugie

It's disappointing the way so many neurologists seem to dismiss those with neurodegenerative diseases. I suppose it's because they feel there is little they can do. That's why it's really important to find someone specializing in either dementia or movement disorders [like Parkinson's]. They are more apt to order the correct medications and be able to assess the patient's status.

If your husband's neuro has a nurse practitioner or physician's assistant working with him/her, you might find they know just as much about LBD and are apt to spend more time with him and be more accessible.

My husband's neurologist, whom we both really like and who is very experienced in PD/LBD treatment, is leaving his office practice at the end of the year!! Sadly, this is becoming a very common trend.

Thank you for the reply. Sorry to hear of your situation. Do you have another doctor to take over your husbands care? God bless you both.

We'll decide that at his appointment in December. I think the neuro will be honest enough to tell us whether or not it is necessary for him to see another neurologist at this stage of the disease. And I know he will write a note to the SNF to the effect that I am to approve any new medication orders because he knows I have at least a rudimentary knowledge of 'bad' drugs. Mostly it's the strong anticholinergics I want to avoid.

Dear Trugie,

My dad's doctor in Tyler was Dr. Stasha Gominak. We really liked her and felt confident about the care she provided. She and her office staff seemed readily available especially when my dad was in the hospital earlier this summer. He died in June. One thing I liked about Dr. Gominak is that she was genuinely concerned about my mom as the caregiver and she also was willing to discuss the practical aspects of caregiving. Another thing is that she was not at all put off by us researching and asking questions about different drugs, etc. Her philosophy is that she learns a lot from her patients so we liked that. You can look up her website at drgominak.com and read about her. She also was very interested and encouraged us when we talked to her about donating my dad's brain and getting a definitive diagnosis so I felt good about that too. I have also heard good things about Dr. Plotkin and know that he comes highly recommended as well. I hope you are able to find someone.

Sincerely,

Jenny

Our initial neurologist was from Tyler but we changed to one at UTSouthwestern in Dalls when the Tyler doctor failed to send data on my husband when he was in a near death situation upon a return trip from Hawaii in April. This was after the hospital made 3 calls and I made 3 calls. To this day she has not bothered to contact me even when I addressed this with her office manager. We actually went to UTSouthwestern today and while it is a long trip, at least I know my husband is getting the care I want him to have. I am able to email them in between visits with issues. Our doctor at UTSouthwestern is Dr. Dewey.