Alzheimers care and treatments: Consult with Mayo Clinic?

@paul55 I am taking my husband(74) to Mayo in Rochester for the four day testing regimen next week. We were on the wait list for four months, after his neurologist made the referral. When I inquired without the referral it was a 6 month wait to make an appointment.
I got a call in January for a March 30 appointment. I am not sure if they schedule quarterly or bi annually.
I am relieved to finally have a diagnosis as to what type of dementia he has. I hope that the results will help plan for our future.
Hang in there and remember patience is a caregiver’s mantra.

@upgirl2013 thanks for your information. Hope things go as well as possible. Just wondering what you told your local neurologist was the reason you wanted a referral to Mayo? Just that you wanted a second opinion or something else, or was it your local neurologist idea. Based on your info, I am thinking of asking our neurologist who is a Alzheimer’s specialist, for a referral if it will speed things up. But obviously I don’t want to alienate our local neurologist. I think any good doctor would not object to getting a second opinion, but who knows.

@paul55 Mayo must have changed their policy because in the past they required a referral before they would even consider you for an appointment. I would not hesitate to ask your local doc for a referral. That should not be an issue. I told our doctor it was for a second opinion. If your neurologist has an issue with it, maybe time to find a new doctor.

@paul55 my husband’s neurologist is based in Green Bay and saw my husband twice in person and twice on a Telehealth visit. One year ago I asked for a definitive diagnosis and the neurologist said MCI with a possibility of early onset Alzheimer’s. On our last Telehealth visit I started with the request for a referral to Mayo. I was relieved that his response was very positive. The neurologist was willing to keep my husband on Aricept and the supplement Membrin indefinitely. My husband’s symptoms and mental capabilities were changing. My husband has scored 13/30 on the MoCA test two years in a row. I am frustrated that we do not know which type of dementia that we are dealing with. If your local neurologist is professional, he/she will give you a referral and continue to follow Mayo’s suggested protocol. Good luck!

@trishaanderson @theglobalnomad1 @jlharsh and everyone, you may also be interested in following the Mild Cognitive Impairment (MCI) Blog https://connect.mayoclinic.org/blog/living-with-mild-cognitive-impairment-mci/

It is a blog on Mayo Clinic Connect written by the 3 Directors of the HABIT program and team members. HABIT stands for Healthy Action to Benefit Independence & Thinking®

Here's more information about the HABIT program: https://connect.mayoclinic.org/blog/living-with-mild-cognitive-impairment-mci/tab/resource-5394/

@trishaanderson Our HABIT reunions in Jacksonville are monthly and my husband wouldn't miss them! He balked a little at going to the HABIT program at first but had just been diagnosed and realized we had to do as much as we could to learn more. He agrees it is THE best program for anybody dealing with this. I think we learned at least a semester's worth of info, all of it helpful, interesting, and life- changing for both of us.

@theglobalnomad1, your HABIT reunion experience as a caregiver sounds fantastic, and hopeful! Some comments are just so peaceful to read and yours impacts me this sway. I love, love, love this! hope you don’t mind me digging a bit.

What convinced your husband to go to the initial program? You mention it has been life-changing for both of you. Would you share how this has affected you specifically?

@theglobalnomad1
Our program was in 2017, and they only did the one 6-month reunion. They may do monthly ones now. I think it's such a great support group.

Our trip to Mayo Neurology in Rochester went well. Every employee was kind and knowledgeable. My husband’s first day was filled with appointments, starting with a brain MRI. We met with the neurologist that afternoon. The doctor was fantastic and asked my husband a series of non threatening questions and then eased into a series of cognitive test questions. It was decided at that point that three of the tests scheduled for the next day were unnecessary. The staff rearranged my husband’s schedule and we were able to head home a day early.
During our first visit with the neurologist, we were told that my husband is in the moderate stage of Alzheimer’s and cannot drive a car or boat. The doctor also discussed getting our estate in order. During that visit, husband was shutting down after a long day. I messaged the doctor that evening to fill the gaps regarding my husband’s condition and behavioral changes. The doctor answered first thing in the morning and thanked me for reaching out. On day two my husband had a glucose pet scan. That scan determined that he is in the moderate stage of Alzheimer’s with Anosognosia. Before we left for home, we met with a social worker, she was fantastic and gave us some coping skills, diet ideas and ideas to keep our minds sharp. The social worker told my husband to tell family and friends. She wanted him to get used to saying the word Alzheimer’s.
Our second visit with the neurologist was via video chat. He prescribed Namenda and took my husband off his supplement because it contains gilgbo.
We were told that my husband will not have any more brain scans or tests for dementia. I found our experience at Mayo Clinic fantastic and that my husband had a thorough examination regarding his condition.
The Anosognosia diagnosis makes sense. My husband keeps saying that he felt well going to Mayo and feels great now. He has no idea of what he cannot do. He does not try to do the things he used and does not understand that it is not normal for me to do his tasks. Surprisingly my husband asked to surrender his driver’s license and did so without a fight. There have been a few times he mentioned that he lost his independence and is frustrated he cannot come and go like he used to. I am sure as time goes on, we will get in a routine until his condition starts getting worse(again).
This stage has been much more pleasant than the last. I am going to enjoy each moment as I know that things will not always be smooth.
My husband is taking 10mg Aricept and 10mg Namenda daily. My husband is reacting to the Namenda well and has more energy. I am afraid to add the additional 5 mg to his morning dose for fear that his energy level will turn manic, so I am going to wait another week.
I have been pretty emotional since we got back. I am relieved that we finally have a diagnosis and sad for what our future looks like.

@upgirl2013 I admire you taking the steps to get a diagnosis. How old is your husband? My husband was also diagnosed in middle stage and takes the same meds. He does not like that he no longer can drive. I can still leave for a couple of hours to go to gym or walking. I don't worry about him wondering as he has severe neuropathy and uses a walker or wheelchair. I hope I am able to care for him until the end. He is 82 and I am 79 but I am in great health. This an unfortunate disease. I would like to hear what things he accepts to keep his brain active.
Have a great day.