Alzheimers care and treatments: Consult with Mayo Clinic?

Posted by japlok @japlok, May 12, 2025

My wife was just diagnosed with AD and is currently on Donepezil. She will be taking a MMSE test in a couple of weeks to see if she qualifies for Leqembi or Kisunla. Does anyone recommend trying to get a consultation with a doctor at the Mayo in MN or stick with my current doctor? I'm looking for the best 'team' to help my wife and don't want to miss any opportunity if one is there. I have done nothing but read about the disease and tried to find any information on advancements to cure AD or slow it down significantly but haven't found anything that is promising. I read about using ultrasound to allow for the medication to attack the plaque quicker and also something called Perispinal Etanercept where an FDA approved drug for arthritis is used for AD treatment. I just need help with our path forward.

Interested in more discussions like this? Go to the Caregivers: Dementia Support Group.

Profile picture for theglobalnomad1 @theglobalnomad1

Mayo has a 3-week program, held several times a year at all Mayo campuses ( I think!) called HABIT that should be imperative for anyone with family members who have MCI! My husband is not a Mayo patient but was welcomed into the program and though he grumbled at first about having to do 50 hours of classes, he agrees it has been the best thing ever!
Sessions are both together with caregivers and separated into patient sessions and caregiver sessions. Excellent information on everything to expect, promising research, financial planning, nutrition, ways to maintain a semblance of independence and organization, and even a year's subscription to Brain HQ for brain games that help different functions of the brain. My husband is in the early stages of AD, has been taking Kisunla infusions for 6 months, and we utilize what we learned at HABIT constantly. In addition there's a monthly alumni "reunion" that I figured I'd have to drag him to, but lo and behold... he looks forward to it and catching up with his fellow patients and we both enjoy the information updates and mingling with folks going thru the same things!
And PS... Medicare apparently covers the whole thing except for about $650 that is worth every penny!

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@theglobalnomad1 Do you know if offered online?

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Profile picture for panela @panela

@theglobalnomad1 Do you know if offered online?

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@panela , do not know answer, but this flyer have phone numbers at bottom. I suggest contact a location directly. https://mcforms.mayo.edu/mc2800-mc2899/mc2815-10.pdf

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Profile picture for Janell, Volunteer Mentor @jlharsh

Great information about HABIT @theglobalnomad1, and 2nded by @trishaanderson. Must be valuable! I have read the program is 10 days. Has there been a change in the program or maybe, are the 10 days spread out over a 3-week timeframe?

@japlok, I don’t remember if this was something discussed when you and your wife went to Mayo MN for consultation? @tdrell, you had mentioned finding out more about the program. Did you ever pursue more about it? I think this is where our conversation left off:
- Discussing Mayo Clinic HABIT
https://connect.mayoclinic.org/comment/1408967/
What great information that the HABIT program is offered at each Mayo Clinic location and that non-Mayo members have experienced it as well. I have read that HABIT focuses on helping with skills to stay independent following a diagnosis of Mild Cognitive Impairment (MCI). Then as you mentioned @theglobalnomad1, you now have an alumni group for support.

How did you find out about this program, how would interested patients and/or caregivers pursue it? Do you know, is this program restricted to “recently diagnosed MCI”?

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@jlharsh, I am surprised but we didn't discuss it while at the Mayo Clinic. I will be looking into it because it sounds like an awesome program.

An update, my wife is doing good with the infusions and doesn't have any more side effects. The infusion has become a fairly simple process, and fingers crossed it will continue that way. Tomorrow will be #15.

On another note, provided there are no issues switching to a local facility for her infusions in Illinois, we will be moving back there from Indiana. My wife wants to be closer to her friends and feels much more comfortable where we lived before. Hopefully there are no issues with the 'medical' move.

Ken

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Profile picture for Laurie, Volunteer Mentor @roch

@panela , do not know answer, but this flyer have phone numbers at bottom. I suggest contact a location directly. https://mcforms.mayo.edu/mc2800-mc2899/mc2815-10.pdf

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@roch Thank you so much for the info will call.

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My wife has just been diagnosed with mild cognitive impairment and AD. She is going through the process to begin Kinsula infusions--hope to start in May. Our neurologist is in the Twin Cities and seems fine, but I wanted to get a second opinion, consult, at Mayo in Rochester. Thinking Mayo would be on top of any new developments, treatments, etc. Anything to give us more hope. Got through the initial process so she will have a consult, but we were told there is a waiting list and it might be 3 months to a year. Disappointing, to say the least, tho I understand there are lots of folks getting this diagnosis.

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Profile picture for paul55 @paul55

My wife has just been diagnosed with mild cognitive impairment and AD. She is going through the process to begin Kinsula infusions--hope to start in May. Our neurologist is in the Twin Cities and seems fine, but I wanted to get a second opinion, consult, at Mayo in Rochester. Thinking Mayo would be on top of any new developments, treatments, etc. Anything to give us more hope. Got through the initial process so she will have a consult, but we were told there is a waiting list and it might be 3 months to a year. Disappointing, to say the least, tho I understand there are lots of folks getting this diagnosis.

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@paul55, what about trying Mayo's other locations, Florida or Nevada? Not sure if you would have to go through the process all over again but worth a shot. Also, the Cleveland Clinic may have a waiting time that is less than Mayo.

...just a thought.

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Thanks for the suggestion.

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Profile picture for japlok @japlok

@jlharsh, I am surprised but we didn't discuss it while at the Mayo Clinic. I will be looking into it because it sounds like an awesome program.

An update, my wife is doing good with the infusions and doesn't have any more side effects. The infusion has become a fairly simple process, and fingers crossed it will continue that way. Tomorrow will be #15.

On another note, provided there are no issues switching to a local facility for her infusions in Illinois, we will be moving back there from Indiana. My wife wants to be closer to her friends and feels much more comfortable where we lived before. Hopefully there are no issues with the 'medical' move.

Ken

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Wow @japlok, 15 infusions. I am happy to hear they are going well!

It looks like you have a lot on your plate now with checking into Mayo’s HABIT program and navigating a move. I admire your commitment to walk through your wife’s Alzheimer condition with her in a way that faces each challenge as an opportunity to live your best lives. I know this isn’t what either of you would choose.

I look forward to hearing more about what comes next.

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Profile picture for paul55 @paul55

My wife has just been diagnosed with mild cognitive impairment and AD. She is going through the process to begin Kinsula infusions--hope to start in May. Our neurologist is in the Twin Cities and seems fine, but I wanted to get a second opinion, consult, at Mayo in Rochester. Thinking Mayo would be on top of any new developments, treatments, etc. Anything to give us more hope. Got through the initial process so she will have a consult, but we were told there is a waiting list and it might be 3 months to a year. Disappointing, to say the least, tho I understand there are lots of folks getting this diagnosis.

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@paul55 I tried to get a consultation, second opinion, and maybe possible care for my husband at the Mayo Clinic in Arizona. I was told that the neurology department is full and they are not accepting any new patients. Very disappointed...

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Profile picture for llthomson @llthomson

@paul55 I tried to get a consultation, second opinion, and maybe possible care for my husband at the Mayo Clinic in Arizona. I was told that the neurology department is full and they are not accepting any new patients. Very disappointed...

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@llthomson
Sorry to hear. Guess I should count us as lucky that we made the waiting list in Minnesota. Maybe you could get a second opinion at a different neurology office.

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