Alzheimers care and treatments: Consult with Mayo Clinic?

Hi Ken
Very helpful information!!
Hope all goes smoothly!
Thank you!
Terri

Checking in @japlok.
How did it go last week Ken, with your travel, Mayo appointments, visiting friends, etc?

@tdrell, I am thinking your husband has appointments at Mayo Clinic coming up.

When do you head out for Rochester? How are you both doing?

@jlharsh your memory is correct....we just returned from our 4 days at Mayo on Friday.....exhausting but worthwhile. So now the next step in this journey of life....MRI, blood test,Pet scans all confirm along with the Psychology assessment early MCI......all RX options reviewed....getting IV infusions not the route considering on Eliquis for Atrial Fib......and other reasons not to consider....mostly the potential gain of several months of slow down of the disease vs the risks of the treatment.
husband is 82....
both so impressed with every aspect of the Clinic and the processes.....it would take pages to list.
Most important...the people who work/volunteer there....from every position were so sweet and patient and helpful.
We were satisfied with the Residence Inn...near Apache Mall....only a few years old....good shuttle service....clean and quiet and sweet workers there...had driven from wisconsin so had car there but too tired to do anything but go to Clinic and shuttle back to hotel. Gave drivers $5 dollar tip each way....noted that the drivers were sweet and helpful even when folks did not tip.
So now to rest up and start implementing healthy habits suggested....possibly look into the Habit program....anybody know anything about it????

@jlharsh
Hi Janell, I finally get back online and write a lengthy response and found out today that it didn't post, so here I go again. Overall, the entire trip was great, we were able to visit and stay with 4 different couples. The Mayo Clinic portion of the trip was very productive with the expected results. There were a couple of minor glitches but nothing that changes the outcome of the trip. My insurance denied the PET scan and because of that the doctor used the original scans and actually showed and explained them to us, which our doctor in Indiana did not do. Because of the denial my wife ended up not having to get the blood work or MRI so we were only there for one night.

Yes, a long trip for one night, but well worth it. The doctor was surprised and happy when we told him my wife was already getting the infusions which we thought he already knew. He even brought in another doctor just to speak with us and reassure us that she is on the right path.

I will say that everything everyone has about the quality of care the Mayo Clinic provides was spot on. I was very impressed and grateful that my wife was taken care with such kindness and efficiency.

We are now back in Indi and ready for Diana's 4th infusion tomorrow morning. On Thursday she gets her first MRI after starting the infusions.

So how was your trip to the Mayo Clinic? I hope it went as you and your husband expected...positive...

Now that things have slowed down for us I will make sure to post updates more frequently.

Ken

My husband was recently diagnosed. We didn't go to Mayo Jacksonville or Rochester, although I'm a big fan of getting their opinion on anything that is difficult to diagnose and solve. When I couldn't solve a severe medical problem back years ago, I booked Rochester, later booked Jacksonville for something else. We found a good local neurologist here in Jupiter florida, so we ended up with him, vs. heading back to Mayo, nd my husband has been on 4 lequembe infusions, the fifth one two weeks from now. In between every two infusions, he has an MRI, that the doctor looks at to track what's going on in his brain. If you do go to Mayo, make sure to check your insurance. I know midway, they stopped taking Medicare Advantage Plans in Jacksonville, but they do take them in Rochester.

@tdrell, it is great to hear you and your husband had such a wonderful experience and feel encouraged to live your best lives! I totally relate to your comments about “resting up and start implementing”. That is exactly what I feel like every time I return home from a trip to Mayo Clinic.

I do not know much about the Habit Program and did dig around a bit. I am including a link to the Mild Cognitive Impairment (MCI) Blog in case you have not found it. The blog is loaded with information about the program and recommended resources. It sounds perfect for you and your husband who are dealing with early MCI. I am interested to hear what you think! I am curious, too to learn if it may be helpful for others in this discussion dealing with Alzheimer’s. https://connect.mayoclinic.org/blog/living-with-mild-cognitive-impairment-mci/tab/resource-5394/

“The HABIT Program is for individuals with MCI and their loved ones to learn the best strategies for adapting, coping, and living their best lives with MCI. Follow the HABIT blog to receive updates and information about adjusting to MCI and combating dementia.”

I am so glad you have a comfort level that you are doing all the right things and know where to focus to do all you can. Do you anticipate going back to Mayo in the future or was this a one-time consultation? What is next?

Hi, @kjc48. There is so, so many things to consider and it sounds like you are navigating well. I take away from you there is no cookie-cutter approach to addressing a medical challenge. Finding a good neurologist close to where you live has to provide a tremendous comfort for both of you.

If I am reading correctly it is interesting that your husband has an MRI in between every two infusions. @japlok mentioned his wife is getting her first MRI after the 4th injection.

How did you arrive at your husband’s MRI schedule? Also, how did you find your husband’s current neurologist, and does he have other providers making up his care team?

Ken, @japlok It is wonderful to hear your comfort with firming up Diana’s treatment path. I also love how you took advantage of a road trip to see so many friends along the way. Thanks for thinking to ask about my Mayo trip. I am back again now, continuing to make progress.

Congratulations on learning how to understand PET scans. My daughter in St. Louis made a trip to Mayo MN a few years ago for a second opinion about getting stem cell treatment for her hip. They sat her in front of a screen and did exactly the same thing with her MRI she brought with her. In her case they completely disagreed. They recommended surgery and connected her to a surgeon local to her back home. That doc was a great experience for her.

You commented that your wife’s 4th infusion and first MRI after starting the infusions were both scheduled for last week. I know you are also settling into being home. I look forward to hearing more about what’s next after you have decompressed.

How did last week go? How is your wife doing?

@jlharsh
Hi Janell, everything is going good so far. Diana's MRI came back clean with everything negative or zero for any bleeding or swelling in the brain. That was a relief and an encouraging sign for going forward with future infusions. As expected Diana has her down days, but she seems to bounce back from them quicker.

This past weekend we went up to visit friends in Illinois and drove up to a town in Wisconsin called Brodhead and rode our bikes to New Glarus Wisconsin. It was a lot of fun and got Diana moving.

Your daughters experience just confirms the quality that the Mayo Clinic brings to our quest for good health. I have messaged the Mayo doctor about supplements and receive a quicker response from messages I send to our doctor here in Indi.

I hope your progress continues on a positive path and thank you continuing to stay in touch.

I have attached a pic of my beautiful wife Diana on our bike trip. She is happiest outside with friends.
Ken