Alzheimers care and treatments: Consult with Mayo Clinic?

That's where we are too. Good days and bad days. Don't want to take risks but hopeful for treatment that helps.

If you are looking to confirm the diagnosis and to know what is happening in the research go to Mayo. I took my husband there 4 years ago and had him checked out top to bottom. They were wonderful!

If all has gone according to plan @japlok, your wife’s first treatment was this week and you are getting ready to travel next week. You are a step forward in the exciting and scary story.

How is your wife doing? How was treatment? How are you? I have so many questions.

Hi Janell, yes, my wife had her first treatment this past Monday and it went well. Oddly enough it started out not so good. She took Tylenol for a possible headache and Pepcid for possible stomach issues. She had never taken Pepcid before and soon found out she doesn't react well to it. About 3 minutes after getting the Pepcid, she got really flush and started throwing up. That lasted about 5 minutes, and after that she said she felt just fine.

She had no difficulties with the infusion and the side effects she experienced were nausea, diarrhea and fatigue. Diarrhea gone after the day of treatment, mild nausea and fatigue gone after the third day. Now she is on fire with being active. I just hope the side effects become less and less after each infusion.

Heading to Rochester this Tuesday after our phone appointment and returning home on Thursday.

I still only feel good when she is doing good although that is questionable at times.

Ask away, I am more than happy to answer your questions, if I can.

Oh geez, it sounds like you learned something valuable with the Pepcid. Never again! Safe travels, Ken @japlok. I delayed replying waiting to make sure my schedule has been finalized. My husband and I head to Rochester Thursday, so it sounds like we will be able to wave passing by each other on the road.

It is encouraging your wife’s initial Lecanemab actual treatment on the 25th went well. I am hopeful with you that her side effects lessen more and more as she goes through more of them. The way she has rebounded is a win! What does your wife’s treatment schedule look like at this point?

I want to introduce you to @tdrell who is planning her own trip with her husband who is being evaluated for his MCI, also at Mayo Clinic Alzheimer’s Department. She is trying to navigate all things early-morning MRI, shuttle planning, Clinic schedule…I thought you may have (or soon will have) a first-hand perspective for her since you have initial appointments this Tuesday through Thursday at Mayo, MN.

tdrell, when will you be traveling to Rochester for your husband’s appointments?

Janell…thanks for your prompt thorough replies!
Have a safe journey Thursday.
We leave driving from Wisconsin on Sept 27…to be in place on Monday Sept 29th…last appt on thursday Oct 2.
We were on wait list for Appt from last July 2024.

@jlharsh
Hi Janell,
We are in Illinois right now getting ready for our phone appointment, then off to Rochester. We will leave Thursday morning after our last appointment and head back to Illinois to spend time with friends there. Friday morning dentist appointments for both of us (haven't given up our old dentist yet), then heading back home to Indi. Diana's appointments on Sept 9th, 23rd, Oct 7th so far, so every other Tuesday. Hopefully we can keep that cycle going. Safe travels to you and your husband and best of luck with everything.

@tdrell, we are staying at the Kahler Grand Hotel which is right behind (and across the street from) the Mayo facility (200 1st St Sw) we have all our appointments at. Decent price and obviously very convenient. I will be posting after the appointments with details on how it went. Good luck to you and your husband and will be thinking about the two of you through this process.

Ken

Ken…will be interested re pre visit phone call …what it covers….does it make appt changes etc.?
Will be interested in your hotel site…close to clinic…
we will be at Residence Inn South…a distance from Clinic but has shuttle…rather new…free….which i wonder if and what amt to tip driver with. Will be there Monday-Thursday so wanted more of a living space .

Hopefully traffic , weather, road conditions allow for smooth voyages for you both
Terri

@tdrell Terri, it doesn’t sound like @japlok Ken will be taking a shuttle since they will be staying across the street from The Clinic so I will pipe in. I am really bad at knowing proper shuttle etiquette. My husband is sitting here and telling me “a couple of bucks, no more than $5 for each shuttle ride. But really, there is no right or wrong.”

Hi Terri, the phone call was simply for Mayo to gather information about medications/supplements, confirm the patients' current medical condition, and instructions for the subsequent appointments.
Our hotel could not be any closer to the location all of Diana's tests are being done. Right across the street!!!!
We got here around 7 pm and there was absolutely no congestion from construction.
Not sure if the amount is appropriate, but I usually tip a couple of dollars for a simple shuttle.