Alzheimers care and treatments: Consult with Mayo Clinic?

@jlharsh I so appreciate your note tonight I had a long day with my husband. he didn't have a good day. But we've had to move so many times, we left the hotel today, now in a rental for 3 1/2 months. We had to move out of our house due to mold issues, and we've struggled to try to a home equity loan approved to do the work. The bank has one speed, slow. So we have really been in limbo at that same time he was diagnosed with MCI. That back and forth, I believe isn't helping my husband at all, so I'm hoping I can settle things down. I just have to figure out a way to be more patient with him. I found his neurologist from my primary care doctor, when both my husband and I went in to see her. Dr. Jeffrey Gelblum runs his neurology practice in Miami and in Jupiter FL. He has a group called First Infusion Group, that he's affiliated with and runs. That group administers the GUIDE program, which is Medicare approved, where their group does the infusions at Dr. Gelblum's office. My understanding is that there are lequembe clinics where those treatments could be given if we had to travel, but for now, we are staying in one place locally to make sure he doesn't have brain swelling and bleeding as a side effect. The other providers you reference as the care team, are the affiliations he has with certain labs, that ONLY do his petscans, etc., Then his practice for visits, and his practice that also includes a dedicated team, First Infusion Group where there is a qualified RN lequembe people who do the infusions. In that same lab, there is a PA, looking at the MRI results, etc., along with the doctor, etc. Yes ,the schedule follows: every 2nd infusion, 4th and 7th, he has an MRI. After that, he goes to the 14th infusion, then another MRI. If something shows up on the MRI, he doesn't have that next infusion. My husband goes for his 5th infusion this coming Monday. He seems okay, but he's not eating a lot and that worries me. @japlok was after the 4th as you said, but I was told by Dr. Gelblums office that the guidelines recently changed pushing the MRI up sooner than the 4th. What I realize is we as caregivers have to be all over this....because sometimes the communications with the doctor's staff - because they have so many people getting treatment, falls short. I had to come home and type a schedule. Just to keep it together. Yes, you are correct I don't believe there is a cookie cutter approach to addessing a medical challenge. It's interesting I sold a neighbor's house in 2023, and I was good friends with the wife. She had MCI - but much farther along than her husband wanted to believe. Their adult children were in denial. The husband in denial. Being with my neighbor and trying to help her every day, was like a primer for me, when my husband was diagnosed. Little did I know, that two years later, he would have a similar diagnosis. Life sure deals us challenges.....we just never know. Thanks for writing to me. Appreciate this group alot.

@jlharsh I've been actively reading, everything on this Mayo Connect support group, and I'm really thinking of getting a second opinion on my husband's MCI. He's taking infusions, lequembe on the 4th one, but in reading a lot of comments, I'm seeing that sometimes there can be a misdiagnosis. I called central scheduling Mayo Jacksonville, will need to call back tomorrow. DId anyone else out there get another 2nd opinion that may have varied from the first diagnosis? Thanks, to all caregivers and your sharing.

Hi all,

Just wanted to give you an update on Diana's infusions. Next week she will get her 6th infusion. So far things are going smoothly with no major side effects. She has some nausea and fatigue that slows her down....but definitely not out!!! For her 6th infusion she will be a hospital that is only about 10 minutes away from where we live. Much better than the 45 minute drive. Perfect timing with winter around the corner.

Well wishes to everyone.