Infusion Therapy. Step 1

In May of 2024, My husband was diagnosed with MCI and early onset Alzheimer’s by a neurologist in Green Bay, WI. It took a few year to convince his general practitioner to refer us to a neurologist. My husband will only see a neuropsychologist at Mayo. Mayo Clinic in Minnesota is 5 hours from our home.
This past week I submitted the online request for an appointment for my husband to be seen at Mayo and followed up with a phone call. He is on a 9 month wait list to be able to schedule an appointment. My husband’s behavior is changing daily and I am hoping he will still be a candidate for some other therapy other than taking Aricept.
I am open to any suggestions as to how I can get him sooner.

I am sorry for your predicament. A 5 hour drive to Rochester is a tough call. Especially if they determine he needs to be seen regularly. I have not heard back yet about my request for an initial appointment but we only live 1 1/2 hrs away from Mayo. It sounds like your husband is knowledgeable about this disease since he is adamant about seeing only a neuropsychologist. Maybe check around near Milwaukee or even Chicago? At least your drive would be shorter. Good luck and hugs to you.

My husband was diagnosed with MCI by a Neurologist at a world class hospital a few years ago. At the time, the new infusion therapy was just being started and in trials. Since then as we know the drug Lecanemab and Donanemab have been approved for use for Alzheimer's disease. Both are given through infusions, one every other week, and the other monthly, respectively. Your first step for your wife will be with a Neurologist specializing in dementia. It's a scary term to hear, but it's best to get knowledge for the future. My husband was diagnosed December 2024 with AD and is receiving Lecanemab infusions every other week. He is also participating in other studies currently, and is in a support group with patients and care partners. I would suggest Mayo Clinic for initial testing or perhaps look at University of Rochester Medical Center? I am happy to answer any additional questions you have, but it is easier to begin with Step 1 as you are doing. Best of luck to you both!

Thank you for your reply. My husband does not realize the severity of his cognitive decline and is confused why I told him he needed to take the step in his treatment. In my husband’s mind, Mayo is the best and refuses to go anywhere else.
We have a Telehealth appointment with his neurologist in November and will request a neuro psych referral then.
Good luck and I hope you can get in soon.

My husband was diagnosed with MCI due to Alzheimer’s earlier this year. We live in Florida, and there is a Mayo Clinic in Jacksonville where we used to live. However it takes a year to get in to see a primary care physician there, and you have to do that first before you can be referred to one of their specialists like Neurology. Same story at University of Florida in Gainesville, which is closer to us. We didn’t have to go through primary care, with them, but the first appointment was 11 months away. Since he’d been showing symptoms of cognitive decline for several months to a year prior, I wanted to move more quickly because the earlier you get it diagnosed, the earlier you can start either of the infusions. So we began with his primary care physician who prescribed Aricept and referred him to a neurologist in our area who wasn’t rated very high. So I did my research and found a highly rated neurocognitive treatment center in Jacksonville Beach - not affiliated with Mayo, and it took only 3 months to get in there. Although it’s an hour and a half away from where we live now, we were able to get a complete neurocognitive assessment, including imaging studies (MRI and PET scan), lab work and in-office cognitive functioning tests, and he met the criteria for MCI due to Alzheimer’s. Because we’d caught it early enough, he started Kisunla infusions locally at an infusion center and fortunately has had no side effects. His behavioral issues had became unmanageable at home - episodes of unbearable verbal rage that could go on for days. I got in touch with his neurologist who had a teleconference with us, and he was started on Lamotrogine, Buspar, and Seroquel - the Seroquel is taken only as needed. This combo has worked quite well, along with changes we made in routines and managing expectations as the disease slowly advances (much more slowly than without the Kisunla). I have hired someone to provide yard maintenance and someone to clean the house weekly as I’m disabled from an autoimmune arthritis and can’t do all that myself. It’s cheaper than assisted living. So he’s more comfortable now, and actually is able to continue to work full time at a job he loves that he feels provides meaningful purpose to his life. He says since being on the Kisunla, he thinks more clearly. We try to focus on the positive, and I find that this combo of approaches we’ve done has given us a level

Wow! What a great story. Your husband and you seem to be a great team in this battle. Your resourcefulness is inspiring. And the fact that through all of this, your husband continues to work full time! Thank you and God Bless both of you.