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jimdianne avatar

Infusion Therapy. Step 1

Caregivers: Dementia | Last Active: Sep 22 9:31pm | Replies (6)

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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

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Replies to "My husband was diagnosed with MCI due to Alzheimer’s earlier this year. We live in Florida,..."

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.