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DiscussionAdvice to caregivers from another viewpoint - pt with dementia
Caregivers: Dementia | Last Active: Jul 21 10:13am | Replies (41)Comment receiving replies
Replies to "We are on track for Infusion Therapy for my wife's Dementia. Trying to obtain pro/con feedback..."
@randyreg I've answered this a few times for others so not to be redundant but helpful since I saw your @randyreg post in two places re: infusions. My husband went on lequembe infusions August, 2025. Since then he's on his 20th or 21st infusion. The decision for us was easy. To do nothing wasn't acceptable; to do something to slow a progressive disease down, was paramount. We knew there were risks, with brain swelling, etc., but we also knew that he would be receiving periodic MRI's, after the 3rd, 5th, 7th, and I believe 10th infusion. So his therapy would be managed. I was told yesterday by the neurologist staff they don't have him do MRI's again, unless he is having headaches. He appears to be tolerating the infusions well. However, we are trying to eat cleaner, he takes naps if he's tired. We get out and walk to exercise, since we're both retired. And we try to keep things structured and calm in the house. I don't remember my husband's numbers when diagnosed but I do know the doctor said he was in the mild stages, a prime candidate for lequembe. I also know in going to the infusion center, both men and women, all ages from 60 and up are on infusion therapy. Do I notice any difference? He still has sequencing issues with his memory but I do notice he seems to be less forgetful in where his things are: wallet, backpack, keys, etc. We have a process where everything goes in the same place every day (or we hope!) We also have a follow up Guide program as part of the First Choice neurology infusion team in South Florida that calls and checks in with a nurse if we need any help. For now, we're hoping, his infusion therapy will make an impact on slowing down the amyloid plaque in his brain. Hope this helps. Best, Karla
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randyreg So I just had my PET Scan Friday and waiting to get the news from my doctor that I can now get scheduled Leqembi infusions. I am guessing her score on the PET Scan is above 30 or so. Mine is 34.9. I do everything still--drive, cook, clean, play mah jongg and have lots of energy for 79. Do I need to get this infusion into my life for the rest of it? Don't know...got nothing else to support doing nothing so I'm going forward with it. The at-home injection is coming along pretty fast so maybe it will get approved to start earlier than the 18 month regimen now in place. I have been on 5mg Aricept but decided not to go on to 10mg. Keep in touch and good luck with your decision. It's a big one...