Support Group for Those of Us Living With Mild Dementia

@janieohrn76 I was approved and all set to start the infusions. Two days before my first scheduled one, I decided to look up the warnings on this Lequembi. When I read them, I immediately canceled and told the doctor no way.
I have mild dementia. The doctor’s PA was actually smiling and almost giddy when he realized that I could qualify for the drug.
There was no discussion other than, let’s hurry up and get you on this drug.

It’s brand new, fast-tracked through the FDA approval process, and Medicare quickly decided to pay 80% of the annual cost of $26,500.00!
Frankly, I am VERY SUSPICIOUS when the doctor acts like a kid in a candy store when a patient with mild dementia appears in their office, and they qualify for Lequembi.
Lequembi is only 27% effective, for slowing the disease while you take it. At that rate, I am not willing to take the risks.

I have recently been diagnosed in the early stage of progressive Alzheimer's. Forgetting names and words that I should know - sometimes they come to me later. I find myself doing routine things out of my usual order. Sometimes just feeling a bit "off." It's scary to think about how this will progress. I am doing everything I can to stay active physically and mentally. My biggest concern is how this will affect my family. The last thing I want to do is be a burden to them. My faith in God is what keeps me from being completely overwhelmed. I know God will be with me and He will watch over my family, too. God bless all of you who are dealing with this. Miss Patty

I had the same experience - here you are having received devastating news and trying to process that you have a condition that has no cure and will only get worse. And the PA and the Neurologist can't wait to get you on a drug that has poor success rates and serious adverse effects. I know those of us diagnosed with Alzheimer's are feeling rather desperate to do anything that might buy us some "sound mind" time - but at what risk?
I have decided not to even try the Lequembi. I felt pressured and think they were seeing me as a guinea pig and not a person. I pray that there will be break throughs for new effective treatments that don't have such serious risks.

I agree with you!

I definitely felt the same way from my experience with the Neurologist! I will not be a guinea pig and spend my remaining time in an infusion room and getting more scans!

May I ask what support You receive from Alzheimer’s Society?

My neurologist and NeuroPsychologist also diagnosed me with Mild Neurocognitive Disorder. But they opened the discussion with a statement that although I would meet the criteria for the drug, they believe that - for me - the risks of brain bleeds outweighs the benefits. I agreed. We will get together in a year and see how I have progressed.

Hello everyone. PLEASE HELP ME!

When typing a reply or question to a specific person, you MUST ADDRESS your Comment to them. If not your Comment goes to me because I started this thread and my inbox is over flowing!

Please use their @name. FOR EXAMPLE @pb50 or @misspatty

If you have questions, let me know. But address your Comment to me. @SusanEllen66

Did anyone get a pet scan? I also in early stage have a voice difficulty problem which caused me to see the Neurologist actually, so she did a Beta Amyloid blood test and said because of that I have dementia along with MCI, then had another cognitive test at just age related dementia. Anyone else have similar symptom? Also wanted me to get on infusion, which I’m against.

@SusanEllen66, that is a good tip. It helps when people use the @username of the person they are addressing.

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