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Support Group for Those of Us Living With Mild Dementia
I know there is a Dementia Caregiver Support Group.
I would like to have a group for people like me. I am entering the Mild Dementia phase from Mild Cognitive Impairment.
It’s frightening to think about my future.
Could a group for Dementia Patients be started?
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@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.
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3 ReactionsI 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
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5 ReactionsI 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.
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6 ReactionsI 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.
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1 ReactionHello 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
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3 ReactionsDid 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.
To help spare your inbox, you also have control to change your settings on this thread. Here's how:
1. Go to the original post of discussion you're interested in.
2. Click the bell icon in the bottom right of the first message.
3. Select the setting you wish from the 4 options:
- Send me an email and on-site notifications.
- On-site notification only.
- Notify me only if someone @mentions me or replies to one of my comments.
- Mute this discussion. Do not notify me.
4. Click Save Setting.
Currently, I think you may have selected the first option. You may wish to change it to option 2 or 3.
See this article that explains in more details and with pictures
- How to customize your notifications and settings https://connect.mayoclinic.org/blog/about-connect/newsfeed-post/how-to-customize-your-notifications-and-settings/