New, Scared and Confused...

N'ayez pas peur de l'avenir ! c'est trés dur je jour où vous apprenez que vous êtes malade ALZHEIMER ! mais par la suite il faut savoir et pouvoir en parler aux autres! mais il vous répondent: tu oublie, mais moi aussi ça arrive à tout le monde ! alors vivez, sortez et voyagez si vous le pouvez § c'est ce que je fais, je pars en vacances en pension complete 2 fois par an ! mais cette année se ra 4 fois, car la maladie avance ! mais je cours plus vite qu'elle ! Courage et pas "désespoir" AMICALEMENT Michel

I’m currently having neuropsychological testing and I know something is wrong but I don’t have any diagnosis yet. My memory used to be like a sponge but now it’s getting bad. I will check back when I know more. I’m glad to see this forum. Bill H

Tim - I am new here as well. Father has Alzheimer's and after his older brother's rapid decline with it, he has been terrified of getting it himself. Thank you for sharing! I am trying to understand his thought processes and it helps to hear how others are feeling and coping, because he is good at being "dad" and deflecting - he is always ok and there for us.

Hello Daivd - you seem to have been on this journey awhile. Thank you for sharing all your insights! Might I ask: do you have any experience with the genetics like APOe and Gene Sight testing for specific medication metabolism issues?

Thank you, David. I would be interested in that medication name, if you are willing to share.

I would like to but I do not want it to seem like I am giving medical advice. Check with your doctor about what you are experiencing and an if he gives a medicine that begins with the letter "D" get back to me and i will talk to you about it and what i am experiencing. Is that o.k.

David, try taking deep breaths when you start to panic. This can help you to focus.

Iris

I did not have panic attacks but I felt discouraged for a while. Deep breathing helped me get out of the discouragement.

Iris

So sorry to hear that David! Not sure if this applies with dementia and Parkinsons. However, there is a lot insomnia, anxiety and nightmare issues that runs in our family. Most of us have found sleep position helpful. Here is an article about it. https://www.psychologytoday.com/us/blog/sleep-newzzz/201903/your-sleep-position-affects-much-more-you-think#:~:text=Right%2Dside%20sleepers%20may%20experience,harder%20time%20recalling%20their%20dreams.

I will try different styles

the Parkinson’s testing sounds very familiar to me. The reason that I went to a neurologist in the first place was because of tremors. They tested me for Parkinson’s. I even had a DATscan. During the appointments for Parkinson’s, they would ask me about cognitive function and I told him that it’s interesting that they’re asking that because I have been struggling with what I believe is more than peers of my age. I am 65. After the third appointment, they sent me home with a brochure for the Leqembi. I was in shock and couldn’t understand how the shaking in my hands led for me to start to be tested for mild cognitive impairment, which turned out to be Alzheimer’s related.
Following one PET scan that came back negative and was changed positive, and then another PET scan that just came back positive using a different medication it was hard to deny.
I have started taking Kinsula. My symptoms a few months ago were quite frequent but now they are more sporadic and that has nothing to do with the medication, as I just had my first treatment last Monday. I am trying to come to the point of acceptance, but because I am quite functional, I am having a hard time recognizing that this is not a misdiagnosis.
Two neurologists, a neuropsychologist, and now 2 radiologist have told me I have early Alzheimer’s.
I am trying but it is difficult to get to the point of acceptance, especially when people close to me question my diagnosis!
I would love to hear from anyone who has sporadic symptoms as because mine are sporadic. I am in disbelief with what the science is telling me.

I have alzheimers and am on doneprozil the old stand by. the new drugs are expensive risky and any short turn gain is minimal in the scope of things. as far as work explain your situation and say you would like to help as long as possible because it will help you challenge your self and also grasp the gaps that you will have to adjust to. fortunately you have beens shown a road from your relatives now you must make your own path. my path is art and making visual examples to help people understand alzheimers.

I have MCI (mild cognitive impairment), and started on Leqembi (another anti-amyloid plaque drug similar to Kisunla) in June 2024. I recently had my 16th infusion, zippo side effects for me.

I'm an Engineer and not a chemist or a biologist, but in my reading & understanding of the drugs, your explanation of Kinsula isn't precisely correct. Yes, Kinsula / Leqembi reduce (or eliminate) the amyloid plaque in the brain, and yes, amyloid plaque triggers a process resulting in the cognitive decline associated with Alzheimer's. But there is another part of the biology you missed: tau. As I understand the theory, for people with Alzheimer's, the amyloid plaque has been building up in our brains for a decade or so with no symptoms. At some point, the high levels of amyloid plaque result in tau being formed in our brains, and that is very bad. The accumulating tau translates into cognitive decline. Common tests for Alzheimer's prior to going on Kinsula / Leqembi include determining the amount of amyloid and tau in the brain. If there is just a teeny-tiny bit of tau in the brain, then Kinsula / Leqembi work very well, as reducing the amyloid plaque results in not much more tau getting formed in your brain. But if you already have lots of tau in your brain, the drugs don't work as well (in terms of slowing cognitive decline) since they don't scrub out the nasty tau.