New, Scared and Confused...

michflo34

https://alzconnected.org/discussion/68243/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

David1946

https://alzconnected.org/discussion/comment/199409#Comment_199409

Hi Tim I told you that I would let you know if I had Parkinson well I do not have it.

GWH3

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

Iris L.

Welcome, Bill. Please keep us updated on how you are doing.

Iris

nitebird

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?

David1946

https://alzconnected.org/discussion/comment/208930#Comment_208930

https://alzconnected.org/discussion/comment/209008#Comment_209008

Welcome to the forumno

No the only test I have had was a brain scan to see if I have Parkinsons and that was negative. I wish I could recall the med l am on (I'm not home to check on it)that has helped me to make my nightmares to slow down, let me tell you it really works.i missed . . It Ione night and boy what a nightmare I had that night let's just that I was attacked by 2 guys, if you have been following my story you what during That nightmare. Then I have had one that I woke up singing Christmas Carols.There are more.

nitebird

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

nitebird

Tim, if you haven't been on any medications yet, you may want to check out the phase III gamma therapy HOPE trials Cognito Therapeutics. https://www.cognitotx.com/clinical-studies#hope-study

MIT is behind this. https://news.mit.edu/2023/40-hz-vibrations-reduce-alzheimers-pathology-symptoms-mouse-models-0605

David1946

https://alzconnected.org/discussion/comment/209026#Comment_209026

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.

David1946

Hi every one I had another nightmare last night my wife and I went to some kind of a flea market she went shopping while I was in the mood for salt water taffy after I found it I went looking for my wife I could not find her so I went to call her on my phone and it slipped it out of my hand and fell into to big hole but I could not reach I started to panic. I finally got into to the hole and I thought I had found it but no there were at least 3 other phones there but mine was not one of them at that point my wife woke me up while I was crying help me I can not find my phone.

Iris L.

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

Iris

David1946

My wife wakes me up when I am panicking and says David take some deep breaths and they do help. I find myself taking some breaths during the day when it feels like the walls are closing in on me and it helps.

Iris L.

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

Iris

nitebird

https://alzconnected.org/discussion/comment/209032#Comment_209032

I understand completely. Thankyou!

nitebird

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.

Iris L.

Thanks for posting the article about sleep positions, nitebird. It's food for thought. I sleep in different positions and I have not noticed a difference in dreams. But I will pay more attention.

Iris

David1946

https://alzconnected.org/discussion/comment/209142#Comment_209142

https://alzconnected.org/discussion/comment/209322#Comment_209322

I will try different styles

David1946

https://alzconnected.org/discussion/comment/209008#Comment_209008

Hi nitebird, I have been seeing a Neurologist for some time. He has put me a few meds to help slow down the disease which are helping. He put me on my CPAP machine and he had me tested for low iron so now I am waiting to see a specialist to see if I need an infusion. I will let you know how it goes.

Jack16

https://alzconnected.org/discussion/comment/202100#Comment_202100

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.

David1946

https://alzconnected.org/discussion/comment/228673#Comment_228673

Tim check out your senior center( I do not know if this what you are looking for) but my senior center has a class once a week for Parkinson's I take it for Dementia but it also helps me with balance. I hope this info helps you.

Watson1

https://alzconnected.org/discussion/68243/new-scared-and-confused

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.