I'm newly diagnosed and scared

Calibird · May 25

Hello, I am not new to this site as I was a caregiver to my mom who had dementia. She died in June of 2017, and now I have just been diagnosed with early onset. I'm only 51 and I'm scared because I've seen first-hand what dementia does to a person and to their family and I am just terrified. It's hard to talk to my family about it because they don't know how I feel and I don't know how to talk to them about it. My neurologist told me it was very early and she started me on a patch called Rivastigmine. I just thought I'd say hi and see if anyone is going through the same thing.

Iris L. · May 25

Welcome to this online support group, Calibird. I'm sorry you have been given that diagnosis. I hope that you had a thorough evaluation to rule out medical causes of memory loss. I have been using Exelon patch for many years. Exelon is the brand name for rivastigmine. I thought I had early onset but further testing confirmed that I do not have Alzheimer's members

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It is very difficult to talk to people that you know because they do not have the same experience or perspective. You might see if your local chapter of the Alzheimer's Association has an Early Stage Coordinator who can refer you to a Memory Club and other resources. Call the Helpline at 1-800-272-3900. Of course, you can continue to post here and share with the other members.

Iris

Janutt · May 30

Hi Calibird,

I’m sorry to hear about your diagnosis. I had lumbar puncture tests that determined my diagnosis. I was happy but also upset to say the least. I too have had many family members who had Alzheimer’s. I’m the next generation. Wish you all the best and reach out as much as you can. I started to use the zoom for early onset from the Alzheimer’s Association. I hope you can join them too

Calibird · June 6

I had a PET scan, MRI's, and a test my neurologist did in the office. She said it was very early and believes I might have Fronto Temporal Lobe dementia. I never really knew what kind of dementia my mom had because she was in the late stages before I realized, and she refused to get even an MRI. The patch does seem to help me. I think I will try and find out more about the local alzheimers association. I live in Las Vegas so I'm pretty sure they probably have one. I also have a therapist. Other than that I really don't know what to do about having this diagnosis. Thank you for responding. It helps to know I'm not the only one who is going through this.

Calibird · June 7

Also, something that is very irritating to me is watching tv shows or movies that I am positive I don't remember. However, my daughter who lives with me and hubby, helps me tremendously but says I have already seen it and apparently keep watching the same thing over and over when I'm by myself, but I honestly don't remember watching it. this is especially difficult when watching a series with my family and they tell me we've already watched certain episodes and they want to move on but I don't REMEMBER previous episodes. I don't know what I can do. It bothers me to no end and I don't know how to deal with this. 😪

Calibird · June 7

https://alzconnected.org/discussion/comment/211053#Comment_211053

Thank you for replying. I will ask my Doctor about lumbar puncture tests just to make sure I have the right diagnosis.

Calibird · June 7

Thank you for replying. I will look into more testing for me just to make sure I have the right diagnosis. The patch does seem to help and if I forget to change my patch I do notice an increase in confusion and memory. Its kind of like a fog over my mind.

Iris L. · June 7

Hi Calibird. I don't think it's a big deal if you watch a show twice. You can enjoy it again. When I was into watching The Young and The Restless, years ago, I watched each episode three times! I watched that show faithfully for twenty years. Then I stopped cold turkey and haven't watched it since two years ago. I also like to reread books.

Iris

eaglemom · June 7

We rewatch movies / shows all the time. You can't help that you can't remember if you've seen it or not. Do you think your family is trying to adjust to your diagnosis also? They need to understand, as best anyone can, what you are going through. They need to be aware of ALZ and what it is - not what they think it is. Hopefully they will come around to support you, which is exactly what you need.

eagle

Calibird · June 11

https://alzconnected.org/discussion/comment/212026#Comment_212026

My daughter understands as best she can. She is kind and sweet about it. My husband though is in denial even though he was with me when My dr. told us my diagnosis. He just doesn't address it at all. :(

eaglemom · June 12

Calibird don't you think he is just processing the diagnosis? He doesn't want anything to change. In his mind, I'd guess, change is scary, and he doesn't want to be scared. That is how many men handle things.

It might be good if you could find a support group you both could attend. Where he could be with others and possibly voice his concerns. You might try your local ALZ Chapter and see if they offer any support groups.

eagle

quinntaylor6 · July 20

https://alzconnected.org/discussion/69331/im-newly-diagnosed-and-scared

Me too. I am scared and not 100% sure I truly have dementia. I go in for further testing. There's drugs RDA approved to stop it now if caught early enough

quinntaylor6 · July 20

I meant FDA approved...

eaglemom · July 20

Quinntaylor6 welcome. If you will start a new thread then others can respond to your questions individually.

I'm newly diagnosed and scared

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