52 and Recently Diagnosed

Grandpa The Nerd · January 5

Hello everyone. I'm 52 and back in October was diagnosed with early to mild Alzheimer's Dementia. That was and still is very hard on me and the family. I'm still waiting to hear back from the specialist up in Madison. Can't see the Neuropsychologist until July. It is so frustrating in getting to see specialists. Small town woes I guess.

The only thing that has been done for me so far is they gave me Memotine. Hope I spelled it right. Still getting headaches from the meds but they are starting to be less frequent and it's starting to work. I'm just so lost on the big picture now. I just feel so hopeless most of the time. Well thank you for reading. Writing that did help vent a little bit.

Iris L. · January 5

Welcome Grandpa. This is a place for support snd information. I am surprised that you have not yet had a thorough neurocognitive evaluation bt the neuropsychologist.

On what basis was your diagnosis of Alzheimer's Disease made? Were all medical dementia mimics ruled out?

Is there a history of Alzheimer's Disease in your family?

Did you have to stop working?

You will need to make plans for yourself.

Please read the alz.org website to help you with planning. Do you have specific questions?

Iris

Mimi50 · January 5

I am sorry about your diagnosis of EOA. You must be scared my husband was diagnosed year ago. With vascular dementia. He was scared too. So was our son and me too. The last year there have been times where he gets confused. So I try and reassure him He might forget what he saying so I try to help him remember. Those times don't change the days where we laugh and hold hands. The nice Christmas we had with our son and granddaughter. We got to celebrate our 25th anniversary together. So hopefully you and your family will have wonderful times together too. Take things one day at time. Focus on the present and all the things you can do and few,things that you would like to do. This site has nice helpful people on it.

Grandpa The Nerd · January 6

https://alzconnected.org/discussion/comment/193669#Comment_193669

I had a PET scan with a tracer. 3 of my 4 grandparents died from Alzheimer's and two of them also had Parkinson's. I got a packet from the Alzheimer's association which includes this support group site.

I was forgetting my kids names among a lot of other things. When I told the doctors my family history they sent me to get the PET scan.

The packet I got has tons of info to help us plan things.

Iris L. · January 6

Grandpa, were your grandparents diagnosed with early onset AD? If so, was there a genetic component? Have you had genetic testing?

Iris

Amy Joy · January 9

Welcome grandpa nerd!

I hope y’all are doing well!

Sorry to hear about your diagnosis of Alzheimer’s!

Did it take all time to get diagnosed?

Are you otherwise basically healthy?

Some people with Alzheimer’s/dementia have other health problems.

Janutt · January 10

Hello Grandpa the nerd,

im sorry to hear about your diagnosis. It is had to imagine that this could happen to you. All sorts of feelings rushing through your head I would imagine so. I too have a family history of Parkinson’s disease and of course Alzheimer’s. I did have genetic testing done for Parkinson’s disease and I have the gene for this but they said there isn’t enough research. When I got diagnosed it took a while but it wasn’t easy to be diagnosed. I had one doctor deny my diagnosis and said that I don’t need medication since there is no cure. New doctor many months later and he read all my results and confirmed that I indeed have EOA.

Im glad that Alzheimer’s Association was able to send out some information for you. It will be 3 years in October since I was diagnosed. Best wishes to you. Many nice people here on this discussion board.

Amy Joy · January 11

Hi everyone!

I’m sorry to hear about your diagnosis!

How are things getting better?

I was in my late forties when others started noticing I was changing.

I was diagnosed with early onset dementia from doctor.

I now live with family and from I won’t be living alone anymore.

Indigal · January 16

Sorry about your diagnosis. I know how it is waiting months for specialist appointments. It happens in big cities too not just small towns. I pass the time by focusing on small projects such as crocheting cat blankets for the animal shelter and volunteering to sort books for a used book sale. I hope you can find some things that bring you joy. I also hope you find this forum helpful.

jeaamom4 · January 17

Hi everyone, my name is Barb and I live in the cold state of Michigan. I am 61 turning 62 in August. It is good to read your posts and be able to talk to nonjudgmental friends, who really understand.

I was diagnosed with an autoimmune disease called Sjögren’s syndrome 2 years ago. Every time I would post on a Sjogren group about my concerns regarding my cognitive difficulties they would just tell me it was brain fog and not to worry. But I am noticing a lot more difficulty doing my full time job, and have a lot of the early symptoms mentioned.

I had neuropsych testing done in 2022 and received a diagnosis of MCI. I am going to get a follow up neuropsych assessment done in June 2024. I am retiring from my school job in June because I know I can’t handle.

I feel like I am aware of every blunder I make. And when people point out a fact they had told me but I don’t remember it, I feel so bad. Is it common to have awareness early on?

Iris L. · January 18

Jeaamom4, I have Sjogren's syndrome, along with systemic lupus and spondylitis. I also have a diagnosis of cognitive impairment not otherwise specified, meaning cognitive impairment that is due to diseases other than Alzheimer's Disease and the other true dementias.

When I attended the lupus support groups, everyone had "brain fog" and memory loss. But my loss was greater because I had so much trouble functioning. This is due to impaired executive functions. I have learned quite a lot about how to accommodate my illnesses.

You are close to the time for retirement. I don't know if you are eligible for a disability pension. Have you looked into this?

Yes, you can be aware of your lapses. There are accommodations that you might be able to take at your workplace. Go to www.askjan.org and search for accommodations for MCI.

Iris

jeaamom4 · January 19

Iris, it is so nice to meet you. I really don't know anyone with Sjogren's, and most people have never heard of it. I am diagnosed with Primary Sjogren's at this time. However, I am having a lot of problems with muscle soreness and fatigue. I wonder if that is another autoimmune diagnosis like inclusion body myositis. I just found out I have Covid , which explains the flare-up I have been having this week. I really thought I just had the flu that was going around.

I will look up askjan.org, thanks so much for the resource.

I am retiring from the school job this June 30th and will collect a state pension. I was hoping to pick up something 2x week that is less demanding than my current full-time job.

thank you all for your kind replies

Iris L. · January 19

Jeaamon, take good care of yourself with the Covid, because your immune system is compromised. I did okay with Covid, but I coughed for three months afterward. Take extra precautions in the future to avoid respiratory viruses and bacteria.

Sjogren's syndrome is a different disease from inclusion body myositis, but it can feel like it. I used to have severe muscle pains and weak muscles, all over my body. But much of that was probably from lupus.

Have you been prescribed hydroxychloroquine? It helped me. I was on it for about ten years or so. If you think you can hold out until June, think about what reasonable accommodations can help you.

Iris

52 and Recently Diagnosed

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