Dementia: Just diagnosed and scared

Posted by cathy514 @cathy514, Apr 19, 2019

just diagnosed and scared

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@cathy514

my best friend of 40 years doesn't understand why I don't drive more then 5 miles and thinks i am just looking for rides to save gas money yet I pay anyone who drives me. I have trouble writing my name was so embarrasedat the bank boca and my hand woulnt finish I had to tell teller I couldn't do it she said just scribble but bring someone with yo next time so embarassed

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Hi, @cathy514 – I'm sorry for the embarrassment you endured at the bank with writing and also that your long-time best friend doesn't seem to understand why you don't drive more than 5 miles. Glad you connected with @jakedduck1 and @barbbie. I'm guessing that @jenniferhunter @hopeful33250 @1977lizzy @adah also will have some input and encouragement for you.

Do you have a friend or relative who seems to get what you are going through?

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@cathy514

thank you so much, I am embarrassed for my friends neighbors to see me struggle as I also have tremors I am so alone

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@cathy514 I’m so sorry for what you’re going thru. I, too, often feel the same way. I used to be so active, doing everything, riding my bike, hiking, etc. Now, I can only do things in short spurts because I get so tired. And when I’m walking in a store, I’m sure that everyone thinks I’m drunk because I can’t walk straight. Oh well.
Have you explained to your neighbors what’s going on? They might feel better knowing because then they can help. And, please, don’t be embarrassed! We all do the best we can. ( sounds like I’m giving myself a pep talk! I need it!). Becky

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@cathy514

my best friend of 40 years doesn't understand why I don't drive more then 5 miles and thinks i am just looking for rides to save gas money yet I pay anyone who drives me. I have trouble writing my name was so embarrasedat the bank boca and my hand woulnt finish I had to tell teller I couldn't do it she said just scribble but bring someone with yo next time so embarassed

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@cathy514 Hi Cathy. Have you tried using both hands to control writing? Sometimes 2 hands are better than one! I did that myself a couple years ago. I am an artist, and I couldn't hold my arms up and control my brush strokes, so I used 2 hands together on a painting. I had this problem because of spinal cord compression, and I did have surgery and rehab and regain control of my arms and I worked for that. You don't have to try to do everything like everyone else, just do things the way it works best for you. Don't keep that a secret. Your friends will understand if you explain how it helps you and show them how happy you are when you can do it. Always celebrate small victories. The people who care about you will like you just the way you are.

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@adah

How long did it take before you were diagnosed? I can’t get anyone to diagnose my son, who I believe has dementia. As soon as we can get seen is September

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over a year went to u of m geriatric center

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@jakedduck1

@cathy514
Hi Cathy,
Embarrassed? Why? Not everyone fits into the idealistic definition of normal or perfection. Even if your friends are making comments about your tremors, so what. Why should you care. YOU have nothing to be embarrassed or ashamed about, NOTHING!! I’ve had Epilepsy for over a half century and I could tell you things that happened to me that would curl your hair, make you blush and cry but I’ll spare you and those incidents are insignificant compared to others I’ve known and read about. I wrote on Epilepsy forums for many years and it’s amazing how many people are unable to come to terms with an illness. For a very short time I too was one of those people, my condition happened so suddenly and severely I couldn’t cope but I soon realized “It is what it is.” But I wanted to live my life and be healthy and happy but the healthy part took nearly 50 years. I have a condition that I have no control over and even though I heard many people make cruel comments, hopefully it was ignorance but I’m afraid some of it was stupidity but regardless there was no reason to be embarrassed or ashamed.
Always accept and love yourself as you are. Never be embarrassed or ashamed.
Health and happiness,
Jake

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thank you Jake, I am trying to adjust to my new life, I miss working so much. I miss socialization. I am single and my parents have passed I am trying to find a support group near me in Belleville Michigan but so far no luck all are too far away

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@jenniferhunter

@cathy514 Hi Cathy. Have you tried using both hands to control writing? Sometimes 2 hands are better than one! I did that myself a couple years ago. I am an artist, and I couldn't hold my arms up and control my brush strokes, so I used 2 hands together on a painting. I had this problem because of spinal cord compression, and I did have surgery and rehab and regain control of my arms and I worked for that. You don't have to try to do everything like everyone else, just do things the way it works best for you. Don't keep that a secret. Your friends will understand if you explain how it helps you and show them how happy you are when you can do it. Always celebrate small victories. The people who care about you will like you just the way you are.

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thank you Jennifer. I don't have a lot of friends as I worked every day a 60 mile commute and went home after work. I never had a lot of free time so now I'm trying to figure out what to do to get some socialization. I do walk in my neighborhood

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@barbbie

There is a lot of support available. Our local Alzheimer's Association has EASE classes which my husband and I took four years ago. From that class they started a support group for patients and caregivers. We first meet together and then we split up. We have made some very fine friends. My husband doesn't like to go out but he does like to go to the support group where he feels comfortable being with others with similar problems. They have an opportunity to discuss how they are managing plus the leader is able to give helpful info. For caregivers we get to learn what help is available and to help each other on this journey. I am sure the diagnosis must be devastating at first. I pray you will be able to find help from your regional Alzheimer's Association.

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I cannot find a dementia group in my area…Belleville Michigan

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@adah

Thanks for info

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I am sorry. it took over a year cause my pcp and 2 neurologist at St joes said it was anxiety it wasn't till I went to u of m for neck surgery that the neurosurgeon saw my tremors and said I had a movement disorder and referred me to the geriatric center and they did a MRI no contrast as I belive I also have gadlinium poising a EEG and let's a

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let scan showed pca posterial cortical atrophy

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@lisalucier

Hello, @cathy514 – I know you were feeling sad and scared after your diagnosis of dementia last month. Wondering how you are feeling and how things are going lately?

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I am sad and I cry a lot trying to do things I used to do and can't do now, I worked since I was 15 I am so lost with nothing to do I miss my life before pca

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@cathy514

I am sad and I cry a lot trying to do things I used to do and can't do now, I worked since I was 15 I am so lost with nothing to do I miss my life before pca

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Hello Cathy514!!!
Trying To Say Hello So That If A Community There Is Some Support!!!

I Wish You Look And Find All The Attention That You Need!!!
Best To You And Healthy Recovery!!!

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