I don't think I'm nuts

[Wibble]

Hello all.

Back in 2013 I used to be an electrician and started noticed that I was sometimes getting confused and muddled. I self-referred to a memory clinic. They said I had a MCD with an ACE3 score of 89.

I stopped electricianing as I did not think it was safe to continue.

Things have been slowly getting worse and my GP suggested another memory clinic assessment. (After I left his office, he came out to call the next patient and found me lost in the surgery corridor, and there is only one of them! - How can I remember I got lost but then get lost to start with?).

They gave me an ACE 3 score of 72, a drop of 17 points in eleven years or 1.55 points/year. I have had a head CT and someone is due to visit home & chat to me about this in the next few weeks.

I should mention I have had unstable type 1 diabetes since I was eleven (I am 60 now). I also have loads of other medical conditions (all related to being diabetic). I also have Asperger’s Syndrome.

I realise I am not being politically correct here, but I don’t feel nuts! I know I do daft things (pick up hot things because I forgot they were just in the oven, go to cross the road without looking and get yelled at, open car doors whilst the car is moving). I guess most of you will know the type of thing.

I want to get on with my life without anyone bothering me. Walk the dog each day with my wife, watch TV (which is getting difficult because I can’t follow story lines), do my hobbies etc.

I guess it’s the Aspie in me, but I want (need!) to know what, why and how long.

Will my ACE3 continue to drop at 1.55 points/year in a linear way? Will it get faster or slower? I think I have diabetic encephalitis not dementia. Can this be confirmed?

I have just read this back and realise I have rambled a lot, but that is how I think now. Should I edit it or apologise? No.

I’m not sure of my question now, but is what you have just read typical of someone in my position?

 

[Kevinl]

Hello and welcome from me. My dad was an electrician but I couldn't be as back in the day the live wire was red, the earth wire green, not easy if you're colourblind.
I know it's different now the stripy one is the earth and brown is a much darker colour than blue so is the neutral wire, touch the brown and you're in the **** as they say.
Never apologise on here (unless you have done something wrong) all here to read.
Your road crossing and burns are a concern though others will be along with some better advise, until then hello and welcome from us all not just me. K

 

[sdmhred]

Hello @Wibble

Thanks for posting and joining our forum. I’m sorry you’re facing this situation.

To be completely honest there is no way we can predict what is going to happen as each person is different, as are the timescales. I appreciate thats so uncertain especially as you’re an Aspie.

In terms of getting on with your life, you are not likely to be bothered by services much. You will likely receive a diagnosis or not, perhaps be given some information about local resources and left to it.

Many people manage like this for many years.

They tend to be bothered in the later stages of the disease where issues like continence or wandering can become a problem. The main carer gets tired and needs help from carers coming in.

What I would suggest is that you organise Powers of Attorney with your wife or other trusted person. These will give you opportunity to exercise some control as you can make preferences for how things are done if you’re unable to make those decisions in the future.

If you would like specific advice on managing as an Aspie perhaps start a post titled Dementia and Asperger’s to see if others have experience to share.

 

[Grannie G]

No one here will think you’re nuts @Wibble If you’ve had concerns about yourself since 2013 you’re doing really well.

Just keep doing what you’re doing. Try not to think about tomorrow. Asperger’s or not, tomorrow is unpredictable for everyone in the world. None of us know what it will bring.

Worrying about tomorrow wastes today

Keep posting. No need to edit. Let your thoughts flow. It`s good therapy to be able to share and off load.

Welcome to our forum. 🙋‍♀️