Early Onset Dementia - Part Deux - After the LOOK

OK, so the shock of what you just did or didn't understand wears off. You realize that "Yep, I'm off my rocker again!"

This frustrates me so, then I wind up laughing at it, and often times my wife just rolls her eyes and chuckles. I love my wife so much. She is being my rock through this, keeping me full of hope that a cure will still be found yet. That woman is firmly built on her relationship with God and it shows in all she does.

As I start on this journey I wonder what is the next part that we will face? How soon? What do I need to be doing to prepare myself and my family? As we get older many of us start to think about what we need to do for "end of life" preparations/documentations. At 57 I thought I still had quite a few years before I need to worry about this. NOW, Well ..... the dawning of that time is upon me. Why now you ask? Don't you feel that you still have plenty of life ahead of you? Well YES! Are you saying you're feeling yourself take a turn downhill? Well NO! But for a document to be taken as valid, it has to be done while a person can show they are in their right mind. NOT THEIR LEFT!?! (just kidding).

I downloaded a free copy of some forms that you can fill out yourself, just as what to do medically, i.e. DNR and such. Now that was a wake up call! What do i want to do? How much of a lingering burden do I want to be? Truthfully, I'm not sure yet. So it sits on the computer until I can make a more informed decision.

Next thing I have to deal with .... at what point do I turn over the duties that I now do myself, such as bill paying, social media for our stores FB page, emails, federal/state forms to be filed and so forth. I won't lie. I can be a handful. Just ask my wife. That along with her having to keep the shop going can be quite a task.

AND, I still work. I am an Analyst in the Finance Department for a Fortune 500 company, the largest consumer power tools provider in the world. Yes, I'm a bit of a brainiac, which i'm not so sure is a plus or not. Sometimes this makes it harder on me. I worry that I'm "too aware" of what all is happening to me and around me. I love what I do. Having to problem solve what others have done weeks or months ago on both our side and theirs, then put it together for management to use and/or make a decision based on is exciting, thrilling sometimes.

Finally, I do spend quite a bit of my time watching TV, having fun analyzing what is going on that couldn't be happening in real life. I used to love to go to horror movies to do the same. This is one way that I find my kicks. I also like to do Sudoku, but I am finding that I'm unable to complete many of the harder puzzles found at the back of the magazine.

In the meantime, I will keep on trying to do many of the things I still enjoy. I love music and concerts, antique shopping, and bowling, though with the Hyrdrocephalus that has been cut way back.

So for those of you out there reading this that think you or someone you love may be in the beginning of "old timers" go get a physician and/or neurologist to test you. Start now. There are medicines that are a BIG help. I am on Namenda and I can tell that it is doing a great job to help me. There are other therapies, clinics and drugs out there to make this journey a WHOLE LOT easier on you and yours too. You just have to take that first step.
And Remember, #AlzSux #EndAlz

This is what Early Onset Dementia looks like some days

Right now I can't decide if Early Onset Dementia is a good thing or a bad thing.

There are days when this disease SUCKS really bad. Days when I can't remember my dogs name while showing pics to coworkers. Days when I fly off the handle on things that I normally wouldn't even respond to. Days when all I want to do is go back to bed and not face the world because things don't seem so clear to me that morning.

Then there are days when I get to tell and/or show others what people with Early Onset Dementia can do. I have always loved speaking and writing. I had started my second book to publish online some time ago and I may go back and work on it again while I still have the thought processes to do it. Getting to tell others verbally and through social media does make me smile too.

Most people who have Dementia/Alzheimers do not tell anyone and the family tries to dismiss it by saying, "oh, it's just Old Timers, you know they are getting on up in age now." And for many people this may simply be the case. BUT for that person who has the disease, they KNEW it was coming and didn't want to tell.

"Well, I don't want to be a burden on anyone or upset anyone. Besides, what will my friends think if they know I'm having problems?'

TRUST ME, Your family/friends already know. They just don't want to approach you about it for fear of upsetting you or destroying a friendship. Plus, THEY DON"T KNOW WHAT TO DO EITHER!

We have advertising that shows nursing and assisted living facilities so that we can put people safely tucked away somewhere without having to try to deal with it yourself. I know this is harsh, but reality is not what people portray on TV. It is what is happening in your own home, work, community and church.

So rather than have people continue to put everyone with Alzheimers/Dementia in 1 bucket with only 1 option, I want to work my hardest to get people to understand that there ARE more options.
In order to keep this to a shorter size, I'm going to cut out here. Tomorrow I'll post a more in depth one to share more about my overall journey.

Thanks as always for reading this and please share with your friends.

Paneling

I bet the Headline made you think of that ugly 1960's-70's stuff.

WRONG!

I've never been on a panel before, or at least that I can remember. :-)

The picture above is from September 6th of this year. I was invited to a screening of Too Soon To Forget (website - http://toosoontoforget.net/) in Charlotte due to me having Early Onset Dementia, Other panelists were either in the medical field or had loved ones who had fought the battle and eventually succumbed to this disease. (1 day there will be a cure, but until then, the fight is real!)

I never had the chance to see this film before the screening. It is currently showing in PBS markets around the country, and is also available on DVD for anyone who would like to have a private copy. (more info on this can be found on the website). Mary Swenson of Charlotte NC/Chicago IL was the one who invited me. She and her husband Tom, who fought just as hard as anyone else, were featured along with others who at the time were battling this disease.

Alzheimers/Dementia  affects far more people than you realize. Most people realize that they may be starting to have some affects of the disease, but they do not want to go to the doctor, out of fear that they may have to see an end to their life as they know it. They don't want to face the "realities" of the disease. WELL, the reality is that LIFE DOESN'T END BECAUSE OF THIS! If you don't believe me, tune into a screening of this film when it becomes available in your area, or purchase a DVD and watch for yourselves. The things that Mary and Tom accomplished alone will astonish you.

The one thing that impressed me both is the people who took time to come out and listen, then asked a LOT of questions, both during the session and afterwards. People do care, people do want to help, people do want to make a difference in other people's lives. Society isn't all bad as the media wants everyone to believe.

In my past I have done paneling (the wooden kind), and now I have been paneled myself. It is a humbling experience to sit there and watch/listen to other people stories and realize it is up to me to get myself through this. Yes, the drugs seem to be helping, but they are not what will keep me going. God, Friends and Exercise will be what keeps me going through this.

Until then, if anyone ever wants me to be "paneled" again, just leave me a comment and I'll get back to you. And remember #AlzSucks #EndAlz

Blow on it, it will heat up I'm sure!

Shaved Ice

Need I say more?!?!

We used to call them Sno-Cones when I was growing up. Now kids call it Shaved Ice. Doesn't matter what you call it, I call it delicious. Especially the flavor Tigers Blood. (hey, I live in Clemson territory, so what do you expect?!?)

One day we were at the local amphitheater enjoying a band playing and it was hot. HOW HOT WAS IT? Well, I think it melted the ice right off the penguins running around in the fountain beneath us. (We had sat up on a ledge to watch the sights as well as listen to the music!)
So I go to the vendor cart selling these and order 1 for each of us. I take them back to where the rest of the group is sitting, pass out the goodies, and sit down to enjoy mine. I start to eat it, but then something seems wrong, strangely different.
I realize I am blowing on each spoonful of ice before I place it in my mouth. I looked around 🙄 to see if anyone else was noticing what I was doing. NOPE, they were too engrossed in the show below. (wow, i made a rhyme). So I went back to enjoying the music and what do you know. Dang it, I was doing it again. Blowing on my spoon of shaved ice before putting it in my mouth. I long as I only concentrated on that task I was fine. But the minute I started watching the crowd and listening to the music I was back to blowing the clear off the crystals. 👨
I don't know if anyone ever noticed but I think i got a kick out of it. Right now it is kinda funny that I can do really stupid stuff and still laugh about it. I just hope it is a long time before the laughter stops.
Until then, keep pressing on, those of you who are battling this disease also. #EndAlz

Let Me Explain The Title

Greetings and Welcome to my Blog.
I'm going to try to do something different. Most people think that anyone who has Dementia/Alzheimer's is incapable of conversation and normal thoughts.
WELL,
I'm not sure about the normal thought process, as I don't think I've been normal for years. 💀 On June 26th I received my 2 diagnoses as a result of tests by my Neurologist. Hearing those words, Dementia and Hydrocephalus sent me and my wife into a tailspin. Both are diseases that you cannot defeat (YET! - They are working on a cure as we speak).
That was a wake-up call for me and my wife. I've spent a lot of years in the "One Day I Mean to" and what ever the task was that I had on my mind. That leads me to the title. While I deal with the d'meant'ia and the other health issues, I am going to work on a bucket list of what I would like to accomplish while I still know what I am trying to accomplish.
Plus I will share a lot of my thoughts along the way of the craziness of this disease and the aftermath that it causes.
If you are battling Early Onset Dementia and would like to talk about your day to day activities, please feel free to comment on here, I would love to read about them.
May God bless us all as we walk down this path together.