I’d like to share with you some of the tools I use to help me live a better life with Dementia, more specifically, my outlet to feeling a part of a community.

I have often left links and suggestions for joining an organization that I truly believe saved my sanity with all the crazy changes that I go through. The organization is Dementia Alliance International ( DIA) https://www.dementiaallianceinternational.org/ .

DIA was founded by Kate Swaffer. Kate too has been diagnosed, and during her time of research and trying to find more answers than questions, Kate knew there was a need to stay connected, so she founded DIA. Her motto, and the organization motto is , “Nothing about us, without us.”  Kate stands behind all us of on a global platform. Here is a bit more on Kate, its a great read! https://wordpress.com/read/blogs/25395157/posts/15219

I need to let you know, with all honesty, it has is some way saved my life. When I was diagnosed, although I was relieved ( as i have explained previously) it still hit me like a ton of bricks, I mean, really, I was told I was going to die and my brain will systematically tell my body and organs to stop working, my body will fail and I will die. I was 54 years old.

I was told that functions, both small and large will just, or over time, just stop working. I read up on the things that would happen, how it never happened the same in any two people, that the disease is an anomaly, that one person’s journey is never the same as your own, and then finding out that there is really no help, no stopping this thing, no cure.

I reached out to DIA. I had no idea what it was or if DIA could help on any level. But then I met the people who were just like me. People who didn’t question what I was experiencing or sluff it off as being “in my head”.

Through video chats with 5 and sometimes 10 people at a time, I finally, finally, felt real. I felt like I was the velveteen rabbit and in one moment all the fur was loved off of me and I was real.

The people that I met and whom i have since grown so extremely close to, welcomed me without judgement or odd looks. They were the same as me. Everyone had Dementia. And EVERYONE was thriving!

My crazy symptoms were not so crazy after-all, the were real. Many of the extremely warm and loving people that I have met ACTUALLY had some of the same stuff! Honestly, I was in awe!

We chat , we laugh, we laugh about our symptoms, we give support to each other as our life skills change and give encouragement through our own experiences, we bitch and complain, we talk about news on developments in research…………but mostly we just laugh. Its like talking to all your favorite friends all at once, face to face, united.

I invite you, with the most sincerest and openness of my heart, that if you have been diagnosed with Dementia, meaning Alzheimer’s, Early Onset (Young), Vascular, Frontal or any of the other numerous form of this disease, to join.

Its FREE. you just need your email address and download the program to allow you to join our video chats, it takes like 3 seconds. You can do it on your smart phone or computer, I have it on both. Its no different than messenger or any other video app you may use now.

There are video “meetings”, groups, that meet every single day of the week at all different times. There is also a dedicated group for those of us who live alone. People from all over the world, every state province and country. There are a lot of us.

Bring your dog, your cat or your hamster….. let your kids pop in and say Hi! Let your spouse or carepartner join in. Its all up to you.

Listen, you’ve read all my stuff, I tell it like it is, I have never held anything back, I’ve only taken brief breaks when my symptoms have overwhelmed me. THIS, DIA, will bring a light into your life. All those feelings you keep bottled up, can be relieved , I mean it. You are not alone.

https://www.dementiaallianceinternational.org/

If you get confused filling out anything, please contact me or ask for help by a loved one.

With the world in such a state, we can absolutely be filled with even more loneliness & confusion; dire isolation and separation are even more effective to all of us trying living well; I hope we, I, can offer a bridge to happiness, laughter and friendship.

I hope to meet you soon on one of our chats. xo

Next…………

My executive function are so up and down! somedays I can’t even make a decision!

I don’t have trouble ( at least I don’t think I do) choosing the appropriate clothing for the weather, but let me tell you….. deciding what to wear, like which pair of pants, shirt or T-shirt has become an issue. I honestly give up cause its so overwhelming that I find I wear the same thing over and over again cause its safe. I think that”s showing signs of decline.

I see so many little things that are coming together building my pool of decline. It doesn’t upset me, I am kinda in awe of the things that I am loosing, more in awe of my ability to reline my skills in spite of it. Right now its just small things mostly, some other small motor functions are annoying, but I ask for help when I need it.

My speech is another thing. I word search more often. Look more to the sky for words more often, pause a bit more.

I believe I hold the record for “More Pees Per Day” than any other human being. ” and the Grammy goes to……. Jan, winning the incontinence award for her first year in a row…… ” “Bestill my heart! I don’t have anything prepared” says the woman with Dementia, me!!!!! Allow me to just Ramble on! hahahhhahaha

Still ongoing is the fact that I have to go over my blogs time and time again, I just drop out words. They are in my head when I am on course in my head to type things out, but alas, the words don’t reach my finger tips to type them in. If I miss something, I hope you can fill in what was supposed to say, thanks.

Segue…………….

Don’t judge me…….hahhahhahahh

Yesterday, I had to popped over to the small convenience store, I thought I needed cream , I seem to be drinking a lot of coffee ( although it doesn’t keep me up, odd……lol ) as I just finished up what I thought was my last container.

It kept running through my head that , wait… my daughter just bought me 2 containers the other day. But still, I was convinced I was out of it.

I contacted my friend Chrissy, told her I was freaking out cause I had to go to the store. she immediately told me to to be safe.

I got dressed ( I seem to live in my jammies lately) and put on my mask. I made 4 of them. Pretty good job too! Even added a filtering fabric so no moisture would collect. Look at me all inventive and stuff!

Anyway, I got to the store and someone was at the cash, so I turned left in the store and went around the long way through the isle…..and there it was, French Vanilla Frosting.

When I got home, I grabbed a spoon and ate 4 spoonfuls. Oh my life!

Sugar is not good for us who have Dementia. Sugar causes inflammation.Inflammation is part of this disease. What the hell was I thinking????

I wrote quite some time ago that I take Serrapeptase; it is a natural anti-inflammatory. I started taking it 3 years or so before I was diagnosed and it unknowingly had been helping me. My own experiences with Serrapeptase have been absolutely fabulous, many others who have been diagnosed with the same disease have also seen great results, I am not suggesting you use it, but it really helped me.

Moving on…… so as I was saying , sugar causes inflammation. I just ate the equivalent of 1/2 cup of sugar. 19 grams of sugar per tsp = 114 gr. 114g = 1/2 cup. I don’t no how to convert it any further but a 1/2 cup is HUGE!

Seriously laughing at myself. And by the way, I found the cream my daughter got me, in the fridge ( thankfully) but not where I usually put it. Now I have 4 containers. More shady decline. lol.

In the big picture, I don’t really care. However, reductions in brain glucose metabolism have long been associated with Alzheimer’s disease. The brain is the most energy-demanding organ of the body and is critically dependent on a daily supply of a quarter of a pound of glucose. It kinda looks like this:

I threw out the French Vanilla Icing, I just needed a fix. I have sugar, a nominal amount, in my coffees, there is no sugar in my cream or any other part of my diet, but natural occurring sugars in fruits and stuff. I do really well with sugar.

I thought it was just funny and I wanted to share with you some of the crazy things I do.

My pain level has been quite good for a few weeks, I’ve been very happy. It would be great if there were no further incidences, but alas…. its coming back.

Little bits and pieces, but its there. Hoping its a “one off” and perhaps I’m sleeping in weird positions and its causing it. I’ll call my Dr, if it persists, for today, I’ll take a Tylenol with my regular pills. My biggest concern is, well, since I experience symptoms that are “typically” in later stage Dementia now, what the hell can I expect in the next short while? I am a bit scared. Some days more than a bit scared.

I’ll keep you posted.

For now, I’m pretty happy, I’ll be moving soon and it seems all other worries fit in the secondary category. I’ve been planning gardening, watching Youtube for hints cause ma’ brain doesn’t always remember sequences for rotations, I’ve been busy lol.

Hope your day is happy and full of sunshine! This is a great song, hope it makes you feel good. https://music.youtube.com/watch?v=KQetemT1sWc&list=RDAMVMKQetemT1sWc

Stay well my friends xo Jan xo