Since being diagnosed, I have wondered, ” how can I use my voice to help change the stigma associated with EOAD? How can I make the world see it’s not what they know?”

It’s a question I ask myself over and over. EVERY.SINGLE.DAY.

My diagnosis has never only been about me, ever. It’s about my family. It is, to me,  about perspective and how I apply that perspective.

As I had said previously, I move through this new life with a peaceful heart.  Now having said that, it’s not that I don’t  hate having this, I absolutely do. It’s total bullshit and I just don’t want it.

In the big picture, I can only prolong the progression ( although I secretly hope to stop this bastard in its tracks, honestly.) Perspective.

I know there is the distinct possibility I will live for a time not knowing I am existing. That is perspective. (In later blog entries I will share my personal views on that subject).  But right now, here, in this moment, I am present.

My family means everything to me. My daughter’s warm smile,  my son in laws ever present thinking on where his role in the future care of this ENTIRE family, my grandchildren’s hugs and giggles,  my mother’s unwavering encouragement, and from all of them, so much love and support.  I am truly grateful and blessed. Perspective.

Today my daughter let me know she had posted links to this blog in a group she belongs to, it’s for caregivers.

A response from an obvious loving husband was posted to her.  He said stated in his response that his wife has EOAD and she doesn’t talk about how she feels. That literally broke my heart.

I will never know and would never ask why, but my mind was whiling with all the possible reasons why she may not talk about how she feels. I was completely overwhelmed, still am.

Disease in any form is hard to fathom. Breakthroughs have offered so much hope for rebuilding lives;  Stigmas have shattered lives.

Way back when; or if you choose, back in the day, the simple everyday subjects we chat about today ( menopause, menstrual cycles, erectile dysfunction, colon cancer, gay marriage, breast cancer, thousands and thousands of subjects) were, as you know, kept quiet.  ” This is not something we talk about”.  “Keep it in the family”.

Dementia, and it’s many forms that make the dementia umbrella, in my opinion, still live within “back in the day”.

If the statistics state over and over, study after study, year after year that the proportions of this disease are growing and the statics are now at ONE in THREE …..THat my friends is epidemic.

I do understand that many people just simply don’t want to talk, I also understand that many do not know how to express what they feel and are what they going through. I don’t judge. I have always been, outspoken?  Hahah ha! Animated is more like it!  Not always to my benefit, but outspoken and (sometimes overly) animated. Cartoon like if you will .  For example, I tell a story from beginning to end with my whole body, arms ‘n all, sad or happy story, I’m animated.

I remain wrapped in a loving life, both of my own making and of my family’s making.  I have always been “chatty” ( thus this blog) but not always able throughout my life to express how I feel, shutting down at times.

I shut down for 4 years. All those years trying to figure out what was wrong. My conversations had nothing but surface answers, unanimated reactions, seclusion, hyperfocused on trivial things, meaningless stuff. I was no longer real. I was not communicating, not doing all the thing I loved so much, I was an unknown person to those that I love so much and to myself, It was horrible.

Things changed, and now I’m here. My diagnosis brought me back. Strange but true.

I have since joined a few organizations that allow me, through either candid response or ( most excitingly) weekly video chats with people  just like me. THe WARriors I spoke about the other day. These connections have improved the lives of all who attend. ( It’s not an everyday “you must attend” thing, you log on when you can.)

Having the ability to chat with people who share all the same stuff as you do is tremendous!  Just to let it out and know someone truly, truly and really gets it, it helps so much.  Relying on the fact that all your scary secrets can be revealed, and no one will bat an eye. ( Although there could be a burst of laughter cause some times the things I say are way way WAAaaaY out there)  I am immensely grateful for the connection. Perspective.

I hope that entry this reaches that loving husband that responded to my daughter.  ( As well as so many others ) I want him to please let his wife know that all of us, The WARriors ( defined as all of us with this disease) are here if she ever wants to talk, just listen, cry, needs encouragement or perhaps just a smile, there is never any pressure to share a thing. Sending lots of love.

I’ll do my best to attach links below either today or within another bloggy note.

Care partners are essential to living well, but it’s a difficult thing to do for so many reasons.  I will chat about that in another entry for sure.

Changing the current perspective on this disease is vital.  It’s is a global event, this dementia.  The box does not have to be stepped out of, the damn box needs to be broken.  Perspective. 

A simple smile is often all it takes. It can change someone’s perspective on an entire day, it can change lives.

Stay well my friends, Jan