Let’s help STAMP OUT Alzheimer’s!

The Long and Winding Road...

Never doubt that a small group of thoughtful, committed citizens can change the world; indeed, it’s the only thing that ever has.  ~Margaret Mead

I’ve always loved this quote. I believe Margaret Mead’s words. I’ve seen it in action – you and I do have the power to make a REAL difference!

This is one of those moments; your voice is important and impactful! I hope you’ll take a few moments to respond to this call to action!

Learn more about the Help Stamp Out Alzheimer’s effort in this piece from last March.  Alzheimer’s Semipostal Update: March 2016.

There are two actions you can take:

  • Leave a comment on the USPS site urging issuance of an Alzheimer’s fundraising stamp.  Take a few minutes and to leave a comment for the Postmaster General encouraging her to approve an Alzheimer’s fundraising stamp. The Breast Cancer semipostal stamp has raised over $81…

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And So IT Continues . . .

This has been a very long week + 2 days. That’s how long it’s been since I’ve lost the ability to speak.

At first, it was scary. I didn’t know how I was going to get through this. Then, my support system, comprised of Bradley (16), Asheton(22) and Shannon (I’m not telling her age!) stepped in, telling me I’m not alone in this, and that “WE” will get through this. They have kept true to their word.

So far, I haven’t received any encouraging news as to what caused this. One Dr. said it could have been the brain hemorrhage that showed on my MRI.
Another said it was the growth and spreading of plaques and tangles in the frontal lobe of my brain.
Another said it wasn’t any of those things.
So, I’m feeling very good about myself . . . NOT!!!

The one positive thing about all of this is the unbelievable support, encouragement, and love that pours in each and every day. It comes through texts, both facebook messenger and posts, twitter, Instagram, and e-mail. The organizations I volunteer for, Alzheimer’s Association (national and local) Dementia Action Alliance, Covenant Care, and Dementia Alliance International) have all sent messages of encouragement and concern. Covenant Care even went as far as sending (and hand delivering) a card full of encouragement along with a praline and pecan King Cake. (Don’t worry, I took an extra dose of insulin. I wasn’t about to miss out on that deliciousness of sugary confection. And besides, it would’ve been rude of me if they asked if I enjoyed it and I answered with, “I don’t know, I didn’t eat any of it because I’m diabetic!” My Momma taught me NOT to be rude.)

Anyway, back to the no-speaking thing.  

Being I can’t communicate, except for very few words, (Love You, Yes, No, and Pee-Pee. Just to clarify, Pee-Pee is for my dog Dallas . . . not for me!) I use a whiteboard and an app named “TextToSpeech”. You pick the type of voice you want, you type in whatever you want to say, and then hit speak. It’s very easy to use. Since I’m still able to form words in my head, I’m still able to type and write. I don’t know how, but neither does anyone else so far. I’m hoping someone, someday with be able to tell me exactly what’s going on.

On the negative side, I’ve had to cancel a number of my speaking engagements and I literally hate that. Since being diagnosed with Alzheimer’s, I’ve never had to cancel any speaking engagements.  Having to do so makes me feel as if I let a host of people down especially when it comes to Law Enforcement. I always enjoyed teaching them the Crisis Intervention Team Training, where I taught them how to recognize someone with Dementia. It’s important since more and more individuals, especially baby-boomers like me, are being diagnosed with a Dementia-Related Illness. I know it is being left in good hands but  . . .

I’m also getting used to not driving anywhere. It’s not the “not driving” part, it’s being isolated and dependent upon others. I’ve burdened my family enough already. Now I’m asking them to drive me places or to get me things. I hate having to ask but they never say no. They always find a way. I’ve come to the realization that I’ll never drive again and, like everything else, that will have to be OK. There’s always UBER, if I need to get out. I can use my Text to Speech App to tell them where I need to go. We’ll see.

I’m just going to continue to do what I do as best as I can. I will advocate through the written word instead of the spoken.

I will keep a positive attitude, especially when it comes to my family. They don’t deserve to have to take care of me especially with a “piss-poor” or a “poor poor me” attitude. They deserve the best me I can be and that is what I strive to do.

Some days are rougher than others. Yesterday I was in bed the majority of the day for I kept falling. My dizziness was at an all-time high. I figured the best way to deal with that and not worry my family was to eliminate my walking.  So I stayed in bed.

Before I go, I just want to drive home one more thing. 
Yes . . . I have Alzheimer’s!
Yes . . . I can no longer speak!
Yes . . . It’s a pain in the ass to deal with!
However . . . I’m Still Here, Living the Best Life I Can!

There are many others in the world who are just like me.
DON’T COUNT US OUT!

We still have a lot of life within us.
We still have a lot to say and we’ll say it through any form of communication we are able.

We will continue our Advocacy, raising Awareness and Educating about all things Dementia-Related.
Even when we are no longer of this earth, our words will still live on.

“I Have Alzheimer’s BUT, It Doesn’t Have Me
for I Don’t Allow it to Define Who I AM!!!”

Until Next Time,
PEACE

B
 

 

And So IT Begins . . .

Before I start writing this post, I want to make sure everyone understands why I am writing this. I’m NOT having a pity party and this is NOT a call for sympathy. I do not want or need any of that. This is just a factual account of my Alzheimer’s Journey as to what has recently occurred.

SOMEWHERE BETWEEN SATURDAY NIGHT(2/4/17) AND SUNDAY MORNING (2/5/17)
I LOST MY ABILITY TO SPEAK.
BECAUSE OF THE DIZZINESS AND CONFUSION THAT ACCOMPANIES THIS,
MY DRIVING PRIVLIGES HAVE BEEN SUSPENDED.

I can still communicate by text (the word suggestions help me quite a bit), by composing emails and by writing on a whiteboard.
Thank God I can still spell.

During my 56+ years of living on this earth:

  • My voice has gotten me both in and out of trouble.
  • My voice has allowed me to sing in church for masses, weddings, and funerals, as well as for public (non-secular events) for over 45+ years.
  • My voice has been used for the last several years for sharing my Alzheimer’s Journey. My hope is that my message has reached at least 1 person and that 1 person is better off now than they were before.

All my life, I’ve been told I could have a conversation with a tree if no one else was around to converse with. Now, because of my Alzheimer’s Disease, my voice has been silenced . . . for now!

For those of you who know me understand what it meant for me to talk. It’s the one thing I’ve always been told I do very well. I will stay confident in the hopes that I will regain, some, if not all, my speech. Giving in to this disease is not an option for it is an admission of defeat. As long as I am able, I will not allow this disease to defeat me. I owe it to my family to stay as positive as I can . . . which is not always easy.

Thankfully, I can still laugh, which, according to my wife is what first attracted her to me. I knew it wasn’t my looks or my height (she’s taller than me) so I’m glad I had (still have) a loud and hearty laugh. I hope to give her many more moments of laughter for years to come.
As a side note in a very short period of time, I’ve learned to use “creative sign language” as well as write my “sarcastic comments”  on the whiteboard. That brings smiles, laughs, as well as eye rolls!

In a recent MRI, the results showed a minor brain hemorrhage and quite an increase of Amyloid Plaque from 2014 (the year of my initial diagnosis) until now. (if you like you can click on “Amyloid Plaque” to get an idea of what I’m talking about.)

The build up of Plaque on the left side of my brain could be responsible for the misfiring of neurons, thereby not allowing words to flow from my brain to my vocal chords. How it allows me to write words, I have no idea. I’m just thankful I still have a way to communicate.

I remember when Alzheimer’s Disease caused my Mother to lose her ability to speak. She would try to communicate the only way she remembered how and that was through song. She no longer remembered the words but she sure knew the tune and would either hum it or “la-la” it in perfect pitch. It was up to us to try and figure out what she was trying to say. She always tried to converse in one way or another and I owe it to her to do the same.

I can still say, very few, short and simple words but nothing in sentence form. I’ll take what I can get. 

Again, I’m not asking for any sympathy or pity.
What I will ask is that you keep my family and me in your thoughts and prayers. I am not alone on this journey. Shannon, Asheton and Bradley are right here with me. Without their unconditional love and never-ending support, I would not be able to do this.
I can’t forget my little furry care partner, Dallas the Cajun Dog. The amazing intuition he has is uncanny.

In 2 days, I will escort my beautifully, stunning wife to dinner as we celebrate another year of married life. I picked the place and Asheton made the reservation for me. Just because I can’t speak doesn’t mean I have to stop existing. With a mini-whiteboard or small notepad, we will celebrate with delicious food, great conversation as well as our love for each other.

I’ll keep you posted on my progress.

Until next time . . . PEACE!

B