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

 

34 thoughts on “And So IT Begins . . .

  1. It’s not really your voice that makes you but your words. And, for me, your words have always had meaning and power. So, this is your sign to start writing a novel. Put your life in words on paper. xoxox P.S. To you & Shannon: Forever & a day! much love.

    Liked by 1 person

  2. Tears of joy Brian for your story. Love needs no words and music is the key to the soul. Happy anniversary to you and your wife. I am honored to know you and am humbled by your courage and faith. PS I love the book idea.

    Liked by 1 person

  3. I hate when we have to deal with change! You are so awesome because you always figure out another way! I gave a presentation today and the questions always make me remember something you have said. Happy Anniversary! I am hoping you picked a place with music so you can dance the night away!

    Liked by 1 person

  4. Brian, my friend stay strong and stay the course. Through adversity, we find strength and through adversity we learn so much that we are able to use in life. You are a huge inspiration to me and many others. You have an Army that respects and loves you. I will be starting a prayer chain for you, your beautiful bride and children. I’m here for you.

    Liked by 1 person

  5. Brian, you are such an inspirational advocate and friend. Please let us know if you need anything at all. We all care about you and are sending positive thoughts and prayers!

    Liked by 1 person

  6. I’m new to your blog and just wanted to tell you its inspiring! I recently learned I have a dear life long friend struggling with Alzheimer’s. She just turned 59 this month. Thank you for such brilliant insight into what her world must be. – Keep writing and keep fighting!

    Liked by 1 person

  7. Hi there, I woke up to draft out my post about how my grandmothers condition has affected me. I remember when she could no longer speak. I pray you are well and I pray for miracles. When you say you’ve lost your speech is it the ability to articulate and vocalize the words? And if you don’t mind me asking how old are you?

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  8. Hi, I just found you blog. I also blog about my journey dementia. I sorry this happened you. Last December, I developed Aphasia….which, like you, made me real struggle talk. However, it also affect my writing (this is not the case for everyone). At first it made me drop a word here there, then it made me bare be able talk at all. I have worked hard in that year stay talking stay writing. I find stress real make it worse. I am writing because I have found some things that may help you stay communicating, since you express it very important you (as it is for me). I actually found these things through our journey autism with granddaughter. 1 is the PECS system….it stand for Picture Exchange Communication System. The other is a customizable App call Tippy Talk. It was created by a dad help his nonverbal daughter communicate with him. I have video and links here: https://stilllifewithdementia.wordpress.com/2017/02/10/help-for-helping-us-stay-communicating/

    Again, sorry you loss ability talk….and thank you for blogging, sharing.

    Liked by 1 person

  9. No pity here…but deep admiration for your forthright courage in sharing your personal journey. Thank you for giving me yet another glimpse through a window of one who knows more than they care to know about this wicked disease. I have only begun blogging about my journey as a caregiver with my mother.

    Like

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