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

 

Taking Care of Our Own

This post is a bit different from what I normally post. I don’t mean to offend anyone, I’m just passionate about what’s going in our Nation. 

For all the folks that want to open our borders to immigrants from other countries, immigrants who will be supported by us, I have a solution.
Open YOUR home to support these individuals as well as their families, and be responsible for all of their actions. Feed them, clothe them and take of their medical needs. That is what you want for them, right? 
Giving them an opportunity, right? Well, now you can. No, I’m not being negative or prejudice. I’m being real.

With that said . . .

Why not take care of our Veterans who need our care? You remember our Veterans? The ones who fought for our rights and freedoms? Our Veterans who, because of their service to our country make it possible for you to stomp on and burn our Nation’s flag? Our Veterans who have to wait because a non-US citizen “needs” medical treatment because they matter more?

Why not take care of our aging population, the ones who gave us life, the ones that took care of us first?

Why not take care of those of us who have a fatal disease and put those dollars into research, respite care and hospice care?

We need to take care of our own, before we begin to take care of others.

I’m sure you take care of your families first, making sure they have all their needs met. Why can’t we, as a nation, take care of each other first and then, and only then, look to taking care of others?

If you still insist on taking care of others first, let me know. I will gladly take donations to help fight Alzheimer’s Disease, the disease that assisted in taking the lives of many of my loved ones and will ultimately assist in taking my life. There are also other organizations that could also desperately use your help.

If you still insist on taking care of others, open your home to a Veteran, a member of the homeless population, or any other US Citizen that could use some help.

See what needs you can assist with in your own community. There are so many individuals right here in my community that are doing wonderful things for the betterment of the people that live here. They are awesome individuals who do these things, not to call attention to themselves, but because they are fulfilling a need for the individuals that live here.

Now, if you are STILL not satisfied, I’m sure there are many Middle Eastern Countries that will welcome you, as well as your support, with open arms and will even provide you with free housing. It may be cramped, dirty, hot and uncomfortable, but don’t worry, your visit will not last very long.

That is what you want, RIGHT?

Have a Great Day!

You Took My Breath Away

In honor of National Alzheimer’s Awareness and Family Caregivers Month, I wanted to take a moment to Honor Shannon, Asheton and Bradley, for doing what they do, day in and day out, to support me as we all travel along on this Alzheimer’s Journey.

I often think back to our wedding day. It’s still far back enough in my long-term memory that I can recall a lot of the details. I also have photos I can refer to when my memory gets clouded.

The one thing that stood out in my mind on that day, and still stands out today, was when I first saw you. I’ll layout the scene:
It was sunset, a cool afternoon on Pensacola Beach. Your family, some of my family and a few close friend had all gathered at the edge of the sand awaiting your arrival. The minister gave me instructions to not look back until he gave me the go ahead.

He told me when you started walking down the steps towards me. I could hear comments of, “Oh, how beautiful!” and “Oh my God, she looks so radiant.” I’m sure there were others but I don’t remember those. Then he told me to turn around.

(I know have told you this many times before but I want everyone who is reading this to know the effect you had on me.)
I’ve never before had my breath taken away nor has it happened since. It was a one-time event . . . so far. When I turned and caught sight of you, I literally couldn’t breathe. I could only stand and stare at this beautiful woman, dressed in white, walking towards me to become my wife. I had never seen anything or anyone so beautiful.

IMG_2059 editedI’m not sure of the words that were said for I heard nothing but waves and birds. I’m sure the Minister was saying some nice things, but I was still not really breathing. I do remember thinking to myself, “What in the hell did I do to deserve the love of this beautiful woman?”  (Just so you know, I still think that today.)

We both wrote our own vows and although I don’t remember exactly what we said, I know the words were beautiful and from the heart. (I also know those words and the original pieces of paper they were written on are in the hope chest along with our other wedding items for safe keeping.)  

I do know that somewhere, mixed in with our own words, were some of the more traditional “wedding vow” words, particularly, for good times and bad, in sickness and in health. When we finally got around to saying our “I Do’s”, I wasn’t just marrying you. Your children were also accepting me into the family.

Back then, we had no idea how true those traditional wedding vows would ring true.  

Over the course of our marriage, as a family, we have dealt with major and minor surgeries, cuts and bruises, illnesses and just plain everyday stuff. We got through it all with the support of each other.

The reason I bring this up is because each time something happened, we healed, we were able to return to whatever was interrupted.
Now, it’s different. You and I both know that I will never be healed and I won’t be able to return to whatever has been interrupted because there is no returning to what was. I try to not think of that and think more of the positive, to remind myself to “Live in the Moment”, to enjoy those moments and attempt to hold on to as much as I can.

You don’t seem to let too much stop you, or at least you hide it very well. Instead, you have stepped up your game. You have readjusted your life. Asheton and Bradley have readjusted their life, but none of you complain. You allow me to do what I “think” I’m able to do and you allow me to fall, both figuratively and realistically, and the three of you are always there to pick me back up and get me back on my feet.

You’re always there, but never in the spotlight. Unlike me, you’re a behind the scenes type of person, staying in the shadows. Asheton and Bradley are like you in that aspect, allowing me to do what I do but still getting 100% of all of your support. They had a very good role model.

The three of you have allowed yourselves to appear on TV, radio, newspapers, magazine articles and so forth, all on my behalf but also stepping outside of your comfort zone for me. I can never thank you enough for everything all of you do but I try to show my appreciation each and every day.

I know our future is both known and unknown. Most people say the unknown is what scares them. I think it’s because they don’t know “the known.” We do! It makes the unknown a lot easier to navigate. I’m fortunate to have 3 travel companions coming along with me on this journey and I couldn’t ask for anyone better.

I know I thank you for something several times a day and you graciously accept it telling me, “Oh it’s fine. You would do the same for me.” I see Asheton and Bradley wearing their purple Alzheimer’s shirts to school, while shopping, going to movies, etc, and you wear purple more than I do! As I said before, I couldn’t ask for anyone better.

I don’t think I deserve what the three of you do for me, especially for what I put you through on my bad days. I wish I could control that part but unfortunately, I can’t. No amount of reminders on my phone or Post-Its seem to stop the fog from rolling in.  

Along with being National Alzheimer’s Awareness Month, it is also Family Caregiver’s Month. I know you like the term Care Partner better than Caregiver but I didn’t create the term. If I did, you know I would have come up with the correct description.  To me, we are explorers, traveling on a Journey, making new  discoveries each and every day, never knowing what is waiting for us around each bend.

Thank you for taking my hand, letting me lead when I can, you taking the lead when I can’t and just being by my side every step of the way. I love you more than you can ever dream possible.  

B

My Day That Will Live in Infamy

October 28th, 2014 was on a Friday. I know this because I just looked it up on the calendar. It would be a day that changed my life, my family’s life, forever.

Shannon and I were sitting in my Neurologists’ office, awaiting the results from my MRI and Cognitive Testing. Once he was seated, he started explaining things, the way Dr’s do, but I remember stopping him and asking the question . . . “DO I HAVE ALZHEIMER’S DISEASE?”
He paused for a moment, and then answered, “YES.”

I don’t remember much after that. I know he explained the results of the MRI and my Cognitive Testing (which I found out later that I failed miserably) and he explained the results of the genetics and protein studies. The only thing I DO  remember was Shannon, holding my hand while I cried uncontrollably, and telling me, “It’s going to be OK. We’ll get through this together” or something along those lines.

I thought of my Mother, who, at the time, was still alive but in the last stages of her Alzheimer’s battle. (she would pass away 3 months later)
I thought of my Father who passed away in 2010 with Vascular Dementia.
I thought of my Grandfather who passed away in 1985  with Alzheimer’s.
I thought of Shannon’s Grandmother who had passed away only 2 months earlier with Alzheimer’s.

I’ll tell you, being around Alzheimer’s and Dementia Related Illnesses is difficult in and of itself, but it does not compare to Living with the Disease. I equate it to the obnoxious relative that comes for a visit . . .  and winds up staying . . . only to get more annoying as times goes on . . . and NEVER LEAVES!

I’ll tell you something else. The brain is strange and wonderful. Although Alzheimer’s has erased a lot of my short-term memory from my brain, it still allows me to remember certain things. I’ll explain.
Let’s go back to October 28, 2014. 
On the way home, Shannon and I were silent. I guess that was to be expected after the news we just received. I guess I was trying to wrap my head around what I was going to do from this point forward when I had my “Eureka Moment!”

I turned to Shannon and said, “I know what I have to do.”
She asked what I was thinking.
I said, “I have to talk about it.”
She replied with something that has stuck with me for the past 2 years . . .
“Once you put it out there, you can’t take it back!”

I have heard those words so many times in my head as well as during the many times I repeat them as part of my “Alzheimer’s: Up close and Personal” presentation. I can tell you those words have come back to haunt me for when I broke the news about having Alzheimer’s Disease, it did 2 things:
1) Being that I am not in my 70’s or 80’s and I can still do “some of the things” I have always done, some people doubt that I actually have Alzheimer’s Disease and have taken the time to tell me so.
2) I have lost a lot of friends and/or acquaintances because they don’t feel I am still the person I once was. Therefore I’m not able to converse, tell/understand jokes, etc . . .

I chalk it up to lack of Alzheimer’s knowledge and awareness in our society. That’s why when I told Shannon I wanted to talk about it, neither one of us expected I would be speaking to all types of audiences in numerous locations explaining what it’s like to live with Alzheimer’s Disease.

This is not exactly the life I wanted to live, nor is it how I wanted to spend my retirement, however, we sometimes have to accept the cards we are dealt and make the most of it. It also makes it a bit easier to have 3 people, whom I love most in the world, right by my side. Shannon, Asheton and Bradley are right with me on my Alzheimer’s Journey. They help when I need them, they help when I don’t “THINK” I need them and they are there to laugh with me, to cry with me, to joke with me and to make me feel as normal as can be. They are the true example of family.
(I almost forgot to mention, Dallas, my furry friend, who has the intuition as to when I am having good and bad days and attempts to take care of me.)

So, I can look at October 28, 2014 as the day that I received the diagnosis of having a devasting, fatal disease and have a continuous, daily pity party
or,
I can look at October 28th, 2014 as the day that put me on a positive path to help others understand this devastating, fatal disease and at the same time, keeping me “In The Moment.”

I think you know which choice I chose!

Thanks for reading!
Until next time,

PEACE!
B

If You Can Reach At Least One . . .

Since becoming an Alzheimer’s Advocate, I have spoken to groups numbering 1 to 1,000. The locations have been auditoriums, small halls, retail stores, bars, and churches. Neither the number of people nor the location ever affects the way I share my Alzheimer’s story. I speak with the same passion, I speak from the heart, I speak from real life experience.

Shortly after my diagnosis in October 2014, I knew what I had to do. It was something I had been doing all my life . . . something I had done in my professional life. Since I no longer had a professional life, I knew sitting around watching TV all day was not going to do me any good.  I had to talk about it.

Alzheimer’s is a funny (not a ha-ha funny) disease, in that you never know what memories you will keep or forget.
One memory I have kept is of a wonderful Manager I had years ago. He was a retired Navy guy. I’ll call him, “Mike”. “Mike” was the BEST Manager I ever had for he pushed me. When he felt I wasn’t pushing myself hard enough, he called me a “Rack Lizard.” If I remember correctly, (and no, I’m not joking) a Rack Lizard was a Navy or military term used for someone who was a bit lazy, “laying around
 in their rack (bed) all day.) He used it not as an insult or not because I was lazy, but as a tool to push me to be better. 

It was in the early 2000’s, a very busy time in the Communications business for we were launching Digital Cable and High-Speed Internet.  We were knee deep in customer calls wanting information and technical support so we had to hire a large number of temporary employees to help with the overflow. I was the Technical Support Supervisor and I felt I was not giving my regular team members the proper attention. So I went to see “Mike”.

I told him I felt like I was not reaching all my employees and I didn’t want them feeling ignored or unappreciated. What he told me as a response to my concern was something that has lived with me to this day.
He said, “As much as you would like, you are not going to reach every single person. However, if you can reach at least 1 person and that 1 person succeeds because of your interaction, then you have done your job.”

It was awesome advice. From that point forward, I remembered what “Mike” said and it got me through some frustrating times. Although it was excellent advice, the flip side was you never really knew whose life you may have touched, who that 1 person is.
Well, I got see to see that 1 person.

I recently co-moderated a couple of focus groups. We spoke to 2 different groups and they were individuals with Dementia-Related Diseases as well as their Caregivers. The discussions ranged from how they (the person with the Disease as well as their Caregiver) are managing their lives to what they learned from their Physician when they were first diagnosed. 

The discussions were very interesting for I could relate to almost every person in the group. We may have had a different Dementia-Related Disease, but some of the symptoms are the same. The first group was a bit reserved at first but after they warmed up to us, they opened up. We felt it was a great success.

The second group was fewer in number but they opened up immediately. One particular person, I’ll call her “Sally”, was very anxious. She was there with her sister.“Sally” had not yet been diagnosed but was showing signs of someone with Early-Onset Alzheimer’s. (I am not a Doctor and my opinions are my own.) Her sister said she had become extremely forgetful and was getting wore.

From what her sister shared with us, “Sally” was consistently worrying about things she forgot about the day before. She was forgetting about the present day and was not remembering what was going going to happen tomorrow. Basically, she was worrying 24/7 and not really focusing on the here and now.

As I said previously, “Mike’s” advice had a huge impact on me, so much that I use it when I give my “Alzheimer’s: Up Close and Personal” presentation.
It comes in the latter part of the presentation . . . “As much as I would like to reach every single person in the world, I know that is not possible. However, if I can affect at least one person in a positive way, I am doing my job.”

I gave “Sally” some of my own advice that worked for me. I told her (and reminded her sister to help her remember) to let go of the things she forgot about the day before and not worry about tomorrow. The only thing she could do was to live in the here and now . . . LIVE IN THE MOMENT! She began to repeat the phrase over and over as if she was trying to burn it into her brain. Surprisingly, it calmed her, not completely but she was a lot better than what she was. Her sister told me she would help her to remember.

 Now, when I talk to folks, I don’t usually see them again, unless I go back to that same group. Being I was out-of-town, I knew I would probably never see these folks again. I would have to hope that my words helped them in some way . . . not everyone, but just one. 

The next day, I was going back to my hotel and I was hungry. I figured I would stop off at Publix and get both lunch and dinner so I could just eat in my room. I was at the deli counter when I heard someone saying, “excuse me sir . . . excuse me sir.” I turned and it was “Sally’s” sister. She said, “It IS you!” then proceeded to give me a great big hug.

She said, since they left the focus group, “Sally” was changed. She was a bit more relaxed and would say every now and then, “I’m going to live in the moment.” She thanked me for making a difference in “Sally’s” life by listening to her and giving her advice that truly made a difference and had a positive impact. I immediately thought of “Mike” and how finally, after all these years, I experienced “THE ONE!”

We spoke for a few more minutes and I left to go find my dinner. I admit, I was a bit teary-eyed after experiencing something I thought I would never experience. But my joyful moment was interrupted by another voice . I heard, “Mr. Brian . . . Mr. Brian, is that you?” Lo and behold, it was “Sally”. She was waiting for a prescription. She ran up to me and gave me a great big hug, saying, “Thank You, Thank You, Thank You! You changed my life!!!”

I may have, but I don’t remember ever hearing those words before. I just let her hug me and I hugged her back. She told me she had been “Living in the Moment” since the day before and she didn’t even worry about things she forgot. She said she slept the whole night through for the first time since she could remember. She couldn’t thank me enough and she would never forget me and would pray for me and my family as I lived with my Alzheimer’s.

What a WOW moment!!! It was an incredible feeling but also very humbling. Once I got back to  the car, tears flowed. I have given that advice to probably thousands of people and not once has it come back like this. It was a life-changing moment. Now that I have it in print, I will be less likely to forget this experience but if I do, I’ll remember when I re-read this.

I owe a debt of gratitude to “Mike” for sharing his knowledge, his experience and his words of wisdom with me, oh those many years ago.  “Mike” your words have served me well, sir and in case you haven’t experienced “the one”, well he’s writing this blog post!

Now, about that Rack Lizard term . . . .  🙂

PEACE,
B

Discovering a Gift I Already Had

I was recently challenged by my friend Diane Tisseur, Groovy Lens Photographic Art (check her out) from Quebec, Canada, to post a Nature Photograph for 7 days, while challenging a new person each day to do the same. I’m so glad she did.

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Photo from Day 1 taken about 3 years ago 

Being asked to do something with my photographs forced me to look at what I had photographed years ago. Seeing these images brought back feelings of joy, peace and satisfaction. It also filled me with a sense of pride to look at some of the beautiful things I created using my camera, my iPhone  but especially, my mind.

Seeing these images transports me back in time, a time I can remember clearly. It’s like listening to your favorite song or smelling a favorite/familiar scent. You go back to that particular time and experience what you were feeling at that time. Being my short-term memory is depleting, utilizing my long-term memory allows to clearly experience the joy and excitement I once had about photography.

It is also forcing me to think outside the box  in an effort to take new photographs. It’s giving me a new sense of purpose, a feeling of excitement. To be honest, it’s giving an escape from thinking only of Alzheimer’s.

So, thank you Diane, for giving me a gift I already had but was hidden in the back of the closet. I’m digging it out and will be putting it to good use.

PEACE,
B

I Hate You

HATE! It’s a very strong word, a word I hardly ever use, however, there are certain instances when the use of this word is appropriate.
This is one of those instances.

HATE is defined as:
feel intense or passionate dislike for someone or something

I will say that my hatred is NOT directed towards a “someone” . . .
it is a some “thing!”

With that out of the way . . . I HATE YOU!!!
I don’t just hate you, I hate you with a passion. I despise you!
I hate the sound of your name. I hate what you do to people.

You’re a thief, a thief of the worst kind.
You rob innocent people, not of material things, but of their most precious memories. You take away their ability to reminisce, to memorize, and not recognize the faces of their spouse, their children, their grandchildren, and friends. You even go as  far as taking away  their ability to recognize themselves.

You don’t do this all at once. No, that would mean you have a conscience and feelings. You don’t have either of those. You’re a torturous thief, slowly and meticulously robbing individuals over a period of years until there’s nothing left. They are left, literally helpless, unable to do anything for themselves.

To add fuel to the fire, you don’t just ruin one life. You’ve figured out how to ruin the lives of millions, and you’ve done it in a way to stay untouched.

The one thing I can say that could be considered fair is that you show no favoritism. You’re an equal opportunity thief. You know no race, no stature, no sexual preference, no age. You go after whoever you want, and why not? There’s no one to stop you . . . yet!

Your siblings, Cancer, Heart Disease, HIV/Aids as well as your many cousins, were badass in their day, but they had flaws. Their armor looked menacing but it was soon discovered their looks were deceiving. They were conquered. They are still a threat and they still reek havoc upon the human race, but we now know how to defeat them. You, well, your armor, so far, has no flaws.

Just so you know, I’m not the only one that hates you. The actual amount of people that despise your existence is unfathomable. I can’t speak for them but only for myself.

You see, you took my Grandfather way too soon. He cared for my Grandmother, who was a paraplegic, but you didn’t care. I guess along with being a thief, you’re a bit of an ass also.

You took away my Mother. I guess, in a kind gesture, when my Father died, even though she was at the funeral, she had no idea it was her husband of 60 years.

You took away my wife’s Grandmother. My wife adored her Grandmother, but what did you care? Oh, that’s right . . . YOU DIDN’T!

Now you are taking me. Little by little, you are deleting my memory bank, not of the things of long ago, but things of yesterday. Yeah, you have all sorts of tricks up your sleeve, but I’m ready for whatever you throw at me.

You see, Alzheimer’s, I may not be able to defeat you, but my friends and I are doing whatever we can to rise up and band together for the cause. The cause is A CURE, but we will settle for a way to slow you down, to prevent you from robbing others and to ultimately lock the entryway to our brains and the brains of those who come after us.

You’ve had a good run. Your Father, Dementia, must be proud, but, like your siblings, you will also, one day,  be defeated!

Until then, I will continue to hate you, but, I do not fear you!

 

Peace,
B