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
You, my dear, and your wife are freakin’ rock stars who are owning this disease and not letting it own you. Keep driving that awareness, B! xoxo
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Thanks Erika!!!
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As I always say . . .
“I have Alzheimer’s, BUT it Doesn’t have ME! I don’t allow it to define who I am.”
Thanks Erika!!! ♥
B
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You are one a awesome human being, Brian!
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Thanks Teresa
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Not awesome, just passionate about getting the word out. Somebody’s gotta do it, right? 🙂
Thanks Teresa!!!
B
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I can’t say that I understand because there is no way that I can. I can’t say, it will get better, because it will not. All I can say is I love you and I am here for you yesterday, today and tomorrow.
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I love you too! Thanks You!
B
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You’re always an inspiration, Brian! I love to read your posts. Your courage & strength are a testimony to many people. I hope to see you in a couple weeks for the Alz Walk Committee Wrap-up!
Blessings, Robin 🙂
Sent from my iPhone
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Thank You, Robin! Working with you these past 2 years has sown me just how much 1 person can have. YOU inspire me!
I’ll see you soon!!!
B
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Thanks for posts Brian they are so helpful as i try to work out the best way to support my dear wife.
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Even the smallest of things make biggest impacts. I’m sure she appreciates everything you do for her.
B
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paulangordon; Brian I have watched you successfully pursue various forms of supporting others with this disease. You are such a positive and inspiring individual. Thanks for showing the insides of this disease and still maintaining a positive attitude. Thanks.
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Thank you so very much for your kind words. Coming from you, it means so much!
B
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