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,
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!
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 . . . . 🙂
Spring! A time of renewal. Flowers bloom, sending their floral scents into the air; animals awaken from a long winter slumber and newborns take in their first breath. The earth awakens, “springing” into beautiful, colorful life again.
Spring takes everything old and makes it new again . . . or so it seems.
Just Imagine if we could do that with our brains? Our bodies? Our Society? Imagine developing a mental or physical illness in the Summer, Fall or Winter, then going through a transformation or renewal, come Spring. Everything would be new again.
Just Imagine awakening to a world with no hatred, violence, hunger or poverty.
John Lennon had it right when he penned the words:
“Imagine no possessions. I wonder if you can.
No need for greed or hunger. A brotherhood of man.
Imagine all the people, sharing all the world.
You may say I’m a dreamer.
But I’m not the only one.
I hope someday you’ll join us.
And the world will be as one.”
How I wish this were true. In a perfect world, it would be, but we all know perfection is hard to come by.
Just Imagine if I awoke this morning and I would have been mentally renewed. Instead, I woke up and had no idea what day it was. I had no idea the season had changed. I didn’t know what happened yesterday or the day before for that matter.
Just Imagine if everyone who has Alzheimer’s or other Dementia-Related Illnesses woke up tomorrow morning and there was a cure or a way to stop the progression or a way to prevent this disease? What a day that would be.
Unfortunately, I know this will not happen tomorrow, next week, next month or next year. I still have the wherewithal to know a cure will not be found in my lifetime, but it doesn’t stop me from advocating.
It didn’t stop me from advocating when I went to Tallahassee to speak to our FL Legislators regarding state funding for our aging population.
It’s not going to stop me from advocating when I go to DC in April to speak to our Congressional Leaders about funding additional dollars for research.
It’s not going to stop me from advocating at my next presentation, whether it be 1 or 1000.
You see, I advocate for the next generation, for those individuals who come after me, in hopes a cure will be found for them.
Until then, I will continue to . . . Just Imagine.
This is a transcript from the 3rd interview in a series I did with the University of West Florida’s Sandra Averhart of WUWF. I’m also including an audio link to the actual interview.
Since November of 2015, we’ve been getting to know Brian LeBlanc of Pensacola. He has been diagnosed with early on-set Alzheimer’s. Now in his mid-50’s, he has known about his condition for a little over a year now. As we continue our conversation, we focus on how the disease has impacted his daily life and how he’s dealing with it.
“Being this is radio, you can’t see what I’m doing right now, but I’m holding up my cell phone,” said LeBlanc. “That’s my constant companion.”
According to LeBlanc, his phone tells him everything, even when to eat.
“Over the past year, probably, I’ve lost probably around 30 pounds. It wasn’t because I was trying. It’s because I was forgetting to eat,” he said.
It was his sister who made note of his weight loss, when she visited a few months back. LeBlanc thought to himself, “I’m just eating healthy.” That was until his wife pointed out the reality that he wasn’t remembering to sit down for a meal.
As a result, he now has reminders on his phone of when to eat, when to take medication, and when to do things such as check the mail or let the dog out.
“Um, without it, I simply would not remember, because you can’t,” LeBlanc said.
Repetition is another aid that he utilizes, noting that before our first interview at the WUWF studios, he must have looked at the email 20 times.
The email was sent to him by Dr. Rodney Guttmann, Director of the University of West Florida Center on Aging, who first proposed the idea of LeBlanc sharing his story with the WUWF audience.
Our first interview was on a Tuesday. But, when it comes to the specific days of the week, LeBlanc says he says he has no idea.
“I know numbers. I can look on a calendar and I’ll see the tenth, you know, be here,” said LeBlanc. “But I don’t know the days of the week anymore.”
LeBlanc can identify weekends, he says, because his family members are home for two days in a row. But, confusion sets in if you throw in a weekday holiday or a three-day weekend.
“That messes me up, really bad,” said LeBlanc.
As a result, his daughter, who’s in college, will write her schedule on a board indicating when she’ll be away and when she comes home.
LeBlanc says access to such information is helpful because he’s found that he doesn’t do well with surprises.
He and his family members also have noted more frequent mood changes.
A friend of his talked about a feeling in the front part of his head that he couldn’t explain. LeBlanc referred to it as being his ‘fog.’
“As hard as you try to see something you just can’t,” LeBlanc said. “Sometimes, it’s completely shrouded. Sometimes it’s in the middle; it depends. But, you can’t see, and it comes and goes. It’ll come in, roll in, roll out.”
It’s on those ‘foggy’ days when LeBlanc can’t get behind the wheel of a car.
Right now, he’s functional and GPS is his best friend. But, he fears getting lost, which triggered his diagnosis, and he has no comfort that he’ll arrive at his intended destination.
“I’m extremely nervous about driving,” said LeBlanc. “That’s why I’ll only go places that I sort of know.”
LeBlanc says he prefers simple routes, without too many turns, adding that under no circumstances can he drive at night.
“That’s completely out of the question, because, I look for landmarks or street signs. At night I can’t see them and it’s not good.”
At night or when he’s in a fog, LeBlanc’s wife and daughter drive him around. Again, LeBlanc is still capable now under certain circumstances, but he knows it won’t be long before he’ll have to give us driving altogether.
“I’m worried that not only will I harm myself,” LeBlanc said. “But, if I harm someone because I was confused, I would never ever be able to live with myself with that.”
In particular, LeBlanc does not want to have to experience what his father went through when LeBlanc’s oldest brother took his keys away from him.
“My father, he forgot a lot of things, but he never forgot that.”
And, as we wrapped up our first extensive conversation, LeBlanc was feeling pretty good about the fact that he made it through the interview without notes. His public speaking on behalf of the Alzheimer’s Association has helped.
He’s part of Alzheimer’s support groups and serves on the executive committee of the Florida/Alabama Panhandle Alzheimer’s Association. Also, LeBlanc is chronicling his experiences in a blog, Alzheimer’s: The Journey…my Alzheimer’s Life.
In general, though, he says speaking isn’t nearly as easy as it used to be.
“People used to tell me I could talk to a tree and have a conversation,” said LeBlanc. “But, now I have to choose my words, thinking before they come out of my mouth to make sure that they sound okay.”
They do sound okay, and in 2016, we hope to hear more from Brian LeBlanc, talking about the changes in his life due to early on-set Alzheimer’s and how he’s coping.
When trying to decide what to write for a new entry, I think about what I would find interesting and what new information I could share that may be interesting to others. I would’ve had a tough time trying to come to that decision even if I didn’t have Alzheimer’s, but because of my “foggy times” and my “dark, extra-confused times,” it makes it all the more difficult.
Instead of trying to re-invent the wheel, I decided to write about what I know best and that is, how I feel and how I act when Alzheimer’s sucker punches me straight in the face.
Welcome to the Dark Side!
Below you will read an excerpt from a presentation I recently gave:
(Taken from my Cognitive Resilience Presentation given at the Generational Resilience Conference in Mobile, AL)
Before I was diagnosed, I pretty well knew the outcome by seeing in myself what I saw in my family members. The difference was I was younger and I was a fighter. I was not going to take this lying down.
I have to say, knowing something and then hearing the clarification of that something is 2 different things. You think you’re ready for it, but it sneaks up on you like a sucker punch.
Imagine associating a positive diagnosis of Alzheimer’s, or a positive diagnosis of any disease for that matter, to a boxing match. It’s like receiving an unseen, right hook, right on the chin!
You fall to the mat, you hear the Referee start the count … 1,2,3 …
you try to get up, but you can’t move, you’re just numb … 4,5 …
you shake your head trying to get a little bit of clarity … 6,7,8 …
the numbness starts to fade … 9 …
you hear a voice screaming at you saying, “GET UP! YOU SAID YOU WEREN’T GOING TO TAKE THIS LYING DOWN! DO NOT LET THIS BEAT YOU!”
You realize it’s your own voice screaming at you hearing the words you said to yourself earlier.
You find a strength you never knew you had and you rise to your feet before the count gets to 10.
Now I know that was a bit dramatic, but I’m trying to prove a point. It is dramatic. It’s a life-changing moment. You realize your life just changed, and not for the better.
My 10 count lasted about 2 days, curled up in a ball in my bed, while I envisioned my Grandfather, my Father, my wife’s Grandmother and my Mother, not as they were before the disease took them, but at the worst part. I was at a big pity party, and I was the only guest. I kept asking to no one, “How had this happened to me?” “Why had this happened to me?”
Well, since no one was there to answer questions which I knew had no answer, I had to take my own advice and get up before the referee made it to 10. There was no way I was going to be counted out.
You see, it’s not just me that I have to think of. I’m married to my best friend, the love of my life. I can’t quit on her!
I have two step-children, who I don’t call step-children. My daughter is 21 and my son is 15. They lost their Dad back to heart disease in 2009. There’s NO WAY I can quit on them!
So, each and every day when I wake up, I get up and make a difference.
It seems like more than a year ago when I received my diagnosis. A lot has happened since then and a lot of it has been positive, however, there has been some dark, difficult times.
I operate on a schedule, a schedule that resides on my phone, a schedule that I wrote about in my previous post “There’s a Reason it’s Called: The Easy Way.” If it’s not on that schedule, if I am not reminded what I am supposed to do that day and when I’m supposed to do it, there’s a good chance it won’t get done. The same goes for the unexpected things that pop up.
I know you’ve heard the saying, “Don’t Sweat the Small Stuff ‘cuz it’s All Small Stuff.” Well, the same cannot be said for me. I’m not going to speak for everyone for I know everyone reacts differently, so I will just speak for myself. Because of the DNA I received from my Father, my temper has always been a bit short. I can hear some people saying, “SHORT? Are you kidding me? Short doesn’t even come close!” I like to call it “being passionate” but that usually also gets a laugh.
What I’m trying to get at is, I worked very hard to control my temper. No one needs to hear or see that, especially if they have never been around that type of person before. I did pretty well, only exploding every once in a while. Since my diagnosis, it happens more often. I don’t think it does because I can no longer remember when it happens or how many times it happens. So, I ask. It happens more times than I would like.
One of those times was this morning. I’m not going to get into the details. All I will say it was a very small insignificant thing and I exploded. I exploded all of my wife, all over my daughter and I would’ve exploded all over my son, but he was still sleeping. I even exploded all over #DallasTheDog! It was not only unfair to them but unacceptable to me. Just because I have Alzheimer’s does not give me a free ticket to treat them in a disrespectful way.
Once I realize what I’ve done, when I see the looks of pain and sadness on their faces, I go into my dark place. My mind becomes a darkened sphere of sadness. I think about what I have done, the words I have said (shouted) and try to figure out a way to apologize.
When I re-enter into reality, I do apologize, but it is THEY who make me feel whole again. They hug ME, telling ME it will alright, telling ME how much they love me. I tell them how hard I have worked to keep everything under control and I know I haven’t exploded or complained in a long time, only to be told it was “just a few days ago when you . . .” or “well, it was just last week when you . . .” They do this not to throw it in my face, but because I asked them to tell me. They don’t like to because they know it will make me sadder than what I already am, but, like everything else they do for me, they do that also.
This is just one instance of what happens. It’s mainly one instance because it’s all I can remember right now. I know if I asked I could fill up pages, but I’ll save that for my book! 😉
The reason I write about this is because, when I am seen in public, I appear to be a polished, educated Alzheimer’s Advocate who can speak eloquently about my Alzheimer’s experiences. I am for the most part, because my long-term memory allows me to call upon my Public Relations days when I could speak about anything and everything. The only difference now is rather than speaking off-the-cuff, I read my words from a script. It sounds polished only because I practice over and over again, but by the time I get to the actual presentation, I have forgotten what I have practiced and the long-term PR memory kicks in. The days of learning and retaining anything new are over.
I wish the days of my darkness were over but I have the feeling they have only just begun. Whenever I am speaking of my Alzheimer’s, I mention that the person with Alzheimer’s is not the only person that is affected by the disease. In my case, it’s my family who, not only loves me unconditionally, but cares for me unconditionally, and does so under the radar.
They embrace me on my good days as well as on my dark days. They and I both wish for the dark days to be less. In my mind they are, but in their reality, I have come to find out they are not. All I can do is try that much harder. I just hope my brain understands what it I am trying to do.
Until next time,