Scanning the headlines under the topics of Alzheimer’s, Alzheimer’s Disease, Dementia and other related topics, I see a trend. The trend is for the future and that’s awesome. My hope is that no one will have to go through what I and millions of others have gone through and are going through now. Trust me when I say, you DON’T want to experience Alzheimer’s Disease.
This is why, towards the end of every single presentation, I make this statement, “I made a vow to myself to share Alzheimer’s Education and Awareness for as long as I am able, in order to benefit those that come after me. I do this in the memory of the loved ones I have already lost, for the new found friends I have recently lost, and for the friends and loved ones I will lose.”
Scouring the headlines, as I do most every day, I see I see things like:
Excessive alcohol use linked to early-onset dementia risk (I have yet to see an Alzheimer’s / Dementia health warning posted outside a bar, restaurant, sports stadium or any other establishment that serves liquor. Even if these types of postings would start popping up, do you think it would make a difference?)
There are a lot of things floating around right now appearing in the News Feeds, but in my humble opinion, it’s all speculation. This headline sort of summed it up for me and is also the most honest headline I’ve seen in a while:
Alzheimer’s Drug Trials Keep Failing —
It May Be Because We Don’t Understand the Disease
There is hope though. While Pfizer made the decision to back out of the Alzheimer’s Drug Research arena, enter Bill Gates and Warren Buffett, each contributing $100,000,000. It’s refreshing to see individuals like Gates and Buffett step up and do something like this, not for the glory but for the good of humankind.
Living Well with Alzheimer’s Disease is hard but as the saying goes, nothing worthwhile ever comes easy. Throw in the fact that there is no way to prevent it from developing, to stop the progression or to cure it, it has not stopped most of us from living somewhat of a positive, purposeful life.
It has also not stopped the countless number of researchers, drug companies, and benefactors from doing what they do each and every day to search for a cure.
I am confident that one day, there will be a cure. Before that, a way to stop the progression of the disease. Before or after that, a way to prevent from developing. Finally, after that . . . THE CURE.
Until then, I’m just going to continue living, as best I can, day by day, in the moment.
Until next time . . . PEACE!
Once again, a New Year is approaching. In my mind, I’m thinking, “Well, I made it through another year so I should be thankful for just that!” I also think, “what am I going to do in 2018 to stay both physically and mentally fit?” Well, the two go hand in hand.
Memberships for gyms and fitness centers explode in January because I believe, people really want to do something positive for themselves and being physically fit is a positive thing. However, it’s not for everyone. I know it’s not for me, but that doesn’t stop me from doing it on my own.
My resolution for this year is to stay “physically healthy”. I have enough “doohickey’s and “whatchamacallits” I can use to make myself more physically healthy (hand weights, resistance bands, etc…). I also have a dog as well as my own two legs to take me for walks. Last, but certainly not least, I also have my great-niece, Alexis, who is enrolled at LSU(GEAUX TIGERS!) majoring in KINESIOLOGY with a focus in Fitness Studies. (KINESIOLOGY is an academic discipline that involves the study of human movement, especially the role of physical activity and its impact on health, human performance, society, and quality of life.) Alexis prepared a fitness plan that specifically meets my needs. (SHE’S AWSOME!!!)
In addition to staying physically healthy, I’m also vowing to stay “brain healthy.” A recent study published in the American Journal of Preventative Medicine states that doing physical exercise in combination with cognitive engagement can enhance brain health.
Having Alzheimer’s Disease makes it difficult to remember to do both the physical and mental exercises, but, that’s where technology comes in. In other words, I set reminders on my phone to alert me.
One of the things I do is to play “Words with Friends” on Facebook. Some people will play it for fun or for competitive reasons. I do it for brain health. Many of you who I’m connected with on Facebook may see an invite (or 2 or 3 ‘cuz I forget if I’ve already invited you or am already playing a game with you) to join me in a game of Words with Friends. Yes, I do it for the social interaction, but I also do it to utilize my brain. (NO, I don’t use any of the cheats. That would defeat the purpose) You will find that I lose A LOT of games but I don’t do it to win. I do it to push my brain to think.
There’s also an app called WordBrain where you try to make as many words as you can in a certain amount of time.
You can also play BOGGLE, Tetris, Word Search (either on an app or using a word search book). Word Whizzle is another game where you will see words spelled backward and forward.
I’m sure there are other games you know that can test your brain function and if you would like to share them with me, I would be happy to share with my readers.
My main message is to treat your brain as a muscle. It needs to be “worked out” in order to stay healthy. Will working out your brain stave off any type of cognitive impairment? Who knows? Will it erase Alzheimer’s or any other dementia? Not that we know of yet but, hey, it may help slow it down a bit.
What I’m trying to say is, not trying, at least for me, is not an option. I explore many options in hopes that I can slow my Alzheimer’s decline.
So, in 2018, don’t forget to work out that “brain muscle” as often as you can, because, ya neva know!!!
Until Next Time . . .
I wish you PEACE and a HAPPY NEW YEAR!
This morning when I opened up Facebook, I saw I had a message from a good friend of mine. It read, “My thoughts, love, and prayers are with you today.”
I thought to myself, “How very nice of her to say this.”
Then I read it again and thought, “This is what people usually say when you’re having an operation or you’re starting a new adventure or when you lose someone.”
So, I wrote back to her saying, “Thank You, but why do you say this today?”
Then I looked at the date, January 14th, and tried to think of anything that happened on this day.
Sadness all of a sudden overtook me.
I walked over to my desk to look at my “reminder board” and at the top are 2 Prayer Cards from the funeral services of my Dad (2/8/10) and Mom (1/14/15). I knew before I looked but I had to verify, not just that today was the 1 year Anniversary of my Mom’s death, but to realize I had forgotten.
Hours later as I am writing this, tears still flow, not just because she is no longer of this earth but because of the disease I share with her, the disease that took her mind and memories, that same disease that is now taking mine . . . Alzheimer’s.
You know, it’s strange how the Alzheimer’s mind works. The memories don’t come back on their own. A bit of prompting is needed. So, as I sit here trying to remember details of that day, the one and only memory that comes to mind is of a phone call from my sister.
When I first saw her number pop up I froze. You see, my Mom had a stroke a week or so previously and she could no longer chew her food, or swallow for that matter, so a decision was made to allow her to be comfortable and pass away in peace. (This may not be exactly factual but it’s the way I remember it and that’s good enough for me.)
Anyway, my brothers, my sister, my nieces and nephews all went to say their goodbyes but my Mom, who always had a strong will, just kept hanging on, as if she was waiting for something. That is what prompted my sister to call.
You see, I live in FL, I was just diagnosed with Early-Onset Alzheimer’s about 2 1/2 months previously and I was only driving sparingly. Making a trip at that point was not possible.
Anyway, my sister called and said, “Everyone has been by to see Momma, everyone but you. I know you can’t be here physically but I think she is holding on to hear your voice. I’m going to put you on speakerphone and I want you to tell her good-bye and that it’s OK to go.”
It was the hardest, yet the most beautiful thing I have ever done.
So, I had a “one-sided” conversation with my Mom. I told her about my Alzheimer’s diagnosis and since we shared so many things in our lives (I was the youngest and a bit spoiled by my Mom and my sister) why not share Alzheimer’s as well. I told her how well I was being taken care of by Shannon, Asheton and Bradley and how I couldn’t feel more loved.
I then told her that it was OK to go. It seems she had taken care of so many people during her lifetime that maybe she felt she still had more to do. I let her know that everyone was in a good place and that she could now go where she could finally rest. (like I said before, this may not be EXACTLY what I said, but it’s what I remember).
My sister told me that while she was listening to my voice, there was eye movement under her eyelids as if she was aware. I’m not sure if that was possible but because we know so little about Alzheimer’s, anything is possible. I don’t remember if I sang to her to her or not (we shared a love of music as well as singing) but I would like to think I did. I told her I loved her and then spoke to my sister gain.
A few hours later, I received another phone call to let me know she was gone.
As hard as I try, I don’t remember anything of the days that followed. Maybe that’s a good thing. I’m sure they were filled with sadness and I’m probably better off not remembering.
All of this makes me wonder . . . “Do people in the last stages of Alzheimer’s still hear and understand but just can’t communicate back?” I hope so. I hope I can still hear the voices of my loved ones when my time comes. I want to hear their voices and music and all the things that make me happy. I can only hope.
Next year, I don’t know know if I will forget this day again but if I do, I hope someone will remind me. For now, for today, while I still do remember, I will think fondly of the woman who . . .
– gave me life
– taught me to always open doors for people – especially ladies and the elderly
– to say yes sir and yes ma’am
– taught me to always carry a handkerchief
– shared with me her love of music and gave me my singing voice
– loved me unconditionally and with all her heart
I love you Mom and always will.
Rest in Eternal Peace. Hope Dad isn’t bothering you too much and I’ll see you soon.
At that time, we’ll find some place to sit, put on the Sound of Music soundtrack, sing and reminisce . . . clearly.
Until then, I will keep on keepin’ on, trying not to burden Shannon and the kids too much and continue doing what I do and I do it in honor of YOU!
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,
In honor of National Alzheimer’s Awareness Month, I was asked by the Alzheimer’s Association to write about my Care Partner, my Life Partner, my Wife, Shannon.
This is a tribute to her for not only caring for our family, but caring for me and all that goes with it.
I LOVE YOU Shannon, more than words could ever say.
Thank you for being YOU!
I first met my now-wife Shannon at work. I was her supervisor, and since she knew the responsibilities of the department inside and out, I leaned on her for assistance.
We started to get to know each other on a more personal level and then we started dating. She asked me out – I had no idea she liked me in that way! After dating for some time, she took me to Disney World and “proposed”; we had a beautiful wedding on the sands of Pensacola Beach by the Gulf of Mexico and rest is beautiful history.
Learning of my diagnosis sticks in my mind, but not due to feelings of sadness. I was focused on the beauty of my wife. After I asked my neurologist if I had Alzheimer’s and he said “yes,” I remember crying uncontrollably. All I could think of at that moment was what my mother was going through at the time. (Brian’s mother died of Alzheimer’s.) Shannon sensed that. She took my hand and said, “I love you and you will NOT go through this alone. I will always be right here.”
Since then, she has beautifully kept her word.
Before my diagnosis, we travelled a lot; short trips, cruises, trips to New Orleans (my hometown) or Fayetteville, NC (hers) and our favorite destination, Disney World. I used to tell her: “I’m your driver, you’re my navigator and we will go wherever you want to go.” We laughed a lot.
Sadly, the travelling had to stop due to finances. When both of us were working, we could basically do whatever we wanted. That changed when I was no longer able to work. Shannon became the sole financial support. We had to downsize in order to maintain a healthy lifestyle for our college-aged daughter and our son in high school. Shannon has had to adjust to my mood swings, my confusion, my argumentative moments (wanting to do the things I used to but can no longer do, like driving) and losing part of who I used to be.
She has done it all with no complaints and with only unconditional love. She is simply amazing. I’m not sure what I did to deserve her.
Shannon’s biggest strengths are consistency and loyalty. When she makes a commitment, whether it’s professional or personal, she sticks to it – and expects everyone to do the same. These qualities have allowed her to reach a position of great responsibility as an operations manager for a realty company. Her job is hard work and requires long hours but she does it in order to provide for her family. I admire her every day for her strength as a person.
Her personality is a mystery to most but not to me. She is loving, tender, somewhat adventurous, quiet and the funniest person I have ever known. She doesn’t know she is funny, but her dry sense of humor keeps me in stitches most of the time. She talks back to the TV, she figures out who did it on the ‘Who Dunnit’ shows long before the plot is revealed and she loves the ID network. We still laugh a lot, which is wonderful.
I want to thank her and all caregivers. Caregivers – I saw how you took care of my mother, my father, my grandfather and my wife’s grandmother. It takes a certain special type of person to be able to do what you do, but you do it day in and day out. You never complain, you always wear a smile and you’re always there, taking care of your own family or of other families you treat like your own. You are unbelievably wonderful people and for those who are unable to thank you themselves, I thank you!
We can honor caregivers and care partners by giving them something they probably need or deserve – a period of time, whether it’s a few hours or a few days, to have time to relax. This could be a spa treatment, a weekend at a hotel, a manicure/pedicure. Don’t be afraid to ask a caregiver what they want so that you can give them something you know they would enjoy.
I want my care partner Shannon to know that plain and simple, she is my hero.
Shannon, I hope you never feel that the things you do go unnoticed or unappreciated. The vows we took were for better or for worse, in good and bad times, in sickness and in health. You probably never thought it would go to this extreme. Just know, if the tables were turned, I would be right where you are now. I love you unconditionally and you show me that love every day. My only hope is that you can see and feel it in return.
About the Author: Brian LeBlanc was diagnosed with younger-onset Alzheimer’s in 2014 at age 54. Hecarries the APOE-e4 genotype, a genetic mutation which increases the risk of developing Alzheimer’s disease. His mother, father, and maternal grandfather have all died with symptoms of the disease. As a member of the Alzheimer’s Association 2015 National Early-Stage Advisory Group, Brian would like to raise awareness of the impact of younger-onset Alzheimer’s disease and be a positive example for other newly diagnosed individuals. His mantra is, “I have Alzheimer’s, but it doesn’t have me!”
Brian and Shannon live in Pensacola, FL. Together they have three children.
Today is the day I walk at the 2015 Pensacola Walk to END ALZHEIMER’S. You could say it’s the Super Bowl for the Alzheimer’s Association.
Over the past few Saturday’s and continuing into November, throughout the United States, Alzheimer’s supporters have figuratively and literally joined hand-in-hand with one another as well as with individuals with Alzheimer’s.
If you’ve noticed, the faces and ages of people with Alzheimer’s get younger and younger. That’s because Alzheimer’s is no longer a disease of the elderly. It is now affecting individuals under the age of 65, individuals in their 30’s, 40’s and 50’s, individuals like me. Early-Onset Alzheimer’s is not as well known as regular Alzheimer’s, so I walk.
I watched my grandfather, my wife’s grandmother as well as my mother all live productive and wonderful lives. Instead of going into their golden years enjoying their children, grandchildren and great-grandchildren, I watched their memories be taken away by this cruel and horrible disease. It has no cure so, I walk.
I know what my future looks like. I wish I didn’t, however, I don’t dwell on that. Instead, I live in the moment because the moment is all I have. I still have my long-term memories but my short-term, let’s just say I don’t remember too much from yesterday. Thankfully I have 3 people in my life whom I love more than anything in this world who lovingly, and without a moment of hesitation, help me each and every day navigate my way through the day. So, they walk with me.
Cancer, Heart Disease, HIV / AIDS, as well as other diseases have had success in finding prevention and cures, so I know there’s hope. I know first hand about heart disease having survived 3 heart attacks myself so I know there is hope for Alzheimer’s. The difference between Alzheimer’s and other diseases is funding. Where other diseases receive BILLIONS from the National Institute of Health for research, Alzheimer’s is still in the MILLION dollar category. Through these walks we not only raise awareness for Alzheimer’s, we also raise funds. So, we walk.
Without hesitation, I have vowed to my family and to my loved ones who are no longer with us, that I will fight the fight; that I will advocate as much and as often as possible; to make sure EVERYONE I come into contact with will know, not only about Alzheimer’s but Early-Onset Alzheimer’s. So, I walk.
On behalf of my family, myself and all those who have Alzheimer’s who are not able to speak for themselves, I thank each and everyone you for supporting us.
I may have Alzheimer’s but it doesn’t have me . . . So I will continue to walk!