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

The Angry Side of Alzheimer’s

The Angry Side of Alzheimer’s

One of the things that makes me angry about having Alzheimer’s Disease are people that DO NOT WANT TO UNDERSTAND that I, and people like me, still know what’s going on around them and can still carry on an intelligent conversation. Sure, the words may not flow as evenly and smoothly as they did before, the mind may not allow us to remember the conversation an hour or a day or a week from now, but we still enjoy being in the moment.

Before my diagnosis, I had friends . . . lots of friends, or so I thought. These people who I thought were friends kept in contact with me, returned a phone call whether or not I left a message, would interact me with through Social Media or in person. Where in the hell are these people now? I have no idea. Don’t get me wrong, I’m not mad that these people don’t talk to me anymore, I mad for the reason they don’t talk to me anymore. There’s a difference , and in addition, I feel sorry for them.

stigma-tmpwimi-wb-squared1People that don’t understand something or have misconceptions of something tend to make their own decisions about that something. It’s called STIGMATIZATION!
(WOW, the Alzheimer’s Guy knows a big word and can use it properly in a sentence. Imagine that?)
When it comes to Alzheimer’s Stigma, the Alzheimer’s Association does a great job of describing it and how to deal with it here : Alzheimer’s Stigma @alz.org

Here are a couple of examples of stigma the Alzheimer’s Association uses:
A diagnosis may test friendships. Friends may refuse to believe your diagnosis or withdraw from your life, leaving a feeling of abandonment or isolation.
The first part of this I believe to be true.
The 2nd part about isolation and abandonment is not. My wife and kids, as well as the friends that have stuck with me, and some family members, have not allowed me to feel abandoned and/or isolated. I am thankful for their continued presence in my life.
I can’t say the same for others.

– Relationships with family (and friends) may change. Family members (and friends) may not want to talk about the disease, perceive you as having little or no quality of life, or may avoid interacting with you.
This is the biggest issue. I really feel that most of my friends just don’t know how to deal with my disease, or just don’t want to deal with me having the disease, so they just don’t deal with me at all.
This was one of the main reasons I created a Facebook page. I still post “some Alzheimer’s related things” on my profile but my Facebook page is strictly for Alzheimer’s related information. Due to lack of engagement on my Facebook profile, I felt people would rather read about family and funny things instead of the reality of Alzheimer’s.
In case you’re interested, my page is: My Alzheimer’s Journey

For more examples and information on Alzheimer’s Stigma, go to: Alzheimer’s Stigma @alz.org

All of this is glaringly evident to me since I no longer work and since I no longer drive. It’s not like I stay at home and do nothing. I spend a lot of my time researching and Advocating for Alzheimer’s. For me, my Advocacy has turned out to be the best job I have ever had without getting paid and has introduced me to some pretty wonderful people, both with and without Alzheimer’s.

You see, I’ve learned to overcome the Alzheimer’s Stigma. It took me a little while and because I still retain my long-term memories, I still miss the friends I “used to have” but it hasn’t stopped me from living. I’m still active on Social Media, I still make phone calls and leave messages, I still wait for the phone to ring from the people that say they will call me back.
Does the fact that my phone goes days without ringing  make me feel sorry for myself? No!
Does it piss me off? Sometimes, but all I can say to that is, it’s their loss.

My life is simple now. It’s not what I envisioned my retirement to be but just the same, it’s simple. I live with 3 amazing people who love me and take care of me, and I have my little furry friend who is always by my side. He’s also an excellent listener.

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I know the world would be a much better place in which to live if there were no racism, no inequality in the workplace, no unnecessary violence, and if we could all gather as a world and join hands every once in while and sing Kum-Ba-Yah.
Until that happens, just do me favor . . . just because someone, a friend or not, has a disease, do not abandon or isolate that person. There is a great chance if the tables were turned, that person would stick by your side.

PEACE,
B

 

 

The Disease that Keeps on Taking

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.

10830689_10204543352758086_1036799725875045458_oI 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 goodbyes10931127_10204543328837488_6014411360357330344_n 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!

PEACE
B

 

 

 

 

 

 

My Care Partner Is My Hero

My Care Partner Is My Hero

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.brisha

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.

Just Another Reason Awareness is Still Needed

Just Another Reason Awareness is Still Needed

I was in a locally-owned retail store yesterday afternoon when, because I was unable to find the item I was looking for, I had to ask for help. Confused and a bit frustrated, I tried to explain to the store employee what I was looking for but the words came out stuttered and, I’m sure, unintelligible. To avoid further embarrassment, I stopped and told the very nice lady, “you’ll have to excuse me but I have Alzheimer’s and my words don’t come out right at times.” Well, she just laughed and said, “I know what you mean. I get Alzheimer’s when I drink!” and laughed a bit more.

I didn’t get mad because I’m used to reactions like that from people who don’t know about Early-Onset Alzheimer’s. Instead, I explained to her that I had Early-Onset Alzheimer’s Disease and that it affects people under the age of 65. I thought she was going to cry from embarrassment. I told it was OK and that I deal with this type of reaction every day. It gave me an excuse to Advocate. Here I was standing at the cash register with, first just her but as time went on, a group of about 5 people, talking about Alzheimer’s.

I answered questions about how I knew to get diagnosed, what type of issues I was having, what were the signs before diagnosis, etc. After about 15-20 minutes of fumbling and stuttering my way through Alzheimer’s related information, giving them the http://www.alz.org website, telling them to look up “Know the 10 Signs,” I left.

I have to say, for the next few hours, I was bothered by what happened. Not because she made a joke, but because here was yet another person who didn’t know about Early-Onset Alzheimer’s. Other diseases have no age limit. You can tell someone you have cancer and they will immediately know it’s possible. For me to tell someone I have Alzheimer’s when the majority of people think that only the elderly can have this disease, simply means that more awareness and education is needed.

Right now, you can’t watch a football game during the month of October and not see pink. I think it’s wonderful that Breast Cancer Awareness is out there and in your face. The pink ribbons and football gear works, for so many people are now very familiar with that disease. For years, Jerry Lewis used to do the Muscular Dystrophy Telethon on Labor Day, not only raising awareness, but millions and millions of dollars. Because of that, people are aware.
WHERE IS THE PURPLE???  WHERE IS THE ALZHEIMER’S AWARENESS?

The real question should be, why do other disease receive billions of dollars from the National Institute of Health when Alzheimer’s doesn’t even crack the billion dollar ceiling? Again, I hold no ill-feelings towards other diseases. If anything, being that they have now found treatments, preventions and cures, it gives me hope that one day, the same will be said of Alzheimer’s. For now, well, we keep advocating.

Does the fact that a cure/treatment/prevention isn’t even on the horizon stop me from advocating? NO!
Does it frustrate me? Yes!
But again, does it stop me? NO!

The only positive from all of this is there is a group of people (a small group) that now know about Early-Onset Alzheimer’s. If one of those people shares that information with someone who may be showing sign of Alzheimer’s and that person goes to their Doctor, well, I have done my job.

One at a time. It’s slow, but at least it’s progress.

Until next time . . . PEACE!

B
“I Have Alzheimer’s, BUT It Doesn’t Have Me!”