Dementia Meditations: ‘Parting is Such Sweet Sorrow’

By Brian LeBlanc

“Parting is such sweet sorrow.” I believe that was our good friend, Mr. Bill Shakespeare. 

You might be inclined to think this is another blog about death. We talk about it a lot. It’s a very real thing that will someday happen as a direct (or indirect) result of my Alzheimer’s disease and vascular dementia. 

But this is not about that. It’s not even about saying goodbye to a loved one – as we’ve also discussed. It’s about saying goodbye to a beloved thing. 

I will not be returning to Disney World

Make no mistake, I looooooooovveeee Disney World! Still do! I’ve been going there since 1976. It’s not just a place for kids. It’s a happy place, my happy place. In a world that can be so nasty – and, believe me, I have a lifetime of nasty experiences beyond the health issues you know – Disney has been my escape from it all.

So here it is. We came back from Disney in late April. (Maureen, my life partner/care partner, had to remind me when that was.) I even wrote a blog and we did some other content for #WeAreDementiaStrong about how awesome the trip was – which it was … until my dementia had something to say about it.

Maybe there was a bit of denial. Maybe I just wasn’t ready to talk about it. 

So What Happened? Alzheimer’s Disease Crashed the Party. That’s What.

To recap, Maureen and I were at Disney with our 4-year-old granddaughter, Emma, and some friends from New York City. We were having a rip-snortin’ good time – visiting the Magic Kingdom and bouncing around a few other places in the sprawling wonderland.

Emma was so cute, so precious. Seeing Disney through the eyes of a child brings you back to your own childhood in a very unique, sentimental way. Like you’re a kid again, but you don’t remember thinking as a kid, but the feelings of being a kid are still fresh like the scent of an apple pie cooling on a window sill. 

Emma alone made the trip worthwhile. I’ll always believe that … even when I forget that I’ll always believe it.

But I began noticing something odd on Day 1. I’m always the leader at Disney. For decades, I’ve roamed and explored rides and attractions new and old. My dementia mind somehow retained a treasure map of fun destinations and experiences. I often gave directions to folks in need, and I would joke, “I wonder if they realize they just got directions from someone living with dementia.”

I never steered them wrong, though. I had been proud that, even as other memories regressed, Disney remained imprinted on me like a tattoo. Yet, the last trip something was off. Memories of familiar spots and favored rides stayed out of focus … or nonexistent.

And then we got lunch the second day. I went to use the restroom. I emerged. I had no idea where I was. Not a clue! I looked around, trying to get my bearings, trying to find something that looked familiar. The signs were gibberish. Not a familiar or friendly face in the crowd. It felt like hours had passed.

From what I remember, I was stricken with a huge, huge panic attack. That’s when our friend saw me walking around like I didn’t know what I was doing, because I truly didn’t. She came and brought me back to our table.  

Now, Maureen was in line getting food. She saw me. She saw that I was disoriented. But we we’re talking seconds, not even minutes, and our friend was already standing behind me. Maureen didn’t abandon me, not that I ever feared she would. (She thinks I’m too handsome to leave me. Ha!)

But the shock of it all. The panic never subsided. My legs were like Jell-O. Next thing I knew – and I still remember very little of this – some Disney staff wanted to get me on a stretcher to haul me out of there. I refused, opting for a wheelchair instead. They were so kind. And I have to thank Disney wholeheartedly for getting us in a car and personally driving us back to the hotel, which is above and beyond what anyone might expect.

Decision-Making with Dementia

But, as I said, I won’t be going back. That’s a decision I’ve had to make, and it’s my decision alone. It’s a truly magical place, but that just magic isn’t enough anymore to put my loved ones through it. It’s too hard, and it’s getting potentially dangerous.

I don’t want to put myself into another episode like that. I still have so much love for Disney World, but being there, being amongst thousands of people, is just too much. (Maybe we’ll manage to sneak back one last time when my dementia is in its final stages, with no ability to wander, when the castle may spark a smile as something familiar and happy.)  

I’ve always been the one to initiate these life decisions. I decided to surrender my driver’s license. I agreed to allow Maureen to have control of the finances. That’s the mark of an ideal care-partner relationship. Not a lot of persons living with dementia have a care partner that would do that. Usually it’s a fight. And I pray, as you or your loved one walk this path with dementia, that you find some trusted, loving soul to pick up the slack where you begin to lack.

But you know me, I’m always looking at the bright side. It’s not an end, but another beginning. Now we get to try other more appropriate things we all can enjoy safely. As I always say, “I may have dementia, but dementia doesn’t have me!” And we definitely have more important dementia-advocacy work ahead.

Peace

-B

Dementia Meditations: Living on the Way to Dying

By Brian LeBlanc

I hate to be a downer. Anyone who truly knows me knows that – that I’m always looking to find the good, to find the laughter, to smile. Because we’re all “on the way out,” only at different stages. For me, with my Alzheimer’s disease and vascular dementia, my “way out” may be a little closer than yours.

And that’s OK. Complications from dementia kills 100 percent of us. Life, even for healthy people, kills 100% of us. So let’s focus on living on the way to dying.

I spent last weekend at (you guessed it) Disney World with my life partner/care partner, Maureen, our granddaughter, Emma, and some close friends. It’s like my 4 billionth time there (you think I’m exaggerating haha), and each time I find something new and exciting. Or perhaps we can find some humor in that it’s only new and exciting because I don’t remember it from before. And you can see from the picture that I was completely helpless against being covered in Mickey Mouse stickers, compliments of our 4 year old Granddaughter, Emma. 🤣

This was Emma’s first visit to Walt Disney World.

Now, THAT’S living! Enjoying loved ones. Enjoying a happy place. Living in the moment. Relishing the time I have left. And I would hope, as my dementia progresses, I’m able to return time and again – even when I can’t communicate or move around freely. I’ll remember Maureen and Emma and other loved ones and the place – even if not by name – as something loving and pleasant.

I have to admit, this time was a bit different.

I have gone through some brain changes since the last time I went to WDW. I still remembered certain attractions, but I couldn’t remember the names of them. That made me very sad.

The BIG BLOWOUT, something happened that never thought would happen.

We were having a great time, especially when we saw the joy and happiness on the face of Emma and her new found friend

Living and Dying with Dignity

We’ve make a lot about a life worth living and dying with dignity in our messaging for #WeAreDementiaStrong, Caregiver Support and Resources, A Bit of Brian’s Brilliance, and our new Podcast. It’s a process. There’s a lot of planning and organization. Thankfully, that’s what Maureen does professionally. But even with her expertise, there’s a lot of learning and adjusting along the long-and-winding road.

We do what’s needed to light the path where it’s most dim, to smooth out the rough areas, to understand complex realities. And I thank God for Maureen coordinating all those doctor appointments, medications, memory-care treatments and outside-the-box thinking. She knows listening to music for a bit can snap me from a fog. She knows when to tell me about upcoming events and appointments – and just as importantly when not to tell me – to avoid unnecessary anxiety. 

So as we prepare for the end, whenever that may be, I know we’ll have that life worth living … together.

A Friend in the End

I’ve said for so long that I want to have a living memorial service. I want music, drinks, Hawaiian shirts, laughter, more drinks, more music, and memories (even if they’re no longer mine). Let’s celebrate the good years, the bad years, the in-between years. I hope for a friend in the end – a bunch of friends would be even better!

But death … when it happens … will be a solemn occasion. Lots of people will congregate at the funeral home, waiting in line to see the person they once knew lying in the casket.

They may shed a tear or two, say a prayer, and then they walk away. As they join family and friends, they say things like, “Oh, he looks so good.” or “WOW, their last days must have been hard seeing all the makeup they used.” They may live out of town and didn’t visit or make any phone calls during the last weeks or months, so knowing the details of decline and what to expect would be quite impossible.

These are folks who say, “Well, I would’ve called but I didn’t think he would understand what I was saying. I would have been embarrassed.”

I think you get the picture. But know the presence of loved ones, even if we may not comprehend, is still welcome. It’s actually vital to our well-being.

As my Alzheimer’s progresses, I know it or a related illness will probably lead to my death. But I’m not going to live out the rest of my days waiting for my time to come to an end.

I WANT TO LIVE as much as I possibly can. I want to visit places I’ve never been but always wanted to. 

I want to LIVE like there is no tomorrow with no regrets.

Peace

-B

Dementia Advocacy: Honored to Receive Southern Gerontological Society Award 

By Brian LeBlanc

When I was diagnosed with Alzheimer’s disease in 2014, I could’ve never guessed the path ahead. Crazy. Amazing. Uncertain. Scary. Rewarding. All rolled into one. All I knew was that I felt a calling toward dementia advocacy and to help others on similar paths with education and resources. 

Fast-forward a few years, and I was absolutely honored, humbled and inspired to receive the Rhoda L. Jennings Distinguished Older Advocate Award from the Southern Gerontological Society. (OK, so Maureen jokes that seeing me “humbled” isn’t something everyone can say, but it’s true … 100% humbled to tears.)

The awards ceremony was held April 7 in Panama City, FL. The banquet hall was packed with so many wonderful people in the world of gerontology (a big, fancy word for aging), of which Alzheimer’s and dementia care is just a small part. So there were doctors, scientists and researchers, university professors and other educators, advocates, influencers – all spanning different disciplines and areas of expertise across the whole South. 

It was almost too much! Although, if you know me, the more people to chat with the better! (But again with my nasty habit of digressing.)

It was an honor to be considered a peer – even if just for a day – and to have my longtime efforts acknowledged toward Alzheimer’s and dementia advocacy and education. When I went up to receive the world, it was the best feeling ever to turn back around and see these great folks standing and applauding. 

And on a side note, I was so happy to be able to attend so soon after my recent pacemaker procedure.

Dementia Advocacy Through Outreach and Education

But more important than all that? The mission. #WeAreDementiaStrong has been steamrolling with the dementia advocacy mission. Maureen and I have always worked so hard to produce educational content, and we’ve been very blessed that so many organizations have offered us platforms to speak and/or write as guests. 

In the past 18 months, there’ve been some awesome developments:

  • #WeAreDementiaStrong now has 501(c)(3) status, allowing us to receive grants and donations to scale this awesome mission and reach more people.
  • Both #WeAreDementiaStrong and Caregiver Support and Resources, LLC now have new websites that are regularly updated with new informative content to help persons living with dementia and their care partners.
  • We’ve produced a new magazine –  “What To Do After A Dementia Diagnosis” – available in both downloadable PDF and hard-copy formats.
  • We’re launching the new #WeAreDementiaStrong podcast to reach greater audiences in the digital realm.
  • We’re producing new on-demand Continuing Education Credit opportunities with Inspired Memory Care for social workers, nurses, patient advocates and other professionals who serve roles in the continuum of dementia care.

And we’re happy to say, there are even more irons in the fire! More education. More partnerships. More avenues for community outreach. 

#WeAreDementiaStrong Is Here For YOU!

We walk this dementia path together. Maureen, the love of my life, is the absolute best care partner, life-care planner and Patient Advocate anyone can ask for. And we sincerely hope our lived experience – the good, the bad, the funny, the sad and the ugly – helps you in some small way.

We’re honored for the recognition. But there’s so much more work to do – while I still have breath in my lungs and perhaps a few healthy brain cells left to say what needs to be said.

Much love.

Peace,

-B

Pacemaker Update: ‘I’m In Love With Her and I Feel Fine’

By Brian LeBlanc

I owe you an update! 

If you haven’t seen from social media already, my recent pacemaker procedure went just fine. Of course, Maureen and I had some fears and trepidation heading into it. With my Alzheimer’s, vascular dementia and long history of heart problems, even the most routine of surgeries brought so many risks.

What would dementia have to do with a heart surgery? Well, going under hard-core anesthetics could have completely wiped – or at least severely diminished – what remains of my precious memories and cognitive abilities. Thankfully, they used a twilight sedation to basically knock me into a state of semi-consciousness. The doctor apparently told me, “You’ll be able to hear us, but you won’t feel anything or remember anything.” I joked, “Doc, you know I have Alzheimer’s, right? It’s not going to matter anyways.”

I’d like to think everyone had a good laugh at that. But in all seriousness, even the twilight sedation could have left my already deteriorating mind in a dreaded fog – indefinitely. 

And then … it was over. So quick! On and off, in and out, like a light. Next thing I knew, I was waking up with Maureen at my side with a little pacemaker in my chest. We were all pleasantly surprised that there were no residual “foggy” effects. We thank our lucky stars, the Lord, whomever for that! 

(I’m told, however, that I was a bit flirty with a couple cute nurses. Me? Brian LeBlanc? No way! Maureen and I just laugh it off as me being silly.) 

I was scheduled to stay overnight for observation, but I was able to go home THAT VERY DAY! Even though Maureen (my wonderful and beautiful life partner/care partner) would’ve been able to stay with me, I was so happy to be able to sleep that night in our own bed. 

So in a nutshell, I’m home and happy and feeling well! Like that Beatles song goes, “I’m in love with her and I feel fine. (𝅗𝅥𝅘𝅥𝅰Do do-do-do do-do do-do-do𝅘𝅥𝅲𝅘𝅥𝅮).” 

Up and ‘Running’ A Few Days Later

Well, not running. But walking. And, believe me, that’s a huge, HUGE, HUGE, HUGE improvement

My heart had left me so weak. My sleeping heart rate had been dropping as low as 24 beats per minute. That’s frighteningly low. While awake, I couldn’t take a normal breath. My breathing was very, very shallow. Even going from the bedroom to the kitchen – maybe 30, 35 feet tops – was exhausting. (And I thought it was bad back when I was 285 pounds!)

As I mentioned previously, this was my fifth heart procedure. Three stents and a triple bypass in recent years had me scared how much more my ticker could take. 

But I already feel great. Maureen and I have been walking a mile a day around our beautiful 55-and-older community right on Tampa Bay! There’s a little loop around the complex, and now we can join our friends and neighbors in walking around it. We jokingly call it the “Senior Olympics track.”

I’m absolutely astonished at medical science. It’s just this itty-bitty disc implanted in my chest with little wires running to my heart. Pacemakers are nothing new. They’re simple. But they’re an absolute miracle. This little thing is SO POWERFUL!

Will it cure or fix my damaged heart? Absolutely not. Will it reverse the effects of my Alzheimer’s disease and vascular dementia by restoring more blood flow to my brain? Nope. Maybe it’ll slow the progression. Probably not too much, if any. 

But it will restore some quality of life. After all, as I preach for our nonprofit #WeAreDementiaStrong and Maureen for Caregiver Support and Resources, we’re all entitled to a life worth living

Special Thanks!

Without Maureen, I would not be here today. That was true years ago. And I’m in awe every day that not only does she help me, but thousands of others as a Board-certified Patient Advocate and life-care planner

Maureen and I are always happy to share my health experiences – living with dementia and other related/unrelated complications – and our lived experience with daily struggles and triumphs. That’s been my call to educate and help others since being diagnosed in 2014, and now with Maureen in the mix we can accomplish SO MUCH MORE! 

But I don’t share for me. And we don’t share for us. We share for YOU! As a result, we’ve gathered so many supporters who’ve offered well-wishes, prayers and support before and after the procedure. Thank you – a million times!

We’d also love to thank Dr. Jeffrey Steinhoff and the wonderful staff at the HCA Florida Heart Institute in Largo, FL. They treated me (and us) so wonderfully.

Peace,

-B

New Pacemaker, New Dementia Uncertainties

By Brian LeBlanc

Life is complicated enough. Of course, my Alzheimer’s and vascular dementia adds to the chaos and uncertainty. And as much as I openly discuss living with dementia for the sake of helping others, the opportunity to talk other health issues doesn’t come up as much.

So here it is: I’m having a pacemaker put in Tuesday. I’m scared. I’m nervous. I’m stressed. I’m anxious. And although I trust being in good hands – for a routine procedure under skilled doctors and with my life partner/care partner Maureen close by – the uncertainties would keep anyone up at night.

In a nutshell, my heart isn’t functioning properly … again. My cardiologist has been studying me for some time now. While sleeping in recent weeks, the heart rate has dropped as low as 24 beats per minute. I have to admit, the cell phone app was pretty cool that Maureen used to measure as I slept with my finger over her camera. But a normal sleeping heart rate is between 40 and 60. Maureen and I joke that my paltry pace is “basically dead,” but it’s no laughing matter. 

It’s scary, frightening even. 

Blood flow to my brain suffers. I feel it, especially in the mornings. I’m already increasingly prone to brain fog. Now I must wake up and kick my mind into gear while it starves for blood and oxygen. Some days I can emerge from the fog. Other days I sit in a trapped mind indefinitely, wondering if this is the day the fog stays for good.

The pacemaker will help. We know this. It’ll strengthen my ticker and improve blood flow to the brain. Will it fix my dementia? Of course not. Will it clear the cold, damp fog? Maybe 8 years ago when I first received my Alzheimer’s diagnosis. We’re too far along the path now. The reality is it may only slow the progression – maybe, only maybe. 

It’s not just about dementia now, though. That only scratches the surface because my medical problems say so. (Don’t ask me why, but I’m vaguely remembering “Because Stone Cold Said So!” from pro wrestling.) Unfortunately, this heart issue is genetic, too, on my father’s side. 

Counting the days, so many other problems fill my mind. I can’t shake them. I’m already an anxious person. My Alzheimer’s makes that worse. That said, they are legit concerns. I wouldn’t be human if I didn’t have some fear of something going wrong. But if I do pass, as you know, we’re more than prepared for a death with dignity

Now, I’ve been under the knife before. (Seems like too many times to count.) I’ve had three heart stents and then a triple bypass in 2019 – because, why not? Moving on to lucky number 5, I guess! As we all know, even the best heart has so many beats in it. Can mine take any more probing and prodding? 

Maureen’s so good at calming the negative thoughts. She helps me backtrack and reminds me I’ve emerged fine from each of the previous surgeries. She reminds me a pacemaker thing these days is minimally invasive – essentially making a little pouch in my chest for the device and connecting some electrodes. 

But she’s honest. That’s what makes her such a great care partner. Anesthesia can cause delirium in even healthy older patients. Those with advancing stages of Alzheimer’s and dementia like mine? We may regress even harder. Thankfully, I’ll be under “twilight sedation” – a lighter form they just so happen to use for those wonderful colonoscopies. (Note to self: ask Maureen if I have one of those bad boys sometime soon.) 

At least I probably won’t wake up all groggy and nauseous. I digress.

Maureen says she wishes they would’ve announced the surgery on Monday, the day before. I understand why – less time worrying and brooding for me. I told her, “Sure, drop it on me the day before and send me into shock overload!” Imagine that conversation: “Oh, by the way, you’re going to have a surgical procedure on your heart tomorrow.” Ugh!

Back on a serious note, though, I’m so glad they’re letting Maureen stay with me that night. They’ll be observing me for a day or so. It’ll make me feel so much better to have her by my side, even if I don’t actually need her for anything. (I’m sure I will! And she says it’s the least she could do to help the staff deal with me!)

Tuesday is going to be a very long day. I know I’m going to want to go home. I’ll be OK. If not? I guess you’ll have to hear that from Maureen. Either way, I want you all to celebrate and be happy

– Brian

World Alzheimer’s Awareness Month

This information is from Alzheimer’s Disease International. Here is a link to their site. https://www.awarenessdays.com/awareness-days-calendar/world-alzheimers-day-2021/

For this year’s event, organisations and interested individuals can get involved by supporting awareness through contacting the Alzheimer’s association in their specific country. https://alz.org

Every September, people come together from all around the world to raise awareness and to challenge the stigma that persists around #dementia. September 2021 marks the 10th year of this vital global awareness raising campaign.

September 21st also marks World Alzheimer’s Day. For ADI, World Alzheimer’s Day typically coincides with the launch of our World Alzheimer Report. In 2021, our report will focus on diagnosis.

This year’s campaign will shine a light on the warning signs of dementia, encouraging people to seek out information, advice and support, as well as contacting the Alzheimer’s or dementia association in their country.  

It is only through a truly global effort that we can raise much needed awareness and challenge the stigma and misinformation that still surrounds dementia, and we are calling on everyone to do something during September, however small or large, through our campaign #Know DementiaKnowAlzheimers.

Learn more about this year’s theme

How do I get involved?

There are many ways to get involved with World Alzheimer’s Month, whether it be sharing messages on social media or attending events and activities put on by your local Alzheimer’s association. For this year’s event, organisations and interested individuals can get involved by supporting awareness through contacting the Alzheimer’s association in their specific country.

No action is too small.

We are calling on everyone, from individuals to large organisations, including every Alzheimer’s and dementia association globally, to support World Alzheimer’s Month by getting involved and sharing our messages on social media, alongside the campaign hashtags of #KnowDementia #KnowAlzheimers.

See event listings

It is only through a truly global effort that we can raise awareness and challenge the stigma that surrounds dementia.

Interested individuals can get involved by supporting awareness through contacting the Alzheimer’s association in their specific country.

In the U.S – https://alz.org Thanks in advance for doing what you can!

(I realize there are hundreds and hundreds of thousands of families who are dealing with the aftermath of Hurricane Ida. Please, concentrate on your families. All of you are in our prayers.

B

Until Next Time …

PEACE! ✌🏻🙏🏻

and yet . . . HERE WE ARE!

#AlzheimersDisease, #VascularDementia, #Type2Diabetes, as well as other ailments, is not exactly how I envisioned my older years. Yet, HERE I AM, BUT NOT GIVING UP! So many other Diseases now have cures, ways to slow progressions, and have ways to assist individuals to live a good life. However, WE DON’T have those things so HERE WE ARE, STILL WAITING PATIENTLY . . . VERY PATIENTLY.

For those of us who are Living with a Dementia-Related Illness, we’re not just standing by and letting time slip away. We raise awareness, talk to the newly diagnosed to give them some hope as to what the future looks like for them. We also assist others who are further on with their disease, many now living in a Care Community. Sadly, most are forgotten and that adds to their progression. Then there are the lucky individuals who have consistent visits from their family and friends. This helps to keeps their hopes, strength and clarity strong.

I remember seeing my parents (Mother with Alzheimer’s, Father with Vascular Dementia, just slipping away, day by day. I sure didn’t expect to receive my Alzheimer’s Diagnosis in OCT, 2014 and then attend my Mother’s Funeral in January, 2015. That was a very hard time, but, I knew I had to push on.

I knew I had to do something to call attention to, not just Alzheimer’s Disease, but also ALL Dementia-Related Illnesses. That is what led me to become a Dementia / Alzheimer’s International Advocate. I do this in honor of my Mother not only to keep her memory alive inside of me but to honor her life for being one of the the strongest individuals I knew.

Our Advocacy efforts during COVID-19 took away our face-to-face speaking opportunities but we were, however, thanks to technology, able to Advocate by utilizing ZOOM, Go To Meeting, and other online platforms. It wasn’t the same as being there in person but our messages were still delivered.

It will take something stronger than COVID-19 to stop us from Advocating. We will be taking the stage once again (virtually) to continue telling our stories, our accomplishments as well as our difficulties.

Just so you know, June is “ALZHEIMER’S and BRAIN AWARENESS MONTH.” You will probably be asked to post something purple on your timeline to assist us to make others aware. I hope I (WE) can count on YOU to post something PURPLE!

Until Next Time,
PEACE!
B

Yes, we are open and honest about the lives we live each day. We are not afraid to talk about the GOOD, the BAD and the UGLY. We don’t want anyone walking away from one of our presentations and just hear about the good. The BAD has to be shared so that everyone will walk away with a complete understanding.

We are fast approaching the month of June. June just happens to be To raise awareness of these cruel diseases, I would appreciate it if my friends could post put this on your page for today.Hold your finger anywhere on the message to copy and paste to your Timeline.💛

Another Why???

This is part of an article written by Donald Weever, Professor of Chemistry, Director of Krimbil Research Institute, at the University of Toronto.

As a researcher who studies Alzheimer’s disease and a neurologist who cares for people with Alzheimer’s, I share in the frustration, indeed anger, of people and families when I tell them that I have no cure to offer. Over the past year, scientists have tackled COVID-19, a previously unknown disease and within months developed effective new vaccines. Over that same time frame, the list of Alzheimer’s treatment failures got longer. Currently, the only approved drugs for Alzheimer’s merely alleviate some of the symptoms — partially and temporarily — but do not stop the disease from progressing.

————————————————

Brian’s Rant

So, HOW AND WHY is it that a vaccine could be manufactured for COVID-19, a brand new pandemic, very quickly BUT NOTHING for Alzheimer’s. How did THAT happen? WHY did that happen?

Why is it that Congress can pass bill after bill after bill, including passing bills to give themselves pay raises. I thought they were working to represent us. We voted them into office. Shouldn’t WE, THE PEOPLE be the ones to vote on their performance?

They get all the perks but those of us with Cognitive Impairments are living on Social SecurityDisability. We are still waiting for our pay raises!

We raise money, millions of dollars each year … each and every year, and we are given hope that something is on the horizon yet when all the totals are tallied, there’s just not enough money to do the research. That’s when we go to Congress and ask for more funds for research. They have enough to pass around. Then they have to vote and argue about how much of their budget are they willing to give for Alzheimer’s Research. Then they have to ask one another, “Will this affect us in any way?”

It seems they only care about their special interest groups and their top donors. Of course they have to have money for their wine and dine “meetings”. I’ve never received an invite for candidates in my district. I guess I’m not rich enough or connected with the right people. I can’t even speak with a member of Congress directly. We get passed over to someone on their staff. In the meantime, we still have Dementia-Related Illnesses that go untreated.

While I’m ranting, another thing that really makes no sense to me is, why are celebrities chosen to speak on behalf of us yet WE are NEVER asked to make a commercial although we are called … “THE EXPERTS”! You know the ones who live with these damn diseases each and every day! Why is that?

If I sound angry and frustrated, it’s because I am! I’ve lost 3 members of my family to Alzheimer’s and Vascular Dementia because there wasn’t any way to help them. I’ve been living with Alzheimer’s since October of 2014 and Vascular Dementia since 2019. My family and loved ones are going to lose me, but before that, I know I’m going to lose more friends and family members to these Dementia-Related Illnesses.

I’m tired of losing people!!!

I’m scared I will wake up with brain fog and it stays!

I haven’t even touched upon the stigmatization we face each and every day. Comments like, “you don’t look like you have Alzheimer’s, besides you’re too young!” That’s an old persons disease.”

Tell that to the families of the people they lost!

I was even told by a family member that I was faking my Alzheimer’s. WOW!!! Do you realize how difficult it would be to try to “remember” each day you wake up and remind yourself you have Alzheimer’s but some days you won’t remember … BECAUSE YOU HAVE ALZHEIMER’S!i

I know this is an angry post but dammit, I AM ANGRY!!! Why does the National Institute of Health have to beg for much needed funds for Dementia research. WHY!

Why are there panels of experts getting paid, who speak at conferences, symposiums, ZOOM Calls, or wherever they are asked to speak when the real experts are sitting at home trying to make financial ends meet.

I haven’t even touched upon the Family Care Partners who hold down a job and at the end of the day, care for their loved one(s). I know from first-hand experience, it’s a tough, emotional, unpaid job.

Look, I’m just a guy who is expressing his thoughts and emotions, but also asking a lot of questions. I’m also hoping that when it comes down to asking CONGRESS to pass new legislation to fund Alzheimer’s and all Dementia-Related Illnesses, they will do just that.

I hope that the work that went on to make a COVID-19 shot will be an example as to what can be done if EVERYONE works together.

I just HOPE that we will not have to continually ask the question … WHY?

Until next time…Peace!

Brian

#Alzheimers #Dementia #Why #Dementia-RelatedIllnesses #HOPE4AlzheimersCure #ENDALZ #HelpUS!

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Aphasia: ‘I Couldn’t Speak and I was Terrified’ By Brian LeBlanc

A Bit of Brian’s Brilliance Alzheimer’s March 17, 2021

I woke up Saturday morning just like any other day. Maureen, was up before me, of course, as she moves like a cheetah, completely opposite of me as I move like a sloth. I just take my sweet time.

The gentle waves of Tampa Bay just outside our bedroom window glistened in the morning sunlight. So relaxing and peaceful, a wonderful way to wake up and prepare my mind for the daily grind of functioning and remembering. I said something briefly to Maureen, although being a bit foggy, I can’t remember what it was.

I finally sat up and tried to say something, and … NOTHING. I couldn’t speak. I couldn’t think. I had my inner monologue. I could mouth words. They were right there on the tip of my tongue. But nothing. Silence. Pure silence. Frightening silence. Another attack of aphasia — thankfully a relatively infrequent consequence of my Alzheimer’s Disease and Vascular Dementia — It had now robbed me again of my ability to communicate verbally. I looked to Maureen in a panic. She could see by my eyes I was terrified. We were scheduled to do a Facebook Live for WeAre#DementiaStrong that morning, but that hardly mattered.

She promptly and politely canceled the event with a nice post explaining that I wasn’t feeling “well.” Not feeling “well” was an understatement. I was in full-blown crisis mode in my own head, and Maureen was doing her best to comfort me and coax me out of silence. That’s easier said than done.

Did I mention I’ve had several bouts with aphasia before?

For some, aphasia symptoms may include a total or partial inability to write or understand language. Some say words in the wrong order; others say sentences comprehensible only to themselves. My aphasia causes a complete loss of speech. No words can escape my lips, whatsoever. I may be able to mouth some words, but I rely mostly on gesturing and a text-to-speech app that allows me to communicate.
I often laugh, wishing Maureen could just read my mind, but I can’t even read my own mind most days. In the meantime, my Text to Speak app can speak for me, much to Maureen’s playful chagrin. It’s sometimes funny to have the app speak for me in a British accent or a woman’s voice. But whatever joy I get, joking around with the apps may bring, the sad reality of aphasia.

I said something briefly to Maureen earlier, although being a bit foggy, I can’t remember what it was. I finally sat up and tried to say something, and … NOTHING. I couldn’t speak. I could think. I had my inner monologue. I could mouth the words. They were right there on the tip of my tongue. But nothing. Silence. Pure silence.
Frightening silence. It was another attack of aphasia.

Not feeling “well” was an understatement. I was in full-blown crisis mode in my own head, and Maureen was doing her best to comfort me and coax me out of silence. That’s easier said than done.

A few years ago — I hardly remember this — I was unable to speak for several months. Another incident lasted three or four days.

The Uncertainty of Aphasia: When Will It End? has no answer. Will it end at all? I’ve entered each attack of aphasia facing the reality that whatever I said the moment or night before could be the last words I ever say. Maureen later told me, “The first thought that went through my head: ‘What if the last thing I ever hear you say is what you just said to me.”

Maureen went to the office and cried. Even as an expert in dementia care and life-care planning who walks the walk in professional and personal shoes, the random, uncontrollable and sometimes cruel effects of dementia are a lot to handle. “I was like ‘I can’t deal with this. I just can’t deal with this,’” she said. “I have plans in place if I couldn’t leave you alone at any point. I just wasn’t ready to put them into action.” I understand better than most that dementia is incredibly difficult for both the diagnosed person and their care partners.

She does a fantastic job as my care partner. She knows exactly what to do not just to keep me happy or distracted, but to address dementia symptoms and provide holistic relief. She’s a saint for taking my hand and leading me out of the fog and darkness, time and again.

Maureen sat me down on the couch with my headphones. I can vaguely recall tapping my toes to the beat. She says my lips moved with the lyrics. I was remembering, but still no voice.

Music is the perfect therapy tool. We remember music. We remember art. They realign and reset minds with ties to specific emotions and functions. I love all kinds of music, and I have some 4,800 songs on my phone. There’s scientific proof that music and art therapy can actually replace dementia drugs. (On that note, Maureen and I are proud to serve on the Board of Thriving4Life with Maureen serving as the Board Chair).

@Thriving4Life nonprofit promotes clinical art therapy and personalized music for elders and individuals. I can honesty say that music works. I hear the melodies the beats and the lyrics. I feel the emotion. It’s soothing, and it brings me back to reality. But that’s not what brought back my ability to speak

We tried to make the day as normal as possible. I watched a little TV. We went to the store. We even had a little argument, as couples often do, using my text-to-speech app. Maureen sat me down on the couch with my headphones. I can vaguely recall tapping my toes to the beat. She says my lips moved with the lyrics. I was remembering, but still no voice.
Music is the perfect therapy tool. We remember music. We remember art. They realign and reset our minds with ties to specific emotions and functions. I love all kinds of music, and I have some 4,800+ songs on my phone. There’s scientific proof that music and art therapy can actually replace dementia drugs.

Later, we sat together on the back patio, overlooking the water as the sun began to set. I managed to snap a great picture of some dolphins. I stood up and started my way inside and I tripped on the door jam. I went down hard, yelling a certain four-letter word. I’m not sure if it was the jolt or something else. All I heard was, the expletive I yelled and Maureen saying, “YOU TALKED! YOU SPOKE!

Thankfully, this round of aphasia lasted less than 24 hours. Since that first time, I’ve always tried to speak first thing in the morning after regaining the ability to speak. That’s my test. That fear never loosens its grip now.

Communicating with Aphasia and Dementia.

Last week, Maureen wrote a terrific blog about communicating with loved ones in certain stages of dementia. Coincidentally, we ended up living the extreme of that reality, however briefly, that very weekend.
“Trust me, Brian LeBlanc will always try to find a way to communicate,” Maureen said. And she’s right. Communication is my life. It’s who I was before dementia as a Marketing and PR professional. It’s still who I am now.
Thankfully, I’m always prepared to use gestures, facial expressions (and of course, my text to speech app.

Later that night, Maureen and I were joking and talking when  she said, ‘You know, I kind of wish you didn’t talk anymore.’ We had a good laugh.

As I’ve said since being diagnosed with Alzheimer’s Disease in 2014,

 “I have Alzheimer’s, but it doesn’t have me!”

 http://www.caregiversupportandresources.com/aphasia-i-couldnt-speak/

Until Next Time . . .
PEACE!
Brian

Being Strong

The other day, I was having a rough time. 2 nights earlier, I started to have my hallucination visitors again and that, in addition to disturbing my sleep, it also escorts a butt-load of anxiousness.

Later that morning, Maureen found me in my chair uncontrollably crying. From what I can remember, I just kept saying, “I HATE THIS SH*T, I HATE THIS SH*T. HOW MUCH MORE CAN I TAKE?” She consoled me with hugs and positive words.

She then went into her office and came back with something in her hand. It was a little sign that read . . .
YOU NEVER KNOW HOW STRONG YOU ARE UNTIL BEING STRONG IS THE ONLY CHOICE YOU HAVE.
She put it on the corner of the TV table where I would see it morning, noon and night. (She’s crafty like that.)

Well, it worked. Even right now as I write this post, when I can’t think of the right word or the word I want to use but forget how to spell it, or how to use the settings on my laptop. (I must admit, I took a photo of the sign to use in this post but I couldn’t remember how to add it.)

I may have told you this before so if I did, please forgive me for repeating myself. Living With a Dementia-Related Illness that has no cure, no way to stop progression and just takes little pieces of your brain and just throws it away, REALLY SUCKS!
However, what I have come to realize is MY strength. It’s not a physical strength, it’s a strength that comes from within, a strength that before now I hadn’t fully realized.

I can now fully understand how strong my Mother was when she went through her Alzheimer’s Journey. Even when she lost her ability to speak, she tried her damnedest to get her message across by humming music or using her eyes and her smile. She was a very strong woman all her life and she never stopped being strong for, as the sign says, “Being Strong” for it was the ONLY choice she had.

Who knew a little sign could have such a huge impact?
Well, I do!

Until Next Time . . .
PEACE
B