We Are Dementia Strong

Our Story From the Perspectives of the Person Living with a Dementia Related Illness and the Care Partner!

Why I Advocate for Alzheimer’s

Why I Advocate for Alzheimer’s

One of the main reasons I Advocate for Alzheimer’s is because of the 4 people in my life (my Grandfather, my wife’s Grandmother, my Mother and Father) who suffered and died from Alzheimer’s and Dementia.
Why did they have to suffer and die?

According to the facts from ww.alz.org

  • It’s the only cause of death in the Top 10 in America that cannot be prevented, cured or slowed
  • 1 in 3 die with Alzheimer’s or another dementia
  • Alzheimer’s disease is the 6th leading cause of death in the United States
  • THIS IS A BIGGIE . . . ONLY 45% OF PEOPLE WITH ALZHEIMER’s DISEASE, OR THEIR CAREGIVERS, REPORT BEING TOLD OF THEIR DIAGNOSIS.  REALLY???  REALLY??????
  • MORE THAN 90% OF PEOPLE WITH THE FOUR MOST COMMON TYPES OF CANCER HAVE BEEN TOLD OF THEIR DIAGNOSIS.
  • In 2015, Alzheimer’s and other Dementia’s will cost the nation $226 BILLION.
  • By 2050, these costs could rise as high as $1.1 TRILLION

Not being told that you have a disease that will kill you is unacceptable. In a CNN cover story, it was reported that, “Doctors are sidestepping this tough conversation. But why? That’s been studied too, and the reasons doctors give range from diagnostic uncertainty and fear of causing emotional distress to time constraints, lack of support, and stigma.”

I think back to when I was sitting in my Neurologist’s office and he was going on and on about this and that and I could tell he was beating around the bush, so me being me, I stopped him and asked, “DO I HAVE ALZHEIMER’S?” He paused and quietly said “YES!” I know it was uncomfortable for him to tell me but that’s why he’s a Doctor. He’s going to have t tell his patients unpleasant things every now and then. If you can’t do that, then take off the white coat, turn in your stethoscope and go do something else.

Another reason why people with Alzheimer’s disease suffer and die is because Alzheimer’s disease is severely underfunded. I wanted to know why so I did some research. I know this is just the tip of the iceberg but here are some of my findings. (each link is clickable if you want to read)

 Seth Rogen Gets Serious To Fight ‘Ridiculously Underfunded’ Alzheimer’s Disease
 There Is No Cure And Little Money To Solve Alzheimer’s Disease
 Alzheimer’s Funding Lags Behind Other Diseases
 Dementia research underfunded, former Health Minister claims
 Alzheimer’s Is Expensive, Deadly and Growing. So Where’s the Research Money?
 Alzheimer’s Deaths Vastly Under-Reported, Study Says

In the last article, which was published in Newsweek, it states, “Alzheimer’s is a fatal disease. Over 5 million people in the U.S. currently live with Alzheimer’s, and most have a life expectancy of 3 to 10 years after diagnosis. With that number in mind, how were only 83,494 deaths attributed to Alzheimer’s in 2010? The numbers just don’t add up.”

Did somebody flunk math? Who’s minding the Disease funding store?

If I sound like I’m pissed, it’s because I am. I cannot believe this country sends billions and billions of dollars to other countries for research, development and care for their diseases while we suffer and die because there’s not enough money to go around for the home team.

Now, I have Alzheimer’s. If this disease would have been acknowledged and funded like other diseases, there might be a glimmer of hope for me. Since that didn’t happen, my future is bleak. At 54 years of age, I never thought I would be facing the end of my life, but the end is not here yet.

Until that time and as long as I am able, I will do everything within my power to raise awareness and to raise funds for the future generations of people with Alzheimer’s. That means for all of you that read this, I’ll be hitting you up for money. But don’t worry, I won’t hassle you . . . too much.  😉

Until next time,

PEACE!

Fog: It’s Not Just a Weather Condition

Fog: It’s Not Just a Weather Condition

I’m frequently asked, “how have you been” or “how are you feeling?” or “how was your day?” My most frequent response is a little foggy.”

In an effort to help everyone understand what I am trying to say, I consulted www.merriam-webster.com and looked up fog. This is what I found:

noun \ˈfg, fäg\

: many small drops of water floating in the air above the ground, the sea, etc.

: a state of mental confusion

The second definition, as you may have guessed, is the one that I refer to.

To give you an example, imagine driving down the road. Fog has set in and visibility is obstructed. You can’t see much, you’re cautious of your surroundings because of the dense fog. All of a sudden, you break through to a clearing. You can see all around you. Your vision is clear and you can proceed as normal.

Fortunately, we all don’t have to drive in the fog every day but imagine having that fog in your head, every day, never knowing when it will roll in.
You get up to get something, the fog rolls in, preventing you from remembering where you are or why you’re there.
You’re in the middle of a conversation, the fog rolls in so thick it turns to night, blocking out every thought, rendering you speechless.
You’re driving to a very familiar place, again the fog rolls in and you have no idea where you are. You have to rely on your GPS to tell you where to go.

This isn’t just sporadic or a one-time event. This is every day, several times a day, a typical day. Sometimes the fog is thicker, sometimes less, but it’s ALWAYS there. It’s my Alzheimer’s journey.

So, if you ask me how I’m doing and my answer is, Foggy with a hope of sunshine,” you’ll know what I mean. I remain positive and hopeful that the sunshine will continue to show up and burn away the fog.

Thanks for reading. Hope your day is everything you want and need it to be.

Peace!

I’m Still Me!

I’m Still Me!

I may have worked with you at one time or knew you through work, but now I can’t remember your name. I know your face and I know I know you, so please don’t be insulted if I ask you your name. I’m simply trying to remember.

We may have been friends from years gone by or even as recent as a few years ago and I may have trouble recalling some of the good and funny times we shared. Feel free to recall those times with me. I may not remember all the details but it would be nice to recall those memories.

When we have a conversation, you may discover that I now stutter. I haven’t stuttered at any point in my life and those of you that know me can only imagine how much this bothers me. I’m proud of the TV shows, commercials and radio programs I have been involved with and I’m thankful for those times. I’m just glad the stuttering waited until now.

I may not remember something you just told me 5 or 10 minutes ago. Please don’t think it’s because I didn’t find it interesting or that I don’t care. My short term memory is not what it used to be so please don’t take it personally if I ask you something that pertains to what you just told me.

I don’t play my guitar or sing anymore. I’ve lost that passion I once had but I’m working on getting it back. It’s said that music plays a very big part in bringing back certain memories to people with Alzheimer’s. I still love music and I still listen to it but it doesn’t hold a candle to creating music. I’ll let you know how that goes.

The reason I’m sharing all of this with you is because at this point, if you see me or talk to me, I may not be the person you remember, but, “I’m Still Me!” 

  • Please don’t be afraid to joke with me. I still love to laugh.
  • Talk about old times.
  • Give me a hard time and mercilessly tease me (you know who you are! lol) or even send me or tell me Alzheimer’s jokes. I have found that humor lessens the blow.
    • Just so you know, some of the best and funniest jokes I hear are from the online groups I belong to. We may not be able to remember the jokes we tell one another but we at least have that funny moment we share with one another. 
    • no matter the case, LAUGH WITH, NOT AT!

Lastly and most important, although I have Alzheimer’s, inside “I’m Still Me!”
Treat me like you always have.
As a side note, Alzheimer’s is one of the most misunderstood disease. If you want to know about it, ask me or go to http://www.alz.org.

. . . Until Next time

Still Alice – A MUST SEE!!!

Still Alice – A MUST SEE!!!

Dallas News reporter Jeffery Weiss published an article about the Movie, “Still Alice” and said,
“There’s a new movie out that’s getting good reviews. ‘Still Alice’ stars Julianne Moore, a fine actor who’s been nominated for an Oscar in the role. It’s the story of a brilliant, successful woman who develops dementia. No less than Jon Stewart says it captures the loss and descent brilliantly.”

He then goes on to list the reason why he won’t see the movie . . . all because of a book he read 40 years earlier, Death Be Not Proud by John Gunther. He writes, “It was also the most terrifying thing I’ve ever read. Part of the strength of the book, why it was chosen for teenagers, is how clearly Johnny is portrayed. He was pretty much everything I aspired to be, so of course I identified with him. Which made the suffering that much more real.
Too real. For several years, any time I got a headache a little part of me whispered “Your turn!”

I read that book also. Yes, it was a tragic story about a young boy who develops a brain tumor and then dies, but then again, there are many books (I hope he has never read a Nicholas Sparks novel) that deal with similar stories. Be it truth or fiction, you can’t just bury your head in the sand. It happens in real life and there’s nothing you can do about it except deal with it.

I equate burying your head in the sand as to turning your back on knowledge. Yes, there are things in life that we DON’T want to hear about or see. I didn’t want to see my Mother and Grandfather struggle with Alzheimer’s. I don’t like looking in the mirror seeing, “Early Onset Alzheimer’s” written across my forehead (it’s not really written on my forehead, but it may as well be) but it’s there. I wish I could be like Mr. Weiss and just say, “I’m not going to deal with this today because it may make me uncomfortable.” Unfortunately I can’t.

What I can do is deal with my EOAD, speak with and support those who are also suffering from this horrible disease, share my knowledge of the latest information I come across and Live in the Moment. Each day I make memories with my family. I try to remain as upbeat and positive as I can for those are the memories I want them to recall. I don’t want them to see the dark side. As hard as I try, it does come out in their presence but they NEVER, EVER turn their back on me.

As soon as “Still Alice” comes to a theater in my area, I will probably be the first in line to get a ticket. Yes, I want to see the extraordinary performance of Julianne Moore but I also want to see how the movie portrays Alice’s future. It just may help in my own future.

To Jeffrey Weiss from the Dallas News, “for those of us who have Early Onset Alzheimer’s Disease, we wish we had the option of not seeing the things we didn’t want to see, not feeling the things we feel and not being scared shitless about our future. Sooner or later, your head will have to come out of the sand so you can breathe. When you do, instead of trying to escape from all things you are afraid of, learn from them and then share that knowledge. You never know who you are going to help.”

Until next time . . . .

I Can’t Fix Things Anymore

I Can’t Fix Things Anymore

I read a facebook post recently that I found clarifyingly interesting. A wife was talking about her husband, who has Alzheimer’s, and about the frustration he goes through when trying to fix things. It got me thinking and I realized, I was right there with him.

I was never a builder or craftsman but I used to be a really good technical guy. I could figure out computer issues, easily learn computer programs and program technical thigamabobs. I could also put things together pretty easily, if I had directions, but not without frustration, not without screws and nuts leftover and not without lots and lots of cursing, but I still put them together and they are still standing. I am proud of that fact.

Things have changed now that I have Alzheimer’s. Yes, I still try to put things together and program technical thigamabobs and learn new computer programs but, I’m no longer able to do them without assistance. That’s a hard pill to swallow. At first, I felt defeated. Afterall, I’m the husband, the dad, the one they look to when something goes wrong. Now that I’m no longer that guy, I felt as if part of me died.

So, I did what any pig-headed man would do, I continued to try to put things together and fix things. I threw things in frustration and then cursed them. I read, re-read and read again instructions that may as well have been written in Klingon. Instead of fixing things and putting things together, I made them worse. Instead of walking away with a feeling of accomplishment and pride, I slithered away in tears. It did me no good to continue down that road and my family certainly didn’t need to be subjected to that.

So, I went from a Do-er to a Helper. I now listen to them. What I mean by that is, my instinct still says, “I’m the fix it guy. I can do this!” but my wife says, “why don’t you let me help you with that?” or “You should get one of the kids to help you.” They know and understand I still want to be an integral part of this family. They know my frustrations better than anyone. They know what I want to do but they also know that I have limitations and they accept and embrace those limitations. Instead of excluding me, they include me. Sure, they do most of the work and reading of instructions, but I’m right there with them.

So yeah, I can’t fix things anymore. Alzheimer’s has taken that away from me, BUT . . . it has given something in return. It taught me that it’s OK to ask for help. It’s OK to admit to myself that there are certain things I can’t do anymore or don’t remember how to do anymore. It has brought the four of us closer than ever before. It’s not without frustration, sadness, tears and yes, still some cursing (all on my part, by the way, lol) but we work together, as a team.

I have the best family I could ever ask for and for that, I don’t care if I can’t fix anything anymore.

Until next time . . .

One Battle Over, One Just Beginning

Yesterday, we laid my Mother to rest. Her battle with Alzheimer’s was over and she could, once again, think with a clear mind and live out her eternity in peace.

It’s always hard  to say good-bye to a loved one. In the past, I’ve had to say good-bye to Friends, Grandparents, Aunts and Uncles, Cousins, a Niece and Nephew, and my Father. I knew it would be hard to say good-bye to my Mother, I just didn’t know “HOW” hard.

Previous to her physical departure, Alzheimer’s took her memory, her speech and her ability to take care of herself. A stroke led to her not being able to swallow liquids or food. This led to her final demise. “Garden of Memories” did an outstanding job of erasing the effects Alzheimer’s had on my Mother. My sister and sister-in-law dressed her in clothes they knew she would have loved. She was once again, in death, restored to her lady-like stature. Although that was beautiful, I was not ready for the amount of tears that would flow from within me.

You see, not only do my Mother and I share a “Mother/Son Bond,” we also share Alzheimer’s.

Riding to the funeral home, during the visitation, praying during mass and finally saying good-bye at the gravesite, I couldn’t help but think, “What will my Alzheimer’s journey be like and how will it end?”

Ever since I was diagnosed with Early Onset Alzheimer’s I started researching this horrible disease. One thing that stood out is that it is one of the most under-funded, under researched diseases. I know there are some medications on the market right now that may assist in “slowing the progress” of Alzheimer’s but there is no cure. If a cure is discovered, by the time it’s available for consumers, the cost will probably be astronomical and will be too late to do me any good.

I keep telling my self I can’t worry about what will be, so I’m committing myself to concentrate on the here and now. I have a family that loves me and cares deeply about my well being. I want to give them all the love I can possibly give. I want to make good, positive memories with them, that, although I will forget in the future, they will retain. I want to spend more time with my brothers and sister and their families to create memories with them and for them. I want my friends to know how much I care for them, what their friendship means to me and how much I appreciate them.

I will fight this fight as long as I possibly can.

This is such a cruel disease. I know there’s a reason for everything, but I can’t help question it’s existence or what purpose it serves. That goes for every disease. I know I’ll never know or understand, but that won’t stop me from wondering. Until that time, I will be an Advocate for Alzheimer’s. I will bring attention to this disease, I will do my best to raise money for this disease and hope and pray for a cure.

Mom, thank you for a lifetime of memories. I cherish each and every one and I will hold onto them as long as I can. No matter what my future holds, you will always be in my heart!

10 Warning Signs of Alzheimer’s

10 Warning Signs of Alzheimer’s

I came across this blog this morning and I felt it was important to share.

I am asked all the time, “How did you know you had Early Onset Alzheimer’s?”, “What made you go see a Doctor?”.
Well, I could answer those questions in my own words but since someone already did that, I will let you read part of the blog.

10 warning signs of Alzheimer’s disease

1. Memory loss that affects daily functioning: Most people forget things like names occasionally and recall them later; a person with Alzheimer’s may forget things more often and not remember them, especially more recent occurrences.

2. Difficulty performing familiar tasks: A person with Alzheimer’s may have trouble with long-familiar tasks, such as preparing a meal.

3. Problems with language: Everyone has trouble finding the right word on occasion; someone with Alzheimer’s may forget simple words or substitute words, making sentences difficult to understand.

4. Disorientation of time and place: It’s normal to forget the day of the week or one’s destination — for a moment. With Alzheimer’s, a person can become lost on their own street, not knowing how they got there or how to get home.

5. Poor or decreased judgment: A person with Alzheimer’s disease may wear heavy clothing on a hot day, for instance.

6. Problems with abstract thinking: People may sometimes have difficulty balancing a cheque book, for instance; someone with Alzheimer’s may have significant difficulty with such tasks, possibly not recognizing what numbers in the cheque book mean.

7. Misplacing objects: Anyone can temporarily misplace a wallet or keys; someone with Alzheimer’s may put items in inappropriate places: an iron in the freezer or a wristwatch in the sugar bowl.

8. Change in mood and behaviour: While everyone experiences sadness and other moods on occasion, those with Alzheimer’s can exhibit mood swings — from calm to tears to anger — for no apparent reason.

9. Change in personality: A person with Alzheimer’s can become confused, suspicious or withdrawn. Apathy, fearfulness or acting out of character may also occur.

10. Loss of initiative: Temporary loss of interest in activities can occur in most people; someone with Alzheimer’s may become passive, and require cues and prompting to become involved.

Source: Alzheimer Society of Canada.
Online: www.alzheimer.ca/en

If you are exhibiting any of these signs or if your family recognizes any of these signs, it is in your best interest to et checked.

Sleep Apnea and Alzheimer’s

Sleep Apnea and Alzheimer’s

When I was still in the diagnosis stage of why I was losing my short term memory, I was questioned about my sleep patterns. Naturally I asked, “what did my sleep patterns have to do with short term memory loss?” My Neurologist informed me, “sleep apnea may increase the risk of Alzheimer’s disease.” So, I had the sleep study and it was determined that I had moderate sleep apnea.

First of all, if you are not familiar with Sleep Apnea, here’s how the Mayo Clinic defines it:

Sleep apnea is a potentially serious sleep disorder in which breathing repeatedly stops and starts. You may have sleep apnea if you snore loudly and you feel tired even after a full night’s sleep.

  1. There are two main types of sleep apnea:

    1. Obstructive sleep apnea, the more common form that occurs when throat muscles relax
    2. Central sleep apnea, which occurs when your brain doesn’t send proper signals to the muscles that control breathing

The Mayo Clinic suggests: If you think you might have sleep apnea, see your doctor. Treatment is necessary to avoid heart problems and other complications.

The study I underwent concluded that I would stop breathing on an average of 15-17 times per hour. I didn’t find out how long these periods of non breathing were but, I did the math. For an average of 8 hours of sleep, I was not breathing 168 times. I don’t know about you but, that is was quite alarming to me.

Now this does not say “sleep apnea = Alzheimer’s.” There are a lot of ingredients that go into the Alzheimer’s gumbo pot, however, according to the Alzheimer’s Site

  • “A person experiencing sleep disturbances should have a thorough medical exam to identify any treatable illnesses that may be contributing to the problem. Examples of conditions that can make sleep problems worse include:
    1. Depression
    2. Restless legs syndrome, a disorder in which unpleasant “crawling” or “tingling” sensations in the legs cause an overwhelming urge to move them
    3. Sleep apnea, an abnormal breathing pattern in which people briefly stop breathing many times a night, resulting in poor sleep quality

Talk to your husband, wife, boyfriend, girlfriend, partner, etc. and ask them if they notice anything about your sleep patterns. They may notice things that are not noticeable to you and just may save you from a health issue down the line.

I’ll see you next time . . .

Why Tell Everyone about my Alzheimer’s

Why Tell Everyone about my Alzheimer’s

I’ve been asked the question, “Why tell people that you have Alzheimer’s?”  I guess that questions crossed my mind, but to be honest with you, I didn’t care. No one turned their back on my Mom when she was diagnosed with Alzheimer’s. No one treated my Dad any different when it was determined he had Dementia. So I figured, why should I worry?

I did it so it would be easier for me to accept that fact that I have Early Onset Alzheimer’s. It’s not going away and is now a part of me that I might as well accept.

Deciding who to tell was something totally different. I didn’t blast it out on Facebook for the world to see. I picked and chose who I wanted to share this information with. Every now and then, you will see some of my posts on Facebook about Alzheimer’s but not about me having the disease. I know that sooner or later, word will travel and that is fine with me. Until that time. you are amongst my “Chosen Ones.” Is that too bold? Maybe I’ll make up a new name later but that will have to do for now.  🙂

If you have any questions about Early Onset Alzheimer’s, please don’t be afraid to ask. I have found the more people ask, the more I learn. You can post your questions here in the comments section or you can email me @thebrianleblanc@gmail.com or message me on Facebook. I want to gather as much information as I can (and that I can retain) to help myself, but being able to to help someone else would be the ultimate gift.

That’s about all I have for now. If you want, be sure to follow my blog page. There is a little + key you can press and you will be alerted each time I post something new.

Take care,

B

Recognizing Early Onset Alzheimer’s

Recognizing Early Onset Alzheimer’s

If you haven’t read the blog before this one, you may want to read that one first.

First of all, thanks for the outpouring of support. It’s appreciated more than you know.
Second, thanks to those of you who have sent me information and articles about Alzheimer’s.

My sister-in-law Jessica sent me an article that was recently published in Good Housekeeping.
It’s entitled, “My Husband Was Diagnosed with With Alzheimer’s – at 36”.  Here’s the link to the article. http://www.goodhousekeeping.com/health/womens-health/early-onset-alzheimers

While reading the article, I recognized a lot of what I have been going through. According to Shannon and Asheton, I’ve been exhibiting signs for the past 3 years. I have only recently noticed the signs myself especially while driving.

When driving to locations that are very familiar to me, I tend to lose my way. It is quite embarrassing as well as frustrating. I used to get very anxious and call Shannon in a panic. Now, I use the GPS on my phone to get me from point A to point B. I don’t do it all the time because I still want to use my brain power. Yes, I still get lost and it takes me an incredibly long time to finally figure out where I am supposed to be going, but when I do, it is quite a thrill.
Yeah, it’s the little things that mean the most!

I have exhibited many other signs like repeating the same story or conversation over and over again, repeatedly asking the same questions, forgetting things that were just told to me, forgetting how to cook something I have been preparing for many years, etc… There are more but I won’t bore you with the details.

If you’re interested in finding out more, here’s a link you may find interesting about Early Onset Alzheimer’s.
http://www.alz.org/alzheimers_disease_early_onset.asp#who

The most glaring discovery about Alzheimer’s is it’s no longer an older generation disease.

Here’s hoping you will have an amazing day and an even better tomorrow!

B

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