The “IS” is Now

At this time of year, most everyone starts looking back at the past 12 months with wonder as to where the time has gone. Please don’t think I’m more confused than I already am. I know it’s Christmas Eve and not New Year’s Eve. I’m just getting a jump start.

You may be thinking:
Were my New Year’s Resolutions successfully carried out?
Were plans, made early in the year, brought to fruition?
Did I become the better person I set out to be?
Why didn’t I start that Christmas Saving account like I planned?

It’s the natural thing to do. It helps to look at the un-dones and positively plan for the future, a future we don’t know.

As for me, Alzheimer’s has taken away my abilities to look at the immediate past with clarity. I’m not saying that for you to feel sorry for me, I’m just letting you know. I can see some of the past but most of it is guesswork.

The phrase, “You cannot change your past” comes to mind so there’s really no use in looking back or dwelling upon the “what if’s!”
So I look for the postive’s in having Alzheimer’s. It helps get me through each day. You see, the only thing I can do at this point is to “Live in the Moment” and enjoy those moments to the best of my ability.

So, on this Christmas Eve . . .
I will not look to the past for accomplishments or miscues
I will not look to the future for I have no idea what waits for me

I will look at the beautiful face of the woman who has pledged her love and life to me and be so very, unbeleievably thankful she has put up with me through all of this.

I will look at the faces of my 21 and 15 young adult children who each and every day day give me not only their love, but their support, kindness and patience.

I will think about my 28 year old son and the young man he has turned out to be.

I will think about the little, tiny Yorkie-Chihuahua fur ball named Dallas who has made such a difference in my every day life.

I guess not having the ability to look at the past makes it easier to look at the here and now. The past is what we had, the present is what we have now and the future, well, there’s no certainty as to what we will have.

So, if you like, you can join me on this Christmas Eve, not thinking about what was, or thinking about what will be, but instead about what is. The “IS” is right here, right now.
Enjoy It . . . Experience It!
The “IS” is now!

Until Next Time,
PEACE and Merry Christmas!

B

 

 

The One Good Thing

The one good thing, if there is such a thing, about having Early-Onset Alzheimer’s is the long term memories are still intact. They pop up at any time, day or night, with no rhyme or reason. They are just there like an old friend, ready to reminisce and bring a smile.

At 55 years old, I have a lot of memories floating around in my head. Being it’s the Christmas season, those memories are of growing up with my brothers and sister, racing to the Christmas Tree on Christmas morning to see what Santa brought us. Mag_transRED_AM-62_webI’ll never forget my first transistor radio. 1968. It was red with a black, leather covering. I asked my brothers what station I should listen to, they told me and the first song I heard was “Sky Pilot” by The Animals.
My Mom tried to suggest I listen to talk radio. lol  I stuck with the music!

A few years later, I got a green bike with green, metallic banana seat. It seems all the kids in the neighborhood got new bikes that year and despite the cold wet weather, we had to go outside and ride them.

Another year was walkie-talkies.

I remember my favorite toy of all time…a milk truck. When the door opened, a milkman swung out holding a bottle of milk. It was made of cast iron. My sister, whom I love and adore with all my heart, sort of bent my milk truck. I won’t say how, but the little milkman never swung out the door again!  😦

Then there was the Christmas, once we were older, my oldest brother got us all silk underwear. We still don’t know why, but it was a great gift!!!!

After a number of years, I started gaining weight . . . a lot of weight, enough to take on the role of playing Santa Claus. That was a lot of fun but putting on that Santa suit in the humid Louisiana December weather was no picnic. I lost about 10 lbs inside that suit.  🙂

My Mom loved the Christmas Season and she made it so special. Right after Thanksgiving (you remember when there were no Christmas decorations

IMG_2291 (Edited)
This is a pic I took of one of the actual albums my Mom used to listen to. They were distributed by GoodYear and Firestone 

displayed BEFORE Thanksgiving)

she would start playing her Christmas albums, singing along with Andy Williams, Johnny Mathis, Mahalia Jackson, Barbra Streisand, Steve Lawrence and Eydie Gourme, as my Dad climbed up in the attic, cursing, yelling, hitting his head while getting the Christmas decorations down.

 

On Christmas Day, Mom would break out the “once a year Christmas China.” She had just enough for the adults while the kids ate at the kids table, eating off the everyday plastic plates. I felt so grown up when I was not only allowed to eat off the Christmas China but to sit at the grown-up table. The food actually tasted better! But, enough about me.

We have a saying in our family that no holiday or family get-together was complete unless my Dad (who was known for his temper) didn’t get pissed off at someone or something.

One Christmas, I don’t remember the exact year, but it was probably in the 80’s, my Dad, as usual, got pissed off at something. One by one, my brothers (I have 3) their wives and my sister all headed for the smoking spot (the front porch) to have our “after dinner smoke.” Of course, the topic of conversation turned to the times Dad would get pissed off. We laughed and laughed and were having the best time when the front door opened and my Mom came outside. We all quieted down and looked at her. She looked at all of us with such a serious look on her face and said, “I sure wish I smoked, but I gotta go back in there!”
We lost it. She started laughing. As she walked back inside, she turned around and said, “oh sure, y’all just stay out here and laugh!” with a smirk on her face, which made us laugh even harder. That was my Mom.

She had such a great sense of humor. I guess she had to, being a stay-at-home Mom, having 5 kids in a 10-year span. She had to find the humor in anything she could. In my opinion, she loved Christmas the most. She knew the family would all be together and she would fix our favorite things. She got joy out of that.

Although Alzheimer’s affected her memories and all else that came with it over the last 10-15 years of her life, I hope some of her long-term memories were still there. I hope they brought a smile and a warmth to her heart.

Being the youngest child, my Mom and I shared a lot of things. Music is my favorite . . . Alzheimer’s is my least favorite, but I like to think that my Mom, being my Mom, somehow knew I would be the one to share her Alzheimer’s so she showed me how to live with it gracefully. When it gets tough, and it does (I’m not always the happy person you see in pictures and unfortunately, I do have a bit of my Dad in me that comes out every once in a while) I feel her with me, calming me down.

My Mom also collected bells, little decorative bells, some bigger bells, she just liked them.01043e4af1cb1845977d37e9119f4c5ba7a4af24da

Thanks to my wife, the bells continue to ring. Since we have a love for
Disney, she combined our interests and gets Disney Bells every year for the tree. I can’t tell you what that means to me. I hope that tradition continues within my family for years to come.

This will be the first Christmas Mom will not be of this earth. My Dad passed away 5 years ago so at least they are together again. I just hope he has learned to calm down a bit. But if not, I’m sure Mom will take a walk out to the front porch, breathe in a breath of fresh air and go right back in to calm him down.

Merry Christmas, Mom . . . and you too Dad!  🙂

This is from one of my Mom’s Christmas albums:
Doris Day –  Silver Bells

ENJOY and have a Very, Merry Christmas!

 

Happy Thanksgiving

Thanksgiving. A day where we pause for a moment to give thanks. Give thanks for what? We give thanks for everything big and small, important and insignificant. We give thanks for life!

What that life is, is totally up to you!

If you determine your quality of life, based upon whether you’re rich, poor, healthy, ill or somewhere in between, your rating scale is off. Money cannot and does not buy happiness, it buys material things. If material things make you happy, and you surround yourself with these things, then fine. However, a materialistic world often blurs the realism of life. Just remember, we were all born into this world the same way and we all go out of this world the same way . . . penniless.

This reminds me of the poem, “The Dash” by Linda Ellis.
(here’s a link to them poem:The Dash)
The dash is the little, bitty mark in between the date we were born and the date we die. Although not nearly as big or prominent as the dates on either side, it is the most important.

Two stanzas of Ms. Ellis’ poem stand out for me:

For that dash represents all the time
that they spent alive on earth.
And now only those who loved them
know what that little line is worth.

For it matters not, how much we own,
the cars…the house…the cash.
What matters is how we live and love
and how we spend our dash.

So, on this Thanksgiving, I give thanks for my life, my dash.
Is it perfect? NO, but nothing ever is.
Is it hard? YES, but nothing worthwhile ever comes easy.
No matter the imperfections or the hardships, I wouldn’t trade my life for anything. I consider myself the luckiest and most loved man in the world, and for that, I am THANKFUL!

 

Welcome to the Dark Side

When trying to decide what to write for a new entry, I think about what I would find interesting and what new information I could share that may be interesting to others. I would’ve had a tough time trying to come to that decision even if I didn’t have Alzheimer’s, but because of my “foggy times” and my “dark, extra-confused times,” it makes it all the more difficult.

Instead of trying to re-invent the wheel, I decided to write about what I know best and that is, how I feel and how I act when Alzheimer’s sucker punches me straight in the face.

Welcome to the Dark Side!

Below you will read an excerpt from a presentation I recently gave:

(Taken from my Cognitive Resilience Presentation given at the Generational Resilience Conference in Mobile, AL)

Before I was diagnosed, I pretty well knew the outcome by seeing in myself what I saw in my family members. The difference was I was younger and I was a fighter. I was not going to take this lying down.

I have to say, knowing something and then hearing the clarification of that something is 2 different things. You think you’re ready for it,  but it sneaks up on you like a sucker punch.

Imagine associating a positive diagnosis of Alzheimer’s, or a positive diagnosis of any disease for that matter, to a boxing match. It’s like receiving an unseen, right hook, right on the chin!

You fall to the mat, you hear the Referee start the count … 1,2,3 …

you try to get up,  but you can’t move, you’re just numb … 4,5 …

you shake your head trying to get a little bit of  clarity … 6,7,8 …

the numbness starts to fade … 9 …

you hear a voice screaming at you saying, “GET UP! YOU SAID YOU WEREN’T GOING TO TAKE THIS LYING DOWN! DO NOT LET THIS BEAT YOU!”

You realize it’s your own voice screaming at you hearing the words you said to yourself earlier.

You find a strength you never knew you had and you rise to your feet before the count gets to 10.

Now I know that was a bit dramatic, but I’m trying to prove a point. It is dramatic. It’s a life-changing moment. You realize your life just changed, and not for the better.

My 10 count lasted about 2 days, curled up in a ball in my bed, while I envisioned my Grandfather, my Father, my wife’s Grandmother and my Mother, not as they were before the disease took them, but at the worst part. I was at a big pity party, and I was the only guest. I kept asking to no one, “How had this happened to me?” “Why had this happened to me?”

Well, since no one was there to answer questions which I knew had no answer, I had to take my own advice and get up before the referee made it to 10. There was no way I was going to be counted out.

You see, it’s not just me that I have to think of. I’m married to my best friend, the love of my life. I can’t quit on her!

I have two step-children, who I don’t call step-children. My daughter is 21 and my son is 15. They lost their Dad back to heart disease in 2009. There’s NO WAY I can quit on them!

So, each and every day when I wake up, I get up and make a difference.

It seems like more than a year ago when I received my diagnosis. A lot has happened since then and a lot of it has been positive, however, there has been some dark, difficult times.

I operate on a schedule, a schedule that resides on my phone, a schedule that I wrote about in my previous post “There’s a Reason it’s Called: The Easy Way.” If it’s not on that schedule, if I am not reminded what I am supposed to do that day and when I’m supposed to do it, there’s a good chance it won’t get done. The same goes for the unexpected things that pop up.

I know you’ve heard the saying, “Don’t Sweat the Small Stuff ‘cuz it’s All Small Stuff.”  Well, the same cannot be said for me. I’m not going to speak for everyone for I know everyone reacts differently, so I will just speak for myself. Because of the DNA I received from my Father, my temper has always been a bit short. I can hear some people saying, “SHORT? Are you kidding me? Short doesn’t even come close!” I like to call it “being passionate” but that usually also gets a laugh.

What I’m trying to get at is, I worked very hard to control my temper. No one needs to hear or see that, especially if they have never been around that type of person before.  I did pretty well, only exploding every once in a while. Since my diagnosis, it happens more often. I don’t think it does because I can no longer remember when it happens or how many times it happens. So, I ask. It happens more times than I would like.

One of those times was this morning. I’m not going to get into the details. All I will say it was a very small insignificant thing and I exploded. I exploded all of my wife, all over my daughter and I would’ve exploded all over my son, but he was still sleeping. I even exploded all over #DallasTheDog! It was not only unfair to them but unacceptable to me. Just because I have Alzheimer’s does not give me a free ticket to treat them in a disrespectful way.

Once I realize what I’ve done, when I see the looks of pain and sadness on their faces, I go into my dark place. My mind becomes a darkened sphere of sadness. I think about what I have done, the words I have said (shouted) and try to figure out a way to apologize.

When I re-enter into reality, I do apologize, but it is THEY who make me feel whole again. They hug ME, telling ME it will alright, telling ME how much they love me.  I tell them how hard I have worked to keep everything under control and I know I haven’t exploded or complained in a long time, only to be told it was “just a few days ago when you . . .” or “well, it was just last week when you . . .” They do this not to throw it in my face, but because I asked them to tell me. They don’t like to because they know it will make me sadder than what I already am, but, like everything else they do for me, they do that also.

This is just one instance of what happens. It’s mainly one instance because it’s all I can remember right now. I know if I asked I could fill up pages, but I’ll save that for my book!  😉

The reason I write about this is because, when I am seen in public, I appear to be a polished, educated Alzheimer’s Advocate who can speak eloquently about my Alzheimer’s experiences. I am for the most part, because my long-term memory allows me to call upon my Public Relations days when I could speak about anything and everything. The only difference now is rather than speaking off-the-cuff, I read my words from a script. It sounds polished only because I practice over and over again, but by the time I get to the actual presentation, I have forgotten what I have practiced and the long-term PR memory kicks in. The days of learning and retaining anything new are over.

I wish the days of my darkness were over but I have the feeling they have only just begun. Whenever I am speaking of my Alzheimer’s, I mention that the person with Alzheimer’s is not the only person that is affected by the disease. In my case, it’s my family who, not only loves me unconditionally, but cares for me unconditionally, and does so under the radar.

They embrace me on my good days as well as on my dark days. They and I both wish for the dark days to be less. In my mind they are, but in their reality, I have come to find out they are not. All I can do is try that much harder. I just hope my brain understands what it I am trying to do.

 

Until next time,
PEACE!!!

B
Pensacola, FL

There’s a Reason it’s Called: Taking the Easy Way

As each day begins, we are faced with a decision . . . “Am I going to take the Easy Way or the Hard Way?”

Most of the time, this is an unconscious decision, however, if we are having a rough morning, we may “consciously” ask ourselves that question.

“The pessimist sees difficulty in every opportunity. The optimist sees the opportunity in every difficulty.”
— Winston Churchill

For me, it would be very easy to just sleep the day (and night) away and let my Alzheimer’s World just pass me by, not having to face things that normal-brained people don’t even have to think about. For instance, I now have an alarm on my phone that goes off every morning, noon and night to eat. Yes . . . to eat.

On a recent visit from my sister and brother-in-law, my sister noticed I had lost a good bit of weight. She asked about my eating habits and I told her, for the most part, I was eating very healthy. Shannon, my wife, said, “when he remembers to eat.” Hearing it said out loud, I came to the realization that I had been forgetting to eat on a regular basis. You would figure your empty stomach sends a message to your brain that says, “FEED ME!” My stomach probably does that but my brain forgets to tell me.

So in addition to the alarm telling me to eat, it also tells me when to take my medicine(s), when to get on my ALZ Assoc conference calls, when to read my emails, etc. Thank goodness for the alarm function on my iPhone.

“I will always find a lazy person to do a difficult job because he will find an easy way to do it!”
— Bill Gates

Then there are the decisions as to how I will spend my day. Since driving is out of the question (I very rarely drive due to my ability to get lost, which makes me anxious, which makes me not want to drive because I may harm myself or anyone in my truck or other people on the road) I have to think of what I can do to stay productive. With the “Walk to END ALZHEIMER’S” approaching, I tell myself to get outside and walk “Dallas the Dog” to get myself prepared. Sadly, I forget to do it. Ironically, when I do remember, it’s raining. No, it’s not an excuse, it’s just how it is.

Advocating is the one thing I do daily, whether it is a speaking engagement or through Social Media. When I have a speaking engagement, as Shannon says, I come alive. I think it’s because I go into “work mode”, falling back on the times when I was working in the role of my Public Relations role. In a way, Advocating for Alzheimer’s is a Public Relations role for I am educating and making people aware of Alzheimer’s. It becomes second nature to me and there is no thinking involved. It’s when the Advocating is done is when I have issues.

“Nothing in the world is worth having or worth doing unless it means effort, pain, difficulty… I have never in my life envied a human being who led an easy life. I have envied a great many people who led difficult lives and led them well.”
— Theodore Roosevelt

So, in retrospect, for the past 55 years, I guess I have had a pretty easy life. Sure there were hard, tough times (broken bones, 5 knee surgeries, gallbladder removal, divorce(s), 3 heart attacks, back surgery, neck surgery, to name a few) but it was never as hard as it is now. You see, before now, all of my “ailments” were curable. I knew with a little rehab, I would be up and about and continue on. There’s no rehab for Alzheimer’s.

Each day is a rehab day for me. I try so hard to reconstruct the day before. I know I should write things down so I won’t forget but trying to remember to write things down so I can remember them the next day or the next week is hard to remember. It’s quite a conundrum. I sort of know how Bill Murray felt in “Groundhog Day.” Each day, although it’s a new day, seems like the day before yet, with not so many memories. I know that may seem hard to understand, but it’s the best way I know how to explain it.

The Dictionary is the only place that success comes before work. Hard work is the price we must pay for success. I think you can accomplish anything if you’re willing to pay the price.
— Vince Lombardi

So, I will keep plugging along, trying my best to remember things, but I will never give up, i will never stop fighting, and I will NEVER take the easy way!

Until Next Time,
PEACE!

B

Mother’s Day

(With Mother’s Day coming up, I wanted to pay homage to ALL MOTHER’S ((and this means all individuals who fit the role of a Mother regardless of gender)) who selfishly give of themselves, day in and day out. I wrote the following Blog Post 2 years ago. I re-read it for I didn’t want to re-hash anything I had already written. I am reposting this with a few additional words and photos. The additions will be in italics and bold.)

Holidays. There are so many holidays on the calendar that it’s difficult to keep track of them all. Some of them are legitimate and some are just made up for some reason or another.
The one holiday that I truly believe is the holiday of holiday’s is Mother’s Day. The reason I say this is because, without Mother’s, none of us would be here. Sure, the Father’s had a little something to do it with it but the Mother’s are the ones that carry the burden.

In an effort to explain the importance of Mother’s, I went to merriam-webster.com to look up the definition of “Mother.”Mother's Day
This is what I found:
a :  a female parent
b    (1) :  a woman in authority; specifically :  the superior of a religious community of                      women
      (2) :  an old or elderly woman
First off let me say I believe Merriam-Webster needs an update.
Second, I apologize to all Mother’s, both female and male (who assume the role) for the insincerity of the definition.

While I am not an expert, and not a recent guest of a Holiday Inn Express, I would like to give my own definition, or explanation, of what a Mother is.

A Mother is someone who:
– can soothe anything, no matter what the age, with a hug and a kiss
– will fiercely protect her family like a lioness protects her cubs
– praises their children for the good they accomplish but also holds them accountable for any and all of their wrongdoings
– can make your favorite meal impossible to replicate because of her “secret special ingredient.”
– can assume the role of sole provider when no other support is available or not given
– can assume the role of caregiver of a spouse/significant other, parent or grown child when that individual is no longer able   to support or provide for themselves.
– rises from her sickbed to take care of her family no matter how bad she feels
– consistently puts others before themselves
– loves unconditionally

A Mother's Love

I could go on and on, however, I think you can see that a Mother cannot be defined by any one definition, especially by the definition provided by our friends in the dictionary profession. A Mother’s definition (can change on a daily or hourly basis or at a moments’ notice.) Defining a Mother is almost impossible because of the infinitive person she is.

In addition to caring for her children, most Mother’s are also wives, which involves taking care of a bigger child with a different set of issues altogether. Most of the time, that bigger child has no clue as to what his wife does on a daily basis because he is too busy complaining about his day, playing golf, getting together with his friends, playing X-Box, Fantasy Football, etc. (Just to be clear, I am not grouping all Men/Husbands into this category, but YOU know who you/they are.)  😉

In my definitions of a Mother, one of the things I stated was, A Mother is someone who: rises from her sickbed to take care of her family no matter how bad she feels.
When my Mother was stricken with Alzheimer’s, over time she forgot how to do things, forgot what things were but still tried.

 She still had that Motherly Instinct inside trying to get out. Finally, when she lost her ability to speak, she would sing. (She sang in church for over 40 years and she loved movie soundtracks, especially The Sound of Music. When she would clean, she would put that soundtrack on and just sing away as she cleaned the house.)  Although Alzheimer’s took away her speech, she kept the perfect pitch. No longer knowing the words she would make up words or say la la la la, but I could recognize the song. I truly believe it was her way of saying, “Here, let me make YOU feel better by singing to you!.” Even if that wasn’t true, I don’t care. No one can disprove it so I believe it to be true because that’s who my Mother was . . . and although no longer of this earth, STILL IS!

(As a side note, in the last few hours of her life, I was the one singing to her. My sister held the phone up to her ear and I sang her a song.
There was eye movement as I sang as if she was actually hearing my voice. My sister and I will ALWAYS believe she heard the music she so loved. A few hours later, she passed away. With that said, NO ONE will ever tell me the power of music does not matter.) 

Mom's Hands
(I’m not sure of the date of this photo but I do know this is the last photo I have of my Mom and I. She NEVER, EVER went out of the house without make-up on let alone take a photo with no make-up on. Plus, I wanted everyone to remember her how she was . . . BEAUTIFUL!
At one point during my visit, she reached for my hand with both of hers and we just held hands in silence, looking at each other, she towards the end of her Life with Alzheimer’s and I, just starting out. I’m so glad I was able to capture this moment. 

So to all the Mother’s in the world, regardless of whether you’re married, divorced, single, an adoptive Mother, a Father filling the role of a Mother, I hope your Mother’s Day is everything you want/need/hope it to be. We all know you deserve much more than just 1 day a year and hopefully you receive it.

Until Next Time . . .
Peace

Mother's Day

An Alzheimer’s Poem

Tomorrow I may not recall,
The things I should have said today.
I can’t help it, it’s just how it is,
So I don’t hold back saying what I want to say.

I may not always remember your name,
But somewhere inside, there’s a memory.
With a little coaxing it comes to the forefront,
Slowly appearing, again becoming a reality.

I hate that I don’t appear to be who I once was,
But inside, I’m still me.
My reality may be a little skewed and bent,
My speech a little stuttered, not flowing and free.

These are just minor setbacks,
So I don’t need nor want your sympathy.
Yes, I’ll get worse over time,
But don’t worry, Alzheimer’s isn’t contagious, you can catch it from me.

Just remember, life is short and unpredictable,
You never know what tomorrow may bring,
So express the love you hold in your heart,
Belt out that song you so badly want to sing.

Brian – 4/26/15

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!

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!