Alzheimer's: The Journey

I Have Alzheimer's BUT, it Doesn't Have Me!

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

Eat THESE! Take THAT! Look at THIS . . . Fact or Fiction?

As an Alzheimer’s Advocate, I’m always searching the news feeds for anything new in the Alzheimer’s world. Some of things I find are really interesting and what I believe to be helpful.

The latest being a new app called, Life in the Moment“The full concept will launch in late spring. She hopes it will not only help families manage the disease but help monitor its progression. Life in the Moment will have “a variety of really practical daily life activity support tools, she said, “so that families just have one place to go.”
They even have the support of Glen Campbell’s family behind this app and will feature his song, “I’m Not Gonna Miss You.” It seems to be a very good piece of technology and will hopefully do what it says it will do.

Life in the Moment

There is also an app that states:

App That Helps Patients Sing Their Favorite Songs Slows Dementia, Alzheimer’s Disease, Improves Memory

This advertisement features an image of Gene Kelly from “Singing in the Rain” to help promote the app.

singingintherain01

While I understand the idea behind this app, and it is “FREE” to download, instead of choosing the songs they have on their app, there are tons of places to download free songs on your phone or tablet that can be tailored to your loved one’s tastes.
One of my brothers made a CD for my Mother (who recently passed away on January 14, 2015 from Alzheimer’s)  and played it for her when he visited. My Mother loved music and had a beautiful singing voice. Our childhood was filled with music, especially the “Sound of Music” soundtrack, which my mother would sing along with Julie Andrews.
Anyway, she seemed to respond favorably to the music.
Since I have Early Onset Alzheimer’s, I also find listening to music extremely comforting, as well as emotional. To me, it is a healing tool.

But like I said, the app is free so, it may not be so bad.

So that’s 2 of the good things I have found on the Interweb. I’m sure there are more, but those were the most recent I came across so I used them as examples.
Now onto the other things.

Let’s start with Coconut Oil.
can-coconut-oil-prevent-alzheimers

As the caption on the picture says, “Can Coconut Oil Prevent Alzheimer’s?”
Well, let’s face it, if Coconut Oil could prevent Alzheimer’s, every Neurologist in the world would be prescribing it. Drug companies would be making their version of it and the future would be Alzheimer’s free.
Don’t get me wrong, Coconut Oil does have some great health benefits. My sister and brother-in-law take it religiously and it has helped them in a nutritional way, but, they don’t have Alzheimer’s. Coconut Oil has slightly improved brain function in people with Alzheimer’s, but only for a short period of time. I call it the band aid effect when it comes to Alzheimer’s.
I spoke with my Neurologist about Coconut Oil and he said the jury was still out and there was no concrete proof of its curability capability.

Then I came across this:

Turmeric: ‘Remarkable Improvements’ For Alzheimer’s Disease

NM 2754 L300 Turmeric_150x280

The first thing I read was, “A turmeric treatment on patients with Alzheimer’s disease symptoms has revealed “remarkable improvements. A recent study found three patients with Alzheimer’s disease (AD) saw reduced severe behavioral symptoms if they consumed less than a gram of turmeric each day, for three months.”
Read more at http://bit.ly/1IHZfAk

I’ve been taking Tumeric for more than a year. I haven’t seen any improvement. As a mater of fact, I have gone from Stage 3 to almost Stage 4. Maybe it works for people in earlier stages or maybe it is just me. I’m just saying what it has done for me,or better yet, what it HASN’T done for me.. Maybe it will work better for you.
Then there’s this . . .

Can What You Eat Help Prevent Alzheimer’s Disease?
http://on.wsj.com/1DAJzui

organic-vegetable-of-the-month-club-5-lbs-per-month-1

The MIND diet was developed by researchers at Chicago’s Rush University Medical Center, whose recent study found that certain foods could help prevent the onset of Alzheimer’s disease.

Although I grew up in New Orleans (the worst place to live if you want to eat healthy but some of the most delicious food you have ever eaten. OMG how I miss that food!) my mother always served us balanced meals. We always had a salad, a vegetable, a protein and a starch. Sure, back in the 50’s, 60’s and 70’s, there was a lot of grease or other fats mixed into the food to make them taste absolutely wonderful. However, my Mother was the poster child for eating low cholesterol, low carb, low fat and high protein. She would even weigh the meat to make sure her and my dad only ate 4oz’s per serving, yet, she developed Alzheimer’s and my Dad developed Dementia.

I guess what I am trying to say is, the way I developed Alzheimer’s was because of the gifts of proteins and genes passed down from my Mother and Father which they received from their parents, and so on. I could have been a Vegetarian or a Vegan. I could have exercised every day and been the picture of health but I would have still have developed Alzheimer’s.

I’m now on Aricpet and will soon be on Namenda. These drugs are to help slow the progression of Alzheimer’s, giving those that have it a little more time time to enjoy the good parts of their lives. But, after a while, it no longer stops the progression and, well, you know what happens after that.

So, I am in no way trying to say that it’s a waste of time for people and companies trying to come up with ways to prevent this disease or cure those of us that have it. There have been some breakthroughs but still there is no sure fire way of preventing or curing this disease.

More funding is needed to come up with a sure fire prevention and cure. Without that, everything else is just fluff, or as I previously called it, a band-aid.

You and I both know that after while, band-aids come off and something else then has to be applied.

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!

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.

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