Tag: #EarlyOnsetAlzheimer’s

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.

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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!

I Surrendered

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A few months ago, I went to renew my drivers license. The renewal date wasn’t until September but Maureen was renewing hers so I figured I would renew mine while we were there.

As we were sitting there answering questions the clerk was asking, she asked me the following question … “Do you have any type of mental illness that may prevent you from driving a vehicle safely?” I knew I had to answer the question honestly, even though I did not want to for I knew what the consequences would be.

I told the clerk, “well, I have Alzheimer’s Disease and I’m not really sure if my reaction time would be like it was.”

She apologized and told me that she could not renew my drivers license without having me tested to see if I could pass the driving test. I knew if I got behind the wheel of a car, my reaction time was not going to be enough to pass the driving test. She said she would leave it open in case I wanted to get tested but she would have to flag my license.

Maureen and I had several discussions, weighing the pros and cons of getting tested. What ended up being the straw that broke the camels back was this. Maureen told me she had noticed the my Executive Functions (making decisions, diminished by my Vascular Dementia) had gone down hill. She gave me examples of conversations we had, some I remembered but the majority of the conversations I didn’t remember.

With my inability to make snap decisions, we came to the conclusion that renewing my license was not going to happen. I understood that, but it was a sad, sad time.

Yesterday, July 21st, I went back to get an ID. Once the process was over, I was no longer a licensed driver. It hit me hard once we got back into the car. As we were pulling out of the parking lot, I lost it. I had a drivers license since I was 17 or 18 years old. Now turning 60 years old in a little over a month and a half, I no longer have a drivers license.

It was so very hard to take although I knew what I was going in there for. I went in as a licensed driver and came out with a Florida ID. It still hit me very very hard. I felt like my Dementia once again took something away from me that I treasured, something that was mine.

I remembered a story my brother Wayne told us. He took my Dad’s car keys away for he was no longer able to drive safely. My Dad forgot a lot of things due to his Vascular Dementia but one day he and Wayne were having a conversation and my Dad was just staring at Wayne. He then said, “I know you! You’re the SOB that took my car keys!” or something along those lines.

It’s funny (not Ha Ha funny) how memories will come back to me at the strangest times. It’s usually not the big memories, but the smaller, memories.

I hate what Alzheimer’s has already taken from me. I have always said from the beginning that I was not going to allow Alzheimer’s to define who I am. I think I’ve done a pretty good job of that so far. Today was a big test. Over the past 6 years, I don’t know if it was Alzheimer’s or Vascular Dementia that took away some things that I treasured and things I had taken for granted for so many years.

Now, those things (friendships, memories, dreams) are gone. I haven’t driven a car or any other type of vehicle since I’ve been here in Largo. I knew that I should not be behind the wheel of a car but I still had my that little piece of plastic that said I still had the ability or I should say, the right, to drive a vehicle.

That is no more and I need to let it go.

Maureen said “the ability to drive is not the measure of a man. The true measure of a man is his care and concern about his fellow man. And you have shown yourself to be a giant by considering the safety of others in this decision. THANK You!”

She then said, “you know what is such a comfort to me? having you in the car with me. You’re my second set of eyes, my second set of ears. You keep me safe!”

So I guess now, I am a co-pilot!

Until Next Time . . .

PEACE!

B

So, I Walk!

Today is the day I walk at the 2015 Pensacola Walk to END ALZHEIMER’S. You could say it’s the Super Bowl for the Alzheimer’s Association.

Over the past few Saturday’s and continuing into November, throughout the United States, Alzheimer’s supporters have figuratively and literally joined hand-in-hand with one another as well as with individuals with Alzheimer’s.

If you’ve noticed, the faces and ages of people with Alzheimer’s get younger and younger. That’s because Alzheimer’s is no longer a disease of the elderly. It is now affecting individuals under the age of 65, individuals in their 30’s, 40’s and 50’s, individuals like me. Early-Onset Alzheimer’s is not as well known as regular Alzheimer’s, so I walk. 

I watched my grandfather, my wife’s grandmother as well as my mother all live productive and wonderful lives. Instead of going into their golden years enjoying their children, grandchildren and great-grandchildren, I watched their memories be taken away by this cruel and horrible disease. It has no cure so, I walk.

I know what my future looks like. I wish I didn’t, however, I don’t dwell on that. Instead, I live in the moment because the moment is all I have. I still have my long-term memories but my short-term, let’s just say I don’t remember too much from yesterday. Thankfully I have 3 people in my life whom I love more than anything in this world who lovingly, and without a moment of hesitation, help me each and every day navigate my way through the day. So, they walk with me.

Cancer, Heart Disease, HIV / AIDS, as well as other diseases have had success in finding prevention and cures, so I know there’s hope. I know first hand about heart disease having survived 3 heart attacks myself so I know there is hope for Alzheimer’s. The difference between Alzheimer’s and other diseases is funding. Where other diseases receive BILLIONS from the National Institute of Health for research, Alzheimer’s is still in the MILLION dollar category. Through these walks we not only raise awareness for Alzheimer’s, we also raise funds. So, we walk.

Without hesitation, I have vowed to my family and to my loved ones who are no longer with us, that I will fight the fight; that I will advocate as much and as often as possible; to make sure EVERYONE I come into contact with will know, not only about Alzheimer’s but Early-Onset Alzheimer’s. So, I walk.

On behalf of my family, myself and all those who have Alzheimer’s who are not able to speak for themselves, I thank each and everyone you for supporting us.

I may have Alzheimer’s but it doesn’t have me . . . So I will continue to walk!

The “First Day of School” Thing

I can still remember the days when the kids were small and how excited they were to start their first day of school, well, mostly Bradley . . . Asheton not so much. The morning would be busy with making sure lunches were packed, school supplies were in the backpacks, the-first-day-of-school-new-clothes were ironed (Shannon doesn’t let anyone walk out the door looking like, as she calls it, a raisin) and then we had to make sure we were ready for work. It was hectic. It was exciting. It was our life!

Thanks to the fact that Alzheimer’s has not yet taken my long-term memory, I can still recall these things.

Flash forward to today. It’s about 7:15am, Shannon is getting ready for work, Dallas and I are sitting in my recliner watching the news. I hear one alarm go off and then another. Doors start to open and close. I know Asheton and Bradley are now up and about and getting themselves ready for the start of a new school year. With Asheton in College and Bradley in his Sophomore year in High School, it’s a far cry from when they were small.

Shannon leaves for work, Asheton and Bradley are talking in the kitchen and instead of cereal and juice, it was coffee and anything in the refrigerator they could either eat standing up or in the car on their way to school. (Asheton now drives Bradley to and from school because my driving is limited to just around the immediate area.) They hug and kiss me goodbye, get in Asheton’s car and away they go.

I know working parents have looked forward to this “First Day of School”  for they don’t have to worry about summer day-care; being concerned with who’s doing what to who and why; settling arguments over the phone and all that goes on at the house during summer break.
Then there are the stay-at-home parents that once the kids are out the door they may breathe a big sigh of relief; dance a jig; excitedly make a grocery list so they can go shopping ALONE; have the computer/laptop/iPad/Tablet to themselves; pleased to not hear, “MOM! / DAD! every 5 minutes.

I know I’m generalizing and this doesn’t pertain to everyone but you get the picture.

I included the sentence above because the above scenarios do not pertain to me.
I’ll tell you why.

I have found with Alzheimer’s, I don’t like being alone. I’m pretty sure I have not liked being alone all my life so I will say instead, Alzheimer’s has MAGNIFIED my desire to NOT be alone.

Having Dallas around has helped me cope with my loneliness a bit but, although Bradley and Asheton spend the majority of their time in their rooms, I’m comforted in knowing they are here. I’m not sure they are as comforted as I am for I sometimes tend to hover. I don’t mean to do this but from researching the topic, I have found that hovering is a side effect of Alzheimer’s. Our loved ones, especially our spouses, tend to be a sort of “security blanket.” I guess when Shannon is not around, I then turn towards Asheton and Bradley.

I tell them to tell me so I won’t do it but since my short-term memory short circuits, I continue to do it. They do tell me at times and they do it politely so as not to hurt my feelings. When I catch myself, I back off on my own. I get mad at myself for doing this because I know they all value their privacy. That makes it a bit difficult when you have 1 person who is dependent upon the other 3. The last thing I want to do is to be more of a burden on them than I already am. It’s a slippery slope this dependent thing.

So, this “First Day of School” thing has me feeling a bit anxious. I know they have told me their schedules and such but if I don’t write it down it becomes like dust in the wind. Well, I forgot to write things down. DUH!!!
Shannon, Asheton and Bradley are very good about keeping me informed of schedules and such so my anxiousness levels stay at a minimum. Since Asheton tends to write these things down for me, I will have her write some things down on my message board when she gets home. (of course I will have to make a note to remind myself to ask her to make a note. Geeeezzzz this gets to be exhausting.)

Anyways, when I am anxious or, experiencing some other emotion, Dallas sticks close to my side. I am more than thankful for his presence.  The link below is a video I made about this subject.

The advantages of having a pet when you have Alzheimer’s
https://www.youtube.com/watch?v=WX7sWgtiFHA

So, this “First Day of School” thing has changed a bit over the years. This is due the ages of these young adults who live with us and because of my Alzheimer’s. The thing that gets me through it all is my support system, the BRASH System. (BRadley, ASheton, Shannon) Yeah I know, I still have some of my creativity left.
As a side note, if you ever want to see how much of unnecessary knowledge I still have, come by and watch Jeopardy with me. For some reason, I’m really good!  Lol

So, whether you’re a working parent, a stay-at-home parent, or anyone else who has the job of raising these wonderful human beings called children, I hope your, “First Day of School” thing was a good thing.

Until Next Time,
PEACE

I Have Alzheimers, BUT It Doesn’t Have Me!

Is It Just About the Money?

As a very active Alzheimer’s Advocate, I scour the Interweb daily looking for glimmers of hope. Whether it be stories of overcoming adversity, the possibility of new drugs that will help people instead of mice or humorous moments, I try to take in the positive.

With that in mind, I came across a story this morning entitled, “Eli Lilly’s big Alzheimer’s bet: Blockbuster or bust?” I thought, “here’s that glimmer of hope I’m always looking for,” but as I started reading, my heart sank. I should have noticed the story was written by NEW YORK (CNNMoney) but I was too involved in the hope that the story was going to be centered around an Alzheimer’s breakthrough.

Although I have Early Onset Alzheimer’s, I still have the comprehension that company’s need to make money to succeed. I get it.

The story started out on a positive note:
Drugmakers are facing an enormous problem — and a huge opportunity — and Eli Lilly is helping lead that high-stakes race. The pharma giant has made an expensive bet on an experimental drug that could be the first marketed treatment to slow the worsening of Alzheimer’s. That would represent a critical medical breakthrough known as “disease modification.”

I was getting excited but my mood quickly turned. The article became more about how much money Eli Lilly would make rather than how much the new drug would help people with Alzheimer’s.

“It would absolutely be a multibillion dollar blockbuster,” 

“The drug companies are willing to spend a lot of money on such a speculative, expensive trial because the market opportunity is massive. The numbers are staggering,” 

“Blockbuster sales possible: If the Alzheimer’s drug is successful, BMO estimates Eli Lilly could generate risk-adjusted global sales of $7.6 billion by 2024. That would make investors quickly put aside Eli Lilly’s struggles to turn the page on older blockbuster drugs whose patents have already expired.”

“Pharma companies are looking at Alzheimer’s disease because they recognize this will be one of the biggest biopharma markets of our lifetime by virtue of demographics,”

Jonas Salk wasn’t thinking about how much money he could make when he discovered the Polio cure.
When Edward R. Murrow asked Jonas Salk who owned the patent to the polio vaccine. “Well, the people, I would say,” Salk responded. “There is no patent. Could you patent the sun?”

One critic of the big pharma called Salk “the foster parent of children around the world with no thought of the money he could make by withholding the vaccine from the children of the poor.”

Where are the Jonas Salk’s of today?
I understand research costs money but it has now become a matter of “how much money will we make?” rather than “how many people will we be able to cure?” It’s so very sad.

Oddsmakers are giving Eli Lilly’s drug a 60% chance of success and believes it could meaningfully boost the company’s profit margins. If the statement would have ended after “chance of success” it would’ve been a great statement. Adding on the rest just proves the point that is really is all about the money.
Others are far more skeptical, putting the chances that either Biogen or Eli Lilly brings an Alzheimer’s drug to market at just 15%.

In the end, the only statement that I found truth in, but at the same time, sadness, was “In terms of drug development, nothing has worked. It’s been one failure after the next.”

I Have Alzheimer’s, BUT Alzheimer’s Doesn’t Have Me!
Until Next Time . . .

PEACE!

Saved by Siri

Since I am no longer able to work, my main focus is making my family comfortable. In between scouring the Alzheimer’s sites for information to post on Twitter, Facebook and/or to update my Advocacy speech, I do laundry, I clean, I unload and reload the dishwasher, it’s what my life has come to be. For all practical purposes, I am “Mr. Mom” and I’m OK with that. It’s not what I imagined retirement to be, but there are things that happen in which we have no control. This is one of those things,

Another thing I try to do is provide evening dinner for Shannon, Asheton, and Bradley. I used to love to cook. I could throw things together and make them taste so good. As long as I didn’t make it too hot (spicy), they would eat it all and eat all the leftovers. The leftovers were the key. It’s how I gauged whether or not they liked what I made. If it stayed in the refrigerator longer than 2 days, they didn’t like it. Jambalaya

As my Alzheimer’s shows signs of progression, I find that leftovers stay in the refrigerator a bit longer than usual. Every now and then I have to throw them away. Hell, even I don’t like what I make sometimes. To play it safe, I now use online recipe’s or recipe’s from the side of the box to make sure all the ingredients are there. I still add a pinch of this or that, and make sure the meal is nutritionally balanced, but I mainly stick to what the recipe calls for.

Now, don’t worry, this is not a food blog. I am just trying to set the stage for what today’s entry is really about.

Shannon works very hard to keep all things together. When she comes home at the end of the day, she is physically and mentally exhausted. I try to make sure everything is done so she can just relax.

Every Wednesday, there’s a place near our house that runs a special on their “BANG-BANG SHRIMP,” $6 for the order along with bread and a small bed of lettuce.  Although the shrimp have a bit of a kick, Shannon loves them. Since Wednesday was the 1st, and the 1st of the month is her busiest time, I decided to surprise her with dinner.

I called ahead, ordered the shrimp and left to go on my 6 mile, 14-minute round trip to get the food.

That’s where it went all wrong.

3 miles there, 3 miles back. I felt comfortable enough to drive that route by myself. After all, I was going to do something nice for my wife. So off I went.
About 10 minutes into the drive, I realized I was nowhere near my destination. Nothing looked familiar. As Yogi Berra would say, “It was Deja Vu all over again!” 

Since I have used “My Alzheimer’s Story” so many times recently, I immediately went to the part when I got lost going to my Dr.’s office. I had this. I pulled off to the side of the road and started putting info into my phone. The only thing wrong was, I couldn’t remember the name of the place I was going, I couldn’t remember what the Google Maps app looked like, I couldn’t remember a damn thing. The only thing I could remember was, “CALL SHANNON!” “CALL SHANNON!” However, stubbornness, pride, embarrassment and the fact that she had a horrific day prevented me from calling.

So I just sat. I hope no one reading this EVER has to face the feeling of not just being lost, but not knowing how you got there or how to get back.

siriBack to me sitting in the car in a complete blank state of mind. I don’t how long I was there. I again went to my phone to try and look for the Google Maps app. I pushed the main button on the phone and I guess I held it for too long. I heard a sound and the words, “What Can I Help You With” appeared on the screen. It was my friend Siri.

Embarrassingly I started to cry, uncontrollably, you know the point in a movie where someone is stranded on a small, uninhabited island in the middle of the ocean and they see a ship headed their way to save them? THAT kind of uncontrollable crying!

Although I couldn’t remember the name of the restaurant, I could remember Bang Bang Shrimp. So I asked Siri where to find Bang-Bang Shrimp. Bonefish Grill came up with directions.

SIRI SAVED ME!!!

I went to the restaurant, got the food and drove back home, with GPS directions of course. Pulling into the driveway, I realized what should have been a 15-minute trip had turned into almost 45 minutes. Going inside and seeing what my little journey had to done to Shannon was worse than anything.

She was angry with me that I didn’t call, and rightfully so. I explained that being she had a rough day, I didn’t want to bother her. She explained that if I had called her, this could have been resolved in less time and a lot less stress. She was right of course. My good intentions had bad results.

I realized at that point that my days of driving may be nearing the end. I remember when both my parents had to give up their keys. It wasn’t pretty. My Dad, although he couldn’t remember too much, held a grudge against my oldest brother for taking his keys.  I don’t want to put Shannon in that position. She has enough to deal with, dealing with me on a daily basis with just day-to-day activities.

What I’ve learned through all of this and what I hope to remember is, having Alzheimer’s means you have to lean on others for help. I have the 3 people I love the most on which to lean . . . Shannon, Asheton, and Bradley. I have my sister and brothers and I can’t forget my furry, faithful, stuck-to-my-side companion…Dallas. I have friends and family from coast to coast and all points in between that offer their support daily. I consider myself lucky and loved and I say that with tearful pride.

Thank you Siri, and Apple. Making an app to be used as a personal assistant, in my opinion, was the best thing you’ve apple_logo_dec07
ever done. I sincerely hope people like me will use this feature instead of just asking:
What is 0 divided by 0?

Until Next Time,
Brian

“I Have Alzheimer’s . . . Alzheimer’s Doesn’t Have Me!”