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!

2 thoughts on “Another Why???

  1. Brian, you have every right to rant. I’ve had similar rants about this very subject for several years. It actually led to my being asked to by the Alz. Assoc. to give up the volunteer position of caregiver support group leader (our support group continues independently).

    All the things you expressed are so very true. I’d only add that I wished money was set aside to allow help with in-home caregiving for those who need it so thay don’t have to quit work or make the difficult choice of putting someone in a facility when they don’t want to. With the millions of dollars raised by charitable organizations it seems there would be some money available to help with in-home care instead of huge fundraising galas.

    Thanks for speaking up for both the person with dementia and their carers. Deborah

    Liked by 1 person

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