The Problem I Have With Alzheimer’s Disease Headlines Like These

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The headline on the article reads:

“New Alzheimer’s treatment fully restores memory function.”

What great news! Headlines like that have been circulating around the Internet, forwarded from friend to friend for several years now. They refer to tests being conducted in many different labs around the world. As my husband died of Alzheimer’s disease, everyone I know is quick to send them on to me.

Unfortunately these headlines are misleading.

When one reads the stories that follow, it turns out the patients involved in these many trials were mice.

Alas, my husband was not a mouse. And neither are the millions of men and women around the world who, along with their caregivers, live with the death sentence: Alzheimer’s.

It’s a long way from a mouse to human being. At a European workshop held in London in May 2010, the conclusion of a study of the efficacy of mice was that although mice are among the best models for cures in humans:

“Mice are not always reliable as preclinical models for human disease and the scientific literature is littered with examples of drugs that worked well in animals but turned out to be ineffective in clinical trials on humans. These failures cost the pharmaceutical industry millions of euros.”

Even if the mouse/human model was a perfect match, it would take years and a lot of money before the drug in question became available to human patients. Getting a drug to market is a long process. In some unusual cases, the preclinical process can be completed in two years, but the average is five to seven, at a cost of millions. At the end of that trial period, the FDA or its counterpart in other governments, must give approval for clinical trials which take another five to seven years. On average, it takes 12 years to get a drug to the patient. One out of 10,999 might make it, at a cost of approximately 1.8 billion dollars.

Oh to be a mouse!

Or for that matter, oh to exchange Alzheimer’s for some other disease!

Comparing diseases is an uncomfortable subject. Whichever one we or someone we love has (even the common cold) is the worst at the time. But some diseases do offer more hope than others. The Alzheimer’s Association reminds us that of the top 10 causes of death in America, Alzheimer’s is the only one that cannot be prevented, cured or slowed.

Approximately five times more people die of Alzheimer’s than HIV/AIDS. Yet HIV/AIDS receives 23 times more than Alzheimer’s of the research budget of the National Institute of Health. In the United States, cancer research gets $5.4 billion; HIV/AIDS, $3 billion; heart disease, $1.2 billion; Alzhiemer’s research $566 million. Please note the difference between the billions and the millions — huge.

So, headlines about cures are deceiving. There is no treatment that will alter the course of Alzheimer’s. There is no cure. Everyone diagnosed with it will die, slowly, dignity first, then the body.

My quarrel with misleading headlines has two aspects. First, they give false hope. And most important, they may discourage fundraising. Read a headline like the one quoted above, and why would you write a check for Alzheimer research? Yet the need for research money is greater now than ever. There’s no shortage of ideas or scientists willing to stake years of their lives trying to find a cure. There’s a shortage of funds to finance their projects.

The idea that there might be a cure that did not get to millions of patients, including someone you love, because we failed to fund the project? That should be society’s nightmare. It’s mine.

joan

This post originally appeared on Sutton’s Place.

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How to Help Kids Feel It’s OK to Ask Questions About Differences

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When I was little, my parents’ friends had a daughter, Emily, who experienced brain damage during childbirth. As a result, Emily couldn’t sit up or talk.

When we visited them, I remember feeling uncomfortable and even fearful about this girl who was just a little older than I was. I remember having questions I didn’t have the words to ask.

I recently asked my mom whether she explained to me why Emily grunted and lay on the floor. She told me she had not. As my great Aunt Libby once said, “We didn’t talk back then like we do now.”

I think I would’ve felt less fearful of Emily if my parents had better prepared me for these visits. If they’d said, for example:

“Emily can’t move her body or talk the way you can because there was an accident when she was born and she didn’t get enough air to breathe, so her brain got hurt. But Emily can communicate by making noises and using her eyes and she loves to laugh and play games… so you can play with her and try to make her laugh.”

In her book, “White Teacher,” Vivian Paley describes a strategy used by her student-teacher to talk about differences when they came up in the classroom. In reacting to a child who stuttered, this student-teacher did not ignore the problem but instead named and defined it, thereby making it “all right (for other students) to talk to Stuart about his stuttering.”

When a teacher (or parent) models this type of behavior, s/he is also creating norms that make it “all right” to talk about one’s differences and to question one’s peers about their differences.

Recently, my daughter commented on a boy who happens to have some learning delays, saying, “He hits because he’s a baby.”

“He’s not a baby,” I clarified. “He’s the same age as you are. All of us are working on learning how to do something better and Matthew is working on learning how to touch people gently.”

We went on to talk about how she could support her friend as he continues to work on gentle touching: “Matthew, I don’t like hitting, but you can be gentle like this.” (I took her hand to show her.) Or how she could kindly tell him, “I don’t like that, please stop.” We also talked about what my daughter was working on learning at that moment.

Without a conversation that allows young people to ask questions and satisfy their natural curiosity, adults can’t tap into a young person’s compassion, nor can we prepare young people to ask respectful questions about differences (physical, racial or otherwise). If we can’t do this, we certainly won’t be able to prepare young people to take action for equity.

A version of this post originally appeared on Raising Race Conscious Children.

Do you have a story about your experience with disability or disease? Maybe a moment that made a big impact on you? Please send it to [email protected] and include a photo for the story, a photo of yourself and a 1-2 sentence bio. Check out our “Share Your Story” page for more about our submission guidelines.

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Why This Man Filmed Himself Having a Panic Attack

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Casey Cahill lives with an anxiety disorder. The 27-year-old from Kentucky occasionally has panic attacks and feels like many people misunderstand the severity of his illness. Cahill recently decided to film himself mid-panic attack to put a face to the disorder.

“I just wanted to make this video to show people that it’s real, OK? This is real,” Cahill says in the video below, which he posted to Reddit’s Anxiety subreddit on June 4.

Cahill has lived with anxiety since he was a teenager. “When I was 15, I dialed 911 thinking I was having a heart attack after looking up my symptoms online,” he told The Mighty in an email. “The EMT brought up that it was probably anxiety. Since then, it’s been a huge part of my life.”

Anxiety disorders are the most common mental illness in the United States, but the people who live with them still face misunderstanding and stigma. Cahill has had difficulty finding the resources he needs.

“A few weeks ago, I was looking on YouTube for similar videos, hoping I could find something that made me feel like I wasn’t alone, that I wasn’t going crazy,” Cahill told The Mighty. “Unfortunately, everything I found seemed pretty ‘mild’ compared to how I felt. So I’m recording myself to help and connect with people who feel like I did a few weeks earlier. You aren’t alone.”

Since the video was posted to Reddit, many people have commented that they strongly relate to how Cahill was feeling when he filmed it.

That’s exactly what I look like and sound like during a panic attack,” one commenter wrote. “Also, it’s nice to know that other men cry, too. I cry a lot during fits of anxiety and depression, and I always feel very ‘weak’ for doing so.”

“I feel like a lot of us… get caught up in anxiety and feel it multiply because we’re afraid to let others see it [and] try and rip us apart,” another Reddit user remarked. “You’re the man. Thank you.”

By being upfront about his illness, Cahill hopes to show others who live with anxiety that it’s OK to do the same.

“Seek help. Don’t be scared, don’t live in pain. People who love you will understand, and you can’t be concerned with the ones who don’t,” Cahill told The Mighty. “We can change [society’s] perception of anxiety.”

See Cahill’s original post and read more comments here.

Related: 31 Secrets of People Who Live With Anxiety

For more resources on anxiety disorders, or for more information about getting help, visit Mental Health America.

Do you have a story about your experience with mental illness? We want to hear it. Please send it to [email protected] and include a photo for the story, a photo of yourself and a 1-2 sentence bio. More info here. Thanks!

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Watch a Man Play The Beatles on a Guitar While Undergoing Brain Surgery

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In the amazing video below, a man plays The Beatles’ “Yesterday” while having surgery on his brain.

The man is a 33-year-old Brazilian bank worker named Anthony Kulkamp Dias, according to a Google translation of the Brazilian News Site G1. Dias had the nine-hour operation to remove a brain tumor last Thursday, May 28, at the Hospital Nossa Senhora da Conceição in Santa Catarina, Brazil.

He was conscious during the procedure so doctors could monitor his speech and motor skills in real time. It was the 19th time the hospital had performed this kind of operation, but the first time that a patient played an instrument during the procedure.

I played six songs at certain times,” Dias told G1, according to a Google Translation. “My right hand was a bit weaker because that was the side that they were operating on. So I stopped and rested. I was interspersing songs and talking with them.”

Surgeons were able to remove 90 percent of the tumor during the surgery.

Check out the incredible video below: 

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The Risk We Take When We Compare Each Other’s Disabilities

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I grew up across the street from what I deemed my “second family.” My family had five girls; their family had three girls. We were never at a loss for baby dolls, Barbies and tea cups. I practically lived at their house — when they weren’t living at mine.

Even though I was only 4, I remember the first time I met them. Of course, as I’ve aged and my memory has been inundated with Spongebob’s cackle, Dora’s Spanish lessons and teeny-bopper-show laugh tracks, I don’t recall all the details of that first meeting. Long forgotten are specifics like what the girls were wearing, if they’d lost any baby teeth yet, if they were nice, shy or funny, but, one memory still engrained in my aging brain is the image of their father. Yes, after all these years, my brain can still see him on the wooden porch smiling and sitting… in his wheelchair.

And I’m sure, like any child, I stared.

Although I’d been raised properly and told not to stare at people’s differences, I’m sure I did. It was the first time I’d ever seen anyone missing limbs and in a wheelchair, and like most children, I didn’t do everything I was told. (Sadly, even though adults know better, sometimes they don’t do as they’re told either. And sometimes their words, their actions hurt.)

My neighbor was a war hero who lost both legs in Vietnam. Even as a child, it didn’t take me long to realize there was so much more to him than his wheelchair. His disability paled in comparison to his abilities.

Perhaps that experience at such an early age taught me to look past my son’s autism, past his disability and see him. Trust me, I’m perfectly aware an autism diagnosis, a pervasive developmental disorder, is not the same as a physical disability. That’s like comparing apples to oranges, but, believe it or not, some folks like to compare. They can’t tell the difference between an apple and an orange, or at least they don’t care enough to look past the labels and see anything other than two round fruits. So, before you start blasting me about comparing my neighbor’s struggles to my son’s struggles and telling me “that’s like comparing apples to oranges,” well, you’re preaching to the choir. Unfortunately, not everyone is sitting in the choir with me.

Not long ago, when I was discussing Ryan’s autism and a particularly bad day he recently experienced, someone said to me, “I don’t really feel sorry for Ryan. At least he’s not in a wheelchair.” Wow.

I was initially dumbfounded and mumbled something like, “You can’t even compare the two.” Looking back, I wish I would have had an apple or an orange (wouldn’t have mattered at all) to shove in that person’s mouth. I wish I would have said all of this…

First and foremost, Ryan doesn’t want anyone’s sympathy or pity. Most days he’s happy in his own skin. Second, just because Ryan’s disability isn’t visible, just because you don’t see it, doesn’t mean it doesn’t exist. This invisible disability doesn’t make Ryan’s difficult times any easier or his heartache any less just because you can’t see it. And third, there would be no need to feel sorry him even if he was in a wheelchair.

Yes, Ryan can easily jump up and sprint down our stairs (he actually sort of crashes down the stairs), without any special accommodations in our home, when it’s time for a few Vanilla Oreos. However, he needs accommodations when it comes to learning at school because although he “looks fine,” his brain processes information differently.

Ryan has two perfectly working legs that can walk, run and jump. He’s strong and more than capable of running away from the bully in the school yard. Yet, when Ryan was being bullied for two years, he was unable to find the words to tell me, due to his language deficits.

Although Ryan could physically run up to a group of friends on the playground and say, “Hey guys, want to play some basketball?” he doesn’t, and chances are pretty high that he won’t. Communicating with friends and initiating a conversation is difficult due to the way autism impacts his social skills and his social awareness.

Even though Ryan’s strong enough to knock over several defensive lineman and could physically become an outstanding football star, he won’t. The pads, the equipment, the shouting and even the grass are too much for his overloaded sensory system to handle.

Yes, autism does make some things more difficult for Ryan, but, there are so many more things that come quite easily to him. I know that, Ryan knows that, and we’re both incredibly grateful. We both recognize there are others who have different struggles than Ryan. We don’t compare apples to oranges.

An autism diagnosis may be a disability that you can’t see, but, for Ryan, that’s OK because just like anyone with any type of disability, be it an apple or an orange, Ryan wants you to accept him, to see him and to see his abilities and not his disability.

Yes, sadly, sometimes even adults don’t know better and say ignorant and hurtful things. I’m sure just like Ryan, my neighbor had heard his fair share over the years.

And although my neighbor may have spent the past 45 years with a disability which required a wheelchair, that didn’t keep him from living. He may have gone through most of his adult life unable to stand on his own, but his abilities, his successes and his happiness stand for themselves. The proof lies in the faces of his beautiful children, grandchildren and great grandchild.

When it comes to disabilities, comparing one disability to another is truly comparing apples to oranges. An apple is an apple. An orange is an orange. If all you ever concern yourself with is what those fruits are labeled and how they look on the outside without bothering to take the time to see what’s on the inside, then you will miss the incomparable essence of them both.

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Read more from this blogger on The AWEnesty of Autism.

The Mighty is asking the following: Describe a moment you were met with negativity or adversity related to your disability and/or disease (or a loved one’s) and why you were proud of your response — or how you wish you could’ve responded. If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our “Share Your Story” page for more about our submission guidelines.

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Blind Man Receives Racist Note After Using Handicapped Parking Spot

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D’Anthony White was doing some shopping with his fiancé in Silver Spring, Maryland, when he received a hateful note.

White, 30, is blind and has a handicapped parking placard so he doesn’t have to navigate through parking lots when somebody drives him places, Fox News reported. White doesn’t always use a cane to get around, so his disability is not immediately obvious to others.

After finishing their shopping, White and his partner came back to their car to find the note below left on the windshield.

It read,“The only thing hadicap (sic) on you is your brain you lazy ni*****.”

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White posted the note along with the following message on Facebook.

We went shopping today and parked in a handicapped space. I made sure to display my placard. When we return to the car this was on the windshield.

All disabilities aren’t visible. And, everything you said was negated by using the “N” word to address us.

Ignorance like this is way too commonplace.

Once, a bartender refused to serve me because he assumed I was holding on to James’s shoulder because I was wasted. I had to tell him it was because I had a vision impairment and couldn’t see in the dark bar.

Another time, a gate agent at the airport ignored me during the pre-board — even though I was sitting in the clearly marked handicapped row awaiting assistance.

And, every day I take the train to work, and hold and tap my blind cane,  but people walk right into me. I must say there are some great Samaritans out there who help me navigate the dark train station and get out safely.

I try not to let any of the ignorance bother me too much, because then they’ve won. I keep going because it definitely beats the alternative! And this bigot won’t get me down either!

PS — I’ve stopped saying “sorry.” I say “excuse me.” Sorry don’t live here no more.

Despite the hurtful and ignorant tone of the note, White has taken the high road and is using this as an opportunity to spread awareness.

Just because you can’t see my disability,” White told Fox News, “don’t make the assumption I don’t have one.”

Get more on the story in the video below: 

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