ALZHEIMER’S RESEARCH RIGHT NOW! #7: Volunteering For Alzheimer’s Research!

From the first moment I discovered my dad had been diagnosed with Alzheimer’s, it seemed like I was alone in this ugly place. Even ones who had loved ones suffering in this way; even though people TALKED about the disease, it felt for me like they did little more than mumble about the experience. Not one to shut up for any known reason, I added a section to this blog…

Every month, I’ll be highlighting Alzheimer’s research that is going on RIGHT NOW! Harvested from different websites, journals and podcasts, I’ll translate them into understandable English and share them with you. Today: “A worldwide quest is under way to find new treatments to stop, slow or even prevent Alzheimer's disease.”

Pretty much since Dad was diagnosed, I’ve planned on joining some kind of research group. I don’t want to have Alzheimer’s “sneak up on me”.

Talking to my doctor was like talking to a wall. He suggested I do an Alzheimer’s memory test now so we can get a baseline, and while I understand that that would be a good thing, how exactly does that help me? He suggested I contact my health insurance’s Neuroscience center and see how they might help me. I did that as well.

In poking around on the website below, I discovered that I could get on a national register for volunteering:

“If you are interested in participating in a current clinical trial, use Alzheimer's Association TrialMatch®, a free, easy-to-use clinical studies matching service that generates customized lists of studies based on user-provided information. A lack of volunteers for Alzheimer's clinical trials is one of the greatest obstacles slowing the progress of potential new treatments.”

What I found startling was this: “A lack of volunteers for Alzheimer's clinical trials is one of the greatest obstacles slowing the progress of potential new treatments.”

Why would anyone who’s watched a parent or partner suffer the agonizingly slow progressive debilitation of this disease on someone they love wouldn’t run screaming to a clinic to volunteer to help stop it? Why aren’t research programs overrun with clamoring volunteers? Are people blind?

So then, I did my research. Being a science teacher as well as a school counselor, I “live in” numbers – populations, atmospheric components, velocity, demographics…I’m familiar with them and comfortable with them. It’s part of what makes me roll my eyes at the current pandemic – the numbers are nowhere near as alarming as broadcasters and I’m keenly aware of how the numbers are being manipulated, massaged, and preferentially highlighted. Don’t get me wrong, the pandemic is serious and I use my mask, practice social distancing, and wash my hands more (more in the past two months than in my entire life, I’m pretty sure!).

However, this is one statistic I never looked up:

“Studies of family history say that if you have a close relative who has been diagnosed with Alzheimer's disease—the most common form of dementia in older adults—your risk increases by about 30%. This is a relative risk increase, meaning a 30% hike in your existing risk.

“If you are age 65, the risk of being diagnosed with Alzheimer's is 2% per year, although this also means a 98% chance per year of not developing Alzheimer's. In absolute numbers, a 2% annual risk means that two out of 100 65-year-olds will develop dementia every year.

“Family history raises the 2% annual risk by about 30%, to 2.6% per year. That means going from 20 cases in a group of 1,000 to 26 in 1,000, or six additional cases in 1,000. ‘So the absolute increase is relatively small,’ Dr. Marshall says.

Age raises the chance of Alzheimer's more than family history. People in their 70s have a 5% chance of being diagnosed—more than twice that of people in their 60s. Family history raises this by 30%, from 5% to 6.5%. Again, the absolute change is relatively small.”

Now this is where statistics thrown around and where the idea of preferential highlighting comes in. If this were a news broadcast, they’d say, “Breaking news: family history raises your annual risk of being diagnosed with Alzheimer’s by 30 percent!”

They would ignore the actual percentage of people being diagnosed with Alzheimer’s – which is TWO percent (and not a very scary number at all – this from someone who is sitting in this two percent right now.) to a (staggering) 2.6%... (the .6% is 30% of 2%...)

They would also fail to note that you would then have a 97.4% chance of NOT being diagnosed with Alzheimer’s Disease. That doesn’t make very good “breaking news” at all. In fact, the chances of me NOT getting Alzheimer’s are overwhelmingly in my favor.

So, why should I join the research?

Because for me, it’s the right thing to do.

I’ll keep you posted.

Resources: https://www.alz.org/alzheimers-dementia/research_progress/treatment-horizon, https://www.alz.org/alzheimers-dementia/research_progress/clinical-trials/about-clinical-trials

Image: https://www.meduniwien.ac.at/web/fileadmin/_processed_/e/1/csm_shutterstock_142671010_4683b6bf13.jpg

ENCORE #132! – Reconstruction Era: Part 10

From the first moment my wife discovered she had breast cancer, there was a deafening silence from the men I know. Even ones whose wives, mothers or girlfriends had breast cancer seemed to have received a gag order from some Central Cancer Command and did little more than mumble about the experience. Not one to shut up for any known reason, I started this blog…That was four years ago – as time passed, people searching for answers stumbled across my blog and checked out what I had to say. The following entry first appeared in February 2014.

Strangely, there doesn’t SEEM to be much to comment on – except the elusiveness of lymphedema.

On occasion, the area around my wife’s right implant swells. This is the side where the lymph nodes were removed, so while it’s not surprising, how it comes and goes is puzzling.

I did a bit of research (now THERE’S a big surprise!) and found out that there’s nothing out there that’s helpful…

The two subjects – lymphedema and breast reconstruction after mastectomy – are well-covered. But no one seems to have done any research into intermittent lymphedema. “About 7% of women who have had lymph nodes removed will develop some swelling of the arm after surgery, which is usually mild and goes away. Transient or temporary lymphedema can also show up years after surgery. It can be caused by infection or other reasons. This lymphedema is of more concern because it may become permanent. Most women who develop permanent lymphedema do so within 4 years of their breast cancer treatment, but it can also appear many years after surgery…Most women don’t get lymphedema. The majority of women who develop arm lymphedema do so within 4 years of breast cancer treatment. Lymphedema is likely to be permanent, and only a few women will have temporary lymphedema.” (http://www.bccancer.bc.ca/PPI/TypesofCancer/Breast/Rehabilitation/default.htm)

While the MECHANISM of lymphedema is well understood: transport of lymph from an extremity back into the lymphatic system is interrupted the cause of extended lymphedema is virtually unstudied. The interruption of transport has many causes such as injury, infection, disease, or actual removal as in breast cancer surgery.

What is called “temporary lymphedema” when it is disconnected from an immediate injury, is not understood at all. Lymphedema itself is the subject of numerous mythic treatments ranging from taking diuretic pulls (believing that lymphedema is called by water retention); using benzopyrones (which poison the liver) to making ultrasound work NOT as a diagnostic tool but as a special usage that might be likened to the use of “laetrile” during the 1930s through the 1970s: snake oil pure and simple!

Why this craziness?

Because lymphedema – which only happens in 7% of breast cancer mastectomy and axillary dissection patients – doesn’t happen to EVERYONE and so is fairly low on the research grant list.

For those it does happen to – the options are few, though one has held out some sense of promise: lymphatic venous anastomosis. Keep an eye on the Breast Cancer Research RIGHT NOW! posts for the latest news.

Image: https://c2.staticflickr.com/6/5527/10893068965_1d328e8f71_b.jpg

GUY’S GOTTA TALK ABOUT…Alzheimer’s #29: STAR TREK and Alzheimer’s

Dad’s diagnosis of Alzheimer’s stayed hidden from everyone until I took over the medical administration of my parents in 2015. Once I found out, there was a deafening silence from most of the people I know even though virtually all of them would add, “My _____ had Alzheimer’s…” But there was little help, little beyond people sadly shaking heads. Or horror stories. Lots of those. Even the ones who knew about the disease seemed to have received a gag order from some Central Alzheimer’s Command and did little more than mumble about the experience. Not one to shut up for any known reason, I started this part of my blog…

On another blog I keep, I complained that while science fiction dealt with all kinds of disabilities, few I’d run across dealt with dementia, or Alzheimer’s in specific. I found some, as I reviewed here: https://faithandsciencefiction.blogspot.com/2018/06/possibly-irritating-essay-no-futures.html

I was shocked then as my wife and I were re-watching the last season of STAR TREK: Deep Space Nine. Broadcast at the close of the 20^th Century, when we were just beginning to feel the effects of dementia and Alzheimer’s (Dad was diagnosed in 2014 and died in 2019 of complications stemming from Alzheimer’s.)

Alzheimer’s was identified 120 years ago and since then has moved from an obscure condition including “…memory loss, paranoia, and psychological changes. Dr. Alzheimer noted in the autopsy that there was shrinkage in and around nerve cells in her brain.”

At the turn of the century, Alzheimer’s and other dementias didn’t even make the “Top Ten” list of global causes of death. Nineteen years later, it has skyrocketed to the sixth most common cause of death among humans, though in 2017, it was the FOURTH most common cause of death on Earth. In 2019, it was the 6^th most common cause of death in the US, topped by heart disease at #1.

So, you’d think it would engender quite a bit more fiction than it does; and in the field of speculative fiction, you’d think it would be a gold mine of story ideas.

It’s not.

In fact, just like in the real world, it seems like no one wants to talk about it at all. Of course, I did – twenty years ago in ANALOG Science Fiction and Fact. The June 2000 issue carried my story “A Pig Tale” in which a researcher illicitly used a drug designed to treat Alzheimer’s to “rewrite” her father’s memory, erasing his suicide attempt. You can read it here: http://theworkandworksheetsofguystewart.blogspot.com/2013/04/a-pig-tale-june-2000-analog-science.html

At any rate, in the ST:DS9 episode, “Once More Unto the Breach”, a Klingon with dementia – and a glorious reputation from the past – wants to die in glory. Commander Worf, an old friend of his, arranges a place for him on a dangerous mission. “Klingon Kor is growing old and senile, and asks Worf for one last chance to die in battle. Worf uses his sway to get him on a ship, and though he initially he is humiliated, he eventually gets his warrior's death.”

While the cause of his loss of memory is laid on “senility”, it’s more than that. Just watch the episode – Kor is not only forgetting things, he’s paranoid as well as reliving the past as if it’s the present. It’s this aspect of his Alzheimer’s that nearly kills everyone.

Dad’s retreat into the past never endangered anyone’s lives, though his denial that he was starting to get confused when driving – and a harrowing turn across five lanes of traffic – might easily have killed people besides himself. That retreat caused constant problems for us and led to embarrassing revelations of his past. This manifested itself several times for me when he became convinced that my mom had left him because of imagined (recalled?) marital indiscretions. That happened far more often than I wanted to count.

How WOULD a disease like Alzheimer’s manifests itself in sapient beings other than Human? How might they be treated? Would a cure for one be a cure for another? What if other sapient civilizations practiced “senicide”? STAR TREK: The Next Generation dealt with this issue in the episode “Half A Life” in which a man in his “prime” is culturally required to end his life. The troubled Lwaxana Troi tries to convince him to live; an offer he eventually and regretfully refuses.

I’m always on the look out for stories that deal with senescence, Alzheimer’s, and dementia. If you know of any others, let me know. In the meantime, I’ll continue my search to cross post here and on my regular blog!

Resource: https://memory-alpha.fandom.com/wiki/Once_More_Unto_the_Breach_(episode), https://www.alzheimers.net/history-of-alzheimers/, https://ourworldindata.org/causes-of-death, https://www.who.int/news-room/fact-sheets/detail/the-top-10-causes-of-death, https://www.hollywoodreporter.com/lists/star-trek-deep-space-nine-930878/item/once-more-breach-star-trek-926160, https://en.wikipedia.org/wiki/Senicide

Image:  https://upload.inkspire.org/uploads%2F1503370874800-Alzheimer-disease-patients.jpg

ENCORE #131! – Reconstruction Era! – Part 9

From the first moment my wife discovered she had breast cancer, there was a deafening silence from the men I know. Even ones whose wives, mothers or girlfriends had breast cancer seemed to have received a gag order from some Central Cancer Command and did little more than mumble about the experience. Not one to shut up for any known reason, I started this blog…That was four years ago – as time passed, people searching for answers stumbled across my blog and checked out what I had to say. The following entry first appeared in January of 2014.

The results of the surgery to place the implants was quite suddenly made manifest because of a cat.

Yeah, a cat.

You know how they say that cats have such a soft tread? You can’t hardly hear them when they walk?

They don’t tell you that if your cat walks across your chest in an effort to snuggle up close to a warm body, and they step on your chest, and they’ve done it a million times before – that you won’t get a stabbing pain that feels like your internal stitches holding the scaffolds in place are tearing free...

That’s what happened a couple of days ago and it sent me scurrying to the internet before we called the doctor. What I found there was a matter of deduction drawing on my biology degree, so I AIN’T NO DOCTOR; this is a common sense deduction. If anything else happens, we’re going back to the clinic!

So, this is the logic chain. Point out anything you see that might be stupid:

1)      During surgery, it is impossible to avoid cutting nerves. “It is normal to feel tingling or numbness on the inner side of your arm. The sensation is due to nerve damage and should go away after two or three months. But some women may always have a little numbness.” (http://www.cancerresearchuk.org/cancer-help/type/breast-cancer/treatment/surgery/reconstruction/possible-problems-with-breast-reconstruction)

2)     Nerves DO grow back, but it takes time. “In the peripheral nervous system -- the network of nerve cells outside the brain and spinal column -- cells sometimes naturally regenerate damaged axons.” (http://www.sciencedaily.com/releases/2013/11/131107122742.htm)

3)     The nerve damaged during mastectomies and reconstruction runs from the armpit area to the chest. “This is related to cutting or injury to the intercostobrachial nerve, which runs from the chest wall to the arm and provides for sensation.” (https://talkabouthealth.com/is-there-any-way-to-repair-a-nerve-damaged-during-a-mastectomy-my-pain-is-constant-intense-burning-at-the-armpit)

Putting this data together, I deduce that the nerve is growing slowly.

The cat stepped on the end of the nerve.

The shooting pain was the regrown nerve firing.

Conclusion: For the time being, we aren’t going to worry. We will keep you posted!

Image: https://c2.staticflickr.com/6/5527/10893068965_1d328e8f71_b.jpg