Category Archives: Dementia

A Fading Old Memory Between My Wife And Me

1991

In a perfect world, this blog would never have been sitting in a draft folder waiting for the results of a diagnosis – and finding the right time to talk about it. In an imperfect world, this blog takes a frustrating journey on memory loss, my wife, and me.

I can only assume what Janice and I experienced has happened in a similar fashion to more than 6 million people. In the beginning, small incidents we brushed off were, hate the word, anecdotal.

Memory loss is typical, we’re told, as we age. Things like forgetting why she went into the room. “I must be getting old” style excuses.

Those were types of comments from her (and snarky comments from me, of course) on occasion. Laugh as we will, I reminded her – my dad called it “old-timers” disease… Not outright denial, but – Nah, couldn’t be.

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1992

For background

Early in 2014, Janice worked in retail. She’d been “short” on her drawer, considerably over the $5.00 limit. Her boss -gave- her a week off while they “investigated” the shortage. While she knew there was no money “stolen”, the fact remained her till was not accurate. I wasn’t overly concerned but would find myself ultra-aware about my wife’s issues…


1992

Hey, wait a minute…

My son went with her to the grocery store she’d been going to for 15+ years. Not only did she pass the grocery store, she forgot where she was going. My son, intrigued by his mother’s forgetfulness, took great pride in telling the story. Again, one incident didn’t correlate with another, and it didn’t really – well, she’s not old enough to… Wait, brain issues??? Well, she’s too young to have a cognitive loss. Let’s press on.

In another instance, Janice took Dustin somewhere. It was mentioned she was had been “drifting” into the other lane – so much he grabbed the steering wheel to keep her in her own lane. She’d done it before. Now that’s not funny.

Suddenly, “little things” started adding up. Occasional frustration while using the microwave. She mentioned she couldn’t focus on traffic lights, looking at the one ahead rather than the one she was approaching. She’d find her chair behind her before she’d sit down…Seemingly ‘anecdotal’ things I (we) had brushed off – now deserved my dedicated attention.

Denial isn’t an objective option. Something’s going on. I (we) decided to stop her from driving. (I’ll get back to that.) We didn’t know – what we were looking for. Imaginations can and did run pretty wild…Parkinson’s? Brain tumor? Alzheimer’s?


So many questions

Fast-forwarding beyond the primary physician, a recurring question asked was “Has anything traumatic happened in [your] her life” or any “big changes”… Well, we’re pretty boring but had struggled in ways like anyone else over the years, nothing either of us considered traumatic in the sense they were looking for.

The best we could come up with was we had quit smoking about a year before… It’s at this point – I was trying to understand if it could be due to the absence of smoking (and all the chemicals) and the issue at hand. Was there a connection?

By 2015, appointments with a recommended neurologist brought multipe things – cat scans, blood tests, ultrasounds, thyroid, heart tests, electroencephalogram (EEG’s), magnetic resonance imaging (MRI’s), and led to eye tests (new glasses), ear/hearing tests, overnight monitors with cords strapped to her head to monitor brain waves (think Medusa!), and cognitive skills tests, were suddenly a partial list of our routine.


1999

Frustration

It is time-consuming, frustrating (and necessary) to figure out what is happening. Now, I’m not saying the first neurologist was behind the times, I’m just saying the equipment seemed antiquated – something that looked like it was from the 1970s.

He didn’t “find” anything, we had to keep making more appointments.

In the middle of 2015, we decided to get a second opinion to verify there was “nothing there” or found. Still, without an official diagnosis, she was prescribed Donepezil (Aricept) by her primary doctor, it immediately gave her vivid dreams and leg cramps.

I’ll be clear:

Donepezil is not a cure, and it states it does not cure Alzheimer’s disease, but it may improve memory, awareness, and the ability to function.

I’ll be more clear:

It also may NOT improve memory, awareness, and the ability to function, at least for my wife. Her symptoms remained – a lack of balance, depth perception, memory.

This is where I coined my phrase

Treating the symptom, not the cause – is never an effective outcome.”


2011

Being dismissed

Off to a second neurologist. There was, of course, further testing (mostly the same, because the 1st neurologist didn’t want to share records with the 2nd neurologist (((WHAT???))). By the time we could be ‘seen’, it was spring of 2016.

More of the same tests were conducted, which now also included an Ear, Nose & Throat (ENT) examination for equilibrium – and a cardiologist. No unusual problems. Fast forward for time and space, this doctor said they couldn’t find anything physically wrong. Stay with me…

A recurring statement was ‘[you’re] “she’s too young” for Alzheimer’s. Janice was not in her 60’s – she had just hit her 50’s. For the vaping and smoking readers, I inquired on the 2nd visit with him about reducing nicotine and/or the possibility of her not smoking and symptoms appearing a year or so after quitting – if it were possible that…

I was abruptly interrupted with arrogance and superiority by a rehearsed condescending blowhard. I could tell… I was conversing on, and with, very thick-headed ice.

So, we were told (by two “professionals”) at this point: “She’s too young to have memory problems”. Based on her MRI’s brain scans – the second doctor emphasized he couldn’t see anything unusual or physically wrong with my wife, insinuating symptoms indicated a mental problem. The “problems” were “all in her head”. Still with me?

I’ll repeat that: They couldn’t find anything physically wrong with Janice, but of course – encouraged follow-up visits to see if her condition ‘changed’.

Wait, what? If you can’t find anything…why would I schedule…. never mind. I wonder why the medical community wonders why patients don’t trust their doctors.

My (and her) response was asking if the diagnosis was mental… Not in defense, but my natural reaction was, and I did, tell this second doctor – if I thought something was mentally wrong with her, I’d have said so and taken her to a psychiatrist. After 20 something years – I’d have noticed. But, I could be wrong.


On the diminishing trust of the “professional”, we halfheartedly took his advice and went to the psychiatrist, once. Just in case. I wasn’t ‘allowed’ in. This ‘professional’, in one visit, determined he wanted her on more medication, immediately.

We didn’t fill the prescription, we didn’t go back.


Towards the end of 2016, and distraught, we weren’t giving up, and decided on a third neurologist. Now, two have “found nothing“. Considering her age at the time of whatever this “is” started at about 50, two professionals said she was “too young to have memory problems“.

Well, not according to my accounts. Her symptoms were still a lack of balance, depth perception, memory.

One of the motor skills and problem-solving evaluation tests was re-ordered. I find this of interest because she hated the test, but we both really liked the doctor, a psychologist. He remembered us, understood our frustration, and he listened. He asked what I thought were pertinent questions. Professional inquiries, standard as with others. He also asked what it was I first noticed – to prompt us on our quest.

I thought about it after explaining a few things – forgetting to turn off the stove, the frustration of not remembering to pay a bill a couple times, driving incidents, all seemingly minor details but way out of Jan’s detailed character over the years…

One thing I thought was minor, piqued his interest. I explained we shared a computer and when I came home – the screen was always turned to one side and not straight. Kinda lopsided.

A light-bulb went off just above his head. He said it was very interesting about the depth perception…………..

Perception. Depth. Dementia… Huh. I was catching on.


With 2017 and 2018 having various tests, appointments, and guesses eliminated, we found she had diabetes. Medication takes care of controls diabetes. Also along the way, the third neurologist sent her to an eye specialist – where he found – and then did cataract surgery for her in both eyes.

Having multiple MRIs obtained, the third doctor instead, (and thoughtfully) ordered a positron emission tomography scan (PET) scan (not covered normally by insurance, and it should be). Note, dear reader, the other neurologists never mentioned a PET scan. Once ordered, it was approved after a 2nd try because a PET scan is not, we learned, an “approved” method for determinations…(?!?!?). MRI’s were also hard to approve years ago, and now PET scans are still considered “research”.

Once approved, The doctor assured us it would be definitive, and show (if any) any abnormalities. Meanwhile, another on-site standard memory test (taken a few times already) was performed at his office by a practitioner. He got the results, and it brought him quickly into the room where he exclaimed to Janice: “You’re no longer allowed to drive”… We explained she hadn’t driven since around 2014. (Told you I’d get back to that).

The PET scan was approved – and results in December of 2019 clearly showed abnormalities consistent with early onset Alzheimer’s. That was a definitive answer. They can’t pinpoint any specific ‘stage’, but is considered: Stage 3. The definition fluctuates between 2, 3 and hovers around 4 on occasion.


“There are drugs to treat the symptoms of early and mid-stage Alzheimer’s.”

“Currently there is no drug or treatment that prevents Alzheimer’s or related dementias.”



Knowing there is no cure, there are experimental drugs and studies that she can participate in, Janice decided to decline both.

Life is not without incidents, struggles, and frustrations. We were searching for, and finally found the cause of her issues. Steps for balancing diabetes, cataract surgeries, and other issues have seemed to make day-to-day life – better. I say ‘better’ with emphasis and reason. More than anything, it was a sense of relief to know. Had we dismissed these signs at the beginning, we’d be quite a few years behind for a diagnosis.

In fact, if we were just starting to notice (and possibly ignoring) things, the behavior pattern today would make me think – something might be wrong with her. Now, after more than 29 years, there are very good days, and on occasion, not so good days. In my mind, we’re about 5-7 years ahead of the curve.


Final thoughts

2018

We are relieved knowing what it is, but not relieved by what it is. What is sad is three professionals inappropriately predetermined an answer, gaslighted, stigmatized, and embarrassed my wife, then left us to search for an answer for what seemed like an eternity.

This has been a long journey from the questionable – subtle – and not so subtle – symptoms, questions, appointments, fear, testing, analysis, discovery, and diagnosis.

Jan & our Grandson

In an imperfect world, there are things we cannot control. In a perfect world, you must live your life making decisions that control what is best for you and your loved ones.

It isn’t the end. While the future may be challenging, this has been a 29+ year path of old memories – between my wife and me.

A few links:

Early-Onset Alzheimer’s Disease

What Is the Difference Between Alzheimer’s and Dementia?

Alzheimer’s Association

Alzheimer’s Foundation of America

Alzheimer’s Drug Discovery Foundation

Vaping In The News – February 16th, 2019

Thanks to Mike Peterson for the graphic!!!

Vaping In The News covers nicotine, smoking, vaping, snus, heat not burn, e-cigarettes, harm reduction, tobacco control, public health, government, regulations, policies & more worldwide.


Researchers Try Nicotine To Treat Memory Loss ~ Federal Communications Commission and the children™ ~ CDC Misleads by calling E-cigarettes a ‘Tobacco Product’ ~ Vape Radio ~
The Arrogance of Public Health Advocacy ~ Vaping Taxes ~ Vaping Hit by Double Tragedy ~ Respiratory Study Fail ~ Surgeon General Watch: Data, Snippets, and Narratives ~ Vaping in the Mic


Researchers Try Nicotine To Treat Memory Loss

More positive involvement using the word, (and the chemical) “nicotine”. This is good. This makes people who know better nervous. Excellent. More research I say! Think about it… if kids thought nicotine is good for you, they would avoid it like… oh never mind. I also secretly hope there is a use for those patches taking up shelf space.

Researchers Try Nicotine To Treat Memory Loss


Federal Communications Commission

Speaking of “The Children™”, ‘one’ Commissioner of the Federal Communications Commission (FCC) wants to stop less harmful products being advertised because of no other reason: “even if they are targeted at kids”.

Meet Jessica Rosenworcel. Jessica is an “Impatient optimist. Mom, wife,” and of all things an “inveterate coffee drinker.” Huh.

The responses to her are in this link


Kristen Noll-Marsh has a question. (Click to enlarge).


Brendan Carr, also Commissioner at FCC, thinks otherwise.


Dr. Gardner has the answer for the children ™ :


CDC Misleads by calling E-cigarettes a ‘Tobacco Product’

No kidding. Already established abroad, The Centers for Disease Control (CDC) has incorrectly defined…. oh never mind. I am grateful for the American Council on Science and Health taking this on.

CDC Misleads by calling E-cigarettes a ‘Tobacco Product’



Here’s a great deal from Lunar Rover!

LUNAR ROVER | Premium eLiquid

Simply use “vapinglinks” at checkout for 15% off your entire cart!

Please visit my proud sponsor

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Vape Radio

Vape Radio has had a fundraiser up for about a month. (I completely missed it!) In my opinion, Rod and his team are like this blog. They get the word out. They contribute to and talk about advocacy. They’re #LOUDER.

The Vaping Legion had him on here last week. If you are able to contribute, wonderful, If not, please share.

Vape Radio


The Arrogance of Public Health Advocacy

Let’s see… covered misleading, covered the children™. How about some arrogance? Are you like what is described as the “average American” who is “resentful toward those who tell him or her how to live”? So am I.

This is an eye-opening perspective from a Doctor, in proper form:

The Arrogance of Public Health Advocacy


Vaping Taxes in the United States and Around the World

There should be no tax imposed on a less harmful product. Period. I say NO more taxes on cigarettes OR vaping products, but they’re doing it anyway.

No stranger to my blog, Jim McDonald writes for Vaping 360, and is one I admire. He took on vaping taxes around the world:

Vaping Taxes in the United States and Around the World


Vaping Hit by Double Tragedy

From across the pond, Dave Cross (another I admire) at Planet Of The Vapes has taken on the task of informing our community of two heartbreaking deaths.

Vaping Hit by Double Tragedy

Also see his Respiratory Study Fail


Surgeon General Watch: Data, Snippets, and Narratives

As we slip into the third week of my one-man #SGWatch on Twitter, I took a harder look at what Dr. Adams says, and does, on his personal account – and what he doesn’t on his professional account as U.S. Surgeon General. Oh, and confusion. A general mess. That’s covered as well:

Surgeon General Watch: Data, Snippets, and Narratives


Then, because Mike started it, I spent over an hour on the 34th episode of Vaping and the Mic (and even showed my face) to discuss snippets, narratives and data…

Vaping and the Mic



Lunar Rover

This blog is sponsored by LUNAR ROVER|Premium eLiquid.

Check them out!

They not only produce cocktail and fruit flavors, they also have a range of tobacco flavors ranging from 0-18 strength.

Here’s a great deal from Lunar Rover!

Simply usevapinglinks” at checkout for 15% off your entire cart!

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Have you met my OUR friends at vapers.org.uk?

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I proudly joined David Goerlitz on his latest podcast: David G Model Citizen.

Are you familiar with Tobacco Harm Reduction For Life?


You can find me here trying to be cordial on Facebook

You can find me here being a bit more evil on Twitter

You can find me here on Instagram

You can also find me on LinkedIn



Are you familiar with GONZO GIVES?  VapeTithing? Do that! #FundTheFuture!


It’s FREE, have you joined CASAA? Have you added your testimony here?


Keep up with the latest here with the Foundation for a Smoke-Free World


Medical, Research, Science Professionals:

Research:


Politics:

E-Cigarette Politics

A Billion Lives

A Billion Lives


#ChangeTheConversation

#YouDontKnowNicotine

Your comments are NEVER filtered, always encouraged and welcome at the bottom this blog. There is definitely more to come.

Keep ON #Vaping On.

Kevin

You don’t Know Nicotine

You Don't Know Nicotine
Source

You Don’t Know Nicotine

Award-Winning Filmmaker

Award-winning independent filmmaker Aaron Biebert is on the move again. He and his core team are ready to get to work on his new ground-breaking documentary, “You Don’t Know Nicotine”. In just four days, momentum is building quickly towards the first goal of funding this new film.


It isn’t a question, it is a statement.


“You Don’t Know Nicotine”.


On the Kickstarter page, Aaron asks:

  • How does nicotine actually affect developing brains?
  • Are there any benefits to adults who use nicotine without smoking?
  • Who’s covering up the truth about nicotine, and why?

Updated 1/30/2019: “Thanks to you, our project is currently the #1 most popular film project on Kickstarter!”


What they say

Varied statements of nicotine being as addictive as “heroin and cocaine” have been made for decades. They don’t just say it, they are assertive about it.


Action on Smoking and Health quotes Dr. Gottlieb stating it “rivals the addictive power of heroin and cocaine. For teens, it is particularly risky” and it “can rewire an adolescent’s brain“.

Action on Smoking and Health
Source

The Centers for Disease Control say nicotine is a drug that “can harm brain development, memory, and attention“.

Centers for Disease Control
Source

Cliff Douglas, “Vice-President Tobacco Control, American Cancer Society, and faculty, University of Michigan School of Public Health” states nicotine leads to changes in the brain.

Cliff Douglas
Source

The Food and Drug Administration says – like heroin or cocaine, it changes the way your brain works.

Food and Drug Administration
Source

The Surgeon General says nicotine is “highly addictive” and can “harm brain development“.

Surgeon General
Source

Ruth Malone, Professor of Nursing & Public Health Policy UC San Francisco, Editor, Tobacco Control journal – has a slightly different slant.

Ruth Malone
Source

“The great enemy of truth is very often not the lie–deliberate, contrived and dishonest, but the myth, persistent, persuasive and unrealistic…”


Are There Benefits? Are they right?

Think about it: is nicotine addictive? Is it dangerous? What are the health risks? Can it harm brain development? Are there benefits to the chemical?

What are they hiding?

Is there justification to what you’ve been told about nicotine or is the information outdated? Is what they say taken out of context? Do some of the people repeating it know it’s true or false?


“Too often we hold fast to the cliches of our forebears. We subject all facts to a prefabricated set of interpretations…”


This blog is sponsored by LUNAR ROVER|Premium eLiquid.

Here’s a great and exclusive deal from Lunar Rover!

Simply usevapinglinks” at checkout for 15% off your entire cart!

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Is there a controversy?

The subject matter of this film is intriguing to me. In March of 2017, and in collaboration with others, I conducted a “30-day Nicotine Challenge (with criteria: still uncontested).


What I expect from Aaron Biebart and his seasoned team is thought-provoking truth. I am looking foward to their findings, good or bad.

Why has this not been explored before?

Like his last award-winning independent film, I’m fascinated to see this subject taken head-on. I expect the public health community to line up (in an orderly fashion) to take unprecedented opportunity to explain themselves intelligently and end the debate publicly.

I also expect some to ignore it.


We enjoy the comfort of opinion without the discomfort of thought. ~John F. Kennedy


Searching for answers

While getting to the bottom of this, I expect – and predict – this director will enlighten us in the process, bringing this subject front and center, telling the world what we don’t know about nicotine.

I fully support this project because I understand the freedom of expression without outside influence. I understand educating the public is much less about ego and much more about education.

Regardless of the outcome, I look forward to the opportunity of discomfort of thought.


I’ll leave you with what the Kickstarter page says:

“We will chase down as many experts (willing & unwilling) as our budget allows. It’s time to get answers from all sides of this debate.”

If you’re interested, you can pitch in as little as $5.00 or much more, with levels and rewards being different, such as your name in the credits, an early streaming link, honoring a loved one who died from a smoking-related or brain-related illness, a public screening license, and much more – up to and including the “Tater Tot” level.

The Kickstarter campaign is here.

Hashtag #YouDontKnowNicotine

Follow this on Facebook, Twitter, Instagram and the website.


My sincerest hope is this film will Change The Conversation .




Lunar Rover

This blog is sponsored by LUNAR ROVER|Premium eLiquid.

They not only produce cocktail and fruit flavors, they also have a range of tobacco flavors ranging from 0-18 strength.

Here’s a great and exclusive deal from Lunar Rover!

Simply usevapinglinks” at checkout for 15% off your entire cart!

Lunar Rover thumbnail_300x90


Have you met my OUR friends at vapers.org.uk?

vapersukgraphic.JPG


I proudly joined David Georlitz on his latest podcast: David G Model Citizen.


You can find me here trying to be cordial on Facebook

You can find me here being a bit more evil on Twitter

You can find me here on Instagram

You can also find me on LinkedIn


Are you familiar with Tobacco Harm Reduction For Life?


Are you familiar with GONZO GIVES?  VapeTithing? Do that! #FundTheFuture!


It’s FREE, have you joined CASAA? Have you added your testimony here?


Keep up with the latest here with the Foundation for a Smoke-Free World




Medical, Research, Science Professionals:

Research:


Politics:

E-Cigarette Politics

A Billion Lives

A Billion Lives


#YouDontKnowNicotine

Your comments are NEVER filtered, always encouraged and welcome at the bottom this blog. There is definitely more to come.

Keep ON #Vaping On.

Kevin