Showing posts with label ALS Humor. Show all posts
Showing posts with label ALS Humor. Show all posts

My ‘Go-along’ Adventures Add Humor to Life With ALS

 


I use many strategies to keep myself engaged in life and avoid getting pulled down mentally by my ALS. Being a “go-along” is one of those strategies, and it’s a perfect partner to my showing up.

But being a go-along — that is, accompanying my husband on his various errands — doesn’t make me feel like I’m just a bump on a log. Instead, I’ve learned quite a lot during our outings together. Plus, I’m helpful — er, sort of (wink, wink)

Talking boxes

One habit left over from the pandemic is regularly visiting the drive-thru lane to order a meal. Another leftover is the dreaded malfunctioning speaker. My husband doesn’t have much patience for fast-talking order-takers and scratchy speakers, so he ends up turning to me and asking, “What did they say?”

Only my version of what they said, speaking with my ALS-affected voice, is often even more garbled and slurred — so much that we’re reduced to giddy laughter, leaving the order taker on the other side of the box wondering if we’re just a couple of rowdy teenagers out for a good time.

I’m a people-watcher

Usually, my go-along adventures involve me waiting in our van while my husband pops into a store. Rather than spend my waiting time hunched over a cell phone, I prefer to observe my surroundings and the people walking by. OK, OK, I’m not a stalker, but people-watching helps me when I’m dealing with the challenges of living with ALS.

For instance, there was a time when I was adjusting to wearing ankle-foot orthoses (AFOs) while depending on a rollator to help me walk. From my parking lot view, I was surprised at the number of people who walked with a limp, a hitch in their step, or a slight lean to one side. I even spotted a few people using rollators and wearing various styles of AFOs. That helped me realize I’m not the only one with walking issues. I’m not alone in facing challenges.

Dogs in cars

One time, we had to make a quick stop at one of those gas-and-go convenience stores. While I waited, I rolled my window halfway down and began checking out the cars parked on either side of our van. I immediately noticed that the heads of those in the nearby cars were actually large dogs awaiting their owner’s return. Whenever a customer left the store and darted a little too close to one of the cars with a dog, loud barks and angry growls poured out of their half-open windows. It worked. Customers gave those cars a wide berth.

On the way home, a fun idea popped into my head as I shared the experience with my husband. The next time I had to wait alone in the van, my husband asked, “Will you be, OK?” as he got out. “Yup,” I replied, “just roll the window halfway down and if anyone gets too close, I’ll just bark.” We shared a laugh, and “I’ll just bark” has become our “I’ll be, OK” catchphrase ever since.

For me, living well with ALS means changing my perspective, learning to adapt, and having a sense of humor. Try it for yourself.

Together, we can help each other learn how to live with ALS.

--------------------------------------

Dagmar Munn
ALS and Wellness Blog


Every time you are able to find some humor in a difficult situation, you win.

Anonymous




A version of this post first appeared as my column on the ALS News Today website.



 

Do YOU Speak A-L-S-ky? (ALS Humor)

Image: Hotblack1

Do you speak A-L-S-ky?

I do.

Of course, speaking A-L-S-ky was not on my bucket-list of new languages to learn during these - - my hazy, crazy, lazy retirement years.  Actually, I was hoping for something more on the line of say,  Italian.

But, A-L-S-ky it is, and as they say in Italy - - È quello che è (It is what it is).

My lessons in A-L-S-ky commenced about three years ago. That’s when my tongue began operating at half-speed. It’s actually a common and expected symptom of ALS. For example, I use a “bar-rush” for my hair,” ask for “a fawk and a sch-poon” at dinner and make sure that my “electric schk-ooter is fully chawged.” Obviously, I hear “I beg your pardon?!!” quite a bit now.

So, what’s the upside?
Don’t get me wrong, speaking fluent A-L-S-ky does have its benefits. Well, so far I’ve found only - - two:

Whenever we pull into the drive-through lane of our local fast-food establishment and encounter a squawking, mal-functioning speaker, I for some reason feel just like E.T.; who finally finds his lost alien companions; the squawking makes perfect sense to me! Just like a well-trained U.N. translator, I calmly relay the conversation back to my frustrated husband. “She SAID, do we want the order to-go, or to eat in the car?” Only what actually comes out of my mouth is, “Schee ZED, do we wand da orda to-go or to ead in da caa?”

You probably already can guess the limitations to that special skill!

The second and only other benefit to speaking A-L-S-ky involves telephone solicitors - - THEY now hang up on ME!

I remember one recent instance involving a fellow selling computer software; he apparently had reached the end of his rope for dealing with smart comebacks from irate folks rejecting his sales pitch. Dialing my number sealed his fate.

Me: “Heh-woe?”
He: (silence….)
Me: “I’m verwy sawry but I have ALS and…“
He cut me off: “Ohhhhh, heh-woe is it? Well, I can play that game too!   …HEH-WOE back to you, Missy! …Nyah, nyah, nyah!”
Click - - and then, he hung up!

Answering the phone in A-L-S-ky also helped limit my time spent on the phone with pollsters during our recent (and volatile) election season. Yup, they all hung up on me too.


…And the downside?
What I call A-L-S-ky, is officially known as dysarthria and defined as slurred, slow speech with a nasal tone and imprecise pronunciation of consonants. It occurs in 80% of all ALS patients. I figure, with 450,000 ALS patients currently worldwide, 80% makes it 360,000 of us - - almost a good-sized city - - all struggling with dysarthria!

Of all the various symptoms of ALS (that can include the loss of use of our arms and legs, loss of swallowing, muscle atrophy, and more) research has shown that losing the ability to speak is frequently identified as the worst aspect of having the disease. That’s because we humans take our ability to communicate for granted and losing it can erode the quality of our lives. We become mere spectators; socially isolated and as noted in my previous post, "How to Live a Balanced Life...",  isolation leads to feelings of hopelessness, which in turn can bring on suicidal thoughts. So it’s vitally important that we continue to stay involved, connected and participating in life as much as is possible.

So, what are the options?
Like so many others who live with dysarthria, I’ve learned to compensate by adding in extra body language and facial expressions to help listeners understand what I’m trying to say. Short of forcing folks into an all-out game of Charades, I’ve also learned to edit what I say; reducing colorful explanations and in-depth opinions to simple concepts requiring fewer words. Often I feel as if stuck in in a badly captioned foreign-language film where on-screen we see mouths moving and much arm waving while down below the movie’s captioning simply reads: “Yes.”

In days of old, we’d have to carry around chalk and a chalkboard or paper and pen to scribble down questions and answers for others to read. Now, we have apps that transform a computer, tablet or smart-phone into a text-to-voice device. Just type out a word, hit the “play” tab and let the device do the talking. Hmmm, I wonder…aren’t we still just using a fancy version of the ‘old pen and paper?’

What about this new voice-activated technology? I’ve read it’s the wave of the future, soon to become the dominant way we interact with our devices. Seems the whole world is fed up with typing on keyboards and tapping on screens, “Just talk to it!” the ads urge. But what if we can’t talk? Or if we can, only A-L-S-ky comes out?

My phone’s “Voice Search” app is hopeless when it comes to understanding A-L-S-ky.
I ask: “Whads the bes Bah-Bee-Que wes-wrandt in Tooo-son?”
It answers with: “Here are your selections for - venice bars in Tulsa..."

Didn’t the folks on Star Trek have it all figured out?
Yes, Captain Kirk’s team had the Universal Translator; a hand-held device that translated alien spoken languages in real-time communication. And for us, the future has finally arrived!

Real-time translation technologies and software is popping up everywhere. Apps translate up to 90+ languages, Skype now offers real-time translations of eight languages (more to be added) and hand-held devices are emerging. Here’s a fun and impressive one developed by Logbar in Japan, that debuted just this year - - the “ili.”  http://www.iamili.com/index.html

Now you’d think an enterprising inventor-entrepreneur would see the potential sales opportunity in 360,000 customers all speaking A-L-S-ky, all primed to purchase a hand-held real-time translator that recognized their particular language!

But wait - - News Flash! - - Soon to arrive is a new addition to our family home!

Alexa, is her name. Yup, we are joining the 4 percent of U.S. households who already have an artificial intelligence powered personal assistant. Although I’m disappointed to read it only knows one language - - English, I am heartened to read that it quickly learns its owner's voice inflections, especially owners who speak English with a heavy... foreign... accent!

I can’t wait for my own “First Contact” moment - - when with bated breath I say - - “Alexa… do you speak A-L-S-ky?

-------------------------------

What happens next?
 Read "Lessons Learned from Echo Show" for the conclusion to this story!

DagmarMunn
ALS ansWellness Blogger



"Only through communication can human life hold meaning."
Paulo Freire








I Was a Bag Lady: ALS Humor


It was the summer of love…
It was the summer of song…
Awww... who am I kidding?
It was the summer I became "the (ALS) Bag Lady!"

My journey down the rabbit hole of this unique addiction began a couple of summers ago when I happened across a YouTube video of a woman demonstrating how she made yarn out of a plastic bag. It was a very precise process of folding, cutting, and rolling it all into a little ball of - - hat she called, Plyarn.

I was hooked!

Because not only did our garage have a tote bag full of recycled grocery bags that never seemed to make it back to the store, but I was also in need of a creative project; a project that used my hands.

Being in the early phase of ALS, my hands were still working and I wanted to keep them working. I’ve always loved to knit and crochet, so squeezing in ‘just-one-more-project-before-my-hands-quit’ was now my personal ALS battle cry.

So I brought the tote in from the garage and immediately dove into creating my very own Plyarn. 

Once I absorbed the origami of folding a bag and turning it into long thin slices, I happily discovered that one single Safeway grocery bag produced 10 yards of shiny white Plyarn! A few hours later, the tote was nearly empty. I proudly gazed at a table covered with colorful, little, plastic balls.

Feeling ambitious 
I decided to crochet a purse. Not just any purse mind you, but one with a ruffle, sturdy bottom, and braided handles made out of, of course, more plastic bags.

Lucky for me, pulling everything apart and starting over again is much easier with Plyarn than with real wool yarn! The wool frizzes and knots up when used over and over. Plyarn, through the miracle of being - - err, plastic, can take the abuse. Per my usual method of picking a pattern I’ve never tried before and not ‘wasting time’ on a test swatch; there were, many, many, do-overs.  But in the end, I made a darn good little purse!

Because it was plastic, waterproof, and apparently ‘indestructible,’ it became my new pool bag; used for goggles, lotion, and such. The ladies down at our community pool were pretty impressed, and just couldn’t believe it was made entirely of plastic grocery bags. So, being on a roll, I decided to crochet a matching Plyarn sun hat and wore it at the pool while we all water-walked and chatted.

Pool-side lessons
A few of the pool ladies asked to learn how they could make their own Plyarn, so I typed up some directions and we held a few short sessions poolside. A couple others watched while bemoaning they didn’t know how to crochet, but they offered to give me their collection of saved-up plastic bags.

Dear reader - - at this point, I confess. My brain said, “No thank you” but the words “That would be great!” came out of my mouth instead.

During the following weeks, small collections of colorful plastic bags were bestowed on me. Knowing full well I didn’t need them, but feeling guilty for not at least trying to transform them into something useful - - I dutifully brought them home.

Soon, a new, bigger Plyarn project filled my brain. I envisioned a pool bag large enough to hold my towel and shoes. Plus, I would need another matching hat. 

A bag of bags
A total of 43 plastic bags went into the main section, 10 more for the handles plus, the hat used up 12. Wow! 65 plastic bags!

It was a mighty pool bag; and weighed a ton! The end result kind of straddled the line between useful and objet d’art ....or, just plain odd. However, the pool ladies were ecstatic.

My stockpile of bags finally dwindled down and I proclaimed, “That’s it! I’m done!”

Looking for the "off" switch
I soon learned that there’s no stopping the wheel of motion once people learn it’s easier to bring their plastic recycle bags down to the pool rather than hauling ‘em back to the store. Donated bags kept coming and coming! Finally, I pleaded “No more!”

(a pause in the story) I remember back in Iowa when neighborhood gardens produced bumper crops of tomatoes and zucchini. Bags full of fresh-picked vegetables would appear "mysteriously" at the backdoor or behind the driver’s seat if you happened to leave your car unlocked.  The same thing started happening to me; only with plastic bags.

For instance, I’d park my walker near the pool’s steps, get into the water, and by the time I turned around - - three, four even five brightly colored bags had been secretively attached to the walker. Like Tibetan prayer flags flapping in the mountain wind, yes, my walker had been ‘bag bombed.’

Oh, I’ll admit it was hard for me to stop. Every time I decided to use up what I had on ‘one last project,’ I’d come up short two or three specific colors. I’d put the word out to a few close friends that I was in need of say, lavender or a certain turquoise, along with the admonition, Please, just don’t let everyone else know! They’d kindly help out, and soon the pool became our meet-up site for clandestine hand-offs. Like movie spies we’d silently exchange innocuous envelopes containing carefully flattened bags of color.

My final strategy to end it all was simply to not show up at the pool for a while. Let things cool off for a few weeks, I thought.

A surprising handoff
One day, following a couple weeks of absence, my husband and I returned to the pool. We'd just reached the entrance when a man nervously came up to us. “My wife can’t make it today,” he said, “but she sent me to give you this….you are "the ALS Bag Lady" aren’t you?”

Momentarily stunned, we looked at what the man was holding in his hands. It was a big white garbage bag, crammed, and I mean crammed, full of plastic bags!

Still in a state of shock and with my hands firmly clasping my walker, I could only muster a polite smile. Not knowing exactly what to do either, my husband reached out and took the bag from the man who, just as quickly, turned and walked away.

“What do you want me to do with this?” my husband asked.

“Toss it,” I said, pointing to a nearby recycle bin.

And that was that. My summer as "the ALS Bag Lady" officially came to an end!

A few of my Plyarn hats and bags
---------------------------------------
- - Moral of the story - -
People enjoy helping and if it’s for a good cause, they’ll help even more. 
A very good cause is donating to the ALS Association.

- - Postscript - -
Yes, I’ve seen the video that went viral on Facebook, showing women 
crocheting plastic bags into sleeping mats for the homeless. 

And NO, I don’t need any more plastic bags!   
---------------------------------------

Dagmar Munn
ALS and Wellness Blogger














Auntie A. Ellis Gets Cured! (ALS Humor)


Once again, I am delighted to welcome Auntie A. ELLIS, who joins us as our special guest.

For those who don’t know Auntie A. Ellis, she dishes out advice to anyone and everyone who dares to ask and is gaining a reputation for her unique perspective on living with ALS. Auntie A.Ellis throws being PC (Politically Correct) right out the window and lives by the motto:“Ya gotta laugh, baby, ya gotta laugh!”

____________________________________________
  
Hello, dear readers - - It’s good to be back!

That's because Auntie A. Ellis has some REAL serious business to take care of: it’s time we had a little talk, you and me. Yes, that  talk; the one about what is real and what is fake - - and boy-oh-boy, Auntie has sure seen some big, fat, fake-O’s!  

Who to believe?

Let’s start with the fact that if and when the cure for ALS is discovered - - and trust me on this - - you will NOT hear about it first on Facebook, or Twitter, or YouTube or the spam folder of your email.  Not gonna happen. It will however, be plastered on the evening news and in the newspaper. You know, mainstream media. Not...…social media!

I know, I know, it’s hard to resist the barrage of announcements on Facebook. In fact, Auntie A. Ellis herself, has been amazed to read that she supposedly has: brain fungus, a leaky gut, liver disease, is low on chi and, on top of it all - - her body is overflowing with toxins!

Gee, she must be the healthiest-feeling sick person around!

"But wait," you say, "it all sounds so convincing, so....…possible." Yeah, right! If you can forget everything you ever knew about how our bodies work; basic nutrition, basic digestion, basic science and instead buy into the belief, the hope, that this time, maybe, you’ll be THE ONE. The one who is miraculously cured by wearing aluminum foil on her head while consuming three cups of exotic coconut oil every day - - for twenty-one days in a row. I mean, it could happen, right? NOT!

Fix me, please!

Auntie A. Ellis feels your angst. We share it! There we were, just minding our own business when all of a sudden our legs stopped working correctly. And then, we thought we were speaking all regular-like and it turns out that all the other person heard was gibberish. Say, whaaat?  So, we did the normal thing. We went to our doctor to find out what was happening and what was he gonna do to fix it? Because - - we had trust that doctors always fix us and what’s more, we had a Life to get back to! But, then the Doc said, “We don’t know…nobody knows…and it might be a long time before we find out anything.”

There you have it. The rug was pulled right out from under us. Our trust in the medical system broken. So, who we gonna trust now?

Why, Dr. Google! Just one quick search of the Internet and we’ve got answers! I mean, why did our doctors waste all those years going to medical school anyway when they could’ve just relied on the Internet?!

The famous "Dr. Kook-Among-Us"
                          
Have you met Dr. Kook-Among-Us? He’s everywhere in cyber-space. He has answers. He has therapies and testimonials. He even wrote a book, many books. They all have the same title, like: How to Cure Cancer or How to Cure Liver Disease or How to Cure - - Just About Anything.

What's his method? First, he gains your trust by pointing out a secret conspiracy between your doctor and Big Pharma. They don’t want you to get better, he says. Why? Because they’re making money off of you!  Don’t trust them, he says - - instead, trust Dr. Kook-Among-Us. Because he’s looking out for YOU. And all you have to do is buy his book and learn how to mix up the “special ancient remedy” - - with its one (shh!) secret ingredient!

In reality, the only thing “ancient” going on here is the “con.” Too soon you’ll soon realize you’ve been “had.” Only after forking over $49.99 and discovering that his book is really a four page pamphlet and - - the secret ingredient is: cottage cheese!

It must be true!

Then there’s ALOTI, you know....... A Lady On The Internet. We talk about her all the time, as in,  I know it’s true…...a lady on the Internet told me! Old Auntie A. Ellis calls her, ALOTI-BS (and the BS ain’t a college degree sweetie!) ALOTI-BS shares posts that gush on and on. About her friend-of-a-friend-of-a-friend, whose neighbor-knew-a-man, who had ALS, and he was absolutely cured! For proof, ALOTI-BS offers a grainy video of a man waving his arms and provides a convenient link to an article - - written in 2001 - - by (drum roll here) none other than Dr. Kook-Among-Us!

Is Auntie A. Ellis the only sober person in the room who actually clicks on the research link at the very bottom of Dr. Kook-Among-Us’ article? Proposals, theories and hypotheses are NOT completed research… they are simply proposals, theories and hypotheses.

Take a pill, or two

I know, I know, it’s hard not to want to do something. Your family and friends ask, “What are you doing?” All you can say is, “Nothing.” It’s all so embarrassing. But, it feels so much better if you can gesture towards the kitchen and show a king’s ransom of vitamin bottles and supplement powders. “Ahh!,” your friends exclaim. It’s so visual. It’s so comforting. We’ve actually convinced ourselves that we’re doing something.

Whoo-hoo! Now don’t get Auntie A. Ellis started on vitamins and supplements! A healthy diet does not need to be supplemented.* Plus, most of our food is so enriched that we get extra vitamins whether we want them or not. According to (real) research, the average person who takes vitamins is a healthy, fit, 40-year old woman who doesn’t need to take vitamins at all! Behind closed doors, the vitamin industry refers to their customers the Walking Worried.

But you, we - - have ALS, that alone puts us in another category; the supplement industry refers to us as Hope in a Bottle People. We’re willing to pay or do anything in the hope that we’ll be THE ONE who is miraculously cured.

Be very careful, dear reader. Especially if you’re buying all those vitamins and supplements from a neighbor down the street.....who only sees you as being one final multi-pack-twelve-month-contract delivery away from reaching Silver Sales Level thus qualifying your neighbor for the all-expense-paid vacation in Costa Rica!

Stay the course

What’s Dagmar’s answer? It’s ancient, free and requires dedication and commitment:
  • Eat healthy nourishing foods. 
  • Do exercise that is therapeutically right for your body. 
  • Sleep well.
  • Look inward; love yourself, face your emotional fears and identify what causes your stress.
  • Look outward; surround yourself with calm, caring friends and family.
  • Reach out; participate in your community and express yourself through your passions and knowledge.

What’s Auntie A. Ellis’ answer? “Spend less time on Facebook sweetie!.”

"And oh yeah..... lose the aluminum hat."

______________________________________________

* Excluding physician prescribed vitamins and/or nutritional supplementation.

For current and reliable information on alternative therapies for ALS:

ALSUntangled: This web site lists proposed, current and completed reviews for hundreds of alternative and off-label ALS treatments. http://www.alsuntangled.com/index.html

Complementary and Alternative Therapies in ALS, A 2015 published manuscript which describes and reviews current "popular" complementary and alternative therapies promoted for ALS patients. Authored by: Richard S. Bedlack, MD, PhD, Nanette Joyce, DO,Gregory T. Carter, MD, MS, Sabrina Pagononi, MD, PhD, and Chafic Karam, MD  
LINK: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4712627/

Dagmar Munn
ALS and Wellness Blogger 




I love people who make me laugh. I honestly think it's the thing I like most, to laugh. It cures a multitude of ills. It's probably the most important thing in a person. 
Audrey Hepburn






Email recipients: use this link to go directly to blog web site.

The Common Cold: Staying Positive In Spite of ALS (ALS Humor)

Now, where was I?

Right before the itchy eyes… the scratchy throat and… that one big killer sneeze. Right before my energy hit rock bottom and I gave up and rolled back under the blankets.

Oh yeah, it was last week, Monday…and then poof! The whole week was gone.

Enough clues? You guessed right; this wasn’t a new evil version of ALS robbing me of movement - - or frankly, even caring about moving. This was a full-on case of acute viral nasopharyngitis, the “creeping crud” or, as we all know it; the common cold. Yee-uck!
                                                   
Gee, it’s been a whole eight years since my last cold, doesn’t that count for something? I wondered angrily while rummaging through our medicine drawer. Digging past a pile of band-aides and an assortment of salves, creams and ointments, I finally found the small plastic basket containing battered boxes of cold and flu medications.

Well, I guess there really IS a downside to not having had a cold for the past eight years! Everything had expired! Delirious I looked at the various dates: 2009, 2010, 2008 and… began calculating. Could I, should I, mix-match the weakened multi-symptom potions to create a new hybrid dose?

Fortunately, my husband suggested we chuck the whole lot into the waste basket and he’d drive to the drugstore for fresh replacements.

While awaiting his return I lulled myself with random Internet searches to find out exactly what the latest, greatest, best treatments were for the common cold. What I discovered was that the status of modern medicine regarding colds is nearly the same status we’re in with ALS. That is, the medical community knows a tremendous amount about what the two conditions do to the body, less about the best way to treat them, and nothing yet towards a cure!

According to the latest statistics, we catch a cold an average of 2-4 times a year and they last from 5-9 days. For ALS, the newly updated* lifetime risk is 1-in-300, and a person with ALS lives from 2-5 years following diagnosis. Both have no “cure.”  

I guess I got lucky not having eight years’ worth of colds, unlucky being 1-in-300 and lucky to be outliving my expiration date!

Even the so-called home remedies being touted online for colds sounded eerily similar to those I’ve seen for ALS. There was Ginger, Cayenne Pepper, Mustard, Coconut Oil - - secret ingredients, mixtures and recipes that bring the entire spice aisle of the grocery store right into your kitchen! One fellow with ALS swore that a daily application of Coconut Oil to the bottom of his feet pulled all the toxins from his body. I sure don’t want to be around when he takes his shoes off! In another post, a woman recommended onion juice mixed with honey as a good remedy for children with a cough. Good luck getting a kid to eat THAT treat!

But in the end, over-the-counter medicines and home remedies simply treat the symptoms. They don’t “cure” our cold - - our body’s immune system kicks in and does that part - - generating antibodies that attack the 200+ viruses that take up residence in our sinus, throats and lungs. In fact, studies show that both traditional and non-traditional remedies work only fifty percent of the time. What’s working during the other fifty percent? The Placebo Effect.

Seems that somehow, simply believing in the pill, drink or syrup (even though there may be nothing in it) we get better - - we heal.

There is solid scientific evidence for the biology of belief and its opposite: the biology of stress. In past blog posts I’ve written about Esther Sternberg, M.D., and her work using MRI scans of the brain to track what happens and which areas light up when we think various thoughts. During the Placebo Effect or, our expectation that something will heal; brain pathways are activated releasing dopamine and opiate endorphins - - our brain’s own reward system. At the same time brain chemicals are released that stimulate immunity.  In addition, the folks doing research into Positive Psychology - - how attitude influences our body’s health - - have reached the same conclusions. The mind effects the body and the body effects the mind.

Pretty impressive stuff! But, we unfortunately still haven’t figured out how to control or direct our brains towards intentionally healing colds - - or curing ALS.

By now my husband walked in the door and I eagerly opened the first box. Pulling out a flat package with ten little green capsules shaking like Mexican Jumping Beans in their own individual plastic bubble.

Lesson 1: It is nearly impossible to open a vacuum-sealed bubble pack of capsules!
The package is tamper-proof, terrorist-proof and customer-proof! Itty-bitty pull-tabs are only a decoration. Mere human fingernails cannot scrape off the aluminum backing.  My husband jokingly suggested a blow torch, however we found that using a very sharp knife to pierce the backing - - while, oh so carefully not puncturing the little capsule inside, was the best approach. Heaven help little old ladies trying to do THIS maneuver! 

Exhausted, I downed the medicine, grabbed a cough drop and sat back down. That’s when I discovered…

Lesson #2: Positive psychology has entered the world of over-the-counter medications.
Imagine my surprise to notice little inspiring messages** on the wrapper of each cough drop! And why not? Why not wait out the 2-9 days for my body’s antibodies to rally while enjoying the placebo effect of a nice tasting cough drop bearing positive thoughts? Why not?

…Now, where was I?


* MNDA (Motor Neuron Disease Association) & special thanks to Lee Millard.


**“A Pep Talk in Every Drop!” video: https://vimeo.com/7168576 

Original image: aburland.tumblr.com

Dagmar Munn
ALS and Wellness Blogger















Learning to Use a Walker/Rollator (ALS Humor)

 "A heavy-set woman goes into a drug store and asks for talcum powder.
The bowlegged clerk says, "Walk this way," the woman answers,
"If I could walk that way I wouldn’t need talcum powder!"
- Classic joke from Vaudeville era -

My ALS symptoms began in 2010 and first showed up in my feet and legs. Normally strong and coordinated from years of gymnastics, fitness classes and even dancing on stage in community theater productions, my lower limbs suddenly became weak and unreliable. Not falling came to be my number one priority as something as simple as walking across the room now demanded my full attention. Suffice to say, my movements fell into the less-than-graceful category!

One day I’d wake up with tight muscles, the next day they were floppy. Occasionally, my right knee buckled and gave way as if I'd just stepped into a hole. Ironically in my dancer’s-mind, the movements felt vaguely familiar and I began to give them names: Oh today, I’m walking like the Scarecrow from the Wizard of Oz! And - - Oops, now I’m doing the Tin Man walk!

I had a 'pirate walk,' a 'zombie walk' and even a pretty good impression of a gymnast trying not to fall off the balance beam.

One day while randomly searching the Internet, I stumbled across a video that had me laughing all the way through: Ministry of Silly Walks; a vintage 1970s comedy sketch by Monty Python’s Flying Circus. That’s me! I exclaimed. That’s me!  Yes, it’s probably very “un-P.C.” to find humor in a mockery of silly walks, but I thought…who else than a person with ALS, could fully appreciate how well John Cleese performed and how hard it must have been to do? Besides, isn’t one of the key principles of a resilient life - - “To have the ability to laugh at oneself?”

My neurologist sagely advised I find other things to laugh about and recommended that I get a walker.

Officially, it’s called a Rollator. Walkers are those bare-bones, aluminum, wheel-less, standard hospital-issued devices mostly used by those recovering from hip or knee surgery or, little old ladies in nursing homes.

I sat and had a hard look at my new Rollator - - and it looked back at me. It was black, had four wheels, could fold up and reminded me of bag-ladies who pushed theirs piled high with clothing while shuffling across busy intersections in downtown Chicago. At this point I knew I’d better invoke another key principle of resilience and “Change My Mindset!”

First, I decided to accept the fact it was an assistive device meant to help me walk better and maintain independence; not something that defined me or was a transition towards possible demise. In gymnastics we always used smaller versions of equipment to help practice skills and gain confidence, so I saw my Rollator as a pair of mini-parallel bars on wheels. It would help me maintain a perfect dancer’s posture; roll along with each step and to - - finally relax!

My Rollator doesn’t have a name. I haven’t decorated it with flowers, stickers or a clown horn. OK - - I do have a bell.

Besides helping me walk tall it’s even become part of my daily exercise routine. I stand directly in front of a sturdy chair with the Rollator positioned in front of me - - wheels locked in place. I can then do any number of simple standing yoga or Tai Chi movements knowing that if I lose balance, the chair is behind me and the Rollator is an easy grab in front.

Now for some “Rollator Etiquette”- - No, not for us pALS (people with ALS) but for all YOU non-Rollators out there.

Number One: I’m not pushing a beverage cart! When we chance to meet up and stop to chat, please resist the urge to cross one foot over the other, place one hand on my Rollator, the other on your hip and nonchalantly lean in as if you’re at the local bar. The reason we’re both balancing successfully is due to my death-grip on the hand-brakes! Next time, I’m dumping us both!

Number Two: The next time you park your car in that cushy area right next to a handicapped parking spot thinking you’ll avoid door-dings by encroaching onto the painted lines - - don’t be surprised to return and find the new pin-striping on your car is at the height of my handlebars!

Number Three: Here’s a shout-out to drug store cashiers everywhere. I’m using a Rollator for a reason! So if, when I’m next up and have to traverse the space from where I was waiting patiently to arrive at your counter area  - - it will take me a few seconds longer than your other customers. Simply hollering, “Do you have your CVS card?” - - Will not make me go faster! I’ll get up to you when I get up to you.

Now that four years have gone by and I’m still pushing mine, I’ll have to admit that I imagine myself a bit of an expert on the topic of Rollators. Driving by a yard sale I can spot one and pretty much I.D. make, model and age.

Just like race cars, the best designs seem to come from Europe. And here's a little secret -  - the measure of quality is in the wheels - - the bigger the better. Think “Monster Trucks,” with jumbo wheels that roll right over junked cars and other obstacles. A Rollator fitted with eight-inch wheels can take on lumpy grass, gravel parking lots and cracked cement ramps with the ease of an all-terrain vehicle.

So four years later, “Do I still like my Rollator?”

You bet I do! In fact, I have three! One in the car, one in the house and one on the back porch - - it all makes for seamless travel from one end of the property to the other. Just call me the 'pony express of Rollators!'

____________________________________
                                                                    
Interesting Factoid:
Did you know that the old Vaudeville joke at the top of this article - - the 1974 movie Young Frankenstein - - and the band Aerosmith all have something in common?

According to Gene Wilder, who co-wrote the script and played Doctor Frankenstein, the joke was added into the movie by Mel Brooks as a tribute to the old Vaudeville "talcum powder" joke. When the movie Young Frankenstein hit the theaters, the band Aerosmith happened to be working on its third studio album, Toys in the Attic (1975) and had already written the music for a song but couldn't come up with any lyrics to go with it.

After a while, the band decided to take a break and see a late night showing of Young Frankenstein, where the gag inspired them to write the hit we all know and love, Walk This Way.


Dagmar Munn
ALS and Wellness Blogger 




  "You can live a balanced life while living 
with ALS. It's a mindset."

A Visit to My Local Gym (ALS Humor)


Image: TinaTurnerBlog.com

Hi, friend! Thanks for stopping by!

I’m on the way to get my daily dose of endorphins - - those feel-good, body inspiring, stress-relieving chemicals that our brains release when we’re movin’ and groovin’ - - down at the recreation center - -and you’re just in time to join me!

What’s a woman with ALS, who gets around by pushing a wheelie-walker doing at a recreation center, you ask?

Well, it’s a proven fact that moderate exercise is good for people like me who have ALS, and it may even help slow down the progression of our disease. Plus, just getting out, showing up and being among other people is vital for our wellness and... there’s a whole lot of joy out there. So let’s go get it!

Despite the fact that I have ALS, walk with a limp and push a walker, I’ve discovered that down at the recreation center I blend right in. That’s because most of the residents in my community are retired and around here knee and hip replacement surgeries are almost a rite of passage. They see me as just one more middle-aged former exercise junkie in the midst of rehab. No questions asked.

Often we don’t know (or remember!) each other’s names, but that doesn’t matter. We treat each other as friends and take notice whenever a “regular” hasn’t shown up for a while. During idle chit-chat we may ask, “Where’s Sue? She’s the one who always wears the red jacket.” Or, “What happened to the fellow with the droopy shorts?” 

Occasionally, and only if we’re talking to a real regular, do we stray into more specific descriptions. Like, “Where’s Vitamin-breath Guy,” or “Haven’t seen the Gym-Buddies around for a while.”

I think there’s a pair of “Gym Buddies” in every workout room around the world! You know the ones: they meet up at the same time every day, follow the same circuit together on the weight machines and tell pretty much the same old jokes - - over and over and over.

If you want a lesson in multi-tasking, just watch the folks over on the treadmills. Their routine is to put a plastic molded device over the controls, place a book or magazine on the plastic shelf, then headphones over their ears followed by a press of the button to a tiny box clipped to their shorts. The treadmill starts up and they take off walk-jogging at an impressive clip.

I am in awe. They're walking while reading, while listening to music and in total disregard of the view out the windows - - a sweeping vista of our desert valley and mountain range!

Lucky for us it’s time to move on, so let’s head down the hall. I’ve got a special class I want to show you!

It’s on past the Bird-Watching class, past the French language class and beyond the darkened room with shadowy figures inside all moving in ϋber slow motion. I’ll bet you didn’t know, that a barefoot yoga student can actually maneuver pretty darn fast  - - especially sprinting down the hall when that “I-gotta-pee-right-now” moment occurs in the middle of class. More than once we’ve played the game of “dodge the woman with the walker,” as I brace for approaching impact.

Can you hear the music? We’re almost there! A few more steps and around the corner… ahh! The Latin beats of the ever popular Zumba class and my favorite group of smiling, happy, who-cares-how-you-move ladies.   

Thanks to a generous budget at the recreation center, this lucky Zumba teacher doesn’t have to haul around a cheap little old CD player - - she gets to use a professional-grade, D.J. ready, super-sound system and, she’s not afraid to crank it up!

Oh, I love to do hallway laps when Zumba is in session; my steps pick up the beat, my body feels the sway and it just makes walking fun! Like most Zumba teachers, she uses a CD that takes the class from warm-up all the way through cool-down. So I know that I need to be in my spot at precisely 10:10 A.M.; which is near the window to their room. That’s because at precisely 10:10 A.M. - - well, let’s just say you haven’t lived until you’ve seen 35 middle-age (and older!) women dancing their hearts out to Proud Mary, sung by Ike and Tina Turner!

“I left a good job in the city,
 Working for the man every night and day”

In tandem, they pump arms, side-step right and then to the left.

"And I never lost one minute of sleeping,
 Worrying 'bout the way things might have been”

The Zumba ladies are used to me being on the other side of the window and kindly share their joie de vivre and music with me - - the woman in out the hall dancing with her walker.

"Big wheel keep on turning,
 Proud Mary keep on burning,
 And we're rolling, rolling,
 Rolling on the river”

Then - - it happens!

This is what we’ve all been waiting for - - a loud smack on the drums, trumpets blare and suddenly the tune goes into double-time! No more set choreography or synchronization - - it’s so fast all we can do is stomp our feet, shimmy our knees, throw our arms in the air and gyrate. The glass in the window even begins to vibrate.

As the tempo takes hold… tennis shoes give way to imaginary six-inch platform high-heels. T-shirts and shorts transform into imaginary sparkly mini-dresses with fringe that shakes and shimmers. Sweat glistens on our skin… we stomp… we shake…

We see and hear the imaginary crowd that’s before us, there's a roar… and for a split-second…

                                                    we… ARE… Tina!

                                                            Ah-huh!

A final drum crash and the music fades away; along with fantasies, dreams and imaginations. Smiles are shared all-around and there’s even an acknowledging wave to me at the other side of the window.

Soon the familiar cool-down music begins and I move on. Yes, that was a shot of endorphins, but more importantly it was also a shot of JOY - - the joy of sharing an experience with others - - and the joy of being alive. And you can bet I’ll be back tomorrow!


Even if you have ALS... in Life… ya just gotta keep rolling on the river! 

Dagmar Munn
ALS and Wellness Blogger

My Visit to the ALS Clinic (ALS Humor)


The other day a friend complimented me on my positive attitude and asked how I managed to ‘find the funny’ in everyday things.

My reply? “I don’t go looking for it - - it finds me!

To help you understand, I’ll share a couple of stories from some of my past medical visits to the ALS Clinic. It’s run by a group of wonderful people who all have the best intentions for their patients.

It’s just that… well… Oh, read on.

My ALS clinic

The first stop is always the weigh-in and I’m in a good mood right off the bat. Why? Because a little-known consequence of having ALS is that we are encouraged to gain weight! Did you know, research has shown that ALS patients who are a few pounds overweight can slow the disease progression and live longer than those who are underweight?

For someone like me, who’s spent most of her life in a leotard and leggings, being given the freedom to plump up a little was music to my ears! True, I’m still a healthy eater and don’t go overboard at the buffet table. But all in all, it sure makes a bowl of chocolate-chip ice cream taste even better - - knowing it’s under doctor’s orders!

Speaking of doctors, my neurologist is an excellent, compassionate physician whose specialty is ALS and related conditions.  Her days are spent meeting with patient after patient, listening to their list of symptoms, and trying to meet their expectations of a solution. So, usually when I show up, full of quips and conveying no problems to speak of, I tend to throw her rhythm off.

Too much information?

“I’ve been feeling really good lately Doctor,” I recently reported. “These past couple of months I’ve felt happy and even find myself laughing a lot.”

Raising an eyebrow she asks, “Laughing?” Continuing on - - now in full doctor mode. “Are you laughing too much or at inappropriate times?”

GULP! - - I knew where she was heading. Bulbar ALS is a serious condition that can affect some patients; it’s recognized by uncontrolled bouts of laughter and/or crying plus the inability to control one’s emotions.

I answer carefully, “Well, I do tend to perceive situations differently now and am able to re-channel how I react. Rather than getting frustrated and angry…I try to find the humor in Life’s twists and turns and laugh it off.”

She presses on, “How about crying?”

“No, I don’t cry easily. Unless you count sad movies on the Hallmark Channel or those awful animal rescue TV commercials; those can make me tear up. But that’s all appropriate isn’t it? I can always hold it back when I need to.”

Actually, I’ve found a workable method, especially when the people around me wouldn't appreciate the fact that they are the ones contributing to my outburst. I follow the old adage - - to stop a sneeze, think of a purple cow - - but in my case, I stifle a laugh by thinking of wet farm animals. Yup, wet, miserable, standing in the rain farm animals; works every time.

Thankfully, the doctor agrees that sad animal TV commercials have the same effect on her, and I’m OK. But, she ends our visit with, “If you find you can’t control your laughter anymore, we have medication.”

Medication? To not laugh so much? The mere thought that something as fun, healthy, and stress-relieving as laughter has an edge and... if, you fall off the edge…?

I make a mental note to remain calm and in control for the remainder of the afternoon’s clinic.

Suddenly the Speech Therapist is at the door. Smiling broadly she enters the exam room with a hearty, “How’s everyone today?” At her heels are two students-in-training; full of effervescent energy, clipboards in hand and exuding happiness.  

Socks and singing

I always enjoy my sessions with this Speech Therapist. We found we share a propensity for wearing colorful, crazy socks. So our tradition is that at the very start of the session, before anything else, we show off our socks. Seems her two students have picked up on the sock fetish as well, so in unison we all pull up our trouser legs and spend the next few minutes oohing, ahhing, and giggling at our collection of designs. Over in the corner, my husband rolls his eyes.

What follows can best be described as a language lesson in jungle noise. With their stop-watches in hand, the format is for me to imitate the exact sound they emit. Together we make low, soft monkey calls. Then louder chirps and trills as if we’re parrots. Finally, I’m urged to yell as loud as I can, followed by several attempts at singing short songs. Once, when the phrase was: oo-ee-oo-ah-ah…my husband proudly chimed in from the corner with a “Ting-tang-walla-walla-bing-bang!”

The entire room cracks up!

Remembering my recent encounter with the doctor, I focused on a barnyard full of wet farm animals. Ahh…calm again.

They finish up with a few more questions and bubble out of the room.

The afternoon proceeds along with more visits; the Physical Therapist, Occupational Therapist, Dietitian, and representatives from the ALS and MDA associations. All are incredibly happy people who obviously love their jobs and helping others. More than once, I'm forced to invoke images of wet, soggy animals!

The magic cardboard tube

The last test of the day is a pulmonary function or, breathing test; administered by the Respiratory Therapist. He comes in and unpacks his equipment which consists of a handheld computer, a jumble of wires, and a “device” that looks like a small hair dryer. I’m supposed to blow into the nozzle end. Small disposable cardboard tubes fit into the nozzle and keep everything sanitary from one patient to the next.

By now, my poor husband has reached Level Orange on the husband-patience scale. For the uninitiated, that’s the same as “sitting on the husband's bench at the mall while waiting for your wife who is in the department store, hesitating over choosing the perfect shade of red lipstick.” You know… that level!

To combat boredom, my husband begins a light-hearted banter with the therapist, jokingly he states that the hospital could save a whole lot of money by using empty toilet paper tubes for this test rather than buying the pre-packaged ones. We are the therapist’s last appointment of the day…he’s obviously ready to go home too, so he relaxes and riffs right along adding that the tubes have two ends so why not simply turn them around between patients and double their usage. There’s more said, but it finally escalates to something along the lines of, “Why not just use the same tube for everyone? It’ll only be bad for the last patient of the day, who will have to put up with a soggy, wet tube…”

While they’re carrying along and chuckling I’m trying to stay calm and prepare for a deep breathing test.

Finally, it’s my turn - - I take the hair dryer into my hands, place my mouth around the tube and give a mighty exhalation.  I get a thumbs-up signal from the therapist. “Do it again,” he says dryly.

Once more, I breathe in, tube in my mouth…and while exhaling I hear my husband snicker. Completing the second test - - I glare at the voice in the corner.

“One last time,” I hear the therapist command.

OK...I take a deep breath, pull myself up tall in the chair, hold my breath, place the cardboard tube in my mouth, and.… hear my husband’s voice, “Hey, you’re the last patient… did you get the soggy tube?”

Amid the spittle, coughs, and laughs I completely lost it. The three of us shared several minutes of light-hearted laughing.

Sinking back into the chair and still giggling, I look to the therapist for help.

My brain in overload now. Where, oh where, are those darn wet farm animals? I couldn’t conjure up even one!

“I don’t think I can manage a third try,” I gasp.

“Forget it,” he chuckles. “Your first two were at a hundred percent anyway. Let’s call it a day and go home.”

So ends my example of finding the funny. 

Just to ease any worries among my friends (especially those whose lifetime career has been devoted to making others laugh), I won’t be seeking the “anti-happiness” medication anytime soon. Rather, I’ll just keep on letting the funny find me - - and continue writing about it, to share with you!

-------------------------------------------------
Dagmar Munn
ALS and Wellness Blogger







"Laughter is inner jogging."
Norman Cousins