Shake it out – week3

April is Parkinson’s Disease Awareness month and I’ve decided to mark it this year with a look back at some of my blog postings. I have over 100 postings since I began this new blog almost 4 years ago. I’ve been reviewing some of the statistics on visits to my blog, and I’m ready to shake out some of the results! Each week, I’ll reprint two posts – one selected from the most popular on line, and one from the least popular, based on number of visits. What makes one posting soar like an eagle, while another sinks like a stone? What makes one post come out smelling like a rose while another is an outright stinker? I’d be curious to get your thoughts! So without further adieu, here’s this weeks eagle or rose, followed by the stinker or stone.

In second place, from August 2015, with an exploration of the “Parkinson’s mask” and one Australian photographer who has used this as a creative starting off point.

STONE FACE

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The Parkinson’s mask.

The stone face. Robbed of emotion. A blank stare. This is what we call “the Parkinson’s mask”.  It is one of the maddening characteristics of Parkinson’s Disease. I’ve written about this before (see Keep your Requip, give me Photoshop! for example) but not too long ago I came across the work of an artist that I found profoundly captured the essence of this condition. Chris Crossley is a portrait and art photographer based in Victoria, Australia. He was diagnosed with Parkinson’s disease in 1997.

In an exhibit entitled “Concrete” (showing presently at Ballarat International Foto Biennale in Australia), Crossley uses an interesting technique where subjects, none of whom have Parkinson’s, were asked to dunk their faces in water and, as they rose, have them try to express a mood or emotion. In part, the aim was to, in Crossley’s words, “give the ‘normal’ person being photographed a small feeling of what the loss of control was like, even for  a couple of seconds, and for me to capture it”.

Crossley has, in my mind, done a superb job of capturing this. I find the images to be haunting and eerily familiar. I could certainly write more about living with this mask (and probably will 🙂 ) but I don’t think I could possibly capture it the way Crossley has. I’ve included a few more images below.

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On the other end, we have the second lowest post for number of visits – from May 2015 -where I reflect on the notion of “being positive” with PD. Was it the picture that perhaps scared readers off?!

GET HAPPY!

Photo on 2015-05-09 at 5.25 PM (1)

Forget your troubles, come on get happy. Gotta chase all the blues away.

Always walk on the sunny side of the street.

You got to accentuate the positive, eliminate the negative.

Don’t worry, be happy.

Just put  on a happy face.

In the last few years, I’ve spent more time in on-line support groups for people with Parkinson’s. I’m not sure if my observations hold true for others with a chronic disease but I suspect they do.  While the daily “rabble” may vary, there are certain consistencies – the motivational poster of the day, the prayer to a higher power, the pharmaceutical query and the ailment-of-the-day.

From time to time, there is a person who expresses despair or lashes out at their circumstances and this wicked condition called Parkinson’s. Yet, without a doubt, the overall emphasis or tone that is struck is to “be positive”. Don’t dwell on the negative. Seize the moment. Be active. Get outside. Come on, get happy!!

I can understand that. I realize that it’s important to our mental health to be positive. I get it.

But some days I don’t.

Some days I want to be angry. Some days I want to rail out against PD. Some days I wonder how I’m going to continue. Some days I can’t see my way past the pain. I don’t want to “get happy” – to placate my  condition or my feelings of hurt.  I don’t want to wallow in self-pity but I do need to acknowledge these feelings – even if I have no solution or resolution at hand.

So some days I do.

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Shake it out – week2

April is Parkinson’s Disease Awareness month and I’ve decided to mark it this year with a look back at some of my blog postings. I have over 100 postings since I began this new blog almost 4 years ago. I’ve been reviewing some of the statistics on visits to my blog, and I’m ready to shake out some of the results! Each week, I’ll reprint two posts – one selected from the most popular on line, and one from the least popular, based on number of visits. What makes one posting soar like an eagle, while another sinks like a stone? What makes one post come out smelling like a rose while another is an outright stinker? I’d be curious to get your thoughts! So without further adieu, here’s this weeks eagle or rose, followed by the stinker or stone.

The third most popular post was from August 2015 and touched upon what it feels like to have PD.

HOW DOES IT FEEL?

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by Flyaa- Watta, Tumblr

It really bugs me. It gets under my skin. It’s a certain feeling that I get with my Parkinson’s that I am consistently unable to explain in any coherent way. I’d describe it as feeling like being on edge – somewhat shaky and feeling this chaotic parade of bugs swarming below the skin’s surface of my legs and arms. It is episodic but maddenly perseverant. For someone trying to get a sense of what my life is like living with PD, getting this would be a good start! Yet, what I experience as an individual with PD can vary so much from other persons with Parkinson’s (PWP). There’s an expression I’ve heard that goes something like “If you’ve met one person with PD, then you’ve met one person with PD”(implying everyone ‘s experiences or needs are unique to them). PD is brutally intimate in that regard! Still, we all experience some common symptoms to some degree – stiffness and rigidity, slower movements, some cognitive change as examples. So, how does it feel to have PD? I recently read in a fellow blogger’s site (Parking Suns by Bruce Ballard) about a conversation between some PWP about how one might best answer this kind of question through simulation. Here are some of the activities they suggested for people wanting to get a sense of what having PD feels like.

  • wear a leg weight on one leg.
  • on the same leg, also wear a slipper that is a few sizes too big. This will help you to “drag a leg/foot.”
  • every two hours take a break and find a bathroom. Quickly, within one minute. This is what bladder urgency is like
  • when you wake up in the morning, walk backwards for the first 45 minutes until your meds kick in.
  • when the phone rings, simulate a freezing spell. Don’t pick up your feet to answer it; instead, drop to your hands and knees to try to crawl to the phone in time.
  • do not carry a glass filled with liquid because your tremor will make you spill it. Alternatively, try to drink from a full martini glass as a friend gently shakes your arm.
  • get a leather belt and a cheap serrated plastic knife like you’d use on a picnic. Try cutting the belt with the knife. This will simulate cutting meat.
  • hold a cell phone in your “affected hand” while a friend gently shakes your arm as you listen and speak to the person you’re calling.
  • hold a cell phone and try typing a text message with your lame hand while a friend gently shakes your arm.
  • to experience dyskinesia, move your torso right and left for 15 minutes without stopping.
  • on one hand wear a thick rubber glove like you’d use for washing dishes. Try picking out 85 cents from a handful of change. Then try to remove your driver’s license and/or credit card from your wallet.
  • try to type or text while wearing the same thick rubber glove.
  • if you’re right handed, unload the dishwasher with just your left hand while your right arm hangs listlessly by your side. (If you’re left handed, unload with your right.)
  • if you’re right handed and use a computer mouse, move the mouse to the left side of the computer and manipulate it with your left hand.
  • one i often complain about is the Parkinson’s facial mask makes my face look like it’s made of stone – cold, unemotional. My body gets more heavy and stiff like stone. Get a big bolder for your lap. Couple of rocks for your shoulders. Some stones for your legs. Heavy, dense, crushing stones. Not a rolling stone.

How does it feel?!

 

The third least popular post was from June 2015 touches upon the sense of smell for PwP.

IT’S ALIVE!

Still Alive by rrekz, deviantart

Shortly after I penned my last blog entry (eeeeewww, that smell !!, June 1 2015), I came across an article in The Guardian and, eventually a body of research, that suggests that the sense of smell is the “canary in the coalmine of human health”. A 2014 British study reports that losing one’s sense of smell strongly predicts death within five years. It suggests that the nose knows when death is imminent, and that smell may serve as a bellweather for the overall state of the body. The authors suggest two interesting reasons for this:

The tip of the olfactory nerve, which contains the smell receptors, is the only part of the human nervous system that is continuously regenerated by stem cells. The production of new smell cells declines with age, and this is associated with a gradual reduction in our ability to detect and discriminate odours. Loss of smell may indicate that the body is entering a state of disrepair, and is no longer capable of repairing itself.

The olfactory nerve is also the only part of the nervous system that is exposed to the open air. As such, it offers poisons and pathogens a quick route into the brain, and so losing smell could be an early warning of something that will ultimately cause death. Your nose knows death is imminent. ( http://www.theguardian.com/science/neurophilosophy/2014/oct/01/your-nose-knows-death-is-imminent) .

So, once you lose that sense of smell, within 5 years, you’re likely to be dead. Apparently, if I’m not dead already, the end is nigh!  The good news is, I won’t smell it coming! Read what this doctor said about the “smell of death”and you’ll apt to agree that this is a good thing!

There is a distinct odor to imminent death. I know that smell. I have seen patients come in to the hospital extremely ill, with such problems as sepsis, pneumonia, pancreatitis, etc and the really sick ones are usually unconscious. When you walk in the room, there is a smell — I don’t know quite how to explain it. But I call it the smell of death. It is definitely a sickening smell… not quite like urine or stool… just something different. 

I’ve seen a few patients come to the hospital with that odor.. and they would usually die within days. Sometimes, in the ED, I can walk past a room and know that patient will not live long. I wonder if others have noticed this? (http://sweetiedoc.soulcast.com/59247/Smell-of-Death#sthash.ewtDwJqm.dpuf)

This rather bleak picture I seem to be painting here shouldn’t be so dark since, like almost all symptoms of Parkinson’s, results are quite variable. I have been gradually losing my sense of smell over many years. I know others who report no real loss in this area at all. I don’t buy into the belief that my loss of smell is by any means a “death sentence” nor I am devoid of hope that future therapies, such as stem cell therapy, may be able to result in a rehabilitation or revitalization of my olfactory functions.

Right here and now, I may be living as one amongst the “smelling-impaired”, but as I lumber through my days, I know full well that I have the good fortune to be, in the words of a classic and prophetic doctor, “Alive! Alive! It’s alive! Alive I tell you!” (Dr. Frankenstein).

Shake it out – week1

April is Parkinson’s Disease Awareness month and I’ve decided to mark it this year with a look back at some of my blog postings. I have over 100 postings since I began this new blog almost 4 years ago. I’ve been reviewing some of the statistics on visits to my blog, and I’m ready to shake out some of the results! Each week, I’ll reprint two posts – one selected from the most popular on line, and one from the least popular, based on number of visits. What makes one posting soar like an eagle, while another sinks like a stone? What makes one post come out smelling like a rose while another is an outright stinker? I’d be curious to get your thoughts! So without further adieu, here’s this weeks eagle or rose, followed by the stinker or stone.

In fourth place, from February 2016, an exploration of medicinal marijuana and other hallucinogens!

EIGHT MILES HIGH

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a zeppelin over san francisco, futurowoman, deviantart

Call it luck or call it reason, but I just missed by a few years the sentinel plea of a generation by Timothy Leary to “tune in, turn on, drop out”. Still, the creative burst of writers, musicians and artists of that era have been a soundtrack to many  years of my life. Expressions of love, peace, community and equality – to name but a few – continued to reverberate in my early years.

As time past, I had more than a few blows on my psyche that may have dislodged or completely derailed such thinking – travails of a working life, the premature death of friends and a partner, the loss of extended family – but then came my diagnosis of Parkinson’s Disease some 16 years ago. Now, that was a freak-out! A real bad trip, man. Bummer.

Ever since, my days have been characterized by a different kind of drug – those of a pharmaceutical nature (see  Go Ask Alice  or Pump It Up ). Not those inspired by acid rock or a psychedelic-infused or melancholic nature or condition. Just a batch of prescribed concoctions aimed at addressing my PD symptoms (or side effects of the same).

But recent news has me contemplating whether that might be changing. There’s something in the air these days – could it be the winds of change or is the answer in fact, blowin’ in the wind? (that’s the last 60’s metaphor I’ll use I promise).

First, there was the news that many patients with PD were experiencing the benefits of medicinal marijuana. Studies have trumpeted it’s success at pain relief, issues of anxiety and as an aid for those suffering from sleep deprivation. More and more people with PD seem to be turning to marijuana for relief.

Then, I read today, of a new set of headphones that have been developed that stimulate the release of dopamine in the brain. They will pump music into your ears as normal, but at the same time, “will deliver a low-power electrical signal through your ear canal to stimulate the Vagus nerve – a nerve that runs from the brainstem to the abdomen and plays a role in the release of dopamine, a neurotransmitter that helps control the brain’s reward and pleasure centres”. In other words, if this works, just by listening to music on these headphones, we’re going to get high! How high is debatable given our dopamine- challenged condition.

Now, you might be skeptical that such an item as headphones could get you high but here was the kicker for me. This article appeared in a serious audiophile periodical and here’s what the seasoned journalist who wrote the piece said after testing out the headphones:

 I felt like I reached a personal high point. I couldn’t stop smiling or laughing. I was like, ‘Oh wow’. For about 5 minutes, my happiness level was a 10 out of 10. Then it got foggier, but I was still unusually happy for about an hour.”

Oh wow, man! (I know, I promised. Chill) Don’t bogart that joint, my friend! Pass it over to me! If anyone’s looking for me, I’ll be down in the rec room in my bean bag chair with my new headphones on. Make your way through that purple haze and that’s where you’ll find me. Eight miles high.

 

A word from our legal department: this blog entry is not written or reproduced herein, to encourage or propagate the use or misuse of any and or all legal or illegal stimulants such as cannabis or dopamine-stimulant headphones under any or all circumstances. Any representation by the author of any activities or recreational pursuits undertaken in said locations, under said influences, are fictional in nature and are intended for the entertainment of the reader. Thank you for your attention and understanding and excuse me while I kiss the sky.

 

At the opposite end, in fourth last place, from March 2016, a personal memorial. I urge you to click on the Requiem Soundtrack for maximum emotive response!

 

REQUIEM FOR SHAKYDAD

On March 7, 2016 I said goodbye to my beloved bug (cue Requiem Soundtrack – it’ll open in a new window and you can listen to this while reading:) ). This car has been with me almost as long as I’ve had Parkinson’s. Unfortunately, it was involved in an accident recently and sustained significant damage. The above picture, courtesy of Clive Baugh, is “us” in happier, younger days (Sept.2006). I’d pen a poem as a final requiem but, alas, nothing rhymes with orange…

 

 

Yep, that’s the entire posting! Pretty short and a tenuous link to Parkinson’s perhaps!

Gut instinct

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graphic courtesy of Brian Grant Foundation

The Brian Grant Foundation was established in 2010 by ex-NBA player and PwP Brian Grant. Since then, they have positioned themselves a helpful resource to the PD community and state that while “there is no cure for Parkinson’s, exercise, nutrition and a supportive community can help manage symptoms, maintain overall health and prevent other serious illnesses”.

Recently, they published an article that explores the possible connection between the gut and Parkinson’s Disease. It’s an area of study that, I must confess, I know little about. Yet, the ongoing, persistent and oft times frustrating gastrointestinal issues I and many others PwP face, would suggest some further enquires would be useful. I need to dig into the research being done in this area.

The full article, authored by Kathryn Jones, and published online by the Bran Grant Foundation, can be found here. I’ve reproduced a slightly-edited shortened version below. What do you make of this?

Even though Parkinson’s research has come a long way, scientists still don’t completely understand where, when or how the disease begins inside our bodies.

Researchers have studied repeated head trauma as a potential factor. They’ve identified a significant link between PD and exposure to herbicides and pesticides. Scientists have also explored genetic risk factors that might make certain people more predisposed to Parkinson’s than others. Credible theories abound but no concrete answers exist—yet.

The good news is that scientists are uncovering clues that may bring us closer than ever to a cure. New research has revealed that Parkinson’s may be linked to the microbiome, the trillions of microorganisms and their genetic material that live inside the intestinal tract.

ACTUALLY, THIS RESEARCH ISN’T ALL THAT NEW
The earliest evidence that the gut could be connected to Parkinson’s disease emerged more than two centuries ago from the English surgeon James Parkinson, after whom the disease was named.

In 1817, Parkinson reported that patients living with a condition he called “shaking palsy” all had one thing in common: constipation. He found that treating their gastrointestinal issues also seemed to improve their motor symptoms. Even today, doctors have identified constipation as one of the most common symptoms of Parkinson’s, affecting up to 80 percent of people living with the disease. In fact, constipation often precedes the onset of mobility issues.

And yet, for decades, most of the research into this disease has centered on the brain. This is how scientists were able to figure out that Parkinson’s patients tend to lose dopamine-producing neurons involved in many important brain functions including movement.

More recently, they’ve focused their research on the accumulation of alpha synuclein, a protein that twists into an unusual shape in Parkinson’s patients.

THE DISCOVERY HEARD ‘ROUND THE WORLD
One of the most significant “ah-ha” moments in Parkinson’s research to date occurred in 2003, when German neuroanatomist Heiko Braak and his colleagues at the University of Ulm proposed that Parkinson’s may actually begin in the gut instead of the brain.

Braak and his colleagues studied Parkinson’s patients post-mortem and found clumps of alpha synuclein not only in the brain, but also in the gastrointestinal nervous system that controls gut function. They began to see predictable patterns of the disease that started in the gut and ended in the brain.

But how did it get from point A to point B? Braak and crew theorized that the vagus nerve might be involved. The vagus nerve connects major bodily organs (specifically the heart, lungs and digestive tract) to the brainstem, which joins the spinal cord to the brain. In other words, it enables communication between the brain and gut.

Other studies have found that gut microbiome is altered in people with Parkinson’s disease. In 2016, scientists at the California Institute of Technology conducted an experiment where they removed microbiome found in the intestines of mice with Parkinson’s-like symptoms.

After these microorganisms were removed, motor symptoms improved. When they transplanted bacteria from Parkinson’s patients back into the mice, the symptoms returned.

SCIENTISTS REALIZE THEY’RE ONTO SOMETHING
Now this notion that the earliest stages of Parkinson’s disease may occur in the gastrointestinal tract is taking the medical community by storm. It’s a huge scientific breakthrough considering how imperative it is to detect and diagnose PD as early as possible.

And researchers are just revving up. In 2018, the U.S. Army Medical Research and Materiel Command awarded a four-year, $2.5 million grant to researchers at the University of Alabama at Birmingham (UAB) to investigate the role of Parkinson’s microbiome.

Scientists already know that microbiome is easily modifiable and could play a fundamental role in the treatment or prevention of many diseases. UAB’s goal is to figure out whether changes made to bacteria in the intestinal tract might alter Parkinson’s disease progression.

So far, the UAB scientists have analyzed fecal samples from hundreds of Parkinson’s patients across the country. They found that the microbiome found in the guts of people with PD is drastically different from disease-free individuals.

The microbiome also seemed to vary according to the person’s geographical location, which may explain how environment, lifestyle and diet factor into a individual’s biological system, including exposure to pesticides.

The UAB researchers also reported that Parkinson’s disease medications had a direct effect on changes in microbiome. This made sense considering the microbiome in our gut are partially responsible for metabolizing drugs.

But scientists aren’t quite sure whether medications change the microbiome in a specific way or how intestinal bacteria influences a patient’s response to treatment. And the question of how changes in the intestines drive neurodegeneration in the brain still remains a mystery.

 

April  Alert: April is Parkinson’s Awareness Month and I have special plans for my postings for the entire month – starting next week! I would be thankful if you checked them out and shared with others to help spread awareness!

SHE KILLED HER MAN, BURIED HIM IN A 12 FT HOLE IN THE BACKYARD, COVERED IT WITH A CONCRETE PATIO, WAITED FOR THE NEWLY-ACQUIRED LIFE INSURANCE PAYOUT, WHILE LIVING IN THE TURKS AND CAICOS WITH HER YOUNG GAY LOVER – WHO WOULD HAVE EXPECTED THAT?(with never-before read Bonus Features!)

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For long time readers of this blog, you may recall a posting that garnered a lot of attention. It followed musing (by yours truly) on the road to recovery after a fall. Recently, I suffered a similar experience that came with a hauntingly familiar echo to this original piece from January 2016. Here’s the original with all new never-before read bonus features in italics*

Being laid up after an accident, you tend to have some time on your hands. Too much time sometimes.

I don’t normally watch a lot of tv. Though it’s becoming more than I would like of late. When I do, I’m partial to a good series such as The Sinner, Luther, or Handmaid’s Tale. Or comedies such as Baroness von Sketch, Full Frontal, Key and Peele, etc. And of course, the news.

Recently, though, I’ve sunk to a new personal low. So low yet I’m enjoying the high! I’ve sort of become addicted to the NBC-produced show Dateline: Real Life Mysteries. The producers sure know how to work the audience and could easily stand accused of being melodramatic. The true-life and often times bizarre machinations of the characters draw you in. Or at least it has done so to the ailing-me.

With the assistance of a PVR, I’ve been taping the four or five episodes that appear as repeats each week. The show has been around for 25+ years and I’ve never watched it before so I’m somewhat concerned about what I’ve gotten myself into. Each episode is an hour long but, thanks to the PVR, I’m able to eliminate commercials and the plot re-caps that follow each commercial break, as well as the plot-twist teasers that precede each commercial set. My guess is there’s about 30 minutes in each show once you eliminate that.

And what a wallop they manage to pack into those 30 minutes – the look-back at the budding high school romance, the blissful early years of a growing family, followed by the all-too-quick dulling of the romance, the ensuing dalliances, and the fateful conclusion. Or the caring but tormented employee. Or the dark stranger in the dark suburbs. The pillar of the community reduced to a crumple. No matter what the situation, you can always count on a few interesting twists and turns to accompany the sad and woeful circumstances the real-life characters find themselves in.

Some of you may be surprised to read me regaling such fare. I don’t think I’m necessarily taking the position of trumpeting the show or others of it’s ilk, but I am saying that I find it interesting that I’ve been drawn into it’s web. My sense is that the mundane and drudgery of being stuck inside as I recover, combined with the cold of winter, have created fertile grounds. And today, once that ground has been worked over, it is even more fertile. Moreover, as the control or limitations brought on by PD exert themselves more forcibly, the invitation to “escape” and be parachuted into other’s lives in other exotic locales, is difficult to deny.

However, all is not lost. As I feel more able to get about, I already feel like I’m able to devote less time to tuning in to this show. More often than not, it’s the same one or two seasons on high repeats.As winter morphs into spring, which it inevitably will one day, I’m sure that the invitation to escape to the outdoors will be even harder to resist. And then, I’ll likely sever my relationship with Dateline. Sure, I may be drawn back for the proverbial fling or two in the years ahead – okay, so I was –but I’ve learned a thing or two from this show that will keep me in good stead. First, you can never be sure of what lies ahead. Second, enjoy the every day “ordinariness” of every day- we don’t need the drama that so many folks from this show have in theirs. And third, if you ever want to commit a crime like murder, don’t google “how do you commit murder?” on your computer. Or read blogs with titles like this for that matter!

Ok, back to to Lester Holt and Keith Morrison for the conclusion of Killing in Kissimmee: Murder in the Misty Moody Moonlight. Or would now be a good time to get Netflix?

 

*I’m sorry  but I wanted these all new Bonus Features to be issued in with flashing red letters in the corner of your screen but the blog hosting site charges  too much for this feature!

March Break!

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March Break is not just for kids. This week, with the help of Pitchfork, I take a break from the hustle and bustle of my blogging life (tongue planted firmly in cheek), fire up the stereo (or more accurately the computer), and take a trip down memory lane! How can one resist a list like this? Is you favourite here? Any missing? Enjoy and see you next  week for more PD pontifications!*

P.S. Pitchfork – How about a  “Play All” button please?

 

Click here for The Top 200

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* Editor’s note:    Apologies to my deaf readers – this is a very auditory blog posting! Please feel free to delete it 🙂 Many of the Youtube videos have a CC feature but more often than not, I find it’s not all that accurate.

** Editor’s note:    Apologies to my younger readers – this is an old guy blog posting – indulge me!

 

 

life interrupted

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Nature Portrait Background 01, AStoKo, Deviantart

I wanted to write a blog posting this week.

I wanted to.

But it seems all of my Parkinson’s symptoms flared up in the face of stress. My tremors magnified. My dyskenisis became more exaggerated. My stiffness weighed me down. My sleep was more disturbed, my gastrointestinal issues worsened. Combine this with the lingering affects of my boxing mis-adventure that I wrote about a few weeks ago, and you can imagine the kind of week I’ve had.

Yet, to write about it – to recount the disruption it has had – to even raise it in the face of what others are facing – seems petty.

Forgive me, but I am deeply saddened.

Our family received some devastating news this week when a former neighbour, and a good friend of our children, died while hiking in an urban wooded area. She apparently slipped on ice and fell into a ravine and the creek bed below. Tragic.

Particularly tragic when you consider it happened to such a young, vibrant, caring and considerate person.  She was just 24 years old. She was characterized by a bright smile, a positive nature, and quiet enthusiasm for life. She demonstrated a real sense of service to community – richly inherited from her parents and family. A family that she loved, and loved her so deeply in return.

That is a life truly interrupted.

RIP Laura.

 

Twilight Zone (of PD)

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Photo courtesy of ABC news (Australia)

Next month, CBS plans to reboot that early 1960’s classic sci-fi series The Twilight Zone. Rod Serling’s role as narrator will be assumed by comedian/film director Jordan Peele. I’m a big fan of the original Twilight Zone and of Key & Peele so I look forward to seeing what they come up with.

Coincidently, I’ve also noted of late some pretty strange stories in the Parkinson’s world. They had me questioning whether I had entered some kind of other dimension! Peele and his associates might find some good story ideas from amongst this crop. Ladies and gentlemen, I submit for your consideration – the Twilight Zone of Parkinson’s.

The Woman with the Red Light Bucket – Grace Winiecki spends 40 minutes each day with a red light bucket on her head — a device she claims is making a significant difference to her life. The 63-year-old was diagnosed with Parkinson’s disease 11 years ago and began her own light treatment, also known as photobiomodulation, last April. “I’m probably better now than what I was seven years ago,” Mrs Winiecki said.

Mrs Winiecki said since using red lights, she shakes a lot less, can dress herself easier, feels happier, lighter and laughs more. “I don’t think it’ll ever be a cure, but it definitely slows progress and improves some [Parkinson’s] symptoms,” Mrs Winiecki said.

“We’re getting a lot of good feedback from people who are using the lights, so it’d be a huge coincidence if they’re all getting better just because they’re wearing a bucket on their head.”  Full text here

Vampire Blues – so apparently, someone in the Parkinson’s community has got the idea that the blood of some young teens might be just what PwP need. Fresh, red, blood. Sadly, the FDA has had to report otherwise. Injecting young donor plasma to treat or prevent aging, as well as conditions such as Alzheimer’s and Parkinson’s disease, has “no proven clinical benefits” like those advertised and is “potentially harmful,” FDA Commissioner Scott Gottlieb said in a statement. Peter Marks, director of the agency’s Center for Biologics Evaluation and Research, joined him in issuing the warning…They continued and quoted the experts saying “Simply put, we’re concerned that some patients are being preyed upon by unscrupulous actors touting treatments of plasma from young donors as cures and remedies,” Gottlieb and Marks said. Full text here

You’re getting sleepy – you’re getting VERY sleepy. I must admit that I’ve heard of some strange uses of hypnosis but this one seems to be just a little beyond my grasp. In this testimonial video, a patient describes how her Parkinson’s symptoms have been relieved or eliminated through hypnosis. Oh, and did I mention, the mystical powers of the colour red are also cited. Full video here

Haka – on a slightly different note  (a much louder one at the very least) comes this battleground cry from Virginia. I think I get it, but it’s still a bit strange. And what colour is the scooter dare I ask? Full video here

 

to be continued…

 

Will that be Parkinson’s Ballet or Boxing?

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One in a series of Little Life Lessons Living with PD (or Short Shakydads for short)  

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Exercise is critical for management of Parkinson’s disease. I’ve read that before and been given that advice by no shortage of health care professionals. I’ve experienced the benefits first hand and also the downsides to inactivity. No matter what form you might choose, there is always a risk of an accident or mishap. I had one fairly recently in boxing where I hurt my eye, rib cage and shoulder. While the photo above gives me a degree of authenticity as a boxer, truth is that this could have just as easily happened in any other activity. My partner in a circuit workout started to lose his balance and fall and, while trying to prevent his fall, we both went down. I’m in the recovery room but I hope to “glove up” again soon (or toutou up if you prefer). Keep at it!

Run Backwards

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Courtesy of Justine Galloway

It can be frustrating for anyone when, after a period of time, whether through deteriorating health or simply aging, a change has got to come. Certain tasks or actions that were at one time routine, no longer seem possible. I’ve written about a few of these in previous posts. If you are fortunate enough to be tenacious, and think a little outside the box, there may be a solution at hand.

That is one reason I like this story from public radio WBUR in Boston. It’s about a young woman who confronts a physical challenge in a unique way. She also had a father with Parkinson’s and I like the interplay that is suggested in their relationship. Hope you too enjoy it. Follow the link to listen (or to read the transcript).

Why Justine Galloway Runs Backwards

living with Parkinson's Disease…and more!