My latest indignation

Courtesy of Michael Okun, X

A few posts ago (or more precisely over 7 years ago!) I wrote of the varied and many ways Parkinson’s has impacted my life. Sadly, many of these ailments go hand in hand with Parkinson’s Disease. Although each person’s own experience will be different, many with PD will experience some, if not many, of these. Here, from that blog, O Lord Won’t You Buy Me A Mercedes-Benz, is a copy of that list.

• dyskenisis (involuntary movement)
• impediments in walking (balance, stumbling)
• impaired hand-eye coordination and depth perception
• reduced visual acuity
• weakened voice
• blank facial expression( the PD mask)
• muscle cramping
• drooling
• dry mouth
• dental problems
• choking
• insomnia
• over-active bladder
• weight gain and weight loss (more gain than loss though!)
• loss of sense of smell and taste
• fatigue
• rigidity and restricted mobility
• postural problems
• weakened dexterity
• cognitive impairment
• mood changes
• depression
• social withdrawal
• gastro-intestinal problems
• colitis

As I noted at the time, I didn’t put this list out there to solicit sympathy or evoke empathy. I think you will agree that it is a clear demonstration that PD is much more than solely a movement disorder.

In the 7 years since I penned this list, how have these symptoms changed? Generally speaking, I continue to experience everything on that list yet, over time, some of these have become more severe while others might be described as annoyances – ever-present but I’ve learned to cope. Some I struggle with in private. Some bring more public indignation.

Besides significant restrictions in my mobility – brought on by advanced PD, waning effectiveness of PD medication and aging- I recently discovered a new and unwelcomed “twist” on my PD. I stepped out of the shower and caught a glimpse of myself in the mirror. While this “check in the mirror” may sound banal to some of you, my guess is that a lot of people with PD don’t spend a heck of a long time looking at mirrors. There’s too much PD has taken from us…too much scarring of our bodies already that we don’t need reminding of!

Nevertheless, this glance was concerning. I stepped up closer to the mirror, straightened myself to confront the visage that faced me. But I couldn’t straighten out. My legs were relatively straight. My arms, when not flailing about, could be settled into a straight position for a time. But my entire torso was tilted or leaning to the right perhaps 15-20 degrees.

Huh? What’s up with that? How did this happen? How long have I had this lean? Could I do anything about it? Was I destined to live out my years looking like a sideways Quasimodo?

As I was to learn, this is known in the Parkinson’s community as Pisa Syndrome and is defined as “a lateral bending of the trunk with a tendency to lean to one side. It is a frequent and often disabling complication of Parkinson’s disease” (Lancet, 2016). There is no clear cause for it nor is there a consensus on treatment. It may be reversible but again there are no clear strategies nor substantive evidence to lead to this conclusion.

I have never been of the mind that I should feel shame or embarrassment about the way that I look, move or walk. I’ve even enjoyed the odd moment like I experienced once at a festival where an assembled crowd parted on the field to make way for me pass. They didn’t know what to expect as I lurched forward unsure of my step and unstable in my walk and my flailing arms just barely holding on to drinks! I recognize that, as my movements become more restricted, more strange glances will come my way. Same too with shuffling feet and a variable gait. Now add a twisted torso. Pisa Syndrome has already made a marked difference in my appearance and one that I’m sure will bring me further consternation as time goes by. For the moment, if you’ll indulge me, I’m just going to avoid mirrors for a little bit.

Goes to show you never can tell

1950s-1960s Couple Man Woman Sitting On Porch In Rocking Chairs, Posterazzi

Who would have guessed that my self-imposed break from this blog would last not a month, not a year, but almost 5 years!

As frequent readers may recall (and there were at least a few!) I was experiencing increasing demands and changes in my Parkinson’s Disease after 20+ years. I also felt somewhat discouraged that there seemed to be very little significant progress being made in the treatment of PD  – certainly not in the elusive quest for a cure! Resources and community supports were changing. Social networks changed along with them and , of course, we would all experience  the devastating impact of COVID on our world. Increased socialization has been an especially heavy burden to bear for people with PD. 

Unfortunately, that isolation leads to feelings of loneliness, loss, doubts of self-worth, apathy and depression. I questioned the value of my blog and whether adding my voice would have some positive purpose or merely add to the cacophony of voices already clamoring on. After some time, I came to believe I had said everything I wanted to say. It had served its purpose and run its course. I could have taken the route that so many bloggers seem to take and that is to repeat the same, tired topics. Put a different spin on the same old. Add a new graphic to the same old. Nothing new to say? No problem – just go with the same old same old!

Of course, I was not going to go with the same old. I did need a break though. As time went on, I became less  inclined to write about PD. I wondered whether or not I’d ever revive the blog and, to be honest, I still struggle with that notion. Yet out of this apparent  incongruity emerges this post. Just me taking the time to share a few thoughts with you. C’est la vie say the old folks, it goes to show you never can tell!

Thanks for staying with me!

As Tears Go By

For a variety of reasons, I’ve been feeling melancholy of late. I’ve been having a difficult time putting “pen  to paper” to explain it but I’ve been trying. Perhaps it’s because I’m noticing more my PD’s progression. Perhaps it’s because I’ve had yet another fall that’s set me back. Perhaps its the thought of yet another fall (as in autumnal) to come – and the dreaded winter to follow – when summer is but a few days old. Perhaps it’s just an aging thing. I will attempt to tease this out more fully in a future post.

For the moment, I need to take a summer recess from writing my blog. I’ll continue to share bits of news I find of interest and appreciate if you’ll keep sharing with me. For now, it’s time to get outside. Get some sun. Have a great summer and see you back here in the fall!

P.S. How synchronistic that I get a Facebook notice the other day of  a “new” video from Marianne Faithfull – haven’t heard this in a while but it captures, at least in part, where I’m at these days!

More gut news

Two interesting studies released this week.

 

Growing evidence suggests Parkinson’s disease starts in gut

The GUARDIAN, JUNE 26, 2019

The latest findings, based on studies in mice, back up a long-held theory that abnormally folded alpha-synuclein might start off in the gut and spread to the brain. Photograph: Spectral/Alamy

 

Evidence that Parkinson’s disease may start off in the gut is mounting, according to new research showing proteins thought to play a key role in the disease can spread from the gastrointestinal tract to the brain.

The human body naturally forms a protein called alpha-synuclein which is found, among other places, in the brain in the endings of nerve cells. However, misfolded forms of this protein that clump together are linked to damage to nerve cells, a deterioration of the dopamine system and the development of problems with movement and speech – hallmarks of Parkinson’s disease Read full article here.

 

 

Gut-Dwelling Bacterium Consumes Parkinson’s Drug

Posted on NIH Director’s Blog June 25th, 2019 by Dr. Francis Collins

Scientists continue to uncover the many fascinating ways in which the trillions of microbes that inhabit the human body influence our health. Now comes yet another surprising discovery: a medicine-eating bacterium residing in the human gut that may affect how well someone responds to the most commonly prescribed drug for Parkinson’s disease.

There have been previous hints that gut microbes might influence the effectiveness of levodopa (L-dopa), which helps to ease the stiffness, rigidity, and slowness of movement associated with Parkinson’s disease. Now, in findings published in Science, an NIH-funded team has identified a specific, gut-dwelling bacterium that consumes L-dopa [1]. The scientists have also identified the bacterial genes and enzymes involved in the process. Read full article here.

A real movement disorder

toilet, wam, deviantart

When I write about living with Parkinson’s, I believe I can be trusted to speak openly and honestly about my condition. There are a few topics though that I have avoided.  I have been leery about writing on these somewhat sensitive and perhaps too personal. While I  have referenced them in other entries, they have never found their way clear to being the main topic of a post.

That’s why this week I’m glad I found a piece written by Christy McGhee and published by The European Parkinson’s Disease Association (EPDA) – a European Parkinson’s umbrella organization. It features an interview with , a dietician that covers a wide range of matters related to bowel movement problems associated with Parkinson’s.  She discusses how Parkinson’s can affect the bowels and shares tips and advice to prevent and treat the issue.

Bowel issues may not be the most commonly discussed symptom of Parkinson’s disease, but constipation and gastroparesis (delayed gastric emptying) can be real issues for some people living with the condition. However, there are several preventative measures, and treatments, that people with Parkinson’s (PwPs) can try. The EPDA spoke to Kathrynne Holden, register dietician and author of books including ‘Eat Well, Stay Well with Parkinson’s Disease’, to learn more.

How did you come to work with people with Parkinson’s (PwPs)?

I’m a registered dietitian (retired) with a Master of Science degree in Human Nutrition, and I’ve been specialising in Parkinson’s since 1996. That year, I first met a PwP and began researching the food-medication interactions and gastrointestinal problems that occur. I have continued to study these areas ever since.

My work has included counseling, research, consulting, public speaking, managing online Parkinson forums, and writing for both health professionals and the public on nutrition for Parkinson’s disease.

What do you feel are the main bowel issues experienced by PwPs?

Parkinson’s can affect the voluntary nervous system, which controls the skeletal muscles, such as those of the arms and legs. But it also can affect the involuntary nervous system, which controls the muscles that move the gastrointestinal tract, including the colon. The job of the colon is to receive the food residue we can’t digest, mixed with water. At this point, it is essentially diarrhea. Then muscles in the walls of the colon move this mixture along, removing most of the water, and leaving a soft, bulky stool that is easy to pass – a normal bowel movement.

But Parkinson’s can cause these muscles to move unusually slowly; while the water continues to be withdrawn, the residue moves very slowly or even stops. This leaves a hard, enlarged stool that is difficult to pass, which we call constipation.

In your experience, at what stage do people with Parkinson’s tend to experience these symptoms?

PwPs can experience constipation for years before diagnosis; in fact, constipation is considered to be an early sign of Parkinson’s.

Do bowel problems for people with Parkinson’s tend to be associated with any other symptoms?

Yes, hemorrhoids can be a result of chronic constipation. Also, some people find that their Parkinson’s medications fail to “kick in” with prolonged constipation.

Further, prolonged constipation can cause abdominal pain and swelling, and sometimes an extreme condition called “bowel impaction” or “fecal impaction.” The hardened stool becomes impossible to pass, yet the watery residue may flow around it, leading the person to believe they actually have diarrhea. Bowel impaction may require hospitalization, even surgery in extreme cases, but this is rare.

What are the best preventative measures people can take to avoid developing bowel problems?

Eating foods high in fibre, and drinking plenty of fluids along with those foods, are the first and most important methods. Insoluble fibres, such as the bran in whole-grain breads and cereals, are like little sponges. They soak up water, and hold on to the water all the way through the gastrointestinal tract. So, while water is being withdrawn from the residue in the colon, the fibre particles retain their water and keep the stool soft.

This is the very first step to take, because these fibres are found in whole foods, which also have vital antioxidants, minerals, and vitamins that support the brain as well as the body.

Drinking fluids has a bonus – besides keeping the stool soft, they prevent dehydration, which is all too common among folks with Parkinson’s.

What are the best ways for people with Parkinson’s to treat bowel problems?

Levodopa has been shown to help gastrointestinal movement for people in early stages of Parkinson’s. Aside from that, natural methods are preferable, when possible. Ask your doctor about these further steps:

• Prune juice can be mixed with Milk of Magnesia. The prune juice contains a natural laxative, while the Milk of Magnesia helps draw water into the colon to soften the stool.
• Fibre supplements, such as powders, wafers, etc. are useful. It’s important to take these with plenty of water at the same time, so that the fibres immediately soak up the water. Taking fibre without water can actually make a hard stool worse.
  Exercise is important, as it helps to stimulate the colon, increasing intestinal movement.
• Belly massage – gently massaging the lower abdomen in a circular motion may quicken movement of the colon.

If these don’t relieve the constipation, it’s time to ask your physician for further help. They may advise use of enemas or laxatives. However, always continue to eat a high-fibre diet and drink fluids.

Discussing bowel issues can be a sensitive subject – what advice would you give to people with Parkinson’s who feel reluctant to ask for help?

Remember that your team of health professionals is there to help you. They have studied the gastrointestinal tract and all the complications that can occur. They have helped many other folks just like you to overcome constipation and prevent other conditions, like bowel impaction.

Describe your concern, such as “I’d like to know why I don’t have a bowel movement very often,” or “I sometimes feel like I need to have a bowel movement, but nothing happens,” “I have pain and swelling in my abdomen. I haven’t had a bowel movement for over a week – should I be worried?”

This will help the doctor to understand the problem and determine how to best help you overcome constipation. They may need more information, so be sure to answer their questions as fully as possible. They can then help you with a safe and effective plan to relieve your bowel issues and prevent further problems.

Source: EPDA, 2019 See full article here.

 

With thanks

McMaster University   May 29 2019     photo: L.Bayne

Permit me to take a different path with this posting. This has been a heady few days for me of late and I feel compelled to share it with you. As you likely know, most bloggers write not for any degree of fame or chance to be in the spotlight or garner more personal attention. I don’t know why anyone seeking the spotlight would choose blogging as a platform anyway – it’s such a crowded and congested environment!

At any rate, my intention has always been to share my personal experience in writing about “living with Parkinson’s Disease…and more” . That’s what my intro some 6+ years ago. I think I’ve pretty much lived up to that intention except for the “…and more” part. I haven’t penned about that part too much. Today, makes up for that.

This past week I had the honour of being named to the Alumni Gallery at my undergraduate university, McMaster University in Hamilton, Ontario, Canada. The award is given annually to “alumni who lead interesting lives and make outstanding contributions to society”. My work on this blog was cited amongst my accomplishments, as was my past careers in teaching , social welfare and justice, and other community involvements.

The award was presented at a wonderful ceremony on campus where individuals from a variety of disciplines came together to pay homage to select alumni, as well as a few present students who are already making outstanding contributions. It was inspiring to hear the many contributions of this relatively small number of award recipients.

I was quite surprised by the award and I am indebted to those who submitted my nomination and the references. Perhaps even more so, I feel gratitude to the individuals and organizations that gave me the opportunities to accomplish any success I may have had.  Thank you to all of those who attended the ceremony, and the celebration that followed, for your support, your friendship, and your guidance.

With thanks,

 

Robert Kendrick

 

P. S. For some photos of the proceedings, click here

 

 

 

A cure at last!

Free at last, free at last! The liberating words of Martin Luther King immediately came to mind the moment I read the news! The headline jumped off the page.

“Doctors find cure for Parkinson’s…”

I know that I personally have been waiting almost 20 years for this news. Some of my friends even longer. And newly-diagnosed PwP (People with Parkinson’s) may be buoyed by such an extraordinary announcement.

So what new development can we credit for this astounding news?  Could it be successful stem cell implants?    The identification of a long-suspected pesticide that has been killing our brains? A simple dietary modification? Or perhaps a one-pill miracle drug that has been in development for years?

No, it’s simpler than all of that. Here it is my friends.

Now, lest you think this is some malarkey being sprung across us, you might want to check on the details of the article and the source. You can find it here .

While doubt may be attributed to an Irish press championing an Irish cultural tradition, the authors can indeed be venerated. It was actually an Italian study, with Italian participants. Yes, they were doing Irish dancing but the Italians who were deemed “cured” of their PD, were clearly not doing some other form of dance – not ballet,  not jazz, not “club”, nor any other form of cultural or heritage dancing. They were doing Irish dancing.

Sadly, not everyone in  this study was cured of their PD. The control group ( 12 people) received only physiotherapy and no one was apparently cured.  I sincerely hope these 12 are given the opportunity to take Irish dancing classes themselves in the near future or, at the very least, explore their own cultural history of Irish dancing. This ancient rarely-seen reel shows the real roots of the Irish reel in their homeland.

Lest you get  the impression that I am in any way disparaging dance as a prescription for PD, please understand, I am not. I have written in past postings about the benefits of  dancing for PwP (see Tiny Dancer ).  I have supported organizations such as Dancing with Parkinson’s, and know many people who continue to reap the benefits of dance. I personally do not know anyone who has been cured of their PD through dance (though I do not know any Italians who have a background in Irish dancing).

What I do know is that the internet brings me almost weekly news about a “cure” for Parkinsons. Foundations raise millions in a quest for a cure. It’s understandable that PwP would have a hunger for news of a cure. Yet, it seems to me, that a cure is not in the cards for the foreseeable future. I think Parkinsons UK is closer to the mark when they say, in response to the question “When will there be a cure for Parkinson’s”,  answers as follows:

We believe that a cure would mean that people could live entirely free from the condition. But because Parkinson’s varies so much from person to person, there may not be a single ‘cure’.

Instead we may need a range of different therapies that can be used in combination to meet the needs of the individual and their specific form of the condition.This mix may include treatments, therapies and strategies that mean we can:

• slow or stop the progression of the condition
• replace or repair lost or damaged brain cells
• control and manage particular symptoms
• diagnose Parkinson’s at the earliest possible stage.

This could involve both medical treatments such as drugs and surgical approaches, coupled with lifestyle changes, for example to diet and exercise.

Not quite as simple nor nearly as encouraging as the Irish dance but probably more on the mark. Unless your Italian, than I say “Andiamo! Riverdance!”.

from kondo to condo

Traveling Man, Conlaodh, deviantart

Since my diagnosis with Parkinson’s, I’ve known that eventually, it would have a significant impact on our accommodations and lifestyle. A year ago this week, we packed up our family home and took a big step towards scaling back our living accommodations. We left behind a modest-size bungalow and moved into a condo town house that’s perhaps half the size. We also left a busy suburban area for a small-town that feels less pressured and where we can walk to most amenities.

We were making this move to reduce the burden of maintaining a house while living with increasing demands or limitations imposed on me by Parkinson’s. Our large lot required too much maintenance.  Our ’50’s bungalow began to show its age and struggled against increasingly fierce weather events  – springing leaks in the roof and in the basement. The upkeep of the property became, largely for health reasons, too much of a burden to bear. On top of this, one after another, our children grew up and left home to pursue their studies and/or work. We were a family of five. Then a family of four .Then three. Then two (plus the dog…still there!). It wasn’t going to be easy to give up the “family home” or to leave the neighbourhood (and neighbours!) we had grown to care so much for.

And it hasn’t been easy. Nor has it been an overwhelmingly positive experience.

Despite all the preparatory work for downsizing, including the requisite consumption of  large doses of Marie Kondo’s “art of tidying up” musings, we still moved too much. A year later, we still have too much “stuff” and even less space to put it! Our new residence – never intended to be permanent – presents some physical challenges including no ground level entrance and some significant stairs. I’ve had a few minor tumbles on the last step or two but nothing major. Ultimately, this will need to be addressed in our next move.

On the other hand, I didn’t miss shovelling snow this winter and my spring yard duty checklist has been completely checked off (unfold patio table  and cafe chairs). We generally like our small condo space, the walking is great, and  I’m meeting some new folks in town and in the PD community. This is the best medicine for treating PD!

So here we are, one year later, and we’re left with mixed feelings about where we’ll settle. Fortunately, we have the time and resources and the experience of this past year to guide us moving forward. Now, if we could only get a visit from Marie Kondo – that would bring us real joy!

Other Voices

Photo courtesy of Parkinson’s Life

Regular readers of this blog will be familiar with my PD life experiences these last 18+ years (and I’m not done yet  : )  . Every once and awhile though, it”s good to hear from others.

A new podcast, Parkinson’s Life, by the European Parkinson’s Disease Association, has just begun. Their first episode was published this month and focuses on the topic of parenting with PD. It features two individuals who are both relatively new to the disease and at  the early stages. They are also pretty well resourced as well but, nonetheless, the conversation format and their personalities and approaches make for interesting listening.

It features Vancouver BC broadcaster Larry Gifford and Houston Texas blogger/ex “American ninja warrior” contestant Allison Toepperwein as they discuss family life with the condition. Many of the issues they raise I could easily relate to – though I experienced them in what seems like a life time ago when my kids were younger.

If you have a half-hour to spare, have a listen to this podcast here.

If you don’t, and just want read an overview, click here.

 

 

February 98, 2019

Goodbye to the snow, LImaria , deviantart

It’s not May in the part of Canada where I live. The calendar may say so. The garden centres bursting at the seams may suggest that it’s spring. The odd burst of snowdrops or crocus’ in the neighbourhood hint at spring’s arrival. On a few occasions I swear Ive even heard bird songs on my morning walk.

But it can’t be May. It is too cold. The winter jackets are still stuffed in the front hall closet. Sweaters and thick socks are still de rigueur. There’s yet another frost warning for tonight. Everyone is driving with their winter tires still on. Come on!

Now, one might say, “What good does it do to complain about the weather?” Or perhaps you’ll be offered up some sage advise like “Just wait for August – you’ll long for this kind of weather!”. Or perhaps someone will haul out that old chestnut “Everyone complains about the weather but nobody does anything!”.

Well, I may just be one person. And I may be challenged by Parkinson’s. My body aches and strains are magnified by the cold and this winter has just been too long. I, for one am not going to put up with it any longer. I’m taking a stand. I am only going to look once more at the 14 Day Long Range Forecast and, if I don’t see spring there, I will henceforth be adopting a Rip Van Winkle persona for the remaining days of winter. And winters to come.

Come spring!