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!
Growing evidence suggests Parkinson’s disease starts in gut
The GUARDIAN, JUNE 26, 2019
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 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 . The scientists have also identified the bacterial genes and enzymes involved in the process. Read full article here.
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.
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.
P. S. For some photos of the proceedings, click here
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!”.
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 grewup 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!
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.
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.
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 picks. As this is the final week, let’s further shake things up. This week I’ll start with the biggest stinker or stone to date followed by the eagle or rose – the most popular post to date!
The least visited posting to date comes from March 2016. Perhaps it was the topic – confusion – perhaps it was the format – confusing. Anyway you look at it, it was a flop!
REALLY SAYIN’ SOMETHIN’
I had something really important to say about this. I can’t recall what it was. I think it was related to…..no, it was….something…else.
And now, for the finale, at the polar opposite, a post from July 2015. This has proven to be the most popular to date which I’m happy about – it’s one of my favs. It’s subject, if it’s not clear, is apathy.
I DON’T CARE
When I was a first year University student, I took in a “Clubs Fair” where many different clubs were represented – a Chess Club, Ham radio group, student newspaper, student political groups of every political stripe, amongst many others. One group that caught my attention had a large sign emblazoned with the words “Do you Care?”. In smaller print, just below this beckoning question was printed “We don’t”. That, dear reader, was the pitch of the Apathy Club.
Now, my memory may have suffered the ravages of time, perhaps twisted some of the particulars. This may not be a totally accurate picture of what transpired at the Clubs Fair, but I know for certain that the Apathy Club was not one I would be joining!
Until now that is.
There are days when I find it extremely hard to get motivated to get myself moving. I don’t have the same drive or passion. I have my “to do” list that seems perpetually pregnant with tasks to do. I want to get them done, knock-off a few and diminish the list but more often than not, I’m eunuched. I can’t get it going.
I have a few bad habits – like for example, indulging in sweets – that I know, for the good of my own health, I should address. Yet, I don’t. I have perennial issues that arise but never seem to be resolved. For example, wanting to downsize but being unable to do more than a mere skimming instead of a real purge. I want to be successful in addressing these matters, but I just don’t seem to care enough to move the change forward.
This apathetic state is difficult to understand. I have always been one to be goal-oriented and to relish the sense of accomplishment. Perhaps those “to dos” or matters of import are not important enough or perhaps I feel somewhat defeated given recent failed attempts to follow through. Perhaps my PD has escalated to a point where such efforts are deemed pointless in the overall scheme of things. Or perhaps there’s another explanation.
In her blog last year, Bev Ribaud, says that “apathy can be a major non-motor symptom of Parkinson’s disease. Combine it with fatigue, another major non-motor symptom, and it’s no wonder we Parkies can be seen as lazy, disinterested or uncaring by friends, family and even strangers. What causes apathy in people with Parkinson’s? It is believed to be due to chemical changes in the basal ganglia part of the brain. Dopamine is not only the primary neurotransmitter for motor control and movement, but it is also necessary for goal-oriented behavior, enjoyment and motivation. In other words, dopamine is our “feel good” chemical and as the dopamine levels in our brain get less and less, we no longer enjoy the things we used to and we become more apathetic. It’s not that we don’t care, it’s that we can’t care. Our dopamine deprived brains just don’t work like they used to”.
Interesting. So perhaps I do care but, because I can’t care, I think I don’t care. Or you think I don’t care.
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.
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.
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?!
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.