Tag Archives: Michael J Fox

Let’s Get Dirty

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It’s a shame I’m not into bondage. Believe me, I’ve tried on a wide variety of apparatus in the privacy of our bathroom in front of a full length mirror. I’ve contorted my body into any number of positions, tried to follow convoluted instructions that have me attempting to insert Tab A into Tab B while depressing Clasp C. When I finally do break through and successfully secure each tab, clasp, strap and zipper, I face an even greater challenge. Getting the gear off.

I have been using the duodopa pump to deliver my Parkinson’s medication for over 7 years now. Long-time readers of this blog will be familiar with my lamentations on the awkward and heavy pump that I must transport with me for 16 hours a day. Almost every day I get so frustrated by this albatross that I just want to scream “I’m fed up with this f—ing pump”,  rip it off and be done with it! *

Initially, there was one single option for carrying around the pump – a chocolate brown vest. While not exactly a fashion statement in and of itself, it did get a number of hits and some serious blog attention in those early days – see Got my tight pants on.

In fairness, I suppose there were other options I could have explored for transporting this device – I could have  had my great aunt crochet me a sling to carry it over my shoulder or I could have gone to Paris and found myself a classy “man-purse” to add to my accessories. Or I could have forgone this entirely and just carried it around in my hand like a quasi-calculator-totting-geek. Yet I chose the brown vest supplied by the manufacturer.

With each passing year, my frustration with the limitations of the vest grew. Yet, as the clinical trial ended, and as the pump became more available and more popular as a treatment for PD, I felt buoyed by the fact that such an explosion of interest would surely be followed by a parallel development of a smaller, lighter pump. After all, we live in an age where technological advancements have yielded evermore compact and portable options in a range of devices. Apple, for example, unveils new cellphones every year and most times they are smaller devices with larger capacity. I’m not looking for the Duodopa  10 or the 10X but the Duodopa 2 would sure be nice.

I’ve heard vague rumours that a prototype for a smaller pump are “under development”. I’ve heard the same rumours for the past 3 or 4 years. I think my PD friends in parts of Europe have heard the same rumours in the nearly 20 years this same pump has been used there.

Instead, the steady increase in the use of the duodopa pump has netted not a smaller pump but a growing variety of options for carrying the pump. I’m sure I have every one of these (save the macrame sling!) and, while I welcome the increasing number of choices, there is no one option that is –  for me – the perfect one. It is certainly good to have a few options that one can alternate between. Why I now even have a vest in a different colour than brown – this one is a striking beige!

The latest accruement is an interesting one that arrived in the mail the other day in a plain brown package. It’s interesting in that it positions the pump in a whole new area. It’s an athletic bra-like accessory that holds the pump securely in the middle of the chest area. Off the stomach area and above or below the breast depending upon one’s cleavage and respective comfort.It also has a lot of straps. And buckles. And clasps. And zippers. And I can have it really tight or really loose or really really tight.

I’m pleased to have another option and I look forward to trying this one out. But why is it that I feel so dirty?!

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tight like that

 

 

* though after going a day or two without it, I am reminded of the benefits the pump provides – principally through the slow and continous release of the medication directly into my bloodstream.

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In debt? Having difficulties making ends meet? No worries! You too can profit from Parkinson’s! (or Ka-ching. ka-ching Part Two)

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Salesman, KateHodges, deviantart

My Google news alert coughed  up a doozy this morning. The headline read :

“Parkinson’s Disease Therapeutics Market Research Report Now Available at Research Corridor” The Republic of East Vancouver.October 7, 2016

The body of the article goes on to say that a group called Research Corridor has published a new study titled “Parkinsons Disease Therapeutics Market – Growth, Share, Opportunities, Competitive Analysis and Forecast, 2015 – 2022″. There’s not much content in the balance of the post but the reader is invited to “browse the report” via a link which I am graciously including at absolutely no cost to you here! Upon following this link,you may be so grateful that you will want to pay me for the tip but please consider it a Canadian-Thanksgiving-gift from me to you!

Should you not have the opportunity to visit the aforementioned site, let me give you the essence. For a mere 4,000 USD, you can get a subscription of sorts that will allow you to actually get the report wherein, presumably, you will be able to access data that has been compiled from, likely though not necessarily only, public data sources and neatly re-packaged under the a PD label, to support sales and marketing to the PD community.

Whoa. Wait a minute. That’s news?! Parkinson’s is an awful disease. There’s a growing PD population. It’s worldwide. How can we make some money off of this?  And how can we as Research Corridor make money off of those who want to make money off of people with PD? I, for one, am not buying (even if I could afford it 🙂 ).

Sell, sell, sell.

Happy Thanksgiving for all those celebrating this weekend!

 

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anyone see MJFF and Nike’s latest?   as Neil said, “ain’t singing for Pepsi”.

 

 

 

Back to the Future – the mixed tape edition

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death of the mix tape, a-ripe-heartatttack, deviantart

On a cold, dark street in a lonely part of town, just a few short months ago, it happened. My beloved 2002 VW bug was struck in an accident, suffered substantial damage and, before you could say “Man, I loved that car”, a 2014 Fiat had nestled in its place in the garage.

This hasn’t exactly been a thrilling, whirlwind romance. I’ve been in a serious, committed relationship with many of the cars I’ve had before but this time, it’s different. Still feels like I’m dating. Or cheating on the bug.

I miss the orange. Orange everywhere but especially the tire rims. I miss the turbo engine.  Granted, the new vehicle has a few features that one might consider more “Parkinson-friendly” – better sightlines, ease of entry and egress, automatic everything. Yet all of those are, quite possibly, eclipsed by the audio system..

The bug had a radio with a cassette player. No CD player, no “aux jack” input, no USB. A cassette player. Now, if you happen to be raised in an era where the cassette was king, that’s a good thing! I recall before I ever owned an LP, listening to AM radio with a portable cassette standing nearby listening for my favourite songs to come on. When I heard the first few bars, or even better when the DJ gave it an intro, I’d rush the small microphone to the radio speaker and hold it as steadily as I could for the “best” sound. At the end of the song, or worse when the DJ talked over the end of the song, I’d shut the tape recorder off and wait for another one of my favourites. These were, I guess, my first “albums” (the precursor to K-Tel’s collections). As time went on, my tastes in music and appreciation for sound quality (thankfully) improved. Tapes improved in quality and recording became more sophisticated. Hours upon hours were spent planning the songs and song-order to create just the right vibe.  Some of my most treasured sounds came from mixed tapes – made by, or for, friends, family, lovers.

Yet, in an instant, that was gone. I have no cassette player in the house. The new car does not play cassettes. Does not play CDs. You can plug almost anything into it I think and it’ll exude audible signals through the surround–sound speakers. Apparently, I can synch up a handful of devices to bluetooth and enjoy “hands-free hassle free” music, but that won’t get me a single moment from my mixed tapes “Charlottes Dance-Along” or “Bits of Stuff”.

The new garage resident also has a satellite radio system (that’s free for the first 3 months). It doesn’t actually receive a signal when  it’s in the garage but, get it out on the street and – wow – impressive- there are so many channels! As Bruce Springsteen said, “57 channels and nothin’ on” (I won’t mention that 24/7 Springsteen channel on this particular service). What I have discovered about satellite radio though is, if you look hard enough, and change channels frequently, you can – once and awhile – find some channels that play some of the same songs that I used to listen to on my primitively-made cassette tapes!

You can see what a transformative leap this has been for me. Virtually overnight, I went from being an old guy listening to old music on antiquated systems to being an old guy listening to old music on new systems but pining for the old ones! A back to the  future, or back from the future, moment of my own.

 

 

POST-SCRIPT: watch for next week’s blog on Spotify, Songza, iTunes music, the cloud, multiple platform streaming…OMG, I can’t keep up with it all!

 

 

 

This is a blog about Michael J Fox!

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Michael J Fox gets cake AND pie for his birthday and shares via Twitter

Michael J Fox, Mohammed Ali, Michael J Fox, Robin Williams, Michael J Fox, Linda Ronstadt, Michael J Fox, Janet Reno, Michael J Fox, Kirk Gibson, Michael J Fox.

There, that should get the attention of every search engine possible.

This is a blog about Michael J Fox – written on the occasion of his 54th birthday. Congratulation and happy birthday Mr. Fox! May you be blessed with many more! Thanks for all that you have done, and continue to do, for the PD community.

But, this isn’t really a blog about Michael J Fox. He and his  Foundation, to say nothing of his legion of fans, have a corner on that market. This is more of a blog about the cult of Michael J Fox, or, to be more precise, the cult of celebrity of Michael J Fox, as well as others.

A few weeks ago, someone posted online a Wikipedia list of “Famous People with Parkinson’s Disease”. It’s author seems to have conducted a significant amount of work to reference persons – both living and dead – who have had their life impacted by Parkinson’s. Politicians, actors, singers, professional athletes, authors – wow, they’re all there! Pretty impressive! Yet, I must confess, I found the list to actually be quite off-putting. I couldn’t make my way through the entire list but found myself skimming through the listings to get to the end and try to see the point. There wasn’t one though I’m sure one was implied.

The thing about celebrities “coming out” with a particular condition or cause is that it can be such an alluring way of getting attention for one’s condition or cause. Clearly, Parkinson’s Disease would not have been in the public eye without the attention drawn by the aforementioned Mr. Fox. Lance Armstrong did much the same for cancer as did Bob Geldof for African relief. I would concur that there are many benefits to having this type of association though, as was the case with drug scandal surrounding Mr. Armstrong, the cause can be left vulnerable to the words and/or deeds of one individual. Still, perhaps it’s a risk worth taking.

What perturbed me more about this list was the very fact that a “selection” was made and it was deemed worthy of publication. First, every week I meet new people with Parkinson’s. These are folks who are living with the disease. Their symptoms vary, as do their backgrounds, family situations, and support systems. Some have lived but a few short months with PD, some for many more years than I. Some are much more advanced in their condition, some less so. Yet, to a person, I am sure that not one of these folks have anywhere near the resources a  “celebrity” has at their disposal to combat their condition.

Further, the fact that someone with PD on this list was a “radio announcer” or a “reporter” or a “cyclist” suggests there is  more inherent value in their work than others. Frankly, as a former teacher, I know many more people working in that profession (as well as many more of the helping professions) that are more deserving of recognition for the contribution they make to our society than many of these “celebrities”.

So, today, while Michael J Fox celebrates his birthday, I wish him well. But my thoughts are with Sam – a 77 year-old man diagnosed with PD just 2 1/2 years ago whom I met through my dance class.  The last few months have not been good to Sam – he’s lost a lot of weight, his dyskinesia has dramatically increased, he is suffering from some cognitive issues, his speech has become weaker, and his mobility has been significantly impaired. Fortunately, he has a caring partner who is very supportive though he will undoubtedly be challenged as time go by. These are the kind of people we need to make lists of. These are the people whose stories we need to hear. These are the kind of people we need to support. Let’s celebrate their lives – these everyday celebrities!

a good time to die

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Dead Tired – Gopixpic

Originally published January 2, 2015

When first diagnosed with PD some 14 years ago, I remember being plagued for weeks by thoughts of my last days. I couldn’t deal with all of the horrors associated with end stage Parkinson’s. I still can’t. Yet, if there is any lesson I have learned, it’s to not precipitate about a future you cannot control. Further, as Michael J Fox has pointed out, there is little use in worrying about that now – to do so would mean you actually live through such horrors twice – once in the present and again when you actually arrive at that point.

Of late, though, as PD has taken more of a toll, and as I have seen friends and family dealing with issues of mortality, I find it hard not to drift back to thoughts of death and dying. Not in an obsessive way nor centered on my state of health in those “dying days”. More focused on consideration of how I am to live the rest of my years. What is it that makes my life valuable? What is it that I can offer that makes my life meaningful? How long will I want to live in advanced years with a declining body and mind?

Recently, I heard an interesting interview on CBC radio’s The Sunday edition with Dr. Ezekiel Emanuel, an oncologist at the University of Pennsylvania, who says that he wants to die at age 75. He is currently 57 years old, apparently quite active, has no terminal illness and no plans to commit suicide. Yet he says that he would be doing society and loved ones a favour by dying at 75. “A good life is not just about stacking up the years and living as long as possible. People need to focus on quality of life,” he says. “Setting an actual date for a good time to die helps you focus on what is important in your life.”

He says when he reaches 75 he will refuse all tests and treatments, including the blood pressure medication he takes now. He’s not suggesting people kill themselves at 75 but, rather, let nature take its course. As the CBC interview points out, it’s a controversial stance, but one that resonates in an age when medical science can prolong life, but often at the cost of quality of life.

If you want to hear the full interview, you can listen here.

So, what’s a good time to die?

PD in Prime Time

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Originally published on October 21, 2013

This fall, as the TV networks roll out their latest wares, I confess I had at least one show on my must-watch list. This September, Michael J Fox would be returning to NBC starring in a weekly comedy show called “The Michael J Fox Show”. My interest does not originate from his earlier acting career when he starred in syndicated shows such as Family Ties or Spin City nor from his many successful films including the Back to the Future series. While I admired his success, particularly as a fellow Canadian, these movies and TV programs were of little interest to me – just not my cup of tea.

Nonetheless, when Fox walked away from a very successful acting career in 2000, he did so in a dramatic and bold way. He publicly acknowledged that he had Parkinson’s Disease, informed a largely unaware public about how PD had affected his working life, and dedicated himself to spending more time with his family. Perhaps most dramatically, he took on the challenge of working towards a cure for PD within a decade. I have a tremendous respect for what he has done since “coming out” with Parkinson’s. Raising awareness of PD, establishing the MJF Foundation to fast-track research, lending his voice and support to the cause, and I’m sure sacrificing much of his personal and family life. For all of this and more he should be lauded.

In recent years, Fox has been making a gradual return to network television through guest appearances on programs such as Curb Your Enthusiasm, The Good Wife and Rescue Me. Now, in 2013, he returns with this new self-titled sitcom. I was so looking forward to seeing how PD would be presented in a respectful way but also infused with a good shot of humour. The pilot episode showed Fox had the ability to do this in spades. He is very talented and has a sharp wit. Regrettably, however, as the weeks have gone on, each show has featured less and less of this and more of the somewhat trite stories of odd characters ensconced in weak story lines. I don’t think I’ve laughed out loud since the 2nd episode. Fox is the clear star in this show – I hope he (and his PD) get to shine a little more brightly in the weeks ahead. If not, I fear there won’t be many weeks ahead.

And, perhaps it’s selfish, but as a person with PD, I’d like to see a little more of Michael dealing with the daily challenges of PD – at home, with the family, around town and at work. Not doing so presents a less than realistic view of life with PD and in a sense risks belittling PD symptoms and treatments. I know it’s a comedy, and some of these things can be less than comedic I suppose, but to ignore them does a disservice.

Finally, thanks to friends in Victoria and Chicago for sending me some links to what others are saying about the Michael J Fox show. Think you’ll find them of interest. If you find any more, send them my way and I’d be happy to add.

http://truth-out.org/opinion/item/19381-parkinsons-and-disability-have-an-image-problem-and-michel-j-fox-isnt-helping

http://www.suntimes.com/lifestyles/22942028-423/what-someone-with-parkinsons-disease-thinks-of-new-michael-j-fox-show.html