This is a blog about Michael J Fox!

CHFsZxvW0AEoRJ2
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!

Advertisements

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).

eeeeewww, that smell !!

10103344174_5c23be5010_z
Abstract Body Sculpture by Dock Vos, Flickr

The dank, dark hockey bag of an adolescent stuffed with sweat-soaked gear that ferments between games. The green compost bin that collects rotting food waste and percolates in the hot summer months. The spilt milk at the back of the fridge that has coagulated into a brownish-yellow sludge. The aroma in early spring rising up from a winter’s supply of dog excrement. Nauseously riding a packed hot city bus through Chinatown while your seat mate eats ripe durian. The urine-soaked stench of a run-down rooming house in a seedy part of town. The dental assistant’s gloves after cleaning a plaque-filled, grungy and bloodied orifice.

The perfume that wafts from the blooming lilac tree. The scent of fresh-baked bread from the bakery early in the day. The woodsy odour of the moss and cedar-covered campsite after a rain shower. The smell of a freshly cleaned, powdered and pampered baby. The pungent aroma of well-aged parmigiano cheese and a full-bodied glass of red vino. Hot-buttered popcorn served popping-fresh. Crisp linen brought in from a wind-whipped clothesline.

I once knew the difference. Today, they are pretty much all the same to me. For many people with Parkinson’s, sense of smell is one of the first things to go. In fact, for many, it comes as a precursor to their diagnosis of PD. Such was the case for me. I can recall not a total loss of sense of smell but definitely a deterioration through the years leading up to my diagnosis. Some  15  years later, it’s pretty much a done deal. I can drive by a freshly fertilized farmer’s field and feel like I’m at a florist’s shop. Or I can walk through a farmer’s market and it might just as well be a sterilized hospital ward for all my nose knows!

This is sometimes a blessing – sometimes a curse. Those sweet smells of life I can only experience as fond memories whereas my olfactory challenges give me an immunity to vile and rotting odours. It sometimes does present me with personal hygiene concerns as I wonder how we’ll I “cleaned-up” this time. On the other hand, I can use public restrooms with impunity and single-handidly orchestrate a full range household garbage duties. Need a dirty diaper cleaned? I’m your man! Need something retrieved from that abattoir dumpster? How deep should I dig?