Parkinson's Update

This coming May will mark the fourth anniversary of my Parkinsonism diagnosis.  The disease probably began presenting symptoms for at least a year before I finally took the symptoms seriously enough to consult with my family doctor, so it's safe to say that I've been living with Parkinson's for about five years now. 

Parkinsonism, like Autism, includes a spectrum of disorders.  It can be split into multiple categories, including Idiopathic Parkinson's Disease (the most common type), Familial Parkinson's Disease, Early-onset Parkinson's Disease (the type with which Michael J. Fox is afflicted) and even Juvenile Parkinsonism, which starts in childhood or adolescence.  

Then there are multiple types of brain disorders which resemble Parkinson's Disease but involve different regions of the brain than the basal ganglia, which is the region affected by the more common varieties of the disease.  These include Progressive Supranuclear Palsy (or PSP), Corteobasal Degeneration (CBD), Dementia with Lewy Bodies (DLB) and the nasty Multiple System Atrophy (MSA).

Finally, there are "Secondary Parkinsonisms", which are Parkinsonisms caused by external factors such as medications, exposure to certain chemicals, head injuries or strokes rather than unexplained brain degeneration.

These Parkinsonisms can manifest in several ways.  The most common symptoms are tremors, slow movements, rigidity of muscles and trouble balancing and/or walking.

Parkinson's can also affect cognitive ability and, in my case, I fear that it has.  I find myself having difficulty recalling the names of well known people such as actors, musicians and politicians who aren't in the news every day (although I sometimes wish that I could forget about Donald Trump!)  I can usually recall the name eventually but, at first, I'll often have a clear mental image of the person that I'm thinking of, but I just can't recall his or her name.  I'm not talking about obscure people, either.  Some actors' names that I've had trouble recalling include Alec Baldwin, Russell Crowe and Sandra Bullock.

When conversing with others, I find myself mentally groping for words much more than I used to which, in turn, causes me to stammer.  When I do recall the word that I'm looking for, I sometimes have trouble  enunciating it.  My speech enunciation problems are related to the drooling that I've spoken of earlier.  Try speaking with a mouthful of saliva some time and you'll understand what I mean.

Perhaps you are thinking to yourself, as you read this, "Gee, Halmanator, your vocabulary seems pretty good to me."  I do pride myself on having above-average writing skills. The degradation in my ability to communicate isn't as apparent in my writing because you can't see the number of times that I paused while trying to think of the correct word or phrase, or trying to remember a name or a term.  Of course, enunciation isn't a factor, so I'll never shlur my wordsh or sta-sta-stammer when I write. 

I've been at my current job for going on seven years now.  My boss and I get along well and my annual performance reviews have always been very good.  She made the following comments in my performance review for the past year:

"Andy is very knowledgeable and a great resource.  I am starting to see Andy struggle with his level of comprehension when working on the finer details in projects and day-to-day issues that require a more detailed approach to resolve ... Andy puts in a great effort but sometimes needs someone to check for accuracy with the small details."

Well, at least she sugar-coated it somewhat.  She didn't comment that I'm taking longer to complete my assignments, but I know that to be the case as well.  I should note that my boss is aware of my Parkinson's diagnosis, so she understands that it's the disease that's causing my professional lapses as opposed to any apathy on my part.  

To illustrate a point that I made just before, the word "apathy" didn't come to me immediately.  I had to stop typing and think for several minutes before my brain was finally able to retrieve it.  Had I been speaking to you verbally, it would have come out something like "I should note that ... my boss is aware of my Par-Parkinshon's diagnosis, s-so she understans that it's the disease that's causing my profeshnal lapses as opposed to any ... uh .... any ... oh, what's the word I'm groping for?  ... Apathy!  As opposed to any apathy on my part,"

Getting back to memory lapses, there have been times, at work, when I've needed to revisit a program that I know I've worked with before, and yet I've had to re-learn how it works.  I've even forgotten how some of the changes that I myself made to programs work.  It seems that the moment I complete a task, my brain erases it from my memory before moving on to the next task.  Oh, I don't completely forget what I've done.  When reviewing it later, it does come back to me, so it is still buried in my deeper memory, but it seems to have been erased from that memory which is readily accessed on demand.

I'm taking steps to mitigate these problems.  I read a fair bit and, when I'm alone and no-one can hear me, I read aloud to practice my enunciation.  I'm going to try posting to this blog more often as well (yeah, I know, you've heard that one before!)  Writing on a regular basis may help me to retain my vocabulary, not to mention stimulating my creative pathways.  At work, before declaring an assignment as being completed, I will try to review the original request and everything that I've done, making sure that I haven't missed or forgotten anything.

Hopefully, with the help of a few mental disciplines, I can minimize my cognitive deterioration, if not turn it around.  My goal is to see something akin to the following on next year's performance review:

"Andy has demonstrated increased meticulousness over the past year. His work has returned to its former quality and it has not been necessary to check it for mistakes or omissions.  Well done, Andy!"

Parkinson's Update

It's been over a year and a half since I wrote in this blog about having been diagnosed with Parkinson's disease.  I had said, at the time, that I didn't intend to turn this blog into a "Parkinson's blog" and, true to my word, I haven't dwelt upon the subject (as the virtual hecklers in the audience point out that I haven't dwelt upon or even written about very many subjects at all!  Well, this post may over-compensate for my reduced verbiage of late.  All I can say is, you asked for it!)

Well, more than a year and a half has gone by, so I thought perhaps my regular readers (both of them!) might like an update, so here it is.

Overall, my condition has stabilized somewhat, although there has been some notable deterioration.  While I never kept track of my typing speed in words per minute, I'm certain that it has slowed somewhat.  I unintentionally type a lot more double letters than I used to and my fingers just don't move as quickly and gracefully over the keyboard as they once did.  For a computer programmer who has been touch typing throughout his career and even before then (I did take a typing class in high school), this has been noticeable.

Related to the typing problem, my use of computer mice has developed an irritating problem as well.  I'm constantly clicking my right mouse button unintentionally.  I tend to rest my right ring finger on the right mouse button as I move my cursor around the screen, but that finger has developed a tendency to twitch, or to rest on that right mouse button just a bit too heavily.  Most computer users will understand that right-clicking one's mouse is often used for alternate functions such as popping up menus or cancelling commands, which means that I often end up doing things that I absolutely did not intend to do.  Thank heavens for the undo function!

While I've always had a slight tendency to stutter or stammer somewhat, this seems to be getting worse as well.  Speech impediment is another common Parkinson's affliction.  In my case, I think it's a combination of a reduction in the ability to coordinate my mouth and tongue movements, as well as an increased tendency to grope for words that used to be at the tip of my tongue.  Sadly, Parkinson's can affect cognitive functions as well.  I'm hoping that isn't the case with me (hey, we all have trouble thinking of words from time to time, especially as we get older).  Interestingly, I've had very little trouble formulating this blog post which suggests that it may be more my mental speed that's been affected rather than my mental capacity.  Sitting here, typing, I have more time to compose my thoughts and form them into sentences than I would if I were speaking off the cuff.

Perhaps most annoyingly, that embarrassing symptom of uncontrolled drooling that I'd mentioned in my original post about Parkinson's has worsened.  This is a common Parkinson's affectation, medically referred to as sialorrhea.  See, everyone's mouth constantly generates a certain amount of saliva, even when we're not eating, and most of us just swallow it automatically without even being consciously aware of doing so (yes, that includes you.  Have I grossed you out?)  Parkinson's can interfere with automatic reflexes like this so, in my case, if I don't make a conscious effort to swallow my saliva every so often (sounds even more gross, doesn't it?) it runs out of the right side of my mouth.  The problem worsens when I'm focused on a task (like doing my job at work) and not paying attention to what's happening in my mouth.  This can be embarrassing even if no-one actually sees it happen, because the saliva tends to land on my shirt and leave faint rivulets and trails as it dries.  I've actually started preferring to wear shirts with fabrics and patterns that don't show these as clearly as others.  I must say, the medical establishment hasn't helped by giving the condition an embarrassing sounding name.  Quick, what other medical conditions can  you think of that end with "...orrhea"?  I can think of two, right off the top of my head, and neither is usually mentioned in polite company.

My neurologist has suggested a few remedies for this.  First she prescribed a medication called Cuvposa.  This is a liquid, originally intended for people afflicted with cerebral palsy, which reduces or eliminates drooling by inhibiting the production of saliva.  Trouble is, it apparently inhibits the production of all sorts of bodily fluids.  Just a few of the long list of potential side effects include constipation, bodily heating (because the sweat glands stop working), dry mouth, nasal congestion, headache, vomiting and shallow, rapid breathing.  In short, Cuvposa dehydrates the person taking it!  I quickly decided that the side effects were likely to be worse than the drooling, and rejected that option without even trying it.  I filled the prescription, but the bottle sits, untouched, in the medicine cabinet.  

Because I did fill the prescription, I also learned that a 473 ml bottle of the stuff costs $700!  No, you did not misread that.  Seven hundred! That's an expensive way to dehydrate myself.  Fortunately, the cost was covered by my employer's medical plan, but it does have a yearly limit and, at $700 a bottle, it wouldn't take me long to get there.  This smacks of a drug company that's recouping the cost of making a medication that has a low sales volume on the backs of those few people who require it and therefore have no choice.  Jeers to Merz (makers of Cuvposa).

The second thing that my neurologist recommended was a nasal spray called Ipravent.  This is intended to stop a runny nose but I guess my neurologist reasoned that if it reduces nasal mucous, it might also reduce saliva as well.  I was directed to spray it under my tongue rather than into my nostrils.  I agreed to try that and I can report that I've not had any undesirable side effects, nor any desirable ones, such as reduced drooling.  It simply doesn't seem to work.

The third option suggested by my neurologist was Botox injections into or near the glands that produce saliva.  I guess the idea is that Botox can reduce the flow of saliva by puffing up the saliva ducts in the same way that it reduces wrinkles by puffing up the skin.  I read up on it.  It has been shown to be effective and seems a low-risk option which can always be reversed by simply stopping the Botox injections (which need to be repeated every three to six months).  I'm considering trying that.

So, how have I been managing my Parkinson's, you may wonder?  Well, I regularly take levocarb, which is the go-to medication for Parkinson's.  That helps to mask the symptoms by giving my brain an infusion of the dopamine that it seems incapable of creating in sufficient quantities on its own.

More interestingly, I've been referred to an organization called CARESPACE Health & Wellness where I've enrolled in a special exercise program for Parkinson's sufferers called PD SAFEx.

CARESPACE is a privately run organization which offers programs to improve both health and wellness  with the help of physiotherapists, kinesiologists, chiropractors, dieticians and psychologists, to name but a few.  It's not exclusively for Parkinson's sufferers but it is run by Dr. Quincy Almeida, who has specialized in the study and treatment of Parkinson's for several years, and who developed the PD SAFEx program.

PD SAFEx is a twelve week program designed to slow the progression of Parkinson's disease through the use of physical exercises aimed at retraining the brain to correctly interpret the sometimes distorted feedback that it receives from the body's proprioceptors.

Proprioceptors are sensory receptors that provide the brain with feedback about what the body is doing, including where everything is positioned in space, what muscles are in use, what parts of the body are moving and how they are moving.  Dr. Quincy's theory is that the central problem with Parkinson's is the brain's inability to correctly interpret the information that it's getting from the proprioceptors.  

This has caused Dr. Quincy to see Parkinson's in a different light from that of the traditional medical establishment.  For example, he doesn't see a trembling hand, one of the most common indicators of Parkinson's disease, as a "symptom" but, rather, a coping mechanism that the brain is using to counter a lack of feedback.  With Parkinson's, the brain is unable to determine the hand's position in space, so it sends out signals that cause the hand to tremble (sort of the brain's way of asking the hand "where are you?")  This trembling strengthens the feedback signals sent by the proprioceptors until the brain says "Ah!  There you are!"

The exercises in the PD SAFEx program are designed to teach the brain what feedback to expect in response to specific movements and thus improve bodily control as well as reducing the need for over-compensation strategy such as tremors.

So, for the TL;DR version (which, admittedly, I should perhaps have given at the beginning of this post), I've accepted Parkinson's as a permanent part of my life.  I'm learning to cope with the symptoms as best I can, while working to control or reduce them wherever possible.  I do feel that fate has led me to the right professionals who are helping me to succeed in this.

I'll close with a special shout-out to Dr. Quincy Almeida who, besides being extremely knowledgeable about Parkinson's disease and empathetic to those living with it, seems to be just a nice guy in general.

MJF Disease

I had started to notice a number of physical changes in me that I largely wrote off to aging; after all, I was less than a year away from completing my sixth decade on this Earth.  

To begin with, I had started to slow down.  Everything seemed to take longer than it used to.  Take shaving, for example.  It suddenly seemed to take an inordinate amount of time to cover the lower part of my face with shaving cream.  

Formerly simple activities, like putting on a jacket or coat, suddenly became more difficult.  As I stuck my arm into my jacket sleeve, the sleeve of my shirt would slightly catch on the inside of my jacket liner, and even that slight resistance caused my whole arm to tremble slightly.  Pushing my arm all the way through just seemed harder than it should be.

Most disconcertingly, I had begun to notice that my hands would tremble slightly when I was sitting at rest.  I could stop the trembling by concentrating on relaxing all of the muscles in my arms and hands but, if I wasn't thinking about it, if I just sat normally, my hands would invariably start to tremble.

Months went by and the anomalies didn't seem to go away.  In fact, they seemed to worsen somewhat.  And new anomalies began showing up.  Most annoyingly (and embarrassingly), I started drooling out the right side of my mouth from time to time, and I didn't seem to be able to stop it.

Finally, I got concerned enough to see my family doctor about it.  She ordered a full spectrum of blood tests, all of which came back normal.  "I have good news, and bad news," she told me; "The good news is that I can't find anything wrong with you.  The bad news is that I can't find anything wrong with you, so we still have no explanation for the trembling hands, etc. that you've been experiencing.  My next recommendation would be to refer you to a neurologist."

Wow.  A neurologist.  That's a brain specialist, assuming that my vocabulary is still unaffected.  Does this mean that the problem might be in my brain?  That would be a bad thing.  I need my brain!  Appearances to the contrary, I use it quite a bit!  What could it be?  Parkinsons?  Lou Gehrig's Disease?  A malignant brain tumor?  (Answering myself in my best fake Arnold Schwarzenegger accent: "It's not a toomah!")  No matter; I had started down this road and I wasn't about to turn back now.  So my doctor made an appointment with a neurologist for me.

After allowing me to tell her, in my own words, why I was there and what kind of symptoms I had been experiencing, the neurologist began by asking some probing questions:

Do I smoke? (No).  Have I ever smoked? (Not regularly).

Do I drink?  How much?  (No, really, how much?)

Any recreational drug use?

Do I ever have any strange dreams?

Do I ever "act out" any of my dreams in my sleep?

How's my libido?

... and so on.

She then proceeded to have me do a number of tests, both physical and mental:

Repeat the following sentences / sounds after me.

Follow my finger without turning your head.

Point to the ceiling, then the floor, then the door.

Which hand am I waving?

Mimic my hand movements.

What is the object that I'm holding called? (A ball-point pen).

(Pointing at the tip of the pen) what is this part called?

(Removing the cap) what is this part called?

Name the months of the year in reverse order.

Count backward from 100 by sevens (most of the people I've told about this admitted that they weren't sure how well they would do at that one either).

... and so on.

I had expected her to suggest a CAT scan or some kind of brain X-ray, so I was a bit surprised when, having completed the tests, she told me "I am seeing some kind of Parkinsonism".

Parkinsonism.  As in Parkinson's Disease?  You're telling me that I have Parkinson's?

Truth be told, I wasn't taken completely by surprise.  I had suggested, jokingly (I thought) to some of those with whom I had discussed my symptoms that maybe it was Parkinson's.  But I wasn't really serious.  After all, Parkinson's is one of those afflictions that only happens to "other people", right?

The neurologist was, generally speaking, very thorough and professional.  Her only questionable action was to take my blood pressure after the aforementioned conversation and then commenting that my blood pressure and heart rate were "somewhat high".  I couldn't resist pointing out that it might just be a physical reaction to just having learned that I have an incurable, degenerative brain disease!  (Duh!)

She prescribed a drug called Levodopa.  Funny name, but the "dopa" part comes from the chemical dopamine, which is not secreted in adequate quantities by the brains of Parkinson's sufferers like myself. The drug apparently tops up my dopamine levels for me.  I have an appointment to see her again in about a month at which time she will assess how I'm responding to the medication.  This will apparently tell her more about what flavour of Parkinson's I have (apparently "Parkinson's" is an "umbrella" term that includes a whole spectrum of afflictions), how far my Parkinsonism has progressed and she will make further recommendations at that time.

In the meantime, I of course got into full Google mode and began researching Parkinson's.  One of the best resources that I've come across is the Michael J. Fox Foundation website, which has all kinds of great information and resources, including a downloadable pamphlet especially for newly-diagnosed Parkinson's patients like myself.

While I don't intend to turn this blog into a "Parkinson's" blog, I will likely be posting updates that I think may be interesting to my readers.  In the meantime, I'm asking all who know me to refer to my condition as "MJF Disease" rather than "Parkinson's", just because Michael J. Fox is much cooler than James Parkinson, even if James gets the credit for first identifying the disease.

Coldfinger

Did you hear about the guy who who made himself a prosthetic finger? I came across the story in the local section of the paper, which is in itself a bit odd, given that I live in Ontario and the man in question lives in Moncton, New Brunswick. To paraphrase Douglas Adams, apparently this is some strange new usage of the word "local" with which I wasn't previously familiar.

According to the story, Richard Roy, a 44-year-old construction worker somehow contracted a particularly nasty infection in his hand which ended up costing him the index finger. When he found that the cost of an actual medical prosthetic would run about $10,000 he decided to save himself a few bucks and make one himself. Heck, how hard could it be, right?

And so it was that Roy went into his work shop and fashioned a prosthetic index finger using the foot peg from a Harley Davidson bike, a clamp used for holding down a truck cap and even parts from an R/C toy car so that he can make the finger flex and grasp objects by flexing his hand. How he intends to fasten the finger to his hand isn't made clear, but I imagine some good old-fashioned Krazy Glue, or maybe some duct tape, should do the trick. I'd say that Roy is obviously a fan of the Red Green show.

Not to belittle Roy's ingenuity, I'd say his home-built prosthetic is actually quite an accomplishment. From the picture, I'd say that, aside from allowing him to grasp and hold objects, it also looks like it might double as a handy bottle opener. You have to admire that! If you're ever at a party and want one of those annoying foreign beers whose bottle caps can't just be twisted off like our handy Canadian beer bottle caps, Roy's your man. He does admit, though, that his guitar playing days might be over for good, what with the lack of feeling in the prosthetic finger. On the other hand, if he can learn to switch hands when playing the guitar, he might be able to use the finger as a handy pick.

While I don't wish to make light of the underlying tragedy, there's a certain coolness factor in all of this. Isn't this how Darth Vader started out? Before you know it, Roy could be deflecting laser bolts with his palms or throttling people by remote control. If he ever gets lung cancer, I wouldn't put it past him to make himself a prosthetic lung out of an air compressor and a set of bagpipes. He might even start sounding like Darth Vader, or a Scottish Darth Vader anyway. ("Dinna be too prrrood of this technological terrrror ye've crrreated! The ken ta destrrroy a wee planet is bollocks next to the pow'rrr of the ferrrce!")

But seriously, if this prosthesis ends up working out for Roy, I see a lucrative business opportunity in it for him. He could start his own prosthetics business, directly competing with those high-priced medical prosthetics. Before you know it, he could be making a comfortable living giving others like himself the finger.