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.