Invisible...Most of the Time

March 15, 2014

"You look great!"  Anyone would love to hear that, right???  Well, sometimes it is a difficult thing to hear.  Seriously....I know that sounds odd, but let me explain further.

Parkinson's Disease is often undiagnosed until signs of tremor.  Michael J. Fox first comes to mind when you think of this disease...his almost spastic like, uncontrollable movements.  What most people don't realize is that these, body tremors, are a symptom of high doses of the Parkinson's medication.  The medication, when first taken, in smaller doses, helps small tremoring subside.

So, if the medication controls the tremor, what else does a Parkie (my loving term for those of us with Parkinson's) contend with?  Well, a variety of ailments which are basically, invisible. They include:

• Bradykinesia:
• Rigidity:
• Postural Instability:
• Freezing: Freezing of gait is an important sign of PD that is not explained by rigidity or bradykinesia. People who experience freezing will normally hesitate before stepping forward.
• Micrographia: This term is the name for a shrinkage in handwriting that progresses the more a person with Parkinson’s writes. This occurs as a result of bradykinesia, which causes difficulty with repetitive actions. Drooling and excess saliva result from reduced swallowing movements.
• Speech problems, such as softness of voice or slurred speech caused by lack of muscle control
• Difficulty swallowing
• Sexual dysfunction
• Cramping 
• Excessive Daytime Sleepiness
• REM Behaviour Disorder
• Mood 

So back to my initial stance...when someone compliments me, that I look well, my insides tell quite a different story.  Currently, rigidity, is my enemy.  To explain it quite simply, it feels like my entire body has stiffened up at each joint.  Rigidity causes stiffness and inflexibility of the limbs, neck and trunk. Muscles normally stretch when they move, and then relax when they are at rest. In Parkinson’s rigidity, the muscle tone of an affected limb is always stiff and does not relax, sometimes contributing to a decreased range of motion. People with PD most commonly experience tightness of the neck, shoulder and leg. A person with rigidity and bradykinesia tends to not swing his or her arms when walking. Rigidity can be uncomfortable or even painful..

The pain and stiffness that I am currently battling are totally unpredictable.  I have tried to track whether it is worse after a day with exercise, a day without, after a day of activity, or after a day of very little activity.  So far I have drawn no conclusions.  It is day to day, and sometimes even hour to hour.  But the pain and stiffness is not something that can be seen.  Oh, I may look like a completely normal 49 year old when I am out and about...but don't let that deceive you.

The most difficult part of these invisible symptoms is that the people closest to you (those who live with you) are the ones who do not notice.  I have learned not to complain.  Hell, if I complained with every little ache and pain I have, I would be taken away in a straight jacket.  So, most of the time I try to deal with the pain myself.  That being, keeping on top of medication requirements, and using an ice pack or heating bag when needed, or finally, just trying to find a comfortable position to stay in.  I also have realized, to my own chagrin, that my daily walks, aided by a cane, help my hip pain dramatically.

Yes, there!  It is out in the open.....I will use a cane when necessary.   This is definitely  an issue of vanity for me.   How can it not be, when my 80 year old father lives with us, and is more active than myself?  But, the cane works very well on my daily walks around the block.  When I don't have it to rely on, I find that half way through my trek, I will be leaning to my right side, and my hip and leg are achy, and sometimes it may even  feel like giving out.  My next purchase is definitely going to be a designer cane. The narcissistic part of me has risen!

Much research has gone into the lifestyle suitable for PD.  Of course it endorses exercise (as my Movement Disorder Specialist told ms, "Use it or lose it"). healthy eating that is lean on protein (for the purpose of quicker absorption of the Levocarb) which, does in fact conflict with my Diabetic diet of the requirement of protein intake with carbohydrates. 

So, actually, the long and short of it is, if I cringe when you compliment how well I look, remember, I might just have to kick you in the shin.