Defying Gravity

While travelling with my younger son, the topic of my future came up and I opined that I might lose all control of my body, but I was going to try hard to stay healthy.

"I will be there for you, I promise," he said.

To say I was choked up would be an understatement.

Over the next few days I began to see the possibility of that bleak future but I have rejected it outright.  I will be one of the lucky ones.  I will defy expectations and PD will advance slowly.  I might hit stage four, but I doubt it.  I will probably be dead before that unthinkable outcome And, if I do get into four and five, I will have support.

What stage am I at now?  Good question.  Every victim is different, so I can't count on the averages of the amount of time spent in each stage set out below.  I can only guess at my own position.

Here is a summary of what I know of the condition. I go over it occasionally to see how I am doing.

Early Stage Parkinson’s  (stage one perhaps)

• ----Movement problems are noticeable to the victim but he/she can handle them.  They can be inconvenient and sometimes embarrassing but do not present an obstacle to daily living.
• For example, my movement problems first presented on the right side of my body as a tremor in my right hand and impossible contortions of my right leg and foot that left me aghast at the pain brought on by hideous and sustained cramps.  A condition known as dystonia (see 2011 posts).  
• ----Parkinson's drugs work well to suppress these symptoms completely - if you remember to take them regularly, something that is easily missed, to one's detriment, for which I can vouch.
• ----Regular exercise helps suppress the symptoms and is believed to be the one thing that can slow the progression of the disease.  If you are a long time reader, you will know all about my exercise regime and are probably sick of hearing about it. I won't burden you with it until a later date.

Early Moderate Parkinson’s  (stages two and three maybe)

          ----Oh, no! Movement problems appear on the other side of the body.   I can sometimes feel
          them as a tremor in my left hand, but they are insignifican



            ----Oh, oh!  Movement problems appear on the other side of the body.  I can sometimes feel them as  a tremor in my left hand; but, they are so insignificant that I cannot say for certain I have darkened the door step of stage two.  The thing is, the drugs are so efficient at keeping my  symptoms at bay that I might be on the porch.

•     ----Movements slow down.  Aye, there's the rub.  My body move movements are the speed of the tortoise.              
•     ----First signs of lack of co-ordination appear.  I have to admit, I am having slight problems with balance but PD does not yet affect my daily routines.
•      ----They tell me that“Freezing” episodes may occur in the later part of these stages.  Kind of an interesting condition, but not one I wish to experience.  Or, maybe I do.  I am just not sure.
•      ----You may encounter "wearing off" of the drugs in your cycle - i.e., the drugs are not as effective and their protective duties are weakened before you take your next pill.
•      ----Some PWP will develop dyskinesia from the use of drugs.  Dyskinesia is involuntary movements sure to cause problems.  It is important to note that not all victims will be subject to this annoying facet.

My Situation Today

• I think that after approximately 7 years post DX, I must be in the early part of stage 2.
• Right now I could live independently without any problems and I think I will probably remain in stages 2 and 3 for awhile.

Advanced Parkinson’s (stages 4 and 5, no doubt)

• ----A PWP cannot lead an independent life.  The body may have deteriorated to the point of requiring a wheel chair.  Assistance will be required toward the end of stage 4 and into 5.
• ----This is when real hallucinations occur, as opposed to my nano second, early morning visions.  
• ----About 20% of PWP will develop cognitive problems.
• ----Medication will be less effective and side effects will become more prominent.

• Sounds pretty devastating, doesn't it?  Check out this study at www.viartis.net/parkinsons.disease/news/100312.htm, a study that concluded that while lengths of time in each stage are not predictable, the average time spent by their subjects in the study was:
•      1.   stage one to two = 1 year 8 months
•      2.   stage two to three = 7 years 3 months
•      3.   stage three to four= 2 years
•      4.    stage four to five = 2 years 2 months
• The writer hastens to add,"Progression is not inevitable.  Some people with PD have either:  stayed the same for decades, reduced their symptoms, rid their symptoms, or worsened at a rapid rate."
• Let's all plan to defy the "worsened at a rapid rate" portion and vow to stay the same for decades.  
• Positive thinking is a required treatment.  I think I have written about positive thinking in earlier posts.  If not, I shall burden myself on you down the road.
• Say with me:  "I'm through with playing by the rules of someone else's game." and get on with life without the dark cloud of despair hanging over our heads.
• Before I forget, "Everyone deserves a chance to fly."
• Got it? 
• Yes?
• Then lecture completed.