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Friday, July 25, 2008

Parkinson's and me

Parkinson's disease (also known as Parkinson disease or PD) is a degenerative disorder of the central nervous system that often impairs the sufferer's motor skills and speech, as well as other functions.[1]
Parkinson's disease belongs to a group of conditions called movement disorders. It is characterized by muscle rigidity, tremor, a slowing of physical movement (bradykinesia) and, in extreme cases, a loss of physical movement (akinesia). The primary symptoms are the results of decreased stimulation of the motor cortex by the basal ganglia, normally caused by the insufficient formation and action of dopamine, which is produced in the dopaminergic neurons of the brain. Secondary symptoms may include high level cognitive dysfunction and subtle language problems. PD is both chronic and progressive.
PD is the most common cause of chronic progressive parkinsonism, a term which refers to the syndrome of tremor, rigidity, bradykinesia and postural instability. PD is also called "primary parkinsonism" or "idiopathic PD" (classically meaning having no known cause although this term is not strictly true in light of the plethora of newly discovered genetic mutations). While many forms of parkinsonism are "idiopathic", "secondary" cases may result from toxicity most notably of drugs, head trauma, or other medical disorders. The disease is named after English physician James Parkinson; who made a detailed description of the disease in his essay: "An Essay on the Shaking Palsy" (1817).
So that is the Wikipedia version! According to me it is the uncertainity of the progression, the fact that there is no cure, that I will be unable to do lots of things, the fact that I will lose my memory, my movement, my speech basically all my cognitive functions. My biggest fear and guilt - my two beautiful kids - my family- being responsible for getting it on the family tree, putting other generations at risk, of not being there for my family physically, mentally and emotionally!
Being the person that looks at life 'glass half full' I thank god that it is not life threatening but life inhibiting! My positive attitude and sense of humor is very handy in helping deal with this....
It all started with a tremor that grew in magnitude till it rocked my world and my family's! I have no idea when it snuck on me. I attributed it to stress, being a second time mom etc...I was diagnosed with hyperthyroidism which eventually became hypothyroid and I thought that's it! Little did I know what was in store... I am almost a walking medical dictionary - thyroid, extremely low sodium ferritin, vitamin D and of cos the big doozy Parkinson's also known as PD.
My experience with PD has been interesting to say the least. It is not only physical but also emotional and mental. I go through periods of being "normal" to a stage where I cannot get out of the chair or bed or cannot maintain my balance where I keep walking backwards.
We take life for granted... I did. I always thought I'll do this after so and so and here I am struggling to sometime even do the basic thing like cook for my kids or drive them to their activities. I am having meds that mess with my head and have crazy side effects. People ask me if I am in pain. Pain is the least of my problems... Frustration, imbalance, mental apathy, despair, guilt, dizziness, numbness, fear, walking backwards, shuffling gait, freezing of legs where they just give up, hands shaking so badly that I can barely hold anything, not being able to get out of the chair, mentally feeling like a zombie, not being able to do things fast, taking time to even simple basic tasks, body tremors, jaw shaking and oh yeah the additional complication that I have with my eyes.
What about it? Well it is called blepharospasm dystonia. What the heck is that now you say? Well it basically is being functionally blind. I am unable to keep my eyes open. My eyes keep blinking rapidly and I walk around with my eyes closed. Thank God there is a solution - what is it you ask? Well every three months life long I have to go take botox shots around my eyes - medicinal botox that helps relax muscles.... Around 10 shots per eye......
Oh Yeah did I mention that I hear things and see things auditory and visual hallucinations --- crazy huh. Well another wonderful side effect.
So really all you healthy people stop complaining get up and get moving, do what you want...


You know what I'll take simple pain anyday:)

There are so many thoughts, ideas, projects running around in my head but my body refuses to cooperate. It is also very deceptive. People seeing me in my "on or normal period" think I am faking it. Even people closest to me thought that and that hurts. The biggest plus point if any is that it is not directly fatal.

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