Tuesday, April 20, 2010

Parkinson's and lesson's learnt

I still remember vividly my appointment with the "Movement Disorder Specialist" in Johns Hopkins - It was end of May of 2004. Hearing the diagnosis was both a relief as well as disbelief. Relief, knowing that I was not crazy, that all those symptoms I have been having, actually had a name and that even if all the diagnostic results came back normal, there was something really wrong. Disbelief, shock, a surreal feeling because this was not supposed to be happening. It was supposed to be something for which I take a few pills and I magically become healthy...

Well it has been almost 6 years and reality is setting in. It has been 6 years of not only physical, but emotional and mental hell hole and guess what only going to get worse.

Parkinson's is an insiduous condition, very stealthy, sneaking into your body n mind and by the time symptoms manifest more than 80% damage is done. It is like dying slowly each day and utterly demoralising, humiliating, frustrating, guilt ridden and the feeling of utter helplessness.

All the things I had taken for granted, now became laborious, simple tasks, daunting. The decline has been gradual but definite each day taking away a little bit of me.

It has also taught me a lot about me. i learnt that i have the strength, the fortitude and the attitude to try and deal with it. It helped me look at life in a different way, made me realise that there is more to life than the constant bickering and negativity we surround ourselves with...

I have learnt that life is unpredictable, that one needs to treasure the good moments and try and let go of bad moments.

I have realised that my stubbornness or will power is actually a good thing as I refuse to give up or give in. It helps when I am frozen and my feet and body refusing to cooperate- I focus inward and gather my mental reserves and will my body to move and even though I am dripping with sweat at the simple process of putting one foot forward, when I do it, have a sense of satisfaction like no other. One little step at a time I can do it. If I cannot walk, I crawl - getting up close and personal with the carpet.

Sense of humor, being able to laugh, as you fumble and stumble is very important so when I shuffle I am Happy feet, when I sway - my drunken walk and when my body is shaking so much that the chair I am sitting on is vibrating - well that is when I am electrifying:)

It is ironic as I yearn to be able to do simple things like running errands, drive my kids to acivities, grocery shop, cook etc. I still do it, takes me some time but still do it. Especially when my meds manage to fool my body into thinking everything is OK I can take on the world and I can feel the off moments coming on - time to pop the pills.

My day is broken up into "On" when my meds are working to "Off" when my meds lose their effect and time to pop more. Do these pills help?

The pills help in helping me have a life while I can. No it does not take care of the condition, the ravages to the mind and body continue - there is no cure - yet. The pills, while they have side effects, that have prompted law suits, at least buy me some time of normalcy - whatever normal means.

Over the course of my six years with Parkinson's I have come across different reactions, lots of comments, observations. A lot of them genuinely concerned, some concerned, but unable to articulate, some curious, some merely polite but mostly supportive.

There have been a lot of rude and insensitive comments. Some on purpose some unknowingly.

Most common is Well atleast it is not Cancer - True! absolutely thankful as it cud have been worse. But that does not make it any easier to deal with it.

Another one is comparison- I know of someone who has ten diff conditions n is still doing 20 things so why do u complain? Well we all have different tolerance levels and deal with life's curve balls in our own way. Some have a low threshold some higher.

It is all in your head- you are making it a big deal...Well Yes it is all in the head, and Yes it is a big deal...
brain cells dying, unable to move, losing cognitive functions, unable to talk...duh

Another - and this is my fav - U use ur condition to gain sympathy -- LOL. Please tell me what the heck do i do with sympathy? Will it make it go away? Jeez! If gaining sympathy would help my condition believe me I would be very happy. There are people who are not comfortable sharing and then there are people comfortable sharing and that is me. I have had several incidents where my tremors were mistaken for nervousness, where my slurred voice mistaken for something else, so I, no matter who, in the conversation let them know that I have PD. Not for sympathy, Empathy I wud not mind, but because if there are some symptoms at least they know there is a reason.

For me, the passing of time, holds new meaning and so I am aggressive with what I want. I dont know what tomorrow holds so I try and push it for today. Lot of people do not understand the need and I am sure I have offended a lot of people. It would be nice if I could have the luxury of time. The need is desperate to do something while I still can.

Photos are another thing that has become important, especially good memories, pleasant memories, I am hoarding them up and I have been known to be a pain in the hindside:) asking people to make sure I get copies of my pics.

You may ask - Sutapa - if your condition is not good then why should we take a chance on you and why
should we put our money on you.... Very understandable and very viable - Here's why.....

First and foremost you will be helping me achieve my life long dream - so you can be rest assured that my very best efforts will be there, and the way I look at it is, if I can still get up each morning and approach the day with a smile and spring in my heart, with the hope that I can do it and will do it, and do do it, if I can still maintain a positive attitude and even think of doing something with my life, have a craving to make a difference in people's lives, deal with not only the physical but emotional issues headon then I know I am made of tough spirit and not many people have that.

Would you still want to do something with your life, when you try to get out of the chair and realise you cannot move, when you try to turn in the bed you are unable to move, when you try and stand up and your legs give away because there is no feeling and you have to crawl to reach where you want to go and even that is an effort, when you try and put a foot forward and it refuses to budge, when a simple task of changing your clothes or brushing your teeth or buttoning your shirt becomes a daunting issue, when your child cries for you, and you are unable to get to them because your body refuses to move, when your eyes close and refuse to open and the only option is to have botox shots on your eyes every three months so you can see, when your child asks you to make something and you cannot, when your child wants you to volunteer or go on a field trip and you have to say no, when you are compared to others and found wanting? Would you?

I can sit back, moan and complain, take it easy, live my remainder of my life having things done for me, BUT that is not me. I still yearn to do something and have done a lot of big things inspite of being bogged down. I still continue to do so and will do it till I am absolutely unable to do it. I can do it and I will do it. I M POSSIBLE!!!
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