My Parkie mornings:)

It is so easy to say...No I cannot do it
It is so difficult to literally roll out of bed
eyes half closed, toes tightly curled
arms stiff....as you lay on the carpet
laying there for a few moments in the
quietness of pre dawn, soft snores and the house
making those comforting noises...everyone
in pre dawn deep slumber
as you breathless, lay down on the carpet
mulling on how to straighten your arms
uncurl your toes, uncramp the cramp
as ur hands feel around for that pill bottle
the salvation it provides as your shaky hands
pour out the water, spilling some
then trying to unscrew the pill bottle
hands slipping, cussing, sweating till
yes bottle open....pop the pills
then begin the process of stretching and uncurling
as my cheeks lay on the floor I look towards the bathroom door
seemingly a planet away as I mentally start my pep talk

Cmon u can do it you can do it you can do it...
as I hold on to the edge of the bed
swaying like a drunk in the early morning hours
one feet up one knee on th eground, like a runner
I push myself to go towards the bathroom door....
to start my day....
Welcome to my morning:)))

Mr. Parkie

Here I was merrily skipping
along life's path,
with a song in my heart and
a dance in my soul
When I suddenly stumbled
Did not even have a chance to grumble

I did not feel the invasion
so stealthily it did happen
One moment I was skipping
And the next moment I was slipping

Mr. Parkie Mr. Parkie
U are rude and sneaky
U came in without a squeak
and made me unable to speak

u took over my body
pretty as u please
without asking
may i please?

Mr. Parkie Mr. Parkie
U are rude and sneaky
U came in and occupied
and i am petrified

U are on a killing spree
killing all my brain cells
U are in control of my
body parts shaking them
as u please

U took over my mind
my body but u ain't got my soul

No no no u ain't got my soul

Hey Mr. Parkie
if you think I am just
gonna roll over and play dead

u don't know what u got instead
I am gonna fight u
u uninvited guest
I am gonna kick u out
just u wait and see

may just be wishful thinking on my part
but it is my wish
and in that i can do as i wish

and i wish u go away far far away
Mr.Parkie....I do not need u
go away go away go away!!!

All about Perspective, isn't it?

Hmm so I was having one of those ruminating moments, you know where u sit back and try and evaluate your life and goals...yup really profound and intense:)) 

I have always wanted/want to do something in broadcasting, ever since my love affair with the radio began in 1983 or so when I started doing on air....I always had it in my mind that I would get to it eventually..as my life's goal....then came along my Parkinson's diagnosis, ironically believe it or not right at the moment when I was poised to take the leap so to speak...

When Ranai, my second, was born, I quit my job so I cud stay with him, and the plan was as soon as he was maybe 3 or 4 years old...i would try and pursue my dreams...and wouldn't you know it...when he was 2 years old, I got diagnosed...

As the diagnosis sunk in,well kinda, I had this desperate feeling of time slipping by, went through a lot emotionally, have written about it in another blog, so will not go into it here.

I began planning, conceptualising, thinking, writing and pitching , all this while I was in full blown denial, about my health, my kids little and fighting the skepticism that it was too late in my life to be thinking about a new career path....

Things happened, and my thots, my plans, evolved, when I through desperation, loneliness and frustration, started writing bogs and created a video blog, created my website....Creatvproductions is my baby through and through, a one person endeavour, a stubborn sense of trying to connect with the people....I am a self proclaimed geek, so I taught myself everything and did extensive research on the net, found and downloaded software, learned and incorporated that into my videos etc...

I have always been an early adopter and love to learn and am extremely proud to say that everything you see from my website, content, design, video, camera, editing, uploading, channel looks, posting videos on diff sites etc etc etc has been done by me...when I say I am the janitor and chief creator of Creatvproductions...'tis true every single word....

I did try the regular way, and here I do have to mention two people who came into my life and helped me make a pilot for a talk show, that we wanted to do. Vandana Gambhir and Bala Chandran, and a bunch of my friends who believed in my dreams came together and helped me  make a pilot basically spending zilch, just a lot of goodwill, love and best wishes...

When things did not go as we hoped, I started my Youtube channel.  The idea behind the channel was basically to create videos so that when I was pitching shows to broadcast houses, i wud have something to show...

I posted my videos on some other sites, my bogs on others....and when I look at my insights or stats I realise that I have viewers, readers from all over the world, messages, comments coming from people I never met, and I realised that slowly but surely , my thoughts were spreading, people were reading and watching and all this time without really realising it I was in a way fulfilling what I want to do, which is basically reach out to people.  I am so focused on trying to get into the mainstream that I did not realize that I was reaching out to people via the new medium, internet.

With a very approximate tally, I have reached maybe more than 70,000 people with my written, and video blogs, with zero dollars spent  on marketing, just my stubborn determination and persistence.

Who says you cannot do it? When one wants to, nothing is impossible.  There are tools out there....Not only am I fighting a nuero degenerative health condition, trying to raise two boys, but also trying to prove to me and the others who said I cannot do it, that yes you can, you will cos u are!

I WILL, I CAN , I AM!!!!

http://www.youtube.com/user/creatvproductions?feature=mhee

Parkinson's by Rishab

Well, the way I describe Parkinsons is a disease which doesn’t express yourself to the fullest, it limits your abilities. This is what you have maa, and I know it is hard to live life. You have us though, and we will help you trough the hard times.

                I really don’t like Parkinsons, especially since my maa has it. I remember on our vacation to Duck, maa was feeling bad for most of the trip. I felt so bad that maa didn’t get to enjoy the trip. As I said earlier, Parkinsons doesn’t let you live to the fullest. Maa didn’t live to the fullest on that vacation.

                I’m so glad that maa doesn’t have advanced Parkinsons, or she would be shaking all the time. Some of the most famous people, such as Michael J. Fox, and Muhammad Ali, have Advanced Parkinsons. They cannot even walk straight. Even the most infamous people, like Adolf Hitler had Parkinsons. Parkinsons is not an uncommon disease, but I don’t know why it had to happen to maa.

                I thank god that Parkinsons is not fatal. I would do anything to get maa out of that disease, even if it meant waling a thousand miles. She is the best mom ever, and she acts so nice and caring around me. I especially like our text conversations. Maa, I love you, and I would do anything in the world for you.

Parkinson's by Ranai

( I had asked Ranai my 9 year old to write what PD means to him and this is what he said) 

Parkinson’s

Parkinson’s is a disease, a brain disease .Parkinson is a type of brain disease, and many people suffer from this disease not to mention my mom. :( . Parkinson’s is a type of disease of the brain, you‘re not able to move so fast and you are not able to really well play sport etc.

Parkinson’s is a very strong brain disease, it is so sad to see someone like this it is not a good sight. :( .I think personally that it is not fair that my mom has this because she is so loving and caring it is not fair! I don’t even understand why there are diseases it just makes someone suffer. (tebowing for a brief moment).

I really think diseases such as Parkinson should be erased. I wish that all diseases had a cure already but Parkinson doesn’t it is sad! :( .Well I told you how I feel about Parkinson’s and other diseases.

Oh dear! My brain's gone AWOL!!!

Those darn dopamine cells.... sure do have a "mind" of their own.  Doing the vanishing act without asking you... I mean how rude is that.... and they decide to let u know after a majority of them decide to quit ... yup about 80% of them.  I mean are they not bound by work ethics..like giving you some notice or heads up that they want to quit? Hmm wondering if I can sue them....Lawyers...any takers?

If you are wondering what am I ranting about...here's the scoop .... I have been diagnosed with Parkinson's in 2004 when I was 36 years... and Parkinson's happens when the brain cells that make 'Dopamine" die and are not reproduced....and what does "dopamine" do... well it is responsible for all your cognitive, emotional, and motor functions, also speech, thought etc....

And 'cos I did not want to believe it my doc let me take pics of my brain.... I mean, I love taking pics of me..but this..hmmm and that too in full color no less... Did u know your right side of brain controls your left side of the body and vice versa...I did not till I saw a nice color pic of my brain. My tremors started on my left side, so my right side showed an alarmingly low count of cells and my left side of the brain had also started on it's drain.....Dang.. This was in 2006 I think.

So here is my rationale, my own skewed version of why I have Parkinson's:) Are you ready to hear it.... Brace urself...

See I am bad enuf with only 10% of my brain functioning....can u imagine what wud happen with the rest 90% being functional? :) The world is not ready for me yet:)) Sigh tough being smart and beautiful, oh yeah and very modest too:)))

http://www.genomenewsnetwork.org/gnn_images/news_content/12_01/Parkinsons/Parkinsons_2.gif

No, this is NOT a picture of my brain:)) I took this off the internet

I am a Fraud..Yep:)

So with it being the end of the year and all, i thought it best to cleanse my soul, bust some myths about me and correct some assumptions:) Yup confession time...so pre warned....brace urself, this piece will shatter your opinion about me ..... r u ready.... oh ur hmm k:P

Some people have the mistaken impression that I am an intellectual, highly read person....ahemmmm....I love my steamy romances and fast paced mystery books....no philosophy or heavy reading...honestly they put me to sleep. I am not highly educated as far as traditional education...just a Bachelors... in fact the first time I ever saw a sign of respect in anyone's eyes when I mentioned I had a Bachelor's was here in the US...In India I would be looked down upon.... not that I care:)

I am strong:) Well emotionally that is, physically it would be funny as I weigh in less than 100 pounds and all of 5ft 4....but even e being strong emotionally is not true..... I am terrified hmmm actually no am petrified at what my future holds as far as my health is concerned....and if by now you do not know that I have been diagnosed with Parkinson's at the age of 36 in 2004, where the heck have u been....I have been whining about that forever...Maybe I am a master at denial.... that is it...

Unselfish.... yea that I am not, ...ask my hubby and he will laugh you out of town...He has known me for twenty plus years and says I am very selfish so...maybe he is right? Yes I am selfish, when it comes to food:P Yup food....love to eat, and esp chocolates or desserts....I have a very strict no sharing policy and have no shame or hesitation in admitting it... Yes I am selfish as I love to get compliments, accolades, appreciation...yup I do....

Another thing people think when they see me is that I am very confident and modern and and that I can do whatever I want....uh wroonggg....I have my share of insecurities, my failures, lotsa weak points, may look modern but at heart a lil old fashioned and traditional, like simple things in life and am basically low maintenance:) I did term yself an emotional doormat which I was...but am learning now....

Ok so what am I.... I am at heart, a simple traditional gal, with an open mind, non judgemental, believe in human goodness, am talkative, loyal, beautiful inside and out, friendly, narcissisist, geek, love to learn new things, like to keep myself busy, am more happier working outside the house rather than inside the house.  I thrive on interaction, love my gadgets, am delighted when given a bunch of wires and trying to connect them, am passionate, stubborn uh actually letme rephrase strong willed, like to laugh at me and at the world:) And yup not modest cos here is what I believe

Am confident of who i am, know most of my faults and strengths, cannot stand artificial people, honestly, I wud not know how to respond...

Am a straight shooter...with me usually I will tell u exactly what is on my mind..gud, bad or ugly....

Oh yea am a sentimental fool and very sensitive too....

You know we all want to hide our selves, our fears, our insecurities, our vulnerabilities, for fear of being manipulated. People go to a lot of effort to hide their true face from the world....and tell me very often....why are u baring your heart, why are u sharing your pain with Parkinson's...do u think people care?

And there in lies the biggest myth of all...I share not for others but for me, for my sake....I am a sharer and it helps me feel better to share....

So there you have it Sutapa Unplugged:))