Perks of having Parkinson's

Yup u read that right....Dealing with Parkinson's or PD since the last 7 years, I have realised that they are several perks...well benefits of having PD....

Drunken Walk.... Yup... Being a Parkie enables me to do the drunken sway, or walk, or stumble as the case may be, without imbibing even a drop of alchohol... and yeah no acting either:) 

Practice running...and learning the art of trying to find a clear path... You know when people see me stumble or fall, it is their natural instinct to come and hold me to help me walk, and when I brush them  off, they are bewildered.... well another joy of PD is that once u start ur walk, u better have a clear path to where u are going... and if I have to stop because of some obstacle then I freeze and sway and have to go through the process again....this is what I do.... I pull myself up, get on my knees, pull up and run like a sprinter. only thing is instead of running i do a really mean fast shuffle....my kids and family, now know to move away and leave a clear path for me:)

Electrifying...yup seriously one needs to learn and harness some of the electricity and heat we Parkies generate...when I am shaking sometimes...I am vibrating, and feel like there are electric impulses all over my body, and yeah heat as my body is working overtime

Shaken, Stirred and Frozen? Sounds like an oxymoron, rite? and no it is not a drink, al la Bond style.... but this is an amazing feat... where your body is shaking and jittery and a mass of movemen, but still u are frozen as in unable to move... even to roll over on the bed....  and no this trick, as far as i know is not taught anywhere...thank god!

Slurred soft, raspy, fast or low voice or speech.... Hmmm have always been a talkative kinda person, and a person who loves to be the center of attention, yea, I do, anyways have done radio for the longest time and have always been complimented on my voice, so now I can add to my repertoire of talents yup can do a lot of different things with my voice..jeez I am talented:)))

Contortionist....Oh yeah  Idid learn a few tricks .... when my eyes close shut, my voice slurs, my face contorts...well this might sometime look scary....so

Heady Cocktail...am in the high/twilight zone...Thanks to the heady cocktail of .... hmm na not drinks but the wonderful mind altering drugs that I get to take, whose list of side effects run to literally reams of pages, that when I look at it, technically I shud be puking my guts out, be dizzy, etc etc etc.... which makes me wonder...hmm is it really me out there or OMG god knows...>:)

And of course the ultimate in perks BOTOX.... See as I am special I have this condition which happens to only 5 % of YOPD (Young Onset of Parkinson's Disease) people which again happens to only a very small percentage again....what is that...well it effects my eyes...yup my eyes, droop close and refuse to open, and I literally am like a blind person as I have to pull apart my eyes to see.... well thank god there is a solution....BOTOX:) yup...though several time more potent than cosmetic botox and that many times more dangerous...but yea atleast it lets me see the world as  it turns:)  So I get to go every three months for lifelong to get my eyes injected...about 10 shots per eye..and yeah I have a deal with my doc...that I will get extra shots whenever wrinkles show up on my face...Shhhhhh our secret:)

So yup, I am the lucky, chosen, talented and yup as the docs shaking their heads say am Special:)))

Please do not envy me:)) I cannot take it LOLZ:)

Grin

Pain ebbs and flows, tears roll and dry, screams echo and fade, stiffness comes and goes, suffering rolls in and rolls out, panic smothers and clears, eyes blur and clear, reach inside my soul, to find my smiles, out it comes, bubbling and effervescent, lightens my heart, as it bursts through, tickles my throat, gurgles out, grins covering my face as I realize I have lived through another bout of pain, have survived another episode and get to live another day, to see the smiles on my baby's faces, to hold their hands, to bask in their embrace and I say thank u my lord for giving me another chance to smile and grin....

Guilt...

Everpresent, searing, heartbreaking guilt, swoops on me unexpectedly, drowning me, inundating me, fear and insecurity combining to make it a potent cauldron of despair and anguish.

For me, a person who got my first paycheck in high school, from All India Radio (AIR), have vivid memories of how proud and important I felt as my dad took me to the bank to open an account in my name. The sum was for a paltry amount monetarily but priceless in value..

Then after I completed my 12th grade, I taught for a couple of months in an elementary school, before going on to undergraduate school....I remember riding my bike everyday and of coz after that experience teaching, I decided teaching was not for me...

I continued my broadcasting on All India Radio all through my junior college, degree college, and even after that...was the absolute best time of my life...

Right after my degree/undergrad...I started working...in the marketing department of a computer company, where I met my hubby, got married, then came to the US.

Within 15 days after arriving here in the US started working in a diner waiting on tables for almost two years till Anil, my hubby, who attended school full time and worked too to pay for school...Those were some interesting times....

Then followed internships in BDA PROMAX, a CBS TV station and ABC radio station....then worked for almost 10 years in corporate America...

U are wondering what does this have to do with my guilt....for a person who thrives on working outside the house, not the type t clean and dust, rather read or surf:)....

The feeeling of inadequacy, feeling like a failure on all fronts, professionally and personally, a failure in being a good mom, a good wife,a good supporter....the sheer frustration is immense.

My kids, bless their hearts, have always known me with Parkinson's...Rishu my oldest was 5 years old and Ranu was 2 when I was diagnosed with Parkinson's...

They instead of calling Ma, when they need something have gotten used to calling Baba cos they realise that my health is ifffy....there are times I am able to help them out, but most of the time, I am unable to my heart crying silent tears for my babies, thinking why shud they suffer, why shud those precious hearts not have their mom fully involved in their lives....I try my best but am betrayed by my body, my mind, my sheer fatigue, my inability to multi task as before.....

Guilt searing and cutting as I watch my husband dealing with things on his own, a time when we both shud be building our future, our lives for our family....i feel like an encumbrance, a spoke in the wheel, useless because I have always always always been working, and here I am festering, constantly living with the fear of losing my mind completely, my body betrays me already....

Guilt as I see my parents and in -laws getting old, and instead of me helping them and looking after them they put their lives on hold to come and look after me, and the family....WHy shud they go through the agony of seeing their child go through something that breaks their heart?

I realise things could have been worse....there are always things worse than what u have....I do try and shrug my guilt off, trying to live everyday as much as i can, am selfish where I am confused, conflicted and am not sure if what i am doing is the right thing or not...

But yet I stumble n fumble, grin and giggle, shake and bake, trying my best to be there as much as I can, as much as I am able to, yet I feel inadequate, guilt that damn emotion everpresent...

Fear?

Fear, fear for life, fear of ridicule, fear of failure, fear of losing, fear of revealing our inner selves as one does not want to appear vulnerable.... all this is really all in our mind, created by us, fueled by our insecurities, our vulnerablities, which in turn inhibits us from exploring our true selves, reaching our god given potential.




If you truly think and analyse your fear, deciede to face it, you may be pleasantly surprised to realise that it was not as bad as u thot it wud be. I remember when I was working in the corporate world, where I interacted with senior level people and was sometimes given tasks that I had never done before and that if done wrong would have serious repurcusions... I remember being stressed out...then told myself to calm down and think through it..it can be done and I did do it...What I realised then is that whenever we are faced with a task that we dread, our stress level shoots up, and all our negative feelings come to the fore and even before we start our task we have already created negative vibes around it, which in turn affects your approach to it.



We refuse to ask questions because we may look silly asking something very mundane and we fear ridicule....my take on this is very simple...it is your life, and if you need to know the answer to make your life better, ask away, who cares if a few people smirk...they are the ones who are the losers, you have gained knowledge to enhance your life, and you end up having the last laugh...As I say, if u want something ask for it, you may hear a No but u may be surprised with a Yes:) I personally do not hesitate in asking questions, as silly as they may be, or ask what I want, even if that elicits negative reaction, I go ahead and ask:) If you are prepared to hear a NO, or prepared for the worst case scenario, then all you can do is win, right?



Another thing most of us are scared of, especially women, but this applies to men too, is to show the world our real "face" for fear that it may be taken advantage of...Women are paranoid of being seen without their make up, or their armor and so do men...while grooming and looking good is very important, and presenting the right image is important especially in corporate setting..in personal relationships...u need to be liked for who you are inside and not what you look like outside.. I strongly believe that if you are beautiful and confident inside it will reflect on your outside:) That is why most of the pics I post are bare of makeup I mean:) I want t be liked and appreciated for what I am as a person and not what I look like.



Also what ultimatley matters is what a person sees when they look into the mirror, when they look into their soul and what they see in there...So stop fearing and start living:) love n hugs:)

2011 a year of finding my inner strength...

Well it actually really started in the first week of November 2010...My life taking another topsy turvy road... Little did I realise how much power a little pill had on my life.

Parkinson's is complicated enough physically, but many people do not realise the mental and emotional turmoil that comes along with it...and to make matters worse some of the meds while they take care of the physical symptoms mess with ur emotional make up.... As there were some concerns about me having some adverse side affects from a particular drug I was having I was told to withdraw from them but trying to stop taking them, tapering off from 4 tabs a day to 3 to 2 to 1 to zero...Easy enuf, right...

Well well well...So I started off by stopping one, started going thru a whole slew of side effects, stopped taking the secnd dosage and cud barely move....my biggest problem is I have an extremely high tolerance for pain, so I will endure a lot before I even think of asking for help.  I decided to stop my meds withdrawal as I was already half way to hell, physically, emotionally.

I cud not talk, cud not move, just going to the bathroom to pee was a major endeavor....The few steps needed for me to get there which wud normally take a few seconds, now took me close to 20 mins, sweating, cussing and crawling, rolling....

I called my docs, told them, had a vacation planned...a nine day cruise and wanted to feel better for that.  Did manage to go to that, though I spent the majority of the time in the cabin or on a wheelchair.

Then got back home and was unable to sleep, restless, emotionally a mess, physically tired as hell, not sleeping during the nights, losing weight...Got in touch with my docs aand after discussion they decided that as i was not handling my meds withdrawal they wanted to do so in a controlled environment under the supervision of a team of specialists...

So I was admitted late Jan of 2011, the plan being to withdraw the dopamine agonists and supplementing with other meds...Simple enuf....only that withdrawing from these meds was similar to withdrawing from cocaine....pure hell....emotional sea saw.....was actually being closely monitored and they were worried that I wud take my life....i actually did contemplate it, but the fact that i cud not move n was so frigging drained put a crimp in my plans.

This is when I realised how much I depended on the meds and how lost i was without my meds, how very helpless, unable to even take care of even my basic needs....An extremely sobering effect that such a tiny pill can cause so much of havoc...The team of docs, the nurses were extremely supportive and empathetic and were there to help me along the way..That and my Facebook family...I had my laptop with me, excellent internet connection, and I uploaded my usual crazy updates and yup also pics for my "narcissist" album.  I cannot stress enuf how much their support along with my family and the team of specialists helped me:)

I shared my blogs and vlogs with my nurse friends and anyone else who was willing to spare time:) I had to distract myself from the fact that Icud barely walk, needed assistance to go to the bathroom, had to go through physical therapy and was given a walker to take home so I cud walk...

At the age of 43 this is not what one wants life to be...The actual hell started after I got back home..... My life seemed like a black abyss, constant thoughts of taking my life, frustrated, scared, alone, emotional see saw, no energy to talk or even think.... Oh and yea no sleep at nights, apetite gone, losing weight, extremely restless, stumbling and crawling summed up my days and nights...lived by the hours..my docs asked me how did i plan on taking my life? And I very matter of factly replied...I thot of taking a bunch of meds, after all my night stand is full of those orange pill bottles....so what stopped me? my doc asked? I said well, i am going through hell just withdrawing from one of those stupid pills, what if I take them , dont die, but have withdraawal symptoms? huh? My docs did make sure that my hubby had with him all the imp meds like sleeping pills etc with him so that I was not tempted.

I was in HELL and thought I wud never get out of it....but with my famliy's support, my will power, I am happy to say I have managed it to the point where we went on a vacation and I parasailed:))) And yes after 43 years, dared to wear a bikini:)  I was so close to giving it all up, to let go...but I am glad I hung in there....There are still lot of other health issues I need to take care off, but I can survive those....

Yes 2011 so far ahs been an interesting year, still have a few other medical stuff to take care of....one year of my life again gone...wasted..... oh well atleast I lived to crib about it:)

Where am I?

As I stand in the front of the mirror

My hands clutching the counter
As I look with growing dread
the reflection reflecting back
uncombed hair falling limply
on pale cheeks devoid of color
skin dry and taut
bleary eyes tired from lack of sleep
sunken sockets with eyes drooping with tiredness
the lips cracked dry
and pulled down in a grimace
i stare at this stranger
trying to find
glossy hair shining with life
the cheeks rosy blush of excitement
the smooth soft skin
the fire of determination in the eyes
the smile that always hovered on the lips
as i frantically peer into the mirror
looking, searching, hoping
waiting to find myself
soon

Is it attitude or plain nutso?:)

Hmmm sometimes I seriousy wonder if I have lost my marbles, hmmm not the glittery, made of glass variety, but the ones that you know, try to keep all the things together in ur head?:) Huh...Well Parkinson's atleast made me realise one thing..... what u may ask...the fact that I do have a brain duh:) Honest to god, I do....how do I know...well they injected me with a radioactive dye...so that once they had my head under this huge machine...also known as the Fdopa scan....(as I lay there I was thinking...hmm does FDopa mean a short form for "u r a f@#$%^ dope?" That made me grin, inspite of my nerves jangling away and th emachine clicked away pics of my brains or what is there of it...




I mean I know I am taking the statement "I love to have my pics taken" to the extreme eh...having full color pics of my brains jeez....worried that the secret will be out that all that is in there is a huge pile of sawdust..oops.. Well they had the instant printing kinda thing which told me in colorful detail that my "Dopamine" cells are vanishing at a rapid pace....



As I have since realised that those cells that are doing the vanishing act, which i think is pretty rude, if u ask me, I mean who gave them the permission to go away, I did not...i realised that certain paarts of my body also decided to go haywire...i mean jeez bad enuf that those cells go awol then they have the temerity to discuss with my other body parts, all without my permission, mind you, and they all decide to mess around with me...



Suddenly my legs decide do do a jitterbug dance and here I go tapping my leg, like crazy, or they decide to be lazy and decide to go numb on me and leave me literally having an intimate tete-a-tete with my carpet, which kinda helps sometimes I guess, as I found a missing button, a missing earring back, and a pill....not a fun idea crawling on my knees as my feet decide not to work...



Or when i have a nice hot cup of coffee in my hand and my hand decides to do a jerking dance...hey I am all about movement and dance:) and there goes slosh....the coffee...phew atleast it decided to do it away from my body...or the cells decide to have a one on one with my eyes and they decide to shut down...



I am telling you these brain cells once they start boycotting they take their job seriously....believe me I know...so I decided to try and outsmart them huh....after all who the heck they think they are dealing with? So if my legs do nogt work, I use my hands to crawl and get where I want, if my hands decide to then i use teh other...i guess teh problem wil arise when tehy al decide to go on strike al together....what then....well no worries, I have my thinking cap on...my mind is a racing with racy thoughts...am sure I will come up with sumthing by then..not sure if this is attitude or plain nutso....but hey it is me....love me and laugh with me or heck stay along with me for the bumpety bump ride...it promises to be an interesting one to say the very least:)))



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