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Wednesday, March 5, 2014

A moment in my life

Toes curled
Feet pulled inward
ssharp pain shooting
up my legs
my shins cramped
my legs tingle and harden
hard as a rock
pain fully stiff

Does not stop there

Onwards n upwards
fingers stiff n bent
yup both
forearms and upper arms
stiff as a board

shoulders harden,
neck locks up in pain
locked and frozen I
am in my body

Mind frantically
looking for an escape
but trapped
in  the body
it tries in vain

a pill i swallow
promising relief
but careful i have to be
too much and it cud
go the other way
where  i shake
but am still frozen

Aah yes the
joys of Parkie

Friday, February 21, 2014

Dear Parkie

 I would like to start off by saying that you are one of the most rude, obnoxious, shameless and stubborn thing i have come across. First of all without a "May I, please?" you go ahead and enter my body and slowly but surely killed most of my dopamine cells. I mean, how very rude is that? You know very well how important those are for  me.

It is bad enough you come in uninvited, but then you proceed to shake things up....first my left side, then my right side and now u greedy jerk, u jerk my whole body around. You are cunning and take your time but boy do u devastate.....For a long time you damage the inside, disabling, demeaning, demoralising, and others have no idea why......before u start to show urself to others. You may not be a death  sentence  but u are definitely a life sentence.

And you know you don't just trouble me but because of u my kids, my beautiful boys, my hubby and all my extended family n friends are affected....though as u progressed further and got more complicated, i did find out who my true friends are.

People, most of them, think you are all about tremors, but we know differently, don't we.  They have no idea about the damage u can inflict.

To get you to calm down I even had holes drilled into my head, but....not much change, at least for me.

I have a favor to ask..... I know you have settled in long term, but can you take me back about 5 to 6 years.  Even though life was not perfect, it was much better that it is today.

Do u comprehend?

Friday, November 15, 2013

DBS and me

November 15th 2012 started a journey for me, which I am still stumbling along on Nov 15th 2013 when I am writing this.

I call 2012 the year of facing my biggest fear.... for some reason have always feared heart n brain surgery and now I was told that as my meds were not working it was time to consider DBS also known as Deep Brain Stimulation surgery, and i had to have bilateral, that is have two electrodes implanted in my brain, and oh yeah, i had to stay awake during surgery....no anesthesia except local. This was first put forth to me in April and my first instinct was no way, then finally did some research and agreed....then followed a rigorous process from which they determine if i am physically, mentally and emotionally ready for the surgery...was given  the green signal n the date set.

November 15th came and we left home around 4.30 am as the hospital was an hour and a half away and we were asked to report at 6.30 am. It was my  husband and me and my brother joined us at the hospital...Was signed in, processed, taken to a waiting room alone first,  where i was asked to change into the sexy backless gown they provide and the dreary grey socks...asked the nurse, why they don't have pink ones..anyway was asked to pee in a cup, came lay on the bed and then started a parade of people...first the nurse taking my vitals...she asked my weight twice when i told her 90 pounds, asked if i had any piercings, tattoos, drank alcohol, did drugs etc to which my answer was a boring no.

The anesthesiologist walked in and asked for my vitals from the nurse...when she told him my weight he  was surprised....he said is she 44 or 24, turned and gave me a look:) I asked him why is he there as I have to be awake...he said they have to be there in the room as standby. And meanwhile there were a flurry of people, asked to sign different forms...then they started me on a heavy dosage of antibiotics, intravenously. Meanwhile my hubby and bro were allowed in the room...along with Shari, my DBS nurse.   She would be my lifeline, my advocate during the surgery.  As we were waiting for my drip to get over, i suddenly started having itching all over my body, i told the nurse and she immediately called someone and they determined that it was a known reaction to the antibiotic.... I really had no option, but to have the entire dosage of antibiotic, otherwise no surgery.  Luckily they found out that if they lowered the speed, it helped. would take longer but at last itching came down.

Then soon it was time to say bye to my hubby and bro as they wheeled me in to surgery, with Shari by my side. my heart was pounding, throat parched, was without meds and no fluids or food for more than 12 hours now.... The first order of business was shaving my head, which a male nurse with a cordless razor, proceeded too do so.  The surgery room was swarming with people.  it was an eye opener as to the number of people and depts involved.  Then saw my doctor who came by patted my arm and asked me how i am doing? I told him  i m ready to get screwed and drilled:)

After shaving my head they got ready for the next step, attaching what i called "the halo" on my head...they literally had to screw that on my head at four different places.  For that they had to give me numbing injections at four different places...the pain of the injections took my breath away as i squeezed Shari's hand. after the injections she patted my hands and said she had seen many a burly men reduced to tears and she was proud of me... then one of the nurse straddled me from the front while another at the back started screwing this pretty heavy thing on my head...no pain, but a lot of pressure and noise and finally the halo was set.

Then I had to go in for an MRI where they took multiple slides of my brain....hate MRI machines and it was a real pain.... then back to the operating room where they screwed the frame screwed to my head to the surgery table.  Then started the long arduous process of measuring, taking countless xrays for them to determine the spot, discussion,, till they marked the spot on my head.  Again numbing injection, where i screamed in pain and then they cut a couple of patches on my skull.....it was a weird feeling...not much of pain, but could feel the pressure of the knife cutting.....through all this Shari, kept on asking me how i am, had me covered in blankets, got multiple pillows and tried to make me as comfortable as possible.  Then they warned me that they would start the drilling process. A LOT of pressure as they pushed down and the machine sounded as if a plane was taking off right over my head.   Then one of the other doctor was trying to find the exact coordinates on his laptop....I heard an uh oh...apparently my brain was not cooperating and he was having trouble finding the coordinates...then finally a shout...yes! as i suddenly heard some buzzing noise....apparently my brain finally started talking... he rattled of some numbers to the surgeon and he proceeded to insert the electrodes.  they needed a longer electrode for my head, anyways in went the electrode.  I was very tired and ornery by this time and was ready for this  to be over....but they still had to drill in thee other one.  Though this one went by a little faster as they knew where they were going....then after almost eight excruciating hours the magic words...done...then to the anesthesiologist...put her to sleep...but i was so wired that it took them a few minutes to put me down.....then blessed oblivion...phew!!!

Awoke in the recovery cubicle, was taken for a CAT Scan to make sure everything was OK. After a while my hubby and bro were allowed to visit me and they found me sipping ginger ale and eating honey graham crackers as i was hungry...was almost 5.30 pm.... I was supposed to stay overnight and released the next day...so just barely 24 hours after the surgery i was released in the care of my family.  Luckily my in-laws were with us which was heaven sent. Could not have done it without them.

But wait it was not over yet...After 5 days on Nov 20th I went back for another surgery. This was to be an hour surgery under full anesthesia to put in the battery pack and it was supposed to be a day trip.  But when i awoke from the surgery my heart was apparently beating unusually fast so they decided to keep me overnight for observation.

Finally I was done with the surgery....now the recovery process... will be continued:)

Here is the youtube link to the video of my surgery

https://www.youtube.com/watch?v=1m2nJF5PsUw&feature=c4-overview&list=UUYLm6O32CJWAk80SGNpP1Gg

Thursday, October 24, 2013

Bleeding Heart

As I dam my river of tears
with a smile
a smile that
hides the pain

A bleeding heart I am
taking on others pain
commiserating
understanding
compassionate
empathetic
honest
straightfoward
Am I an oxymoron
or maybe just a moron

Empathy
comes natural
complaining
does not
Naivete
comes natural
Deceit
does not

No one
can imagine
depth of fear
i keep caged
in my heart

the recriminations
the consternation
the despair
the helplessness
the hopelessness
the degradation
the demoralisation

cos
A bleeding heart I am
taking on others pain
commiserating
understanding
compassionate
empathetic
honest
straightfoward
Am I an oxymoron
or maybe just a moron

 Thoughts of the future
I usually see thru rose
colored glasses
but they seem to
have been smudged a little
by that darn Parkie
Parking into my life

slowly but surely
eroding all the positives
adding all the negatives
slowly and sleathily
took my handwriting away
took my beautiful penmanship
and turned it into squiggly lines

Greedy Parkie
even took my
ability to speak properly
me, who was a chatterbox
now refuse to talk to
people on the phone

Confidence turns to
Under confidence
Talkative turns to
Quieter
extrovert turns to
introvert
once life of a party
has no life to party

but hey enough
with the moaning
groaning
foaming
lamenting
snivelling
ranting

cos
I still want to see the sun
feel the caress of the wind
feel the raindrops on my face
enjoy the wildflowers

and yes
even if I cannot be a whole
atleast do not want to be a hole

so as much as i can be
a daughter to my parents
a sister to my brother
a partner to my spouse
a daughter-in-law to my in laws
a parent to my babies
a friend to my friends


in my own little way
I strive to be that
May not win any accolades
but try my best
to be the best i can  be
given all the constraints
cos I tell myself
I CAN DO IT:)))













Thursday, September 26, 2013

Foggy Bottom?



Fog
mistymysterious
soft
fluffy
wet
enticing
embracing
blinding

stepping
encompassing
suffocating
disorienting
surrounding
stumbling
moisture
cold
shivering
thudding

Shining
seeing
joy
relief
burning
happiness
drying
excited
smiling:))
PHEW!!!!
  •  

Wednesday, August 28, 2013

The "Joys" of being a Parkie mom...

Hmm yup I said Joys... and u must be wondering....that i have truly lost all my dopamine cells...but hear me out OK.

Mr. Parkie, the jerk who jerks me around came into my life in 2004..at the age of 36, prime of my life, just when i was thinking of getting back into the workforce, from which i had taken a sabbatical for a couple of years for the birth of my second son in 2002..my oldest born in 1999.  I have always been a person who enjoyed working outside the house, cleaning and dusting was not for me, if i did have some spare time would read a book, or learn something new online:) Well I had my plans and life had its and life's plan it was.

The ride from then to now when i am writing this, August 2013, has been a roller coaster ride indeed...biggest of all the searing guilt of getting a chronic condition into my families life ( yup am the first in my family to get it) of becoming a burden.... of not being able to be a good supportive wife and mother.

Parkie has been a part of my life for so long that I have almost forgotten how i was before Parkie...When i look back on my nine years with Parkie, i sometimes wonder how i overcame the dark moments in my life...tears by the bucketful, anxiety by the boatload, fear overwhelming, guilt all encompassing, in an emotional hell hole at the mercy of the condition and the mind altering drugs i am taking me to worlds unknown, so much so, i thought i was losing my marbles...some of my problems directly related and some in directly related to Parkie.......... trying so hard to overcome the black void of depression, almost felt like a physical effort, thoughts of ending my life running rampant...almost a sense of futility, a feeling of being trapped....i think it is god's blessings and sheer willpower that makes me smile and face the world....lets hope i can continue this without falling off... 

I have always encouraged my kids to write about their feelings about Parkinson's and me and every birthday or mother's day, my kids took a printer paper, folded it in half and wrote out personalised messages, that rival any Hallmark card... and I have a collection of those sweet notes from their heart:) They are the reason that makes me get up everyday and face life with a smile:) Now as my little one gets ready to head off to middle school and my oldest getting ready to go to high school I would like to share what they wrote.

This one is written by Ranai, when he was ten, recently turned eleven:)


"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."


And this writtten by Rishab my 13 year old:)

"A special family member to me is my mom. She was diagnosed with Parkinson’s disease in 2004, so her life is much harder than the rest of us. It is as hard as a fish with no water. Her body can never stay in one place, she is always shaking, and sometimes she can’t even walk. However, she lives it to the fullest. She is really funny, and is always optimistic. That is what I admire about her. However, we do have to help her in parts of the day because she is shaking. This is because of the disease. This really limits her, and this is why we don’t really go on vacations that much. Life is hard, but my mom is really special to me because of the way she handles her disease. I also have to say that my dad is very special also, because despite of all the struggles we are facing as a family, he always keeps his head up and never gives up. That is why I admire my mom and dad and think they are special."

So yes, as my dad said, these two are your treasures, your pillars in life..... while i think why did they have to have a mom, like me, who cannot be fully involved in their lives, then again i think, well atleast i m here to celebrate their milestones, there are many who are not so lucky, that is when i realise the joy of being a Parkie mom:)



Friday, August 23, 2013

My Bro


 Originally written on February 19, 2012 at 9:55am
 
I remember you came into my life
a red squalling bundle
with a smooth bald head and peeling skin

Little did I know then what a gift
I was given, a lifelong friend:)

I remember you guzzling up
bottles of milk and happily
chucking the bottle away after u were done:)

I remember going together
to our school in the same bus
where you always made sure that
I had a seat to sit:)

I remember you punching someone
who dared say something nasty to me

I remember you refusing to call me DiDi
and Ma and me devise a way so u did
end up calling me Di:)

I remember countless times running around
our sofa as soon as we were alone,
playing our wn game of fun, sometimes
ending up fighting and crying:)

I remember that no matter we fought
incessantly in the house
We always were clear on one thing
No on messes with either of us otherwise:)

I remember you looking up to me
and before I even realised you grew up
and I had to look up to u:)

I remember we eating dinner on the carpet
in front of the TV as we watched the serials on TV

I remember listening to our favourite cassette
of Jagjit Singh of whom u are still a fan of:)
while we were having our dinner
we always played  that tape

I remember you going to the ashram
and staying without you for a week
and visiting you there and you
who did not eat veggies, started eating them amd doing puja every single day:))))

I remember you going away to study
Engineering and how bereft I felt
as if a very important part of me was missing

I remember you crying inconsolably
as I got married and left and then you
visiting me when I was leaving the country

I remember we hugging each other crying and hoping
we wil be together soon

It took a few years but here we are

Now as you turn 40, many things have changed
in our lives, as we go through our daily grind

But the one thing that has not changed and never will
is our love for each other, our unique bond we have
as a brother and sister and as we both know
that even if we do not meet often or say it often enough

I got ur back and you got my back:)))
We will be there for each other
That is the beauty of a sibling

I love u my dearest Bro from the very bottom of my heart:))

Love
Di