Come with me
Together we'll fly
as high as the highest sky
live a lifetime in every minute
cos who knows what life
may bring.....
Let us smile and grin
with a hearty sense of humor
push away all the negative vibes
with our positive vibes
lets see who can rain on our parade
sunshine and happiness
will come our way:)
Friday, June 10, 2016
Friday, October 9, 2015
Thoughts before going in for DBS:)
About three years ago around this time I was preparing for my brain
surgery and so many thoughts ran through my mind....what if I become a
different person emotionally, what if they accidentally go in and
rearrange my brain, that i become dumb or worse still become physically
impaired ... more than Parkinson's already did.... I asked my docs who
would be drilling holes in my head, what if they went in and found
sawdust..(omg) and that as they are digging around in my head could they
please increase my IQ?:))) I figured i should get something
more....cos it's not everyday that one has brain surgery....my docs
assured me i had a brain, said my IQ was high enuf and I came out of the
surgery a bionic woman, complete with electrodes in my head and a
battery pack in my chest powering those electrodes:)
Tuesday, September 15, 2015
Change
As I think back I realise Parkinson's has changed me, some in positive
ways and some in negative ways....It has made me realise that I have an
inner strength I did not know I had, it taught me to adjust and go with
the flow, to look for flowers and beauty instead of stones and
obstacles....to be thankful for the little things...to be honest with my
feelings..no matter what they are....make no mistake it is a chronic
condition with no cure and it starts in your head and pretty soon takes
over your whole body n mind.....it is debilitating, demoralising, takes
your freedom away, makes you dependent for things that most of us take
for granted....some days more difficult than others....yup life
inhibiting for sure
Monday, August 17, 2015
where did it go
I was a happy go lucky girl
a good person
though rebel a lot i did
arguing with my parents
insisting yes when they said no
but pampered and protected always
staying with them till i found
the man i wanted to make mine
oh dear life things were going smooth
even over troubled waters
little did I know that would be only ripples
in the sea of life
felt the little bump but married my first love
then moved in with my other family from my family'
I spread my cheer and love
and received them back with equal fervour
With little glitches which were smnoothed over
oh dear life things were going smooth
even over troubled waters
little did I know that would be only ripples
in the sea of life
Came over to a new world
leaving family...just my love and me
Excited and nervous and alone
We made our lives here
learning life's lessons along the way
Learning the hard lessons and curves life throws at you
Our perseverance and grit helped us tide over that
oh dear life things were going smooth
even over troubled waters
little did I know that would be only ripples
in the sea of life
Then moved on to the "big" things
Jobs for both of us, working hard and sincere
And once we were cruising along safely
We ventured into the parenthood role
Two wonderful boys later
Life was joy and nervousness and a kind of love
for these two precious bundles we spawned
oh dear life things were going smooth
even over troubled waters
little did I know that would be only ripples
in the sea of life
And just when we were happy travelling
over the bridge over troubled waters
a tsunami sized wave rolled over us
Almost drowning us leaving us gasping and sputtering
A tsunami named Parkinson's
oh dear life things were going smooth
even over troubled waters
little did I know that would be only ripples
in the sea of life
The biggest wave to hit us and we are still
learning to swim, to survive, to persevere
to hope, to rebuild, to recreate
Though things will never be the same
we will survive we will not give up
a good person
though rebel a lot i did
arguing with my parents
insisting yes when they said no
but pampered and protected always
staying with them till i found
the man i wanted to make mine
oh dear life things were going smooth
even over troubled waters
little did I know that would be only ripples
in the sea of life
felt the little bump but married my first love
then moved in with my other family from my family'
I spread my cheer and love
and received them back with equal fervour
With little glitches which were smnoothed over
oh dear life things were going smooth
even over troubled waters
little did I know that would be only ripples
in the sea of life
Came over to a new world
leaving family...just my love and me
Excited and nervous and alone
We made our lives here
learning life's lessons along the way
Learning the hard lessons and curves life throws at you
Our perseverance and grit helped us tide over that
oh dear life things were going smooth
even over troubled waters
little did I know that would be only ripples
in the sea of life
Then moved on to the "big" things
Jobs for both of us, working hard and sincere
And once we were cruising along safely
We ventured into the parenthood role
Two wonderful boys later
Life was joy and nervousness and a kind of love
for these two precious bundles we spawned
oh dear life things were going smooth
even over troubled waters
little did I know that would be only ripples
in the sea of life
And just when we were happy travelling
over the bridge over troubled waters
a tsunami sized wave rolled over us
Almost drowning us leaving us gasping and sputtering
A tsunami named Parkinson's
oh dear life things were going smooth
even over troubled waters
little did I know that would be only ripples
in the sea of life
The biggest wave to hit us and we are still
learning to swim, to survive, to persevere
to hope, to rebuild, to recreate
Though things will never be the same
we will survive we will not give up
Wednesday, August 12, 2015
Inner Peace
I
have learned that our body on the outside does and does not reflect our
insides,,,the physical vs the emotional, the tangible vs
intangible.....for eg your inner turmoil or inner happiness may not
reflect in the body but may reflect in our eyes.....we chose what we
show to the outside world....once your outside and inside world is in
sync, where you are not afraid of showing your emotions no matter
what....where you are not afraid to be naked, emotionally, that is, only
then maybe we can find inner peace..... #Sutapaism
Monday, August 3, 2015
Twenty things Parkinson's has taken from me
1) Movement - something that I had taken for granted
2) Handwriting - Turned my beautiful penmanship to chicken scratch
3) Walking forward - Another thing I had taken for granted
4) Stability - Literally leaves me shaken
5) Turning in the bed - Takes me about 5 minutes and most of the time I am drenched in sweat
6) Getting out of the bed - Most of the time it is roll....drop...squat and pull yourself up
7) Buttoning my own blouse - God forbid if they are small pearl buttons
8) Wearing my jeans standing up - Turns into "Dancing with the Jean"
9) Drinking anything without spilling - I leave tell tale signs of coffee....juice...heck even water
10) Eating without dropping - I have had food flying away before it entered my mouth, dropping food on the floor
11) Freedom - My most cherished thing i have ever had....Need to have someone close by all the time
12) My ability to drive - As I would be a danger to others and myself
13) My confidence - I would rather not do than do
14) The ability to get out of a chair - majority of the time I feel like my bottom is glued to the chair....other times I use the slip, slide and pull method
15) The ability to walk without my feet velcroed to the floor - I have lost count of the number of times I tried to put a leg forward before realising it is not moving and barely saving myself from falling splat on my face
16) Self esteem - My inability to walk to the bathroom to take care of my needs, by myself
17) Unable to control my head from nodding and shaking like an out of control pinging ball
18) Choking and swallowing - Heck I even choke while drinking water
19) My beautiful, sexy voice - my most important loss ...I did on air radio,, podcasts and video, none of which I can do now
20) Most of it my dopamine cells in my brain - Parkinson's is on a murdering spree and has killed almost killed 90 percent of the cells
So I figured the world is not ready for me:) Because if I am so smart and witty with only 10 percent of my dopamine cells working imagine how it would be if I was at 100 percent:)
2) Handwriting - Turned my beautiful penmanship to chicken scratch
3) Walking forward - Another thing I had taken for granted
4) Stability - Literally leaves me shaken
5) Turning in the bed - Takes me about 5 minutes and most of the time I am drenched in sweat
6) Getting out of the bed - Most of the time it is roll....drop...squat and pull yourself up
7) Buttoning my own blouse - God forbid if they are small pearl buttons
8) Wearing my jeans standing up - Turns into "Dancing with the Jean"
9) Drinking anything without spilling - I leave tell tale signs of coffee....juice...heck even water
10) Eating without dropping - I have had food flying away before it entered my mouth, dropping food on the floor
11) Freedom - My most cherished thing i have ever had....Need to have someone close by all the time
12) My ability to drive - As I would be a danger to others and myself
13) My confidence - I would rather not do than do
14) The ability to get out of a chair - majority of the time I feel like my bottom is glued to the chair....other times I use the slip, slide and pull method
15) The ability to walk without my feet velcroed to the floor - I have lost count of the number of times I tried to put a leg forward before realising it is not moving and barely saving myself from falling splat on my face
16) Self esteem - My inability to walk to the bathroom to take care of my needs, by myself
17) Unable to control my head from nodding and shaking like an out of control pinging ball
18) Choking and swallowing - Heck I even choke while drinking water
19) My beautiful, sexy voice - my most important loss ...I did on air radio,, podcasts and video, none of which I can do now
20) Most of it my dopamine cells in my brain - Parkinson's is on a murdering spree and has killed almost killed 90 percent of the cells
So I figured the world is not ready for me:) Because if I am so smart and witty with only 10 percent of my dopamine cells working imagine how it would be if I was at 100 percent:)
Thursday, July 30, 2015
My Parkie Journey
I guess I am truly special. Parkie loves me a lot....he came into my
when I was only 36.... behaved with me for the first few years and then
started messing with me....7 years into it, in 2011 I had to stop
taking a particular med because of a serious side effect....and I
almost killed myself...withdrawing from that med was apparently as tough
as withdrawing from cocaine.....i was hospitalised for 5 days where I
was on suicide watch....and had a long recovery process during
which the thought of ending it all was regular part of my thots....
finally managed to get out of the darkness.....then mid 2012 the docs
told me that my meds are not working and that brain surgery was my best
option so in Nov 2012 I had my brain surgery.... A surgery that is
life changing and improved quality of life for others....for me... well
no such luck....it has almost been three years and i have not improved,
in fact i have started slurring and am unable to talk....this in a
nutshell my journey and i have not even touched on my mental n emotional
upheaval
Tuesday, April 21, 2015
Parkie n Tech
You know sometimes I wonder where i would be if we did not have the
internet and now the social media where i get to share, make friends,
join groups that have people who understand in a heartbeat what I am
going through with Parkinson's...did not have that in 2004 when i was
diagnosed.....spent a lonely and hellish few years...till i found
blogging and video blogs and then facebook, though i joined PD related
groups only a couple off years ago....Am so glad i did:)
Wednesday, April 15, 2015
Parkie and Life
I have spent almost eleven years with Parkinson's. Has been an
interesting ride to say the least. Have been to hell and back several
times over, have learnt several life's lessons, have come across some
incredible people and some not so much, have learned to understand my
body and am amazed at the new tricks my body can do like walking
backwards, drunken walk, the stumble and fumble....but the most
important thing I learned is tto try and have a positive attitude and a
great sense of humor.....while this does not cure the condition, it
makes it bearable , cos crying messes you up and laughter is good for
you.....don't know where this journey will take me but hope to do it
with a smile:)))
Tuesday, December 2, 2014
Dark Monster
The black dark
oily slithery monster
waiting for an
opportunity
to overwhelm
to drag me off
to the dark abyss
I have learned
from experience
how frighteningly
easy it is
to get sucked in
and how terrifyingly
difficult it is
to crawl out
So now when I
see you approaching
I try my darndest
to keep you away
using my weapons
of my loved ones
their warm hugs
keeping you at bay
I know you have help
with the jerk who is residing
uninvited in my body
Mr. Parkie
Both of you rub your
hands in glee
Thinking you can win
but I have grown
wiser to your tricks
So while you may get me
I refuse to drown
I will do whatever it takes
to find the light
so help me lord
oily slithery monster
waiting for an
opportunity
to overwhelm
to drag me off
to the dark abyss
I have learned
from experience
how frighteningly
easy it is
to get sucked in
and how terrifyingly
difficult it is
to crawl out
So now when I
see you approaching
I try my darndest
to keep you away
using my weapons
of my loved ones
their warm hugs
keeping you at bay
I know you have help
with the jerk who is residing
uninvited in my body
Mr. Parkie
Both of you rub your
hands in glee
Thinking you can win
but I have grown
wiser to your tricks
So while you may get me
I refuse to drown
I will do whatever it takes
to find the light
so help me lord
Thursday, November 13, 2014
Life's lessons
As i
sit here in my comfy chair, my legs beating to a tune that only it
hears, the weird rhythm created by Parkinson's , which by now, ten
years later, controls my body,, mind and yes thoughts.
I do not want to identify myself with Parkinson's. I want to be just a regular 46 year old women going through my mid life crisis, worrying about my job or career, my kids, my hubby, my family.
But as they say, You make plans and then life happens... I mean it is hard enough to maintain relationships and raise kids, but with another twist or spoke in the wheel it gets very difficult. It did not help mattters that I was in denial desperately praying, hoping and wishing it was something else, something with a cure, something that i could get out off, desperately scouting the internet....meanwhile taking mind altering drugs.....while outwardly maintaining the facade of normalcy, I was in a hell that I could not share as there was no one who understood.
I was going through my honeymoon phase of Parkinson's which fueled my and others denial of the condition. I continued as before but pretty soon I had to accept the fact that my body was really deteriorating. So while my friends and peers were out making their career or making major decisions for their kids, here I was lost and bewildered and scared out of my mind and lonely. My husband was sill in denial and had work pressure, my friends heard me out, but it is impossible to express unless one goes through it.
Ten Years with this unwanted, uninvited guest in your body as I look back on these past ten years of my life defining moments I have realised that yes, I have had dark, challenging, frustrating days, days where i was ready to end it all ,...days when I have shed buckets of tears, so many "Why me's" and If onlys there have been some life lesson's learned, through all the hurt, the pain and challenges that comes with a chronic condition.
1) I have always been a pleaser....and I realised that one does not need another's approval to do something...you cannot please everyone.
2) It is ok to say NO
3) Don't sweat the small things.. Believe me life will throw you bigger curves.
4) Don't worry about what others think. After all they are not living your life
5) Health is Wealth
6) We freak out and worry ourselves endlessly about things we cannot control. Worry and take care of things that are in your control
7) Don't compare yourselves with others. Everyone's family and situations are unique to themselves. Do what works for your family.
8) This is a difficult one and one that I still have a problem with.....Guilt! Don't feel guilty if you are unable to do things that others do ( for e.g with me it is the fact that I cannot be the mom that my kids need, or the wife that my hubby needs or.......the list goes on)
9) Accept your strengths and limitations. Know yourself (very imp)
10) your attitude is in your control....positive or negative.... you choose
11) It really is up to you to be happy or sad, especially for things within your control. I understand there might be exceptions
12) It is very easy to curl up and say I cannot and difficult to get up and say I can, but you CAN do it.
13) It is so easy, sitting in our own live's to judge someone else's...Don't you have no idea what the truth is
14) Be kind to others. It does not cost a thing
15) You have a choice to laugh or cry....I choose laugh cos it is great for your facial muscles:))
Many more...but for now I leave it here....Now would I have come to these realisations if I did not have Parkinson's? That I don't know:) But this is what I have learned these past years while dealing with my condition. While none of them are rocket science or any out of this world lessons...this is what i realised were missing from my life:)
I do not want to identify myself with Parkinson's. I want to be just a regular 46 year old women going through my mid life crisis, worrying about my job or career, my kids, my hubby, my family.
But as they say, You make plans and then life happens... I mean it is hard enough to maintain relationships and raise kids, but with another twist or spoke in the wheel it gets very difficult. It did not help mattters that I was in denial desperately praying, hoping and wishing it was something else, something with a cure, something that i could get out off, desperately scouting the internet....meanwhile taking mind altering drugs.....while outwardly maintaining the facade of normalcy, I was in a hell that I could not share as there was no one who understood.
I was going through my honeymoon phase of Parkinson's which fueled my and others denial of the condition. I continued as before but pretty soon I had to accept the fact that my body was really deteriorating. So while my friends and peers were out making their career or making major decisions for their kids, here I was lost and bewildered and scared out of my mind and lonely. My husband was sill in denial and had work pressure, my friends heard me out, but it is impossible to express unless one goes through it.
Ten Years with this unwanted, uninvited guest in your body as I look back on these past ten years of my life defining moments I have realised that yes, I have had dark, challenging, frustrating days, days where i was ready to end it all ,...days when I have shed buckets of tears, so many "Why me's" and If onlys there have been some life lesson's learned, through all the hurt, the pain and challenges that comes with a chronic condition.
1) I have always been a pleaser....and I realised that one does not need another's approval to do something...you cannot please everyone.
2) It is ok to say NO
3) Don't sweat the small things.. Believe me life will throw you bigger curves.
4) Don't worry about what others think. After all they are not living your life
5) Health is Wealth
6) We freak out and worry ourselves endlessly about things we cannot control. Worry and take care of things that are in your control
7) Don't compare yourselves with others. Everyone's family and situations are unique to themselves. Do what works for your family.
8) This is a difficult one and one that I still have a problem with.....Guilt! Don't feel guilty if you are unable to do things that others do ( for e.g with me it is the fact that I cannot be the mom that my kids need, or the wife that my hubby needs or.......the list goes on)
9) Accept your strengths and limitations. Know yourself (very imp)
10) your attitude is in your control....positive or negative.... you choose
11) It really is up to you to be happy or sad, especially for things within your control. I understand there might be exceptions
12) It is very easy to curl up and say I cannot and difficult to get up and say I can, but you CAN do it.
13) It is so easy, sitting in our own live's to judge someone else's...Don't you have no idea what the truth is
14) Be kind to others. It does not cost a thing
15) You have a choice to laugh or cry....I choose laugh cos it is great for your facial muscles:))
Many more...but for now I leave it here....Now would I have come to these realisations if I did not have Parkinson's? That I don't know:) But this is what I have learned these past years while dealing with my condition. While none of them are rocket science or any out of this world lessons...this is what i realised were missing from my life:)
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
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?
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
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:)))
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!!!!
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:)
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
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
Sunday, June 2, 2013
Swirl and Twirl:))
It is fun being a Parkie
especially after having
impulses going off in ur head
with electrodes n electrical
Pump up the voltage
Amp up the frequency
I wanna sizzle
not fizzle
I wanna dance
not be in a trance
So i may shake
while I bake
making what I bake
shake shake shake
but i wanna bake my cake
and yes eat it too
Pump up the voltage
Amp up the frequency
I wanna sizzle
not fizzle
I wanna dance
not be in a trance
So that I don't sneeze,
when I freeze
locked in mind and body
trying in vain
to send message
that is ok to move
and groove
Pump up the voltage
Amp up the frequency
I wanna sizzle
not fizzle
I wanna dance
not be in a trance
simple things i wanna
do, no great shakes
oops no shakes at all
do all that i had taken
for granted
the things i wanted
simple you know
Pump up the voltage
Amp up the frequency
I wanna sizzle
not fizzle
I wanna dance
not be in a trance
Yes baby
Cmon hold my hands
while we dance the shakes
away, unfreeze my feet
twirling and swirling
singing gaily
with nary a care in the world
cmon baby hold my hands:)
especially after having
impulses going off in ur head
with electrodes n electrical
Pump up the voltage
Amp up the frequency
I wanna sizzle
not fizzle
I wanna dance
not be in a trance
So i may shake
while I bake
making what I bake
shake shake shake
but i wanna bake my cake
and yes eat it too
Pump up the voltage
Amp up the frequency
I wanna sizzle
not fizzle
I wanna dance
not be in a trance
So that I don't sneeze,
when I freeze
locked in mind and body
trying in vain
to send message
that is ok to move
and groove
Pump up the voltage
Amp up the frequency
I wanna sizzle
not fizzle
I wanna dance
not be in a trance
simple things i wanna
do, no great shakes
oops no shakes at all
do all that i had taken
for granted
the things i wanted
simple you know
Pump up the voltage
Amp up the frequency
I wanna sizzle
not fizzle
I wanna dance
not be in a trance
Yes baby
Cmon hold my hands
while we dance the shakes
away, unfreeze my feet
twirling and swirling
singing gaily
with nary a care in the world
cmon baby hold my hands:)
Sunday, May 12, 2013
Happy Ma's day:)
Ma....such a small word but means the world. Have such wonderful childhood memories and today as a mother of two boys, i hope i can be even half a mother that my ma is to me...Simple, straightforward, the most sweetest, sensitive and yes the bestest ma in the whole entire world ..that is my ma..... friendly, compassionate, empathetic and strong, she always was and is to date involved in the community where my parents live:)
I remember when I was sick, I would hold on tight to her and insist she stay with me, selfishly as only a child can be, and she even though she knew, that I was not that sick that she needed to stay with me, would do so, unselfishly putting her day on hold:) She was my go between between me and Ba, especially if I had a bad report card that needed his signature, or needed his permission to go to a school trip:) I learned early on that I could get what I wanted if I shed enuf tears and shamelessly exploited it:))
The most fav part that has continued from childhood is her feeding me:) Many a times after we came back from school or were tired she mixes up the rice and sabji into the most tasty morsel in the entire world...I have been known to have eaten stuff that I detested, if Ma fed me, as I used to be so busy chatting with her,I would not notice...and yes whenever she visits me here in te US or I come home, she feeds me:))) My kids think it is very funny:))
As they say what goes around come s around..Now I am a Ma to two wonderful boys and all I wish and hope that I can teach my kids the life's ;lessons that my parents taught me, those that has helped me live my life, the way I am today is all because of my parents:))
I love u Ma:)
I remember when I was sick, I would hold on tight to her and insist she stay with me, selfishly as only a child can be, and she even though she knew, that I was not that sick that she needed to stay with me, would do so, unselfishly putting her day on hold:) She was my go between between me and Ba, especially if I had a bad report card that needed his signature, or needed his permission to go to a school trip:) I learned early on that I could get what I wanted if I shed enuf tears and shamelessly exploited it:))
The most fav part that has continued from childhood is her feeding me:) Many a times after we came back from school or were tired she mixes up the rice and sabji into the most tasty morsel in the entire world...I have been known to have eaten stuff that I detested, if Ma fed me, as I used to be so busy chatting with her,I would not notice...and yes whenever she visits me here in te US or I come home, she feeds me:))) My kids think it is very funny:))
As they say what goes around come s around..Now I am a Ma to two wonderful boys and all I wish and hope that I can teach my kids the life's ;lessons that my parents taught me, those that has helped me live my life, the way I am today is all because of my parents:))
I love u Ma:)
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