Fly with me

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:)

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:)

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

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

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

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:)

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