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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:)

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 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
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 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