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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

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 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 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 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 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 the recovery process... will be continued:)

Here is the youtube link to the video of my surgery