INTRODUCTION

SOS! A PARKIE IN DISTRESS!

A blog for Parkinson's Disease (PD) patients, their family, their caregivers, and their friends - by a fellow patient.

This is also a forum for discussions and exchange of ideas. Please follow this blog, and share (for charity).

A necessary read because, all said and done, PD is a mysterious disease, notwithstanding the availability of so much information on the internet.

Read & Share for Charity!

Firstly, I am pleased to announce that the first chapter of this blog, to be posted shortly after this, is  sponsored by a close family friend of over 30 years. I have known Anna & Howard since I was 19. All three of us were from the insurance industry. It was Anna who introduced me to the medical assistance industry through then Chairman and Founder of the company in 1990. I worked for that company for 22 years. Howard and I share the same birthday. We never failed to send wishes to each other on that auspicious day. 

The couple is donating M$2 per Facebook share up to a maximum of M$ ____of Chapter 1 (Prancing Amok with Michael J. Fox) to The Little Sisters of the Poor, Penang with a minimum of M$1000.

The receipt from the beneficiary of this generous donation will be posted on this blog/FB. 

Please read, please SHARE.

Sponsors for subsequent postings have been secured or being discussed. Sponsors are required to donate directly to the chosen Charity and post the receipts on this Blog/Facebook.

Introduction

I was diagnosed with Parkinson’s Disease (PD) in July, 2008. This is my 10^th year – during that period, I have changed, physically and mentally. PD has affected my mind, my body and my soul to the extent that I am about to undergo Deep BrainStimulation (more of this later).

I promised myself at the time of diagnosis that I won’t allow myself to reach this stage. That I will keep myself in good shape. Unfortunately to a large extent, I have failed. There were good and sound advice which I ignored. There were fundamental, simple steps I could have followed but did not. There were things I did which I shouldn't have done. So there were lessons learned, and therefore lessons to be shared.

My body has given in – I am weaker and slower in every respect. I need a lot of extra time and efforts to take a shower. Buttoning up can be a challenge, and changing into a pair of pants is a risky task. I could fall and injure myself. I have the scars to remind me. Putting on a t-shirt could be suffocating. Literally! Because if  my hands stopped cooperating suddenly, I end up with a ski-mask.

My body twitches  and  contorts without permission, without giving notice of intent. It rebels and refuses to follow instructions  from my thought center. I began to think of myself as a social outcast. But my thinking has changed. I used to resent been stared at as I drag myself from place to place. I used to be secretive about my medical condition. Today, I will tell anyone who appeared curious "I am a Parkinson's Disease patient!" 

Dyskinesia started recently, but I hope to keep dementia and Paarkinson's Disease in abeyance for some time to come. Writing this blog will help. It gives me a sense of purpose. Still, I admit - MY BODY HAS GIVEN IN.

BUT MY MIND HAS NOT GIVEN  UP. I am stronger mentally; more determined than ever. If a task seems  uphill, I will do it. If a task seems  not achievable, I will take it on. So I have to put in more efforts. Put in more time. But I will do it. Planning this blog, and writing this piece, was a monumental task in itself. It would have been a piece of cake for me as recently as one year go. Not any more. Today, I could easily choke on piece of cake instead!Literally!Even a walk in the park is no longer the usual walk in a park. But, I promise to continue looking for parks to take long walks.

Yes, my mind has not given up.  That is why I am telling this story. I felt a compelling need to share my learning and my experience with newly diagnosed PD patients and tell them of the things I should have done but didn’t. I will unreservedly also tell them of the things I did but shouldn’t have. These do’s and don’ts, believe me, will help Parkies manage their condition better. I will share my story with caregivers to make them better understand what makes Parkies tick, why they behave the way they did, because understanding the reasons make it easier to care for people like us.

PLEASE COMMENT, ASK QUESTIONS. KEEP THIS BLOG ALIVE. KEEP THE PARTY FOR PARKIES GOING!

So this is my story. It is a story  about fear, anger and denial although not necessarily in that order. It is also  a lesson about life and acceptance, the absolute need to accept absolutely whatever life throws your way. I will be the first to admit this is easier said than done.

My story is also about family and kinship, about friends and friendships. And of course, the power of love. Remember this -  the love you received, in return for the love you gave, becomes a source of inspiration, immense energy and untold power, giving you the strength to  stand up and protect the people you love. Love gives you a reason to live. Familial love empowers you to go on living for the people you love. 

PD does not kill. But it could kill a Parkie’s spirit and  that, in my opinion, is a fate worse than death itself. This is therefore also a story about fighting back, a story of hope and how it  triumphs over hopelessness. It was a long and difficult journey for me, and I have flipped flopped, became hopeful and reverted to a sense of hopelessness and back again. But once I realized that there is more at stake than just my body giving way, and my mind giving up,  that what is at stake  is actually the fulfillment of my responsibilities to the family, the dreams  I had for the children my wife and I had lovingly brought into this world, I somehow managed to find that last bolt of courage and that last ounce of strength that I  thought I no longer had. That has energized me so powerfully. And I hereby give notice of my intent to fight back with all I have got.  

All I have got, by the way, is family and friends but that is enough. I have imposed on family and I have imposed on kinship; I have imposed on friends, and I have imposed on friendships. Fighting back will help mitigate those trespasses, I hope.

Hope triumphs over hopelessness.

Finally, this is a story told with a touch of humor.  Remember, there is a reason for everything that life throws your way. If you chose to cry over it, you cry alone. If you decide to take it in your stride and laugh about it, the whole world laugh with you! Let us stop crying alone. Let us laugh together come what may.

So when my friend called and regaled me with stories of his recent European tour, I responded with tales of my failed attempt to go to Ang Mo Kio on my own. Another friend went on a  safari during a recent trip to South Africa. I was obliged to tell him how I tripped on my way to the Night Safari and didn’t complete my journey. 

Please SHARE FOR CHARITY with everyone you know, friends and family. And please get them to SHARE as well. I will be posting my very first chapter shortly (Chapter 1 # "Prancing Amok with Michael J. Fox).

Thank you Anna and Howard for your donation to The Little Sisters of The Poor, Penang.