Ken passes out handouts in the driveway.
Patricia and Ken put out the Welcome Mat for the local kangaroos. Here are a couple who are coming to call.
A mother kangaroo peers in the window while her joey hangs out in Mum's pouch.

Patricia

New South Wales
Australia

PARKINSONS PROGRESS

1964 saw my future husband Ken and me at a friend's home on Christmas Day. Another couple arrived, an older couple, the lady having difficulty walking, with a face totally devoid of expression, absolutely blank. Everyone whispered "She has Parkinsons Disease". I turned to Ken and said " I don't want to finish up like that woman". Probably the most prophetic statement I have ever made.

Forward to1982. I went to my local doctor with what I can only describe as a "heavy" left forearm. After a careful examination I was told there was nothing wrong with me at all. Little did I know that this would be the start of being looked upon as a hypochondriac and probably pre-menopausal woman.

At this time I had a happy life living beside the water. I had a part time job, a hard working husband, my three sons, one blue cattle dog, two cats, one very ancient goldfish and a budgerigar named "Somebody". So you see there was no reason or time for me to imagine things.

Eight years after my first symptom I was very ill. I spent a lot of time lying on the lounge with my "Heavy" arm supported on pillows, with worsening leg shakes, which I had been assured was only a pinched nerve in my back. I had also lost my sense of smell.

About once a year I would visit the local doctor. "No, you definitely don't have Parkinsons Disease (although I hadn't asked) you are too young"! Early 1994 saw me sent to a neurologist. "Do you drink?" No I don't. This question was asked twice on my initial visit." Off you go for a CT scan then." That was clear but as I walked out of the neurologist's office his parting comment was "Of course, there is always the grog." How degrading!

Eighteen months later saw me back to the same neurologist. He could not believe the deterioration, but was still not prepared to diagnose PD. He sent me to another Neuro, who, with three of his colleagues, put electrodes on my fingers and toes, first one side then the other and asked me to count backwards from 100 in 7's then 7 1/2s. I concentrated so hard I was literally bouncing off the walls. They then gave me125mgs of Sinemet. Total relief within 20 minutes. Yes , you do have PD.

I came away happy that I had an answer. Then of course the shock set in but I refused to feel sorry for myself. Every so often, however, I allow myself to feel a little bit angry or depressed (10 minutes a week)

What to do? sit in the corner and let this thing destroy me? Or learn as much as I could and fight? Really it was no contest. The only little ripple came as we arrived at our first supporters meeting. Many tears and me saying everyone looked so OLD. We nearly went home but I knew if we did we wouldn't come back. Guess who is now OLD?

We told our three sons, one of whom hung up on me (to my dismay). Soon after he phoned back, saying how much he loved me and how could this happen to his beloved mother.

There is no cure. Symptoms can be controlled with drugs and for some there is Deep Brain Stimulation, But remember, PD remains relentless and always progressive

Eleven years since diagnosis has seen me slowly deteriorate. But the positives have been amazing. I am now a middle aged, tending to elderly woman who sleeps in satin PJ.s with satin sheets to lie on, satin pillows to cry on, not to mention dribble on! The bed has so many bars it looks like a cage. When I wake it's into my electric wheel chair and off to the bathroom to yet more bars. Eventually, out of the wheelchair and half "On" I find it easier to walk backwards. Rear vision mirrors needed?

My mind is kept active with cryptic crosswords and poetry writing. I've taken up drawing,  pastels, charcoals. I have taught myself basic computer skills and go to a discussion group each month. I have amazing support from so many caring people, several of who take me away for a weekend twice a year for Respite.

Best of all I have become, I believe, a better person much more tolerant and caring with a new found ability to relate to others. My future hopes are for a cure, if not for me then at least the next generation.

Last but not least is my husband, my soulmate, my carer. I sometimes wondered  what would happen if I ever became incapacitated. I found out didn't I?

On Christmas Eve 2004 we went to our local doctor and he sat and took a long hard look at Ken and said "I'm sorry mate but you have Parkinsons Disease too" He was confirming what we already knew in our hearts.

How would we tell everyone? How would we deal with this double whammy? The same way we dealt with me. Love, determination, a sense of humour and lots of cuddles.

We have the love and support of our sons, family and friends. But most of all we have each other!!!!." We are lucky people"




Patricia with her youngest son, Glenn, and Rasheda Ali. The occasion was a parliamentary forum at which she addressed federal Parliamentarians, researchers, and neurologists, and Rashida launched her book.* Patricia says, "It was amazing and I still pinch myself."

*"I'll Hold Your Hand So You Won't Fall: A Child's Guide to Parkinson's Disease" by Rasheda Ali, with forward by Mohammed Ali.

A Poem for a friend who is the second person I ever spoke to about PD.
She has just retired and I miss her:

Oh dear, you can't go and retire
For you're the one who helped me out of the mire
of sadness, when diagnosed with PD.
Really all I wanted was to flee
But there you were, little parts in the PD videos
C'mon Pat, stand up and be counted that's how it goes
In the corner, or otherwise spring to your feet,
Our life you know is now Bittersweet.

Up I came with a vengeance and a new resolve.
Parkinson's, <it's around me you'll revolve.
With you always there to talk to when needed.
Not often, you know but always I've heeded
your good advice or a long talk
when we saw who PD was starting to stalk.
My beloved Ken. Oh how can it be?
Why don't you PD, just stay with me?

Now, I just sit here and cry
Those years we've shared , they've all gone by.
Dear girl if you really must away
think sometimes of me in a happy way.
For I'll be wistfully thinking of you
On the blue days, what to do, what to do
I won't ever forget you, my first line of defence
I give you my thanks, you made so much sense
Goodbye for now, put your feet up
Enjoy your Autumn, go, raise a cup