At the ministry you wait
See shuffling and clumsy gait
Is this the Minstry of Funny Walks
A questionning voice squawksIt is answered with humour
Ministry of Shakes and Tremor
Idea of Monty Parkinson’s
Holy grail and meaning of fun
Always look on the brightside of life
Even when Parkinson’s is rife
Sit around the round table
Eat pea’s if you are able
Gawain was so fearless in battle
Scared enemies with almighty rattle
Caused by tremor inside armours suit
Mighty warrior of repute
Another fable the life of brain
Tells how dopamine does drain
But like a lumberjack i’m ok
Even when Parkinson’s on display
Fear is one of Parkinson’smissions
As unexpected as Spanish Inquisition
Kill your parrot to force a confession
Take your pills or shaky regression
The ministryof shakes and tremor
Drafts legislation for this drama
If you want the true meaning of life
Monty Parkinson’s can cause strife
As you can probably guess I am a bit of a Monty Python fan once the idea of the Ministry of shakes and tremor came to me the rest just flowed.
Life has annoying habit of throwing bit of chaos theory into our lives.On Sunday everything was going as planned on my way to drop my daughter to her Mum’s I had my foot down going up a hill overtaking one car then a second.This time however engine said no. As I pulled alongside something had enough and the engine groaned , I moaned and the car had less power.I slowed pulling in behind the other car and then pulled into a layby only a very short distance I lifted the bonnet and immediatly felt the heat. This was no engine someone had replaced with a nuclear reactor and the best thing to do would be to let it cool down. I called Liz to collect Ilona and after she had gone put some more oil in the engine gave it another 30 minutes. Itried it and it was runing a bit better but not quite rightso I steadily drove home.Monday morning I took it to the garage to find uout later it needed a new engine. Do I replace the car or spend a load of money on it?
The car is my freedom. It facilitates my life. Getting to work, going shopping, takes me to badminton etc. Without it my life is less certain. I have to make arrangrments so other s can take me to work. Last night I went to Eden to see P J Harvey or the “droney” woman as a friend calls her. It was an excellent perfomance based on her new CD The Hope Six Demolition Project. I would have liked to have heard more of her old songs but even though this was the first time I had heard her new songs they engaged me. Her songs were varied and her 9 piece backing band complemented her well.Although after a while I felt the backing vocals were a bit too overwhelming. Parkinson’s means that standing for three hours is very uncomfortable standing still would lead to me stiffening up and pain. Enjoying yourself can be harder with Parkinson’s. So I moved about a bitbut even when standing still I would shuffle a bit. Slow movement but if videoed and then played speeded up may look like some form of unco-ordinated dance.
Afterwards we walked back to the car but my friend had forgotten where he left it and I hadn’t paid attention. The beer I drunk could somehow sense my distance from any toilet and hatched an escape plot from my bladder. Next to a carpark through a gateway there were bushes shrouded bydarkness as well as a handy wall to stand behind. So it came as a surprise when standing behind the wall I heard the sound of voices and they had torches i could see the beams travelling across the ground towards me. . The irony when I wanted light in my life where was it? It was waiting for me to hide in the darkto then jump out on me. I managed to be ready to walk in the lightbefore the toches reached me.Found my friend found his car and went home. As I went to bed I couldn’t help smiling. Life is good, can be hard work but life is also fun.
I have seen some posts recently about how most information given to people newly diagnosed tends to leave them worried or scared.Often there are stories about brave people struggling to cope. There are stories of some who felt they had to give up work prematurely. However I have heard of someone still working 19 years after diagnosis.
I am about 9.5 years after diagnosis and still working full time. There is more to my life than that though.I am single and half the week my 13 year old daughter lives with me. My 20 and 21 year old stepdaughters play a full role in my life. Since the start of the year I have been playing badminton every Sunday and improved over the weeks. Physically I will not be able to play as I once did but if you set yourself free from the shackles of your own perceptions you can improve and perhaps surprise yourself.
In February I took my daughter to her first rock concert. We traveled to Southampton by train and stayed in a Premier Inn. Standing for three hours at the concert caused me some pain but it is an evening I wouldn’t have missed. In February I finished my book Silverlinings and I still hope to find a publisher. It took me about 18 months and I am very proud of it. I think I have successfully written a book which contains a slice of me. I also travelled to London for a meeting at the Headquarters of Parkinson’s UK about how they can promote creative writing to improve the wellbeing of people with Parkinson’s.
Since then I have had evenings out with my daughter and one of her sisters. We saw the Circus of Horrors at Truro . A freakshow a bit Alice Cooper but with more gross. We saw Breakfast at Tiffanys starring Pixie Lott in Plymouth yesterday. A bit more refined with a witty script. Tomorrow I am going to see PJ Harvey perform at Eden.
In May I travelled to Twickenham for thefirst time to see England play Rugby against Wales. We had almost front row seats and saw a fast paced game that England dominated. A day to remember. After 9.5 years Parkinson’s is part of my life but a life there to be enjoyed.
I mentioned I am single but I am still dating. On Tuesday I will meet another lady for the first time. My profile includes details that I have Parkinson’s. There are still ladies that want to meet me maybe the next will be the love of my life. Always possibilities.
We over use words like icon and legend too many times. A man has just passed away who was a true icon, a legend. Muhammad Ali.
A man whose sporting prowess was fearsome.
A man whose humanity was awesome
A man whose dignity was everpresent
The start of a poem in tribute but I stopped there. It is his words I want to reflect on
“HE WHO IS NOT COURAGEOUS ENOUGH TO TAKE RISKS WILL ACCOMPLISH NOTHING IN LIFE”
“WHAT KEEPS ME GOING IS GOALS”
“I HATED EVERY MINUTE OF TRAINING, BUT I SAID, DON’T QUIT. SUFFER NOW AND LIVE THE REST OF YOUR LIFE AS A CHAMPION.”
“IF MY MIND CAN CONCEIVE IT, AND MY HEART CAN BELIEVE IT – THEN I CAN ACHIEVE IT”
“SERVICE TO OTHERS IS THE RENT YOU PAY FOR YOUR ROOM HERE ON EARTH”
“IT’S A LACK OF FAITH THAT MAKES PEOPLE AFRAID OF MEETING CHALLENGES, AND I BELIEVE IN MYSELF”
“THE MORE WE HELP OTHERS, THE MORE WE HELP OURSELVES”
How Ali wanted to be remembered
ALI’S RECIPE FOR LIFE
What would you like people to think about you when you are gone?
“I’D LIKE FOR THEM TO SAY.
HE TOOK A FEW CUPS OF LOVE.
HE TOOK ONE TABLESPOON OF PATIENCE,
ONE TEASPOON OF GENEROSITY,
ONE PINT OF KINDNESS;
HE TOOK ONE QUART OF LAUGHTER,
ONE PINCH OF CONCERN
AND THEN HE MIXED WILLINGNESS
HE ADDED LOTS OF FAITH,
AND HE STIRRED IT UP WELL.
THEN HE SPREAD IT OVER A SPAN OF
A LIFETIME, AND HE SERVED IT TO
EACH AND EVERY DESERVING
PERSON HE MET.”
In the words of Barack Obama
“HIS UNIQUE ABILITY TO SUMMON EXTRAORDINARY STRENGTH AND COURAGE IN THE FACE OF ADVERSITY, TO NAVIGATE THE STORM AND NEVER LOSE HIS WAY. HE HAS SHOWN US THAT THROUGH UNDYING FAITH AND STEADFAST LOVE, EACH OF US CAN MAKE THIS WORLD A BETTER PLACE. HE IS, AND ALWAYS WILL BE THE CHAMP.”
— President Barack Obama
So far not a word about Parkinson’s. Yes Ali had Parkinson’s but he truly was so much more as we all are. Just one more quote from Ali.
“I know where I am going and I know the truth, and I don’t have to be what you want me to be. I’m free to be what I want.”
Copper-Gingerspice- a more successful hunter than the cougar who bore the same name-He had the killer instinct where she merely played with her prey
Tasha-Sporty spice -she sported a voice just as shrill as Mel C
Meg-Posh spice-had the poshest softest smoothest coat right until the end
Fizz-scary spice-The scariest of cats tto give a tablet to- trulydangerous when backed into
Bruno-Babyspice(or bunny spice) A mere youngster but old for a bunny reaching the age of ten
My four cats and rabbit had good lives but were all old and all passed away in a 9 month part of the last year. They were much loved and enhanced my life.
They were all friends and as such provided companionship. In general studies link pet ownership with reducing signs of depression in people with chronic illnesses and reducing loneliness in the elderly.Dogs can be trained to help people with Parkinsons maintain balance and help movement when freezing has occured.
Pets can encourage exercise and activity and help provide a routine.Stress is one of the worst things for Parkisons and the comfort and affection of an animal as a companion can relieve it. A companion that shows loyalty and attention like a cat or dog that curls up beside you when it senses a problem gives you a boost.
So today I pay tribute to five pets who added spice to my life.