Share Your Story
by Sarah West
Change is a wonderful thing, it can bring good things and bad, uncertainty and unfamiliar territory, it also can be seen in the way we live our lives and grow up or apart.
I am a believer that if you set a good example, that other good things will follow on by those who have learned from you.
Helping someone every now and then isnít so bad, I feel a little better within myself each time I do something for someone else, whether itís bringing in their mail, or helping them on the train to get a seat.
I wish everyday that my mum was here but I know in my heart that she is in a better place. I am a stronger person because of what my mum went through for so long, we all went through some kind of suffering but never ever will we know what she actually went through all those years.
My mum treasured everything, the smell of the roses, the sunshine, the joy and pleasure you get from helping someone else and putting their needs before yours.
The country drives with mum and dad, a flask of hot water, a container of tea bags and a tin of biscuits, maybe even some cake.
Pulling up along the side of the road somewhere we hadnít been before and sometimes to somewhere we had, I cherish the memories of the time I spent with the both of my parents on the country drives we went on.
A walk around the town, a stop off at the toilet, maybe a photo taken, Dadís stories about where he grew up and then we were off again to someplace else.
Drifting off to sleep for a quick nap, dad pointing out ďsee that old tree there, itís been there for fifty years, itís colouring is so different, see that?Ē
My mum and I would have been asleep for at least the last 15 minutes and would have no idea as to what my dad was talking about, but we heard the end of what he said and both agreed that the tree was nice, old and had different colouring to most others. I am sure that he knew we had both been asleep.
A few years passed after the country drives when I was a kid driving around with my parents, checking out the scenery, having cups of tea and dunking teddy bear biscuits. Changes happened in my life and the lives of the ones closest to me.
My mum had Parkinsonís disease, it was something she had under control for so many years, but then changes occur in life, your body and your brain and the Parkinsonís that you thought you had under control starts to take over your life.
Life goes on with the changes that we are thrown, the new opportunities that come our way and we way we learn to deal with the changes in our life one way or another. Prognosis and diagnosis given to us by doctors and specialists make us think good things and bad: What if? Why didnít it happen? Why did it happen?
If changes were never to happen to us, we would never learn new things, go new places, try new food or be with the one we are with today or the one we are moving on from.
With the Parkinsonís situation slowly taking over our lives, we as a family had to make changes such as who would do the daily household stuff to make sure each day went along smoothly at home. Whilst my mum was having her medication changed in a rehab centre to try and lengthen the period of time she had ďonĒ rather than ďoffĒ. Changing the medication from mumís current dosage meant a great deal to her daily living as one minute she could be fine and walking and talking normally and the next changes would occur in her brain, tremors would set in and she would literally freeze.
Being in a rehab centre for movement disorder sufferers wouldnít be the easiest place to live, if I was the one living here I would be trying each day as hard as I could to get better so fast that I could get out of there.
Walking around the grounds of the rehab centre, I would start thinking is this it? What now? Where do we go from here? What has happened to my mum? Whatís going to happen to my dad?
It must be hard having your partner of so many years go into a place supposedly to get better but possibly in the back of your mind is that inkling that they will never come home again and share the same bed with you. Never to hold your hand and give you that loving hug the same way they did all those years before.
Parkinsonís disease is an awful one, it cripples you, makes you struggle so much harder than you did before to do the same things as you always did and it puts you and your family through sheer agony.
Changing medication was the start of a journey mum probably should never have gone on, but I wonder what would her life had been like if she didnít. And I canít answer my own question.
Changes started to occur, falls started to happen, tremors were more frequently and then no longer the same person as the one who gave birth to me would be in front of me.
ďWe are doing what we can. Your mum isnít responding to the medication as we would have hoped therefore, itís time to change it again." These were crushing words.
Outside of going to the centre, life continued, I started to look after a veggie patch and play with my dog molly more often, still going to work, all of which helped me stay sane and keep my mind off my mum.
But then as soon as everything was done and if it was nice day I would be off to visit mum to get her out of the room she was in and outside into the gardens. I would push her around in a wheelchair to see something different than the four walls of the room she was pretty much confined to. At first, my mum was able to walk around when she went into there, but as time went on and continuous changes to medication occurred her walking and balancing werenít as good as they once were and a wheelchair was the safest option.
Dystonia occurred in my mumís legs, this caused them to seize up and turn in towards each other, making them unbearably painful and uncomfortable. No matter how her legs were on the wheelchair we could never get a happy medium as to where to put them so pain wasnít inflicted.
Each day brought new things, new visitors and new friends, my mum always tried to help if she could the other people that she shared her room with, if someone needed help my mum would be the first to ring a buzzer or call a nurse.
Her feelings were never on show, a tear was hardly shed while we were visiting, and jokes would always make their way into the conversations somehow and a smile or a laugh would be the key that somehow my mum was trying her best to be alright and as I remembered her.
For the next year and half, my mum stayed in the rehab centre, but moved after a while into their nursing home ward. This was a huge change and not one that would help, this would in turn start to age her and desensitise her.
The people in the ward were a lot older than my mum, a lot worse off in some ways and this was very eye opening for me and I think for anyone that went to see the people there.
We use to sneak in happy meals from McDonaldís to the nursing home, it made mum happy and also was a change in the very ordinary looking food she was meant to be eating.
On Motherís day, Christmas day and at Easter we would hire a wheelchair taxi and bring mum home for the day, this was a big event, I would try and do my best to do a really good lunch and dessert in order to make the food so much better than what the nursing home had on offer.
We would forget about where mum had been living for the day and concentrate on what was around us.
Dad would take mum up and down the driveway, me walking along side and we would all stop and give mum a chance to smell the roses outside their bedroom window.
Molly would be near the side of the wheelchair, not knowing whatís going on but I am sure she knew something, her little face always seemed to have a smile on it.
The chooks would be running around and Sophie, our kelpie would always be trying to round them up but going to no particular place, not even back inside their yard, her silliness gave all of us a bit of a laugh so that was something different.
My mother was diagnosed with PD when she was 40, she died when she was 63, not because of PD as it won't kill you but it aged her very fast.
As a result of coronial inquest we found out that my mother was born with enlarged heart, that we didn't know anything about. The stress of PD waiting for medications, making sure they were on time and high blood pressure combined were what put an end to her life. I have written a short story on some changes that occurred in my life, although it is not finished I would like to share it.Posted by sarah west on June 25, 2009