By Anne Atkin March 16, 2010
In 2005, I was diagnosed with Parkinson’s and straight away there was this persistent voice in my head that was saying the same thing over and over, “You’ve got Parkinson’s. You’ve got Parkinson’s”.
So I sat in the neurologist’s room trying to cope with what was happening, still thinking that the diagnosis was wrong. I couldn’t have Parkinson’s. That was something elderly people got, elderly people who shook a lot and I didn’t shake. The diagnosis must be wrong. My frozen shoulder was just that, a frozen shoulder. Admittedly I had had it for years but maybe mine was stubborn. As for the other symptoms – the weakness on my left side, the drooling, the pins and needles, the fatigue, the aches and pains – there was a perfectly logical explanation. “it’s menopause, it’s because I’m middle-aged, it’s anything but Parkinson’s.” I was scared and as far I was concerned, this was the end of my life as I knew it. All my plans had just flown out of the window.
But the voice in my head knew what it was talking about. I did have Parkinson’s. The twenty eight 11 year olds in my classroom had noticed ages ago that I was not quite myself; I tripped all the time, I was talking too fast, my voice had become monotonous, I didn’t swing my arm when I walked. They were more aware than I was, and they were wonderful when I told them about Parkinson’s. “Yeah”, they said. “We wondered what was wrong with you!” The girls in my class took it in turns to get water for me when my medication timer went off.
I had planned to retire from full-time work at the end of the year and do permanent part-time. There would be outback trips, roughing it in a tent. Everything was planned. I loved planning, loved making lists! And because I planned, I just expected it to happen.
It didn’t take long for me to realise that teaching part-time was going to be impossible. The fatigue was overpowering. The rigidity was painful and sometimes my legs would feel like rubber bands. Also I found that my brain seemed all but useless. I prided myself on my ability to multi-task, but now I was lucky if I could brush my teeth and walk at the same time without tripping over. Sitting in the staffroom was interesting. I regularly poured my cup of tea down my front because I wasn’t concentrating. And I didn’t fall down stairs, I fell up them. Usually the only thing that was hurt was my dignity, but it got used to it.
People kept telling me how lucky I was that I had retired, how happy I must be, how nice it must be not to have another Monday morning assembly (true!). But I wasn’t happy – I was full of despair. I wasn’t retiring on my terms anymore. I felt rudderless, caught in a rip-tide called Parkinson’s. People tried to be comforting but it got to the stage that if one more person told me about an 88 year old they knew who had Parkinson’s and who was able to play golf 3 times a week, I would have screamed! I don’t play golf!
I woke up one morning at the beginning of 2006 and started crying. Twenty-four hours later I was still crying and that’s when I realised that I had a problem. It didn’t take long for the doctor to tell me that I was severely clinically depressed. There was no pleasure in life, and I smiled at people because it made them feel better. My sons were 18 and 20 and once they knew I wasn’t going to die they were relieved, but they were starting their own paths in life and I didn’t want to burden them with how bad I was feeling.
It took a couple of months of anti-depressants, an understanding doctor and some counselling before I knew what I had to do. I knew I had to listen to my own advice, advice that I used to give to my students. Generally it’s so much easier to give advice than take it but this advice had been part of a professional development day years earlier and it had stuck in my head.
The life we are living now is not a dress rehearsal. It is our one and only performance.
So, OK, this was my life. I had to start making choices and take control of what I could do, not what I couldn’t. Parkinson’s was something I had but it wasn’t who I was.
One thing I had planned for retirement was to do some sort of voluntary work and as I couldn’t see why having Parkinson’s should make any difference, I decided to go ahead and do that. So it seemed the logical thing was to ring Parkinson’s Victoria and see what I could do to help the organisation that had helped me. They had asked for a volunteer to help in setting up a library and that appealed so I rang.
“Yes”, they said, “we did ask, but we’ve got someone already”.
“OK”, I said, “I’ll help that person”.
“Does helping in a library interest you?” they asked.
“Yes” I said. “I’m a qualified librarian.”
I started the following week and I started getting my life back on track. I was still useful! I had skills that Parkinson’s hadn’t taken from me, had wonderful people around me who made me feel part of a team and as they valued me, I started to value myself.
Now the voice in my head was only whispering you have Parkinson’s, and I told it to shut up.
But Parkinson’s is progressive and although I knew what that meant, I found it hard to actually visualise how that would relate to me. We’re all on our own conveyor belt called Parkinson’s but we’re travelling at different speeds. Sometimes it seems to take a detour or actually stop long enough for you to admire the view but then it starts up again. It can be frightening when you look back and realise that something you could do 12 months ago, you have difficulty doing now. I talked to my neurologist and told him that I wanted to go to a Movement Disorder Clinic so that I could establish good habits now in preparation for whatever Parkinson’s threw at me in the future.
As I said, I was diagnosed in 2005, but Parkinson’s had been with me for many years before that. I look back and realise I had this in my late forties! It wasn’t menopause, or fibromyalgia (chronic muscle and soft tissue pain) or frozen shoulder. It was Parkinson’s, so it is not surprising that I was struggling to do all that I had to as a full-time primary school teacher and a mum to two teenage sons. I never felt well, was so fatigued, ached and felt so much older than I was. I even found that I couldn’t keep my art going. I lost the desire to draw and found that I couldn’t motivate myself.
That was then, but now art has become a huge part of my life. A comment from our Chief Executive Officer Glenn about how art is good for the brains of people with Parkinson’s, led me to Nancy Tingey in Canberra who had a ‘Painting with Parkinson’s’ group. Many emails later, I set up ‘Painting with Parkinson’s’ in Victoria and it is going from strength to strength. Art makes me forget I have Parkinson’s. It makes time fly, makes me feel relaxed and it makes me regularly burn our dinners!
Parkinson’s has taken many things from me but it has given me so much as well. I have had some wonderful times because of Parkinson’s and I’ve also had some terrible ones. I am enjoying life but I have learned to live more for the moment and not look too far into the future. I intend to have as full a life as possible but I know that it is important to be flexible in mind, because I’m certainly not in body! There is no point in moaning about what I can’t do because it’s such a waste of time and I could be doing something else.
I keep learning about myself too. Don’t ever underestimate how much personal growth you’ll have on your Parkinson’s journey. I am not the same person I was in 2005. I see things around me differently. I have learned that you don’t have to go mad getting things done while your medications are ‘on’. Take time to sit and smell the roses. I love gardening and in the middle of my favorite places I have chairs. I close my eyes and I think about all the people I love, the people I have met and what I have learned.
I have actually written about the things that Parkinson’s has taught me and the list continues to grow. For example, when you are told not to try doing two things at once, believe it. Last month I tried to open the car door, hold onto my cane and not drop the bags I was carrying. Well, I dropped the bags and I fell backwards into some bushes in the garden and could not get up. So I lay there and eventually a hand was extended to me and I was pulled out.
I have wonderfully supportive family and friends who will try not to notice when I fall asleep in the middle of dinner (which is why I don’t order soup), who understand my attachment to sticky ‘post-it’ notes because it’s the only way I remember things, and turn a blind eye when I miss my mouth with the fork.
Parkinson’s has given me many new skills. I am a better artist, I can get up and address an audience and I am not nervous in front of the media.
Parkinson’s has taken away much from my life but it has given me back experiences and knowledge about myself that I may never have known.
When I first read the title of Michael J Fox’s book “Lucky Man!’ I thought to myself ‘what a stupid title.’
But now I understand.