Coming to terms with Parkinson’s disease

Posted on Posted in 2015, Archive, Chronic disease, Employment, Medication, Neurological disease, Parkinson's disease, Stories

 

Rob Miller

Burwood, New South Wales

Rob was diagnosed with Parkinsons disease in 2010, when he was 49. He is now 54 and adapting to life with the disease. He has been married to Philippa since 1988 and they have three boys. When he opens the door and welcomes me into his house, I notice that he displays two signs of Parkinsons disease a rigid walk and masked expression.

 

The thing about Parkinsons disease

The thing about Parkinson’s disease is that you are unlikely to be aware that you have the disease for a long time, after the neuro-degeneration has well and truly begun. Not that anything can be done to halt the disease. The thief in the night!

Occasionally my left arm would shake during exercise. I mentioned this to a friend and he mentioned it to his wife, who happened to be a doctor. She sent me straight to a neurologist.

I had no idea that the the neurologist would tell me I have Parkinson’s disease. It was a shock. I was hoping there was nothing wrong, or at least, it was something less sinister.

I went to the morning appointment alone, and I was tying my shoelaces at the end of the examination when the neurologist told me. It was an ‘oh’ moment. But I continued about my day, it didn’t occur to me to change my schedule. I’m a lone wolf in that way, I just do what needs to be done. The news didn’t start to hit home until that afternoon. I felt confronted. Frightened. Alone.

Philippa knew about the appointment, but had to work that day. I hadn’t told my children. I’d simply put the appointment in my diary and turned up when I was supposed to. Philippa came to subsequent appointments. At those appointments we always talked about controlling the symptoms, but never about my prognosis.

Parkinson’s disease is a movement disorder and is linked to greatly reduced levels of dopamine being produced by the brain. As there are no tests to definitively diagnose the disease, other alternative diagnoses need to be ruled out. This can be difficult, as some symptoms can be confused with being tired or ageing.

I do take drugs, but the more they are used over time the less effective they become. I take a dopamine agonist Pramipexole which mimics the effect of dopamine produced by my brain. One of the potential side effects is compulsive behaviour, including hyper sexuality. I haven’t experienced that, unfortunately (he said, laughing), but my neurologist still asks whether I have every time I see him. I also take Levodopa, an artificial dopamine.

 

The impact on my work

I told two close friends, Andrew and Chris, before anyone else outside the immediate family. I just blurted it out at dinner one night, about a month after the diagnosis. Their reactions were quite touching. They were shocked, of course, as well as supportive. But the basis or our friendship is our friendship – not the fact that I have Parkinson’s Disease. I think they are looking out for me without being obvious. They judge how and when to bring it up, and they take their cue from me as to whether I want to talk about it or not. I tend not to bring it up, it is just the way I am. I think this is something for me to deal with and no one else.

I then informed my fellow Principals at the firm of my diagnosis a short time later, and even made a joke that the Parkinson’s would play havoc with my putting. My news, and my attempt at humour, were met with a respectful silence. I think it is because of the nature of the disease… people don’t understand. If you say you have terminal cancer, well, everyone knows that doesn’t end happily. But a neurological disease? Few people know what it means.

The first concrete decision I came to was to work less. I was a patent attorney. It was a perfect career for me, a marriage between writing, engineering and law. But I began to experience difficulties performing my work to the standard I was used to, and it was clear that work would only become more difficult.

I moved to a four-day work week, and there was a definite winding down. I became selective about the clients I dealt with and the projects I worked on. I took Wednesdays off, and it was a joyous day I looked forward to each week. I went for walks, I played golf, I explored parts of Sydney that I hadn’t seen. It was great fun, and quite rewarding and therapeutic.

A little over a year ago, I decided to cease work altogether. I went from four days to none at all. I realised that the time had come. It was becoming difficult to concentrate at work, and sometimes clients and colleagues would ask if I was alright. It was perfectly clear that I wasn’t capable of doing the work I once had, and this caused me a great deal of anxiety.

And so I left. I went cold turkey; I chose not to keep up contact. I think that once you have left, you have left.

I threw myself into renovating our beach house. The renovations had been going on for a while, but I became more engaged in the process. It felt like I was on holidays. But in the months after that, when everyone went back to school and to work that feeling ended. My wife and I agreed that it was my turn to do the household chores and all that she had done before. I took on a more domestic role, and I even took a few cooking lessons.

But as this year has worn on, I have begun to miss the adult world. I’ve taken up playing bridge. It is an intellectual game, and I like that. Exercise is my constant companion, and I enjoy the occasional trip away with a buddy. But keeping myself occupied and engaged is an issue that is increasingly demanding my attention. I know I have to keep the intellectual side up, and playing bridge is not enough. Next year I might take up a short course of study, maybe something in the humanities.

 

The impact on my family

I decided that work was the only thing that would change, everything else would continue as normal. I have three boys. Telling them was a bit haphazard, actually, but the diagnosis wasn’t hidden away. We just didn’t talk about it often. The boys kept their feelings to themselves. We did start a running joke at the dinner table. I would say ‘pull my arm’ when it was tingling or feeling wrong, and they would.

But my approach drives my wife crazy. At the beginning it was difficult for her. She wanted to talk to her friends about it – I think that was part of her way of coping. But I preferred to keep it to myself while I was still processing what it meant. Still, the world didn’t collapse around us, and we continue on. I see a Stoic practicality in her reaction, and her Scottish Presbyterian heritage means she makes the best of it and cracks on.

That has been my take on it as well. I think life is business as usual. I get on with it – I take the medication, I exercise, and I do what needs to be done. But I have to recognise that there are some things that I can no longer do, and some things that take me longer to do. Writing by hand is now very difficult, as are doing up buttons and tying my shoelaces. Basically, my fine motor skills are shot to pieces. Still, I try to be as normal as I would otherwise be. I can still drive, I can even still ski.

 

How I feel now

I experience fatigue. Some days are not as good as other days, and I have to take a day to recover. For me, I think exercise is the key. I work with a personal trainer, who I count as a good friend, three days a week. It is integral to the way I manage this disease and it is vital to controlling my symptoms. If I don’t exercise I get stuck in a Parkinson’s spiral of stalling and freezing up.

Things take me longer these days. I am always the last one out the door. And I am slow at the household chores – peeling potatoes, folding the washing. These are mundane things, and it is frustrating that I can’t get through such simple tasks.

My wife has engaged a bit with Parkinson’s Australia. There is a bit of literature around the house, but I never read it. She finds the disease very frustrating. I think it must be frustrating for the partners of people with diseases like Parkinson’s. No one can be understanding and accommodating to another person’s needs and changes to their health all of the time.

I’ve avoided being involved in any Parkinson’s organisations. I don’t feel that I need support groups, I think I am functioning fairly normally. If I went, I would meet people whose condition is more advanced than mine, and I wouldn’t like that. I see that every time I go to the hospital clinic. The fact that there is a service out there is great, but it isn’t for everyone. I suppose there is an element of denial in that: I don’t want that future for myself, and I don’t want to be reminded that it can happen.

But maybe I am missing out. I recently made a discovery: fat-barrelled pens are easier for me to write with. That is apparently well known by the occupational therapists in the Parkinson’s community, but I didn’t know.

I haven’t bothered looking at the medical research either. It would be easy – Michael J. Fox has Parkinson’s disease and his Foundation’s website has information galore. But I don’t want to spend my days looking up the next miracle drug. It is probably part of my coping mechanism; I’m just not interested in knowing a lot about it.

I have a few friends with other chronic disease. A lady down the road has MS. Her disease has progressed much further than mine in terms of mobility, which is difficult for me to see. But she gives me a hug every time she sees me. We have an affinity, of a sort. Our brains are alike.

 

What I will do next

I am in a fortunate situation. I am reasonably well-off, and the change to my abilities is slow.

But I do notice incremental things. I am more and more clumsy. I haven’t really explained my condition to people, but word gets around. I find that people are supportive at social events. If I need to I ask for help – for example, I can’t carry more than one drink in each hand anymore – people are accommodating. They take their cue from me. In the main, I haven’t noticed that people treat me differently. But maybe they do in subtle ways, and I am just not aware. I don’t blame them – Parkinson’s is not a well-understood disease. In that way it is similar to Chronic Fatigue and Multiple Sclerosis.

My current goal is to support my youngest finish school and fly solo. 2016 will be his final year at school, and I intend to be there for him as much as he wants and needs.

After that, I’d like to spend chunks of time at the beach house. It is restorative and therapeutic. I can rest there. But my wife has a new, demanding job. She is enjoying the challenge, and has no intention of cutting back. Nor do I expect her to. We have yet to completely reconcile the two positions – where I am retired and she is still engaged in the workforce.

I’m sympathetic to how a disease like Parkinson’s impacts on partners. How do they cope? Do they feel cheated, as if they didn’t get what they signed up for? A disease like Parkinson’s must impact them. I am trying to understand, and I would like to talk more about it to understand more deeply.

My imperatives remain the same: to exercise, to find intellectual engagement, to engage with the adult world. But the future is unknown. I often joke that I haven’t planned beyond tomorrow.

I know I am hedging around the ultimate question – how does my life with this disease end up? My neurologist is helpful in this regard. He reminds me that the disease is slow moving, and I should worry more about co-morbidities, which are more likely to do me in. Deep down, I carry that thought with me.

There is something in me that says to spend more time at the beach house or travel sooner rather than later, to enjoy this time while my health is this good. For I know it may get harder. But I also know there are people out there with far worse conditions than I have. Even though I don’t think I have been let off lightly, I know it could be worse.

And so I try to remain upbeat. I don’t feel sorry for myself, and I don’t think I am depressed. The most common emotions I feel are anxiety and frustration. I don’t want to lose what I still have, like the ability to drive and to ski. If I were to lose them, I would become melancholy, and maybe I would need treatment. But I will meet those challenges when and if they come. They do not occupy my thoughts everyday.

This talking has helped my thinking a bit. It reminds me of the role of talking. I’m looking forward to reading, and maybe sharing, it.

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