‘My early journey with Parkinson’s disease’

My symptoms appeared and built in intensity over time with new symptoms arriving at different stages. It’s not until you are diagnosed and gain some understanding of Parkinson’s disease and its specific symptoms and its impact, that you can trace back to when symptoms first became apparent.

The symptoms that triggered my need to see a doctor were dizziness and imbalance, which had become a real issue within a month or so of me first noticing the problem. By the time I went to the doctor I had to concentrate to be able to walk any sort of a straight line it was like trying to walk around inebriated 24/7.

Other early symptoms such as stiffness and rigidity in the legs that progressed to constant cramping and chronic pain in knees and ankles I initially dismissed as just part of getting older or just part of life and not that big a concern. Over the next four years, I noticed these symptoms slowly and progressively got worse and new symptoms presented themselves, which now included reduced motor skills particularly in the hands; becoming clumsy and dropping things; and handwriting that was becoming increasingly illegible.

My issues with balance were now a real problem, I had to narrow my scope of vision to only a few meters to be able to focus on a straight path ahead to stay steady and not wander or fall. It was when I nearly stepped out in front of a car that I realised enough is enough, this isn’t right, I’m frustrated, I’m confused about what’s going on and I want some answers. Demanding answers I was finally referred to a neurologist.

Testing for Parkinson’s disease

From my first visit with a neurologist it took nearly five months before an official Parkinson’s diagnosis was made. Delays in this process were due to availability of times for the next appointment, time to book in for tests, get results back and to monitor symptoms for any changes. The words ‘Parkinson’s disease’ were suggested early, but I had heard this before and it had been dismissed by GPs as I didn’t have any of the classic symptoms like hand tremor or shuffling gait. The lack of classic symptoms would require more investigation to be able to identify Parkinson’s as the problem. I later found out from Parkinson’s Victoria that a lack of a tremor is not uncommon with Young-Onset Parkinson’s, which is the type of Parkinson’s I have.

There is no specific test to identify Parkinson’s other than careful monitoring of body movement, reaction and function, which is still at best only an indicator. That meant I had to be tested for and to eliminate every other possible disease or illness including brain tumour or cancer, stroke, and body chemistry. You undergo X-rays, MRI, various blood tests all the time hoping for an answer, praying that whatever they may find isn’t too serious, then frustrated and disappointed when the tests would come back all clear.

During the testing phase the frustration and emotion of the previous four years kept building and it got to the stage where I didn’t care anymore what was wrong with me, bring it on, just give me a name so that I could start my fight, I could move ahead.  When I was final told I had Parkinson’s, in that moment even though I didn’t have any understanding about Parkinson’s it was just total relief and I actually smiled.

Making the most of every day

After the initial feeling of relief from finally having a diagnosis I started reflecting on living with a disease with no cure, new symptoms will continue to arrive, it’s degenerative, it’s progression can’t be slowed, at best medication will provide some relief, over time the medication dose will increase then be replaced with different/stronger drugs which will also introduce their own problems and side effects which may also lead to considering DBS (Deep Brain Stimulus) or other treatments when the time comes.

Parkinson’s takes away some key elements of living your life. Hope and believe and for a time you are lost and withdrawn you avoid talking about the condition because its’ all bad news. It can be very easy to retreat and isolate yourself, trying to protect yourself by hiding your condition not only from other people but also yourself. I sat in limbo for more than 12 months.

I decided my only way ahead to win back hope was to hit back and strive to make the best out of a bad situation. I went online to find out as much I could and become a member of Parkinson’s Victoria. Friends and family were supportive and sent information on the benefits gained through exercise like cycling and intense training like boxing and strength training. My youngest daughter even took me along to her personal trainer, which showed quick results to help relieve some of my main symptoms.

Keeping active is now a top priority cycling to and from work daily and on the weekend and currently averaging 350-400km per week. Noting that I had not ridden a bike for more than 30 years. I found that a 40km or so ride would help give me relief from cramps and stiffness for about a day. The cycling is a total commitment, which for me means rain, hail or shine, except on the bad days when no matter what Parkinson’s will win.

I also fit in three boxing/gym training sessions per week.

People might think I don’t have any real health issues as I’m doing a lot more physical exercise and am actually fitter than many other people my age but the reality is Parkinson’s is a ticking clock. What I’m able to do today will soon get harder and harder and symptoms new and old will, over time, reduce, limit or exclude what I can do today. Someone once said to me ‘with Parkinson’s your best day was yesterday’.

I now try to not let Parkinson’s hold me back. Parkinson’s has also taught me to be more patient and accepting of myself and the understanding that it’s okay to have bad days just don’t back out of the fight. To help people understand what it feels like living with Parkinson’s, “it’s like fighting in a war that you know you can’t win, but along the way you do the best you can in the smaller battles to try and prolong the war, in a hope that in time you can change the outcome”.

Fast forward four years

I’m still cycling daily to work although for some months of the year cycling is replaced by walking. I’m now in my third year as a participant in the annual 100km OXFAM TrailWalker (walk 100km in 28 hours) so some mornings I would 20km to work (around 3-1/2 hours so leave home at 2:30am) as part of my training.

In October, I take on the 300km Around the Bay in a Day event, the following week a half marathon with a team in support of Parkinson’s Victoria. I am still doing three to four gym sessions per week, working more on intense strength and cardio training. I have just returned from six weeks trekking in South America, which was on my bucket list.

I am an ambassador for Parkinson’s Victoria and an ambassador for OXFAM. I also Still work full-time.

Parkinson’s is still gaining ground… but my life is good!

Are you, or is someone you know, living with Parkinson’s disease?

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