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Patient Story: Mick from Brisbane and his experience with early-onset Parkinson’s disease

10 April 2015

Mick with wife Jude, daughter Katelyn, partner Ray and newborn granddaughter Isla, photographed at Kangaroo Point Cliffs, Brisbane on 3 February 2015.

At age 32, Royal Australian Navy Chief Petty Officer Mick started to experience symptoms of Parkinson’s disease (PD), but as a young father and not fitting the ‘typical stereotype’ for PD, his difficulties in manoeuvring around the ship were attributed to an ankle injury. Missing these first vital signs of PD sparked a tumultuous 10 year journey toward diagnosis and treatment for Mick – a journey that simply should not be that hard.

According to Mick; “Despite having some very dark times, I wouldn’t change a thing because through my experience I hope others will benefit.   It took time and persistence for me to be diagnosed with Parkinson’s disease. It shouldn’t be that hard. Parkinson’s continues to affect younger people and it is important the signs and symptoms are understood.”

During a posting on-board the Navy Destroyer HMAS Brisbane Mick found it increasingly difficult to get around the ship; bumping into walls and having trouble climbing up and down ladders. After months of looking forward to the posting, Mick was reluctant to raise alarm however his team were concerned. He recalls, “I thought it might be a result of an ankle injury or pinched nerve I sustained a few years earlier. I tried to compensate for it; however it was unfair to my team. I spoke with the Captain and we agreed I would head to Canberra for a week or so to get it checked out.” Mick never returned.

When Mick arrived in Canberra he visited the medical team. “I had visited the clinic about my ankle in the past. The GP I saw did some tests and said she didn’t think the problem was orthopaedic and may be neurological.” Mick was referred to a range of different specialists for further assessment. “It had been weeks since I left the ship and felt like I had every test under the sun, but doctors couldn’t detect the answer. I was told I needed to learn to live with it, yet I couldn’t return to duty. I tried, but I didn’t know how I could overcome the symptoms.”

In the weeks following, Mick was diagnosed with hysterical conversion disorder. “They said it wasn’t physical, it was psychiatric. I spent the next 12-18 months on medication that began to not only mask my symptoms, it amplified them.  “I started to flop around like an untrained seal. Being told this was ‘all in my head’ destroyed me.”

Mick with wife Jude, daughter Katelyn, partner Ray and newborn granddaughter Isla, photographed at Kangaroo Point Cliffs, Brisbane on 3 February 2015.

Mick soon fell into a deep depression, and with a five year old daughter about to start school, the loving father removed himself from the home. “I didn’t want her to see me like that. My health had taken such a huge toll on my life, and my wife’s life already. I went to stay with my mum in Brisbane, but it was then too much for her and I was moved to a Hospital and then a psychiatric clinic.”

During Mick’s time in the clinic, he received electro convulsive therapy (ECT) in the hope that would treat his depression and disorder. After nine episodes, he returned to Canberra to be with his family. A short time after, Mick was medically discharged from the defence force. “My diagnosis had taken years of my life, and affected all of my family. Now my career was over too so we went home.”

Once settled back in Brisbane, Mick searched for a local psychiatrist. “I would have been in his office for only 5 or 10 minutes when he turned to me and asked why I was there.  He basically said that my symptoms didn’t fit the basic parameters of a conversion disorder and referred me to one of the top neurologists in Brisbane for ongoing management. I still felt hopeless. I visited the neurologist and we spent time going through my history. He suggested that we stop my medication for 3 – 6 months so he could properly assess my symptoms. When I returned he performed further tests and said it looked like Parkinson’s disease. I was shocked but had a huge sense of relief. I knew it wasn’t my head. I remembered back to that first GP who said my symptoms were neurological and thought ‘at last I have an answer’.”

Within days, Mick started on medication to alleviate symptoms of PD. “In the early days the medication worked quite well. Over time, my ‘on window’ [time free of symptoms] became shorter.” Mick continued on medication for seven years. “Towards the end, everything was a fine balancing act. I was taking medication to coincide with my plans for the day. I didn’t go out too much and always needed to be with someone when I did.”

“I first heard about deep brain stimulation around 2007. The thought of people operating on my head wasn’t great, particularly while I was awake. Initially I discounted it as a radical option. As time went on and medication was less effective I thought ‘what do I have to lose’.” Mick received Medtronic Deep Brain Stimulation (DBS) therapy in January, 2010 at age 43.

“Since having the procedure, my life has totally changed. I feel closer to the man I was on that ship, than ever.  I don’t require any medication, I can drive, go for a walk and I am more independent and spontaneous than ever. I have qualified as a Justice of the Peace and volunteer at the local hospital.  The things most people take for granted are gifts that enrich my life.

“My advice to others with PD is get DBS as soon as you can. It has given me a second shot at life. I might be turning 47 in December this year [2013], but I have two birthdays now. In January, I have my DBS birthday when I turn four.”

 Mick with wife Jude, daughter Katelyn, partner Ray and newborn granddaughter Isla, photographed at Kangaroo Point Cliffs, Brisbane on 3 February 2015.

This patient testimonial relates an account of an individual’s response to the treatment. The account is genuine, typical and documented. However, the individual’s response does not provide any indication, guide, warranty or guarantee as to the response other persons may have to the treatment. The response other persons have to the treatment could be different. Responses to the treatment discussed can and do vary and are specific to the individual patient. Please consult your healthcare professional for a full list of benefits, indications, precautions, clinical results, and other important medical information that pertains to the therapy or products discussed.

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