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‘Living with Parkinson’s is no cakewalk’

Long-term Redfern resident, Emma, grew up on the Central Coast of New South Wales, happy with an active school life close to the beach and occasionally dreamt of a perfectly adult career as a flight attendant.

“Travel and seeing the world was my passion back then,” Emma recalls. “When I left school, I joined Contiki in Sydney, an internationally famous travel company. After a few months gaining valuable hospitality experience I began working in Europe. I was a site representative in Antibes, a beautiful little town on the French Riviera. Then, I became the mobile cook on many of their camping tours. After those joyous jaunts, I returned to Australia and began working at Flight Centre – that took care of the next couple of years of my early adult life.”

A marriage and two children followed and the girls are now aged 12 and 9. However, just a couple of months after Emma’s honeymoon in Paris in 2010, the first hint of health problems began to surface. “I had issues with my vision and went to my GP,” says Emma, who now lives in the inner west.

“My GP asked me whether I’d experienced numbness or tingling anywhere in my body. It made me recall I’d had pins and needles in my hands a few years before. My eye problems were ultimately diagnosed as optic neuritis, and this led to my diagnosis of Multiple Sclerosis (MS for short).”

Emma’s life continued with the bringing up of her two children. In 2013 Emma became an Ambassador for MS research, raising tens of thousands of valued research dollars. The South Sydney Herald supported Emma’s fundraising and in May 2017 Emma was featured on our front page. Then, in early 2019, Emma again faced some very odd and uncomfortable symptoms.

“I was in class at a yoga retreat and my leg started shaking uncontrollably,” she says. “A couple of months later I was out walking when I realised I needed to think consciously about moving my leg. It wasn’t happening automatically. Since having MS, I had become much more sensitive to my body. I soon realised my left arm didn’t swing naturally whilst walking.”

Emma took herself back to her MS neurologist who told her to just ignore her symptoms and that they would “go away”.

“Of course, they didn’t,” says Emma. “So, I decided to seek the help of a physiotherapist through MS Plus and was given a seemingly practical exercise program to do. However, months later, with no improvement, I returned to my neurologist and he told me I had Functional Neurological Disorder (FND).”

FND can occur following serious stress or trauma and it skews messages between the brain and the central nervous system. This can result in a variety of symptoms occurring even though there’s no structural damage to the brain.

“While I remained a very positive person, I’d had a few stressful life events, so the concept of FND seemed very plausible. At the time, the only recommended treatments were psychology and physiotherapy. Sadly, there are no medications to treat this condition.

“Over the next 18 months things continued to slide downhill. I went from a limp to a walking stick and on to a mobility scooter. I had a tremor in my right hand and a fixed position in my left. I couldn’t write, type or text, and eating was a challenge. Quite often I wouldn’t make it to the toilet in time. Drinking was only achieved through a straw.

“Luckily, I could still do yoga, but I’d shuffle along to my yoga mat. I was doing physio and seeing a psychologist regularly but I wasn’t improving – I was actually getting worse. Funnily enough, the biggest challenge was walking on a flat surface – yet I was able to walk upstairs and downstairs and do short sprints on the beach. It was all very weird but it gave me hope that some messages were still getting through.

“Another huge bonus was that I wasn’t in any physical pain but it was an awful experience for my family and friends. The productive and active girl they once knew now struggled with the simplest of tasks. It broke my loved ones’ hearts to see me this way.”

By October 2021 Emma decided to seek a second opinion. “I found a different neurologist and went in on my scooter with my disability support worker called Matt,” recalls Emma. “Dr Mobbs gave me a thorough assessment and told me she didn’t think it was FND. I did an internal eye roll! She said she thought it was early-onset Parkinson’s. After the initial shock of hearing those words my first thought was, ‘Oh, what am I going to tell Mum?’”

Fortunately, the new medications which came with the diagnosis made an almost immediate beneficial difference to Emma. “This second opinion was literally life-changing,” Emma says. “After a just few days on the medication I took a photo of my self-laced-up shoe and messaged it to my Mum. I didn’t have to add any words, she knew what the picture meant. Four weeks later, instead of my mobility scooter I was able to walk around with just a limp.

“After the Christmas holidays, I freaked everyone out when I turned up to collect my daughters from school. I was walking normally. The school office lady started crying when she first saw me bounding in with neither my scooter nor stick. I’ve had so much support from friends, family, and the local school – my heart burst to see their joy in my recovery. These days, when I catch the train even the employees at Redfern station are delighted to see me walking about.”

Since then Emma is learning how to pace herself and not pack too much into any one day.

“With Parkinson’s medication, it is common to have on and off periods which can be difficult to manage. Fatigue is one of my main symptoms and I have to constantly tell myself to not overdo things. After medication kicks in I can go from an energiser bunny on 10 coffees for an hour to a limping sloth the next. I have to plan the best times to do my physio, yoga and PD Warrior training.

“Looking after myself and my girls is my priority. Plus, I am a huge advocate for medical research and spread awareness for MS and PD (Parkinson’s Disease) wherever and whenever I can.”

Emma attends a local Parkinson’s support group and has found online groups very helpful.

“Through a PD Facebook group I found a woman in Perth who also has MS and PD. We have spoken over the phone and call ourselves rare unicorns! Following the success of the current medication, I have learnt that the essentials for living well with PD are: regular exercise, mental wellbeing, a good diet, having a good support network and a very supportive family,” she says. “Connection with others is vital to the well-being of all humans. I have a lot of people I can lean on, including NDIS. All of this help has enabled me to manage my life.

“Organisations like Parkinson’s NSW, Michael J Fox Foundation and MS Plus have so many resources on how to live well, and maintain a really positive outlook. All these organisations, and their staff, are absolutely fantastic.

“Learning to live with PD is very much like trying to tame a beast. It has its ups and downs and is constantly changing. Cooking for a bus load of very merry tourists all over Europe is a piece of cake compared to living with PD and MS. Mentally you have to be extremely resilient and very strong. You have to also make friends with the beast – because ultimately it is part of you. I’m not quite there yet but I’m happily working on it!”

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A version of Emma’s story was first published on the Parkinson’s NSW website.

 

 

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