This is Parkinson’s

In 1991, when Julie Singh was only two, her father, Peter, was diagnosed with Parkinson’s Disease. Peter was 37 and a welder by trade. His initial symptoms were a shaking in his left arm and an overall feeling of stiffness.

When Peter’s diagnosis of Parkinson’s was confirmed two months after the first symptoms appeared, his whole world collapsed and he sank into depression for nearly three years.

“But then I woke up to myself, got up and started living,” he said.

For Julie’s mother, Elaine, the news of Peter’s illness was incredibly tough as not only did she have a two-year-old to look after, she had two other children, Bruce and Clarissa, aged 7 and 11, and Clarissa had epilepsy.

On March 3, 2011, Peter underwent Deep Brain Stimulation (DBS) to control the constant involuntary movement that had become so bad Julie had to stand on his feet just so he could eat a meal.

On March 23, 2015, Peter had his right kidney removed due to cancer. As the years have passed, he has developed one of the less common Parkinson’s symptoms of Pisa Syndrome where a person leans to one side.

 At 71, Peter leans to the right, still has slowness of movement and, since the DBS, has developed an issue with swallowing. His hearing and memory are, however, good.

Now 31, Julie made the conscious decision to continue living at home so she could help her parents as much as she can.

“I try and keep positive…I just want to be there for Mum and Dad,” she said.

This is her story.

For Stuart Godsall, being told he had early-onset Parkinson’s disease came at the end of a long journey to try and get a diagnosis.

“I had a few symptoms that started in my mid-40s, I’m now 50. More specifically, I have a tremor in my left hand and I started to experience a feeling of being unbalanced whilst running, which is something I do a few times a week.”

“I also started to have very small and cramped handwriting, which I now know is called Micrografia, and my voice started to get husky towards the end of the day.”

“My symptoms come and go in intensity so that sometimes I doubted there was anything really wrong, although when my symptoms were at their strongest, I knew that things were absolutely not right.”

“Damn, I was hoping it was carpal tunnel” was my response to my neurologist as he delivered my shock diagnosis of Parkinson’s disease. It was my 62nd birthday.

I had no idea even though, in hindsight and with more information, I had been experiencing symptoms for at least five years and more. Slowness of movement and gait change, minuscule handwriting, and constipation were now accounted for.

I have had and continue to have a fortunate life. Unlike the many negative experiences conveyed to me that others have endured in getting a diagnosis, my neurologist diagnosed the condition within 15 minutes. With observation, physical testing, and targeted questioning, he explained the loss of dopamine and how the medication works.

He advised me to join the state Parkinson’s body through which I could access physical therapies. He also apologised for the poorly timed birthday news.