If there is one word to sum up Julee Redgen’s outlook on life, that word would be perspective.
“After going through everything that I have, what I’m going through now is just another hurdle. There’s always someone else who is worse off than me.”
Just over two years ago, Julee then 58, was experiencing a frequent onset of facial tics for about six months. She made an appointment to see a neurologist and explained her symptoms.
“Anyone in your family have Parkinson’s?” he asked her. Her answer was a “no” as her family has no known history of Parkinson’s.
“I had always suspected it, but it was hard to hear,” Julee said as of when her doctor confirmed the worst of her fears.
Parkinson Disease is a disorder of the nervous system which causes progressive deterioration of movement, control and balance. Most people are diagnosed at the age of 60 or older. The first symptoms of Parkinson’s are often mild and can go unnoticed for many months. Everyone is different so what one may experience as their first symptoms would not be the same for another. Some of the symptoms include tremors in your hand and fingers, rigid muscles, impaired speech, difficulty balancing when standing and slowed movement. For Julee, it was the facial tics before she sought a medical diagnosis.
“I can get botox treatment to stop the tics but I’m hesitant because, what if the muscles paralysed by botox doesn’t go back to normal? I had Bell’s Palsy when I was 20 and it wasn’t very pleasant and when you’ve been down that road you think twice about getting injections in your face because you just don’t know what the outcome will be,” Julee said.
The tics she said, are at its worst in the mornings when she gets up. As Julee goes about her day, the tics slow as she gets active, which she does in her home garden or when she’s getting exercise by swimming. It hasn’t been an easy road for this retired mother of two. Some days the hand tremors are pretty full-on along with the facial tics. Coffee on those days has to be in a closed cup or it goes everywhere!
The debilitating tics forced Julee to give up her volunteer work at a retirement village after five years.
“I’d be sitting and talking to people and the tics would be uncontrollably bad. It reached a point where I couldn’t do it anymore, so I had to give that up,” she said.
“Last year I tried different medications prescribed for Parkinson’s but it counter-acted with my current medication for depression. I tried to stay on it for a few months, but it never worked out and I will be seeing my doctor about that.”
Aside from living with depression, Julee is also a lower leg amputee following an incident at home 21 years ago which resulted in compartment syndrome for 10 years. The last two years of that was a blur of hospital admissions for treatment. It ended with a staph infection that meant she had to lose her lower right leg in order to survive. Over the past 11 years, Julee has managed her change of circumstances with the aid of a prosthetic limb but in recent months, found that she preferred the use of a wheelchair to help her get around.
Julee is an NDIS participant and receives her community and in-home supports from 121 Care. She knows that her support needs will increase as Parkinson progresses, but she hopes that it won’t be for a while yet as she sorts out her medication needs and continues to exercise to control her symptoms.
“It’s been a hellish last 12 months with the medication, lockdowns and the periodic isolation but my family have been a great source of strength and support for me,” she said.
“Through all of this, I have learnt that we must always make the most of today. Choose always to be the victor, not the victim.”
World Parkinson’s Day was commemorated on 11 April. Parkinson’s Awareness Week was held on 10 – 16 April.
Read more inside the The Wireless, Issue May-June 2021.