Parkinson's does not get to decide for me who I am



December 8, 2022


Last Updated:

December 8, 2022

A few years ago Lois was happily oblivious to Parkinson’s until a family member opened her eyes by asking her if she was okay.

They had noticed that she was shaking and appeared to be trying to stop it. Lois had no idea what they were talking about. When she asked what they meant she was told that the shaking from her head had progressed. Baffled, Lois responded that her head did not shake. Lois mentioned this comment to some of her friends who all said they had noticed it, too. This was the beginning of Lois’s journey towards being diagnosed with Parkinson’s. Knowing that her friends knew and she didn’t was hard for Lois to understand so she mentioned her family’s concern during an appointment with her doctor who told her they too had noticed and had been keeping an eye on it. It was during this appointment she was advised it was time to see a neurologist.

From there it took more than two years before Lois was finally diagnosed with Idiopathic Parkinson’s Disease. Even now five years later she can still recall the shock, astonishment, and sadness.

Although Lois had experienced tremors on one side of her body and one of her legs dragged a little, she had thought they were little issues she personally lived with, not a neurodegenerative condition. When Lois was told about Parkinson’s New Zealand she hoped she would be able to get the help she needed to understand Parkinson’s. She was given support not just for the condition itself but the emotions that can come with Parkinson’s such as feelings of vulnerability and anxiety. Lois attended the UPBEAT conference in Rotorua for people with early-onset where she listened to presentations on Parkinson’s and shared personal experiences of Parkinson’s with others who attended the conference. Lois now understands what may trigger her symptoms and how to manage them. She paces herself to reduce fatigue, keeps track of her medication and is honest with her colleagues.

It is vital there is someone who understands what a person is going through as they continually adapt to living with Parkinson’s.

Parkinson’s New Zealand has Parkinson’s Educators who provide information, education and support to people with Parkinson’s, their carers and whānau. Lois says, “It’s so important there is someone you can talk to who understands what you are going through and what you can do to manage your symptoms.”

The support Lois received encouraged her to have courageous, open and vulnerable conversations with family and friends. These conversations have brought her family and friends closer. Today, loss of smell, gut issues, fatigue and rigidness are a part of Lois’s life. But, despite this, Lois decided that Parkinson’s does not get to decide for her who she is: “I continue to exercise, keep my mind active, pray, and take my medication daily to keep my mind, spirit and physical wellbeing as well as I can.”