Rachael has been a critical part of my life following my diagnosis - Kim
I guessed something was wrong 11 years ago. As the regional manager of a bank in Port Macquarie, I was public speaking at a conference. I can recall standing at the lectern, and my whole right side was shaking. My girlfriend said to me, 'You need to get that checked out.'
For the first seven years, I tuck my head in the sand. I just kept working and tried not to think about it. I was embarrassed about the visual side effects of the illness and, working in the retail environment, I felt self-conscious about what customers would think of the shaking.
But after I met Rachael from Parkinson's NSW I found out about Parkinson's Nurses and the support group she was involved with. I started going.
At a support group meeting, everybody is in a similar position and you can relax. You know that if you're having a bad day with your tremors, everyone's in the same boat. If someone's shuffling or taking a while to finish a sentence, or you can't hear them because their voice is soft, we all get it. You can just be yourself.
Rachael set up TeleHealth consultations for me with a neurologist in Sydney when COVID hit. She'd sit in the room with me, and what the neurologist couldn't see in detail, Rachael could tell him. She was just awesome. That meant I didn't have to go to Sydney.
When I've really struggled with jerking and shaking, I could get in touch with Rachael at any time and ask what I could do? She'd suggest changes to how I was taking my medication, like time of day and alert me of reactions with other medications. It helped me reduce the movements without having to wait a month to see the neurologist. GPs don't necessarily know the funny little details of what can happen with your medication but Rachael does, her knowlegde is so good.
Having a Parkinson's Nurse is just so important for us to talk to, and ask all our questions. If things are going on with your body that are new or different, there's someone you can ring who knows the specifics of your illness, who can help you immediately.
It takes such a load off your mind when the nurses goes 'Just do this' or 'Yeah that's normal.' You're like, 'right, I can move on with life.'
It can be pretty crappy at times. But I've realised there is life after Parkinson's. You can keep playing golf, you can go to the movies. You might not be able to sit still, but you can still go. The glass is half full.
Parkinson's Nurses help each step of the way
At a person's time of greatest confusion and doubt, a Parkinson's Specialist Nurse can give answers and
connect them and their loved ones to the best supports, services and programs in their local area.
Bridging the gap between specialist visits, a Nurse can check in regularly with someone on how they're going, making sure any issues are resolved quickly. Support is given at the time and place of need.
If something urgent arises, Nurses are there on the ground to support a person with Parkinson's and work with their care team including GPs, Allied Health, hospital staff or Aged Care Staff
who are caring for them.
Towards living well
Nurses guide people towards living their best possible life, providing timely referrals, strategies on managing syptoms, and intervening whenever they're needed to help smoothe the path for best well-being.