Coping with a new Parkinson's diagnosis
A new Parkinson's diagnosis is a life-changing thing, but it is not life-ending. Find out more about how to manage the news of a new diagnosis from our Parkinson's Nurse Specialist (PNS) Donna Mallaby.
Find out more about Parkinson's here
You may not remember much of your appointment after the words, “You have Parkinson’s”.
You may have just walked out of your doctor’s office with a new diagnosis of Parkinson’s. Or you may have been diagnosed months ago after noticing your body changing for some time now and you’re thinking, “What now?” Those feelings are very common, and you are not alone.
My first thought was, “What the hell happened to me? What am I going to do?” That took time to work through, but I found out that if I could accept what my situation was, and be honest about it, I could move forward. And my happiness grows in direct proportion to my acceptance.” — Michael J. Fox, diagnosed in 1991 at age 29
For some, a diagnosis comes as a relief, as you now have a name for how you’ve been feeling. For others, the unknown can be frightening and challenging with so many unanswered questions.
It is very normal to have a mixture of emotions and feeling of uncertainty such as, “where to from here?”.
That is why we are here.
At Parkinson’s WA, the team of Parkinson’s Nurse Specialists have been supporting people like yourself in the metro, southwest and the regions for over 24 years. We offer education, guidance, support, and nursing assessments in the comfort of your own home.
Here are my top 5 tips for how you can support yourself with a new diagnosis of Parkinson’s:
See a Specialist.
Seek a referral to a Specialist in Parkinson’s. Such as a movement disorder specialist, Neurologist or Geriatrician that specialises in Parkinson’s. They can aid in developing an individualised treatment plan at the commencement of your journey. Depending on your specialist and your individual requirements, you may see your specialist every 6-12 months.
Research and learning.
Commence your own learning journey by researching the facts about Parkinson’s. Request a visit from your local Parkinson’s Nurse Specialist (PNS) so we can discuss and educate you on your symptoms of Parkinson’s, as everyone and every journey is different. When completing your own research, make sure to source information from reputable sources such as the Parkinson’s WA website, Parkinsons Australia, Parkinson.org and Michealjfox.org.
Build a support system.
Isn’t it great to know you’re not alone in this journey? Building a support group around you can look different for everyone. Some may chat with a partner or family member. Others may attend a local Parkinson’s support group or online forum. Your Parkinson’s Nurse Specialist (PNS) can also link you in with other allied health professionals such as Physiotherapists, Occupational Therapists, Speech Pathologists and Support Services if you wish. We work in collaboration with your specialists and supporting health professionals to create a professional support system around you.
Exercise is your medicine. Daily movement that you enjoy is the key. Whether it is walking, riding a bike or a stationary exercise bike, a gentle gym or yoga class. Regular exercise can assist with your symptom management and aid in reducing stress and anxiety.
Plan to eat a healthy diet of well-balanced meals of unprocessed whole foods such as fruit and vegetables. Take your levodopa medications at least 30 minutes before food. Also aiming for 1.5-2 litres of water daily can optimise your medication absorption as well as assist to maintain a healthy bowel.
Most importantly, give yourself time to breathe and process. Know that acceptance for everyone will be different and not on a perceived timeline. Every day can be different, some days will be amazing, and others will be challenging, but tomorrow always brings a new day.
Everyone’s Parkinson’s journey is different, but know, we are in this together.
All my best,
Written by Donna Mallaby, PNS
Find out more about our Parkinson's Nurse Specialist Program here.