Support groups for people with Parkinson’s can be hugely beneficial. Our hero today is the group Parkinson’s Divas who get together regularly to support each other and chat through issues. We spoke to Jennifer from the group to hear more about the great work they are doing.
I was 64 years old when I was diagnosed with Parkinson’s in 2016 . I meet two other ladies with Parkinson’s -Janet Rowan and Larissa Richards and we met for coffee and a chat after exercise classes. We felt an immediate bond of friendship , shared information and had a common desire to make a difference to improving the lives of other women with Parkinson’s. We invited other ladies to join us for a monthly lunch and a chat and formed a support group two years ago.
What Drives Your Commitment to find a cure for Parkinson’s?
Though previously regarded as a condition affecting ageing men , the percentage of women diagnosed with Parkinson’s is now almost equal to men . One in five people diagnosed with this progressive neurological disease is under fifty years old. Symptoms are challenging and unpredictable and there is no cure. We live with the hope that a cure will be found.
Why Shake It Up Australia?
We support Shake It Up Australia because along with the Michael J Fox Foundation – 100% of funds raised are directed to research into finding better treatment and a cure for Parkinson’s.
Tell us what you are doing/did to Shake Things Up?
I am retired RN/ Midwife , wife and mother, who coordinates Parkinson’s Divas Lunch Group – an independent, self funded support group for women diagnosed with Parkinson’s .
We have learnt that everyone’s Parkinson’s experience is unique and a woman’s experience with Parkinson’s can be quite different from a mans experience. Recent research in an article by Jori E. Fleisher, MD, MSCE, assistant professor of neurology and population health at The Marlene and Paolo Fresco Institute for Parkinson’s and Movement Disorders at NYU Langone Medical Center (New York CIty) indicates that a higher percentage of women experience pain in Parkinson’s and that the pain experienced is of higher intensity . Other common symptoms experienced by women include urinary urgency and incontinence due to hyperactive bladder and problems with speech and swallowing-dysarthria, which often causes women to isolate themselves. They risk becoming withdrawn, lonely and depressed.
Our group is thriving and we’ve grown from 3 to 33 women in two years. We meet for lunch at Balgowlah usually on the third Thursday of every month . The ages of the ladies currently range between 35yrs and 88yrs with more Young Onset Parkinson’s Disease YOPD ( diagnosed under 50 yrs) joining the group recently. Some of the ladies enjoy a therapeutic Art Workshop each month with a talented teacher.
The greatest reward I receive from coordinating the group is seeing the ladies appear to relax and feel comfortable in each other’s company . They attend alone without carers, partners or friends and gain a renewed confidence in communicating and eating with others in a pleasant social setting. There is much laughter , exchange of information and experience and chatter. New friendships are forged by the ladies who are supporting, motivating and encouraging each other.
We sometimes invite guest speakers or plan lunch outings.
Some ladies attend fundraising events for Parkinson’s and some volunteer for Parkinson’s research projects.
We are committed to supporting each person in the group by keeping in contact even when they can’t attend the lunch group due to illness, lack of transport etc . We also communicate via a private group Facebook page.
The name of our group was coined after reading the positive and enjoyable book- ‘Parkinson’s Diva -a woman’s guide to Parkinson’s ‘ by Maria De Leon, Neurologist diagnosed with YOPD. Dr Leon is in regular contact with our group.
Best advice for people looking to Shake It Up?
People with Parkinson’s can make a significant improvement to the quality of their lives by helping to improve public awareness, staying active and doing regular exercise which promotes neuro regeneration and staying socially active.
Our motto is –
‘ Get Up! Dress Up! Show Up! and never Give Up! ‘