This weeks story comes from Madonna who was diagnosed with Parkinson’s almost three years ago. She shares the everyday difficulties of living with Parkinson’s and her journey to becoming the leader of the support group ‘Young at Park’.
1. How old were you when you were diagnosed?
I was 46 years old when I was diagnosed and it’s coming up 3 years in July 2015 since that day.
2. Tell us about being diagnosed?
I’ve always been very healthy but in early 2012 I began feeling different: not as agile and not as dexterous, my left arm was not swinging when walking, I had a tremor, my left foot was dragging when walking and my left hand would not move when I did ‘spirit hands’.
I went to a G.P. to get a referral for a scan to investigate my painful left shoulder, also for a recommendation to a good physiotherapist. The scan showed a minor issue, the physio did strength tests and watched me walk, “how long have you had a limp?”
She told me that my symptoms were serious and very important to go back to the G.P. and get a referral for a Neurologist because I had either had a slight stroke or it was Parkinson’s. I made an appointment the next day but there was a waiting time of three months, Neurologist said it was a textbook case of Parkinson’s. I knew nothing about Parkinson’s, my search for information began, I read Michael J. Fox’s books and searched the internet, finding much solace in Facebook Parkinson’s groups.
The diagnosis was huge, I told family and friends straight away and work the next week. To me, sharing my diagnosis and living an authentic life has helped me to come to terms with it all and the biggest gift has been the chance to live for now, instead of waiting to do things later on.
After about six months I could talk about it without crying.
3. What is the greatest challenge that Parkinson’s poses to your everyday life?
At the moment, fatigue and stiffness through my left arm are my physical challenges and mentally knowing that my future is going to be different, as the disease progresses the loss of independence and ability to do things for myself.
4. Apart from a cure – what is your greatest wish
Recent studies show that regular physical activities greater than 2.5 hours a week is found to slow the decline in Parkinson’s disease. My greatest wish is for accessible exercise options for people living with Parkinson’s, a variety: non contact boxing, walking, gym, PD specific circuit classes, Tai Chi, stationary cycling, Dance for Parkinson. Finding funds for exercise, medication, health specialists and everything else is the big dilemma.
In 2013, I got a travel grant to attend the World Parkinson’s Congress in Montreal and displayed a poster on the subject. Evidence shows that exercise is so important, improves balance by strengthening leg muscles, it’s something we can do for ourselves, gets you out of the house, makes social connections and the endorphin’s give a rush of natural Levodopa. I’m sure being involved in a group is good for mental health also.
5. Apart from medication what has helped you most since your diagnosis?
Staying positive and having things to do. My husband Matt is a wonderful person, he’s very supportive, fun and has a great sense of humour. When I decided to take our three daughters to the World Parkinson’s Congress at Montreal in 2013, he was like “oh okay, so you’re all going now- except for me” The girls volunteered at the congress, we all learnt so much from the trip and met for the first time many Facebook friends in the USA and Canada, making connections and having fun. Take on challenges and go with the flow.
6. What do you love to do in your spare time?
I retired from work last year so that I can do things while I can: I make patchwork quilts, Coordinate a support group called Young at Park Brisbane, travel and we have a puppy to take for walks. Getting together with friends and family is really great too. Just recently I have become the first DJ in the Southern Hemisphere on a web radio station for people with Parkinson’s, spreading news and information on the Australian Parkinson’s scene at a grass roots level and playing great music, Wednesday 6-7pm go to radioparkies or on Tunein radio.