Here we are. One week on from World Parkinson’s Day. What has changed? Well here in New Zealand Autumn is well and truly upon us. The colder days are interspersed with beautiful warm sunny days but chill from late afternoon. We’re lighting our fires in the evening and snuggling down with our families. Being honest it’s bloody freezing when I get up early to do my exercises. I can hold myself in a chest press position for up to a minute most days, though I’m quaking by 45 seconds. Still. Progress is progress, right?
But back to World Parkinson’s Day.
I saw nothing in the media about Parkinson’s here in New Zealand. Nothing anywhere aside from an email from Parkinson’s New Zealand. I’m guessing 90% of the people that get those wish they weren’t in the club. What did this email say?
I read about an online conference led by creators of a rehabilitation program for people with Parkinson’s. The conference was free, that’s good, and had a good range of speakers. It’s also worth noting that when I looked closer at the organisation running the conference, I realised it is, in fact, a company that charges handsomely for its exercise packages. You can join a variety of online or face to face classes. They give you peer support and tuition. I know this all comes at a price, but wow, it’s not cheap. The website is professional, lots of smiling faces with T-shirts with positive slogans and promises of working with your ‘tribe.’ Call me cynical but it looks like a very successful business model to me. I wonder how invested in research they are.
This is Parkinson’s. Kitty and her daughter messing about in the play park.
I read an article about a lady doing a fundraising walk in another country. She is 50 and was diagnosed a couple of years ago. Walking this trail is something she has dreamed of and she wants to do it before she can’t. She has a give a little page they shared so we can all support her.
I thought of all the things I long to do. How frightened I am that I can’t afford to wait until retirement. Sixty is thirteen years away. I thought of my hectic working week, trying to scrape together enough to pay my mortgage, bills, and feed and clothe my four children. How I feel I’m ‘wasting’ my active years earning just enough to get by.
Next was a webinar on Anxiety and Motivation by a doctor. Interesting. I’ll reserve judgment.
Then there was an invitation to join Parkinson’s New Zealand. I read how my membership would give me a printed magazine twice a year with up-to-date news. I could get fact sheets and read stories about people with Parkinson’s.
This is the digital age. A printed magazine does not hold up to date information. They are, however, heinously expensive to print and distribute.
Finally you could donate to the latest appeal. I downloaded the appeal letter. I read a story about a daughter watching her father’s journey with Parkinson’s. It started off not too bad. She was a teenager. Then she describes his decline, the strain on his family, how he moved into a rest home before passing away. He had Parkinson’s for 17 years.
The current CEO of Parkinson’s New Zealand goes on to write how watching his own father decline with Parkinson’s put a strain on his mother. He himself has Parkinson’s and talks about inevitable decline.
I have had Parkinson’s for six years. I have two young teenagers and tween twins. Is this what I have to look forward to? Really? Slow or rapid decline into a rest home and death? My family all bemoaning my passing, “she was so strong and determined, but it was all gone in the end. It’s a blessing really.” Etc etc.
IS THIS THE BEST WE CAN DO ON WORLD PARKINSON’S DAY?!
I’m not just angry, I’m boiling mad. Where is the positivity? Their slogan is Living Positively With Parkinson’s. Really? Even writing this blog post, with the requisite research has been upsetting and made me feel depressed and hopeless.
I got into this stuff because I was sick to the back teeth of seeing miserable things about Parkinson’s. It’s always so depressing here in NZ. It appears to be all about reactive help, assisting carers, family members when their patient – loved one – is ready to be house bound and suffering. We need to see positivity, stories of people living independently with this terrible, because it is terrible, thing.
My 12 year old daughter told me she wished it wasn’t “so full of sadness”. She went on to say that she wanted to think that we could still do things together, not constantly worry that I was about to die. For myself, people often make comments about being very close to a cure. Even if this were true, and I really hope it is, I worry that it would still take decades to obtain funding and reach the patients themselves.
I want stories about successfully living with Parkinson’s. I want images that reflect my own experiences and give me hope, not depression and a self-fulfilling prophecy. I don’t buy that to garner donations you need geriatric people looking ill. Emma was diagnosed in her later twenties. She’s a young Mum. There are heaps just like her. Don’t they deserve a more hopeful outlook? Free advice and help on exercise and ways to stay the progression as long as they can? Not left to find private physiotherapists and other businesses that will take your cash in exchange for help.
I was diagnosed at 41. My twins were six years old. I remember reading about life expectancy online. I was ready to give up. The Parkinson’s nurse that I went and found myself was amazing. But once she’d explained what was wrong with me and how to deal with it, that was pretty much it. That’s not to say I’m not grateful, I am. But I need to live my life and be positive. I want to believe that there is a brighter future. I HAVE to believe that there is a brighter future. What’s the point otherwise?
Emma and I have decided to do something positive ourselves. This blog is the start. We have plans for more practical things in the pipeline. I have long believed that you can’t just complain, you need to take positive action. I will not be ground down. I will push back and do something myself to ensure people get the assistance they need. We all need to feel less helpless. More positive. More us.
Watch this space.
Until next time, Kitty.
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