Never Alone

These two words feel so comfortable and cosy. I read them many times each week, my friend 

DJJimmy was the first one I know to use them. Such a powerful message when struggling with anything but especially when living with a chronic degenerative neurological disease. So what's it like? It's often being unsure, losing confidence, forgetting threads of conversations, stumbling along when everyone else is gliding like swans, feeling like a stiff robot, shaking like it's freezing when it's just a little cool, sweating like its a heatwave when it's just a little warm. It's also having renewed empathy and understanding because the news of diagnosis has knocked you for six. The state of being vulnerable, which has always had negative connotations is now about being authentic and honest. Life is hard and when living with Parkinson's it's often difficult to do ordinary things easily and in a normal amount of time. Bradykinesia is the name given to the slowness of movement that PWP often have. Anhedinia is the name for the apathy that can make everything worthless and who cares anyway. Dystonia is the term for the most terrible muscular spasms you can imagine, the body taking on a contorted, painful and weird life of its own. Dyskinesia is abnormality or impairment of voluntary movement. This is the tip of the iceberg and everyone has different symptoms. 

All the above are the reasons that over 4000 people are registered for the fourth World Parkinson Congress in Portland. Top international health professionals, carers, people living with Parkinson's, and many more are coming together to share hope, news, ideas, and inspiration. Scientists and health professionals want to share with their counterparts. Creative and passionate people will share and we will embrace. But collectively, we are all wanting better treatments and improved outcomes for PLWP. Mostly the people with Pd just want to hang out with the friends they have made on social media support groups, partake in the activities, be inspired by the talented and listen for ways to make life easier for us and our families. The elusive cure will most probably not be announced. But we will enjoy what is now and that in itself is a gift to be cherished. 

Radioparkies will be represented by many DJs and associates in the Exhibitors Hall booth 820, come by and say hello. We love to meet new people and share our love of the radio station and shows that are produced by people with pd. 

millionaires

Millionaires......

Driving into downtown Vancouver the taxi driver tells us the the properties are worth millions 

Arrived at our hotel, Rosdale on Robson in Vancouver Canada at 8am after a flight of over 13 hours from Brisbane, Australia. Our suite was ready and sooooo comfortable. Shower and nap then off to the Granville Island markets, lunch at Bridges. Whilst searching for moccasins for Matt's mum we founds heaps of cool stuff: Canadian flag hip flask, Vancouver Millionares Cardigan and, fat quarteres for my next log cabin quilt etc, etc. I must say it was an outstanding day! The average person in Vacouver is courteous, friendly and secretly cool. The street people are ever present and humble "hello, can I ask you for 75cents?" The seagulls were monsterous and polite too. 

A vintage sports shop caught our eye at the Granville Island Market, we like retro and original logos, what caught our attention was the Vancouver Millionares Hockey team logo. A team long gone but the V lives on in history and on hats, t shirts, cardigans. The Vancouver Millionares won the Stanley Cup in 1915, in a five game play off the Millionares beat the Senators. The shop paid homage to many champion baseball and ice hockey teams, the sales guy was so fun and friendly.  

What's this got to do  with PD?
Some big personalities in American sports will be at the upcoming World Parkinson Congress, and I hope to interview some of them, champions that are encouraging PWP to live with hope and strength Brian Grant, Maryum May May Ali, Ben  Petrik.
Ordinary PWP who are not sports stars but champions of the people are on my list too and I invite all attending the WPC in Portland 20-23 September to visit the Radioparkies Booth 820 and say hello.
Poutine, fish tacos and wine at the hotel sports bar completed our first day in Canada, what a fabulous day.
So rich in many ways

Thanks DJRobert for filling in for me, here is the latest show. 

https://www.mixcloud.com/radioparkieswebradio/radioshow-dj-rob-on-06-09-2016/

The countdown to the World Parkinson Congress is on!

The planning committees have fully prepared an amazing event "Bringing the Parkinson's Community Together" is the goal and with that in mind, advancing science, promoting community and inspiring hope will be the outcomes. The committees are numerous: Steering, Program, Advocates for Parkinson, Fundraising, Local Organizing, Organizations, Communications, WPC 2016 Ambassadors and the various sub committees. The WPC are designed and held every three years, it provides an international forum for learning about and discussing the latest scientific discoveries, medical practices and initiatives related to PD. Bringing the community together in order to advance the worldwide dialogue and ultimately find the cure for this disease. This is from the program for the WPC. 

It makes you want to go? Book those tickets. Not much funds? Plan for next time, perhaps it will be closer to home?

I am going!

Yes indeed. This will be my second WPC, in 2013 it was in Montreal, I submitted an abstract in the Living Well with Parkinsons category of the Poster display and was fortunate to receive a travel grant from the WPC. My three daughters volunteered at the congress. This year I am the beneficiary of a travel grant again, my paper called Webradio station Radioparkies.com entertaining and informing people with Parkinson's will be at the Poster display at Exhibit Hall B Level 1, Poster Board number 40.04, for the duration of the Congress. I will be at the poster 11:30am - 1:30 pm Friday, September 23 to meet delegates and answer questions. The poster area is one of my favourite places. 

The Living with PD Topics: public education or awareness programs; Gov advocacy, campaigns, public policy, Living well with PD, Advancing research via fundraising, trials and  educational campaigns. All abstracts selected for display will be published in the journal supplement and CD.

The scientific topics: Basic Science, Clinical Science and Comprehensive Care cover numerous areas and all abstracts will be published in the journal supplement and CD. Thank you to the generous, wonderful people and organizations that make funds available for travel grants. 

Radioparkies DJ's are going too!

A collection of DJ's will be in the Exhibitors Hall talking about Radioparkies.com, how to use the website, listen to the radioshows, conducting interviews and broadcasting live from the WPC!! 

Meet your favourite DJ's at Booth 820. Who will be there? Laura, Jimmy, Pete, Andy, Dan, Chrissy, David, Madonna, Andre, Tanna, Chris and Matt. Please come and say hi!

Let your voice be heard.....

Thats the motto of Radioparkies. If you are a PWP or in anyway associated with Parkinson's, I want to hear from you, please be a special guest on my weekly radio show. It's important to share your perpectives, interests, passions and ideas. Why? Because you are great! The list of people who have been on my show is the 'who's who' of amazing, you are invited to be a part of it too. Send a message and lets do this.

Fridays show
Special Guest Carol Wood and I talked at the beach, Queen dominated the Q list.
https://www.mixcloud.com/radioparkieswebradio/radioshow-dj-madonna-on-26-08-2016/

On being fabulous

Sometimes I just can't help it, I'm fabulous! Other times I'm just me.....

This week I've been spectacular in a few ways.....I have indeed

- taken brisk morning walks

- organised support group meetings for which I will not be present because I've double booked

- started a paper diary to keep it all together
- produced two fantastic radio shows from my own home
- started my poster for the WPC poster displays
- planned the borders for a quilt
- talked with great people around the world

Not so splendid in some ways, but no need to dwell on that, onward and upward!!

Another thing that really is fantastically wonderful, is having contact with interesting people with great ideas. The world is an amazing place and I am so grateful for all the friendships and inspiring works that people do, whether it be artistic or altruistic or just plain fun. The people that have been on my Radioparkies radio show as special guests are spreading hope to persevere and offering an alternate view on life as they see it.

DJMadonna wants you! 

The motto of Radioparkies web based radio station is "Let Your Voice Be Heard". Radioparkies started over five years ago as a collaboration between Jean Paul De Cremer and George Hanks. Both men living with Parkinson's disease, Jean Paul in Belgium and George in England. Sadly George died a couple of years ago, but the dream to provide entertainment and information continues.  The radio station provides 24 hour music interspersed with DJs from around the world.....Australia, Belgium, England, France, Romania, Germany and USA. 

Guests on my radioshow are people living with Parkinson's, carers, family members, health professionals, PhD students, professors, Nuerologists....a self recorded talk is emailed to me and I play it on the show. It is easy.

I believe everyone has a story, will you share yours?

Send me an email at parkies@live.be put DJMadonna in the subject line, I will send information on the process. All the people who have done a talk for the show have said it's a liberating experience. 

Friday morning  show

https://www.mixcloud.com/radioparkieswebradio/radioshow-dj-madonna-on-29-07-2016/

Wednesday night radio show
https://www.mixcloud.com/radioparkieswebradio/radioshow-dj-madonna-on-27-07-2016/

Rewind

A bit of background 

I'm Madonna Brady, of Brisbane, Australia I'm a younger person living with Parkinson's Disease, Young at Park Support Group Leader, member of the Management Committee for Parkinsons Qld and a DJ on radioparkies.com 
I'm also an advocate for quality of life activities for people living with Parkinson's.  It was just over four years ago that I was diagnosed with idiopathic young onset disease. That seems so long ago, it was the very beginning of my education into PD, having no knowledge or experience of any neurological conditions, the search for what I could do to help myself had begun. 

Knowledge is power

In 2013 I attended the Montreal World Parkinson's Congress, having written a paper on what I think was needed for my area, the paper was considered worthy of a travel grant. The poster version was displayed in the Poster Hall of the congress with hundreds of other posters from scientists, researchers, health specialists, people living with pd etc. Accessibility to Parkinson's specific exercise is still a very real issue when living well with PD, affordable activities in the community are essential and vital.

 

Last year at the Australian Parkinson's Conference, I was approached to become a DJ on the Belgium based web radio station Radioparkies.com and I have just celebrated the year with a 'Party Playlist' on my weekly Wednesday night radio show. Being a DJ is an amazing thing and I love it, there are highs and lows as with anything in life, but we must keep going. Keep playing the songs. I enjoy finding the songs, researching themes, having conversations with Parkies and people associated with Parkinson's about their lives and raising awareness by getting their stories broadcast on the world wide radio station. 

I believe music is a way to lift the mood, change the day and transport us to a different place.

I have written a new paper for the upcoming World Parkinson's Congress in Portland USA this September, it's about the use of Radioparkies Web radio station to entertain and inform people living with Pd. I have been awarded a travel grant from the WPC to attend the meeting and display the poster yet to be made. Speaking at PD support group meetings about the how to use the radio station and website is exciting and Ipswich was the first group in mid June 2016. Volunteering as a DJ in Radioparkies Booth at the Portland Convention Centre will be awesome.

Let your voice be heard

Listen live

http://www.radionomy.com/en/radio/radio-parkies

www.wpc2016.org

www.radioparkies.com