Resilience NEVER goes out of style

My favourite cricketer, Australian Mitchell Johnson, is a man of style and character, and has just released  his book 'Resilient'.  Mitchell Johnson's story is one of talent, courage, determination and heart. All those qualities will see us through trials and tribulations, ups and downs, talking about the weirdness of this life helps to make things bearable. He is a former shy guy sharing  stories of inspiring people that have been a part of his life and sporting photos will accompany it. I really never cared for cricket before the Summer of 2013-2014  Ashes series in Australia when Johnson dominated against the English  team. 

Bethany Hamilton is an American professional surfer who survived a 2003 shark attack in which her left arm was bitten off, she has successfully returned to competitive surfing.  Hamilton wrote about the experience in the 2004 autobiography Soul Surfer: A true story of Faith, Family.... the feature film Soul Surfer was released in April 2011.

Nick Vujicic is an Australian motivational speaker born with phocomelia, a rare disorder characterised by the absence of legs and arms, he has overcome his disability to live a rich and fulfilling life.  Becoming a role model for anyone seeking true happiness, the book Life Without Limits, 2010 shares his amazing outlook.

What do these people have in common....  attitude and resilience and a lot of 'positive self talk' too.

radioparkies.com

I'm  DJMadonna  on the worldwide internet radio station for people with Parkinson's

Tonight the theme for my radio show is Americana, go to the above website and listen live at 20:00 

Australia Eastern Standard Time. Each Wednesday a different theme and a talk or an interview with someone with Parkinsons or associated with Pd, tonight my special guest is Roger Halleen, President of the Illinois chapter of APDA. It's the last of my interviews recorded at the recent World Parkinson Congress. 

I have had a break from writing here, if you want to catch some of the other radioshows' please check them out on.

https://www.mixcloud.com/radioparkieswebradio/radioshow-dj-madonna-on-03-11-2016/

Friendship is the hardest thing in the world to explain. It's not something you learn in school. But if you haven't learned the meaning of friendship, you haven't learned anything. - Muhammad Ali

Thanks Ali, that being said I can concentrate on the warm fuzzy feeling of meeting people for the first time that you may have been friends with on social media and then meeting them in real life. 

This happened at the World Parkinson Congress, Portland Oregon. It's akin to modern day pen friends. Let me explain.

The friendship with one friend, we will call AJ, really began in September 2013, we were on the same FB PD group, AJ was in Florida and I had just landed in New York, an Aussie on holiday with three daughters in a huge city on the way to the third WPC in Montreal. Alarm bells had began clanging before we left Australia  about that particular part of the trip, I'm a true believer in fate and giving things a chance, maybe it would be fine... It was not ideal. Intuitively AJ knew I was unsure of my situation there and reached out with advice and helpful suggestions regarding the subway, good things to do and anything else I wanted to know. How kind! Since then we have typed sporadically at best, but the thread of friendship was there. Zoom through to WPC in Portland and AJ was there in person! My friend AJ. We already know a lot about each other: family, love good music, value a laugh. Easy.

Another one comes to mind AH, we have been long distance friends since diagnosis of PD found us on the same FB group. Last Friday, AH found me at my poster display at the Portland WPC. Wow, we hit it off straight away, the basis of friendship was there, similar likes and ideas on music and stuff. We made loose arrangements to meet for dinner at Deschutes Brewery, a famous alehouse that we had tried to go to twice before...there was a lot to do before then. The Radioparkies Booth had to be dismantled and things divided up. 

The night of the Trifecta

Somehow managed to go to all three of these iconic places on our last night in Portland:

Deschute's Brewery an award winning craft brewery for dinner and drinks, then across the road to Powell's Books - The world's largest independent bookstore, over five levels of books! So many books, so little time, a joke book was needed and found. Voodoo Doughnuts - an avant guard independent doughnut shop that captures the kooky essence of Portland with unusual doughnuts, eclectic decor and iconic pink boxes. The pink boxes are constantly sighted around the city.

A whirlwind week, and by all accounts a very successful first venture by the DJ's and friends of radioparkies. Many connections made, interviews done, information shared photos taken. The huge winner is friendship and the feeling of understanding, camaraderie and compassion, the feeling  is immeasurable and for this I'm most thankful.

My latest radioshow- Happy Trails
https://www.mixcloud.com/radioparkieswebradio/radioshow-dj-madonna-on-28-09-2016/

Radioparkies and Portland Oregon WPC

Today is our last day in Portland, the World Parkinson's Congress closed yesterday. What a week it's been! The Radioparkies team worked together very well, and showed amazing  dedication and enthusiasm throughout the entire congress. It takes a village to support people living with Pd and the tribe was strong and on point. Lots of laughs and new connections have been made and the networking and socialising a highlight also. The vibe at the Portland Convention Centre was jovial and friendly, the feeling of support and community strong. Every person was interested in learning, sharing and also getting acquainted with old mates and meeting people in person, whom they may have corresponded with over many years.
Portland is an easy city to navigate through, the trams and buses are easy and plentiful, watch out though, the tram tracks can be treacherous.
My poster 40.04, called webradio station  Radioparkies.com entertaining and informing PLWP,  went up on the Tuesday afternoon and we were flat chat at the Radioparkies booth and doing interviews until 3:30 Friday with social gatherings to attend every evening. So busy. So great!
So much to experience on the program, but would have needed a clone to do half of it. All of the sessions will be available on the WPC2016 app, this means everyone will be able to access the information. We managed to attend the Rock Steady Boxing session at the Renewal Room, it was fun, energetic and empowering. Many of the RSB coaches were in attendance as volunteers and the feeling in the room was powerful! Something like this will happen in Brisbane, my home town.
Everyone we talked to was very responsive to Radioparkies and the concept excited all. Interviews to look forward to from the WPC are: Glen Prestidge, Laura Hitchens, Steve Sant, Ken Lee, Roger Halleen, Nan Little, Becky Farley. More interviews will also happen now that everyone is heading home.
It was a terrific week, people who helped in any way are appreciated, when life returns to a regular pattern more stories will be forthcoming. I look forward to sharing the Night of the Trifecta, the missing pants and Keeping Portland Weird.

Here is my Friday radio show, the S List, recorded live in Portland Oregon, home of the 4th WPC 

https://www.mixcloud.com/radioparkieswebradio/radioshow-dj-madonna-on-22-09-2016/

Being

Being present and in the moment is an essential tool when it comes to living with Parkinson's disease and ordinary lives as well.  The realisation that now is the most important time is a true gift.  I believe that a diagnosis of a chronic degenerative disease is an event so life changing for the person diagnosed and the close family.  It is a difficult time, but also a time to embrace true feelings. Some people, friends and family, don't know what to say when they hear this news and so they say nothing. In the early stages most people say the parkinson symptoms can't be noticed. Most PWP testify that it all starts with a twitching of the finger. Personally not being as agile was and is still surprising to me, ordinary little things like putting things in bags, walking, getting out of a low chair all take on a new dimension. I feel awkward, and I know it can be hard to see me doing things that require dexterity. But I'm not giving up. Parkie friends have said that others have accused them of being drunk. Words can be slurred and walking a little wonky, it's the body taking on itself and too bad what the brain wants. So walk with us and give us time to respond, give us a minute more to get going. 

Mindfulness is a way of making the brain be still and concentrating on now and not projecting the mind to something unknown. This is certainly a good thing to learn about and practice, a friend is doing a course in it and needs guinea pigs. My arm shot up like someone with dystonia. 

The philosopher Eckhart Tolle has a lot to say about consciousness and talks about it in very easy terms. Dogs! Looking at a dog and into its eyes you can sense the dogs being and it enhances your ability to feel your own being, to enjoy what is happening now. The dog loves to see you, and experiences a lot of joy when you pat it and acknowledge its presence, it is so wonderful to be alive and so great to be with you. Isn't that a great response. Babies are similar, we don't pat them but we connect and make some communication with them, and you can feel your own being.

Recently I saw some ideas exchanged about Ego and Pride on social media. It started with someone saying that when diagnosed with Young Onset Pd that letting go of pride early will help immensely.

Sense of self was being referred to, not vanity and pride of appearance. 

The World Parkinson's Congress will see a lot of people who are Parkinson's proud and happy to be together to learn, support and have understanding. The glow of acceptance and the experience of meeting new people who understand will carry us forward. 

That why I love radioparkies.com it's run by Parkies for Parkies and other cool people. All around the world we can connect this way through the forums, chat, live radio shows and more. It's not organisations telling us whats good for us, its just about being present.

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/