Dig it up

 How does your garden grow?

Growing up in the ’70s in Brisbane, Australia in the backyard we had: a vegetable patch, compost heap, an incinerator and of course, a Hills Hoist.  It was a place to play backyard cricket, do gymnastics  or at least headstands, plant vegetable gardens and grow things like choko vines, Passionfruit, Paw Paws and Bowen Mangoes if you were lucky. My Parents love gardening,  when we were young, Mum  and Dad planted the front garden with annuals and roses, making a beautiful display outside and inside the house bunches of cut flowers were plentiful. Dad was always in the garden, he made a square shaped compost heap which provided organic matter for the  whole garden and  the rewards were plentiful, there was so much Parsley he supplied the local butcher with attractive garnishes for the shopfront. Radish were my favourite, so peppery and crunchy, the corn, lettuce, tomatoes and potatoes, growing well, just walk out to the garden so convenient. Watering was done with a garden hose and sometimes a sprinkler which in the summer, we loved to run through.

During the  perplexing COVID19 shutdown, we found a time to contemplate our surroundings and dream of a different way to live, an imminently more satisfying way to provide for ourselves. Spending time on enhancing our sub tropical garden and more time at home lead to planning a vegetable patch,  to grow our own produce has always been dream.

Wicking beds are water efficient gardening, drought resistant and a sort of upside down method of watering.

The hip height bay in our yard to provides a ledge and seating to tend the garden. This is imperative for me, living with  Parkinson's makes crouching down a difficult manoeuvre. Keeping everything at hand and being organised is vital.

Excited learning about new things.

What will we grow?

https://www.wickingbeds.com.au/video/

Kindness Rocks!

Kindness is doing something and not expecting anything in return. Kindness is respect and helping others without waiting for someone to help one back. It implies kindness no matter what.

It is lovely to be kind and to be the recipient of kindness. Kindness is a special concept ready to help you feel that warm inner glow of goodness and appreciation.

Why are people kind? Is it a soft heart? It could be because the need to feel powerful has gone and is replaced with respect affection and friendliness.

When kindness is present, ego is gone and good riddance. Ego is about self and being preoccupied mostly with the issues that affect oneself.

Being generous with ones time and spirit is a gift for modern times and something to marvel over, initially and then to accept what can be. Much too often in times past it was important to be here, there and everywhere.

A new friend finds joy in painting rocks and giving them, she places the rocks in an obvious public hiding spot or directly to the chosen recipient. The beautiful images that cover the rocks’ smooth surface are sweet and endearing. Just imagine finding a rock with a painting of a baby racoon with flowers on its head. What a gift this woman has to spread joy and happiness!

Recently, a painted rock was mysteriously left in my letterbox, it is decorated with magical swirling red patterns. Now the special gift is nestled in my Fairy Garden at the front corner of our house block. It is a wonderful feeling that someone has been so kind to do this.There are good people doing things that matter are all over the world. A passionate and talented creator of patchwork quilts is on a mission to make and donate to people affected in the tragic and horrific bushfires during the summer in Australia. A friend who is talented with computers, with an ear on the NDIS is helping people who are a little challenged with this field, this intangible gift is most thoughtful and appreciated. Helping others, time freely given and patience all make the world go around.This week is National Volunteers Week in Australia, it's the annual celebration to acknowledge the generous contribution of our nation's volunteers let us take the time to show our gratitude to the many people who choose to work for no pay. Check the website for events. www.volunteeringaustralia.org

Kindness Rocks! It is a thing!

Listen to the radio show live  Wednesday 20 May at 19:00 AEST on www.radioparkies.com 

Like DJ Madonna's Radio Show Facebook page

Lorraine Wilson

Painted by  Lorraine Wilson.

Carol Clupny and Charlie on the Tandem

DJ Madonna's Fairy Garden 

              

The recording of my radio show featuring Carol Clupny, Lorraine Wilson and Andy Butler originally broadcast 20-5-2020, enjoy with abandon.


https://www.mixcloud.com/RadioParkies_au/kindness-rocks-djmadonna-and-guests-on-radioparkiescom-20-5-2020-australia/

What the Dickens! I am back.....

What the Dickens! I am back.....

But for how long you are thinking?! Do enjoy it for what it is. 

It is, what it is.

Down an internet rabbit hole and  happened to stumble across my blog and thought why not crank it up again? 

Let me state to begin with, it still seems weird to say 'my blog' even in my head, it's a little like saying my Maserati or my Gucci handbag. It sounds so ostentatious!  The practice of writing thoughts and ideas helps to make sense of this crazy world we live in.  

How often will I write my blog? 

Perhaps a little more often than recently, which has been sporadic to say the least and piss poor to say it straight.

This July 12th will be 8 years, since I was diagnosed at 46 with Idiopathic Young Onset Parkinson's disease, let me break it down. Idiopathic - no known cause. Young Onset - diagnosed under 50. This will be three years after the cure was supposed to be found.
People said, "It's just around the corner", "it's in the labs now, in 5 years it will be on the market". 
Are drug companies interested in a cure, it seems too much money is made from the 10 million people worldwide living with Parkinson's (PLwP).

It is often said to me that the medication is so much better now. This is only uttered by people who have no idea.  The Gold Standard is a 50 year old drug, the more recent medications, agonists, were and still are akin to poison for some people, leading to impulsive behaviour that has wrecked many lives due to gambling, shopping, gaming, sex. 
"Agonists are like your best friend acting nice, but in the bigger picture they have an ulterior motive far more sinister than any benefit that the friendship could ever provide" - the words of someone who has been to hell and back and still climbing out of it.
"For some it works but in my opinion, structured social supports are required that extend way beyond what the medical profession can offer to monitor the participant. These supports need to look for the hidden signals as the participant can very easily deliberately hide the obvious signs. And there is a moral duty of care that isn’t being acknowledged, and those affected are too proud to publicly admit that they fell prey to the fiery forks of the devil disguised. This could never happen to me, I won’t be judged by my friends so I’ll keep it to myself"

The worldwide shortage of all forms of Sinemet has been going on for some time, it will continue to be in short supply until further notice. Sinemet is a widely used Parkinson's medication, marketed by Merck, Sharp & Dohme (Australia) who are keeping doctors informed. The shortage is due to a problem at the manufacturer's level. The patients prescribed this medication are advised to find a substitute. 

This will not be explained away with a nice ending. 

It is what it is. 

https://www.mixcloud.com/RadioParkies_au/djmadonna-australia-radio-show-22-4-2020-radioparkiescom-carol-clupny-dave-morse-whats-your-hobby/

My current work in progress, The Cornflower Quilt it is made in the English Paper Piecing method and designed by Jodi Godfrey.  A long term project perfect for the Covid19 lockdown, getting close to one quarter way there.

Hello is there anybody in there?

Hello,  is there anybody in there?

Just nod if you can hear me...

A knock at the door.

In my house, comfortably numb, preparing for the Wednesday night radio show, without a  thought of the repercussions,  I answered the door.

A cute little girl in a Frozen costume, her brother also wearing a frozen costume with Grandad and Grandma beaming brightly in the  front yard. They are all smiling and happy, the grandma is a recognisable Stafford identity. The group is obviously enjoying Halloween in Stafford, Trick or Treating in a neighbourhood where it is not really done. For the last 25 years it has been an older persons area, we were the young family. Years ago when my kids wanted to do Trick or Treating, I gave a warning to the elderly ladies around the corner, and a sneaky packet of wrapped lollies also.

Uh oh!! It is the 31st of October and in many places around the world this is happening. On the streets around here, the responses appear varied, a few houses are decorated in the Halloween colours of orange green and black with a liberal dose of store bought spray on cobwebs and a bit of crime tape. Where does that come from?

In general, the idea is if you want Trick or Treaters to visit, you turn your front light on, round these parts anyway. People actually sit in the darkness so as not to be visited by these types. Okay so I'm a nice lady, but a little forgetful sometimes, we had no wrapped candy, lollies, chocolates, eucalyptus, Fishermans Friend's nothing, zilch. Except fruit


https://www.mixcloud.com/RadioParkies_au/dj-madonna-radio-show-31-102018-on-radioparkiescom/

_ _ it just got real     Why? Read on                                                    

Parkinson’s is a complex disease, here are some ways  to manage Parkinson’s symptoms. Note, the word is managing not reversing, arresting, or stopping.   We live in a big country, even though Australia has a good health care system there are many regional areas without Pd specialists or Pd nurses. Self care is necessary,  in one year, most People living with Parkinson’s spend 1 hour in neurological healthcare and 8,765 hours in self-care. So get into life and learn about how to monitor your Parkinson’s. No one else will be doing it for you. 

Be Master of your own ship.

Some things I have found:

Exercise – Walking with BIG movements, PDWarrior, Dance for Parkinson’s, Pedaling for Parkinson’s.  Exercise is medicine.

Research – being involved in clinical research programs formulates relationships with health professionals whose innovative ideas assist PLwP. 

Activities and fun – hobbies, creative interests, weekly groups, learning opportunities. Art and crafts, painting, woodwork. Mental health is greatly improved with participation in choirs, group projects and being creative.  Music is a definite mood changer; radioparkies.com has opened a world of opportunities.

Meditation and mindfulness – Being present in the moment and focus on the smaller things that sometimes go unnoticed, like the trees outside the window when you are washing up.  Setting aside time to concentrate on what is happening now, the breath. Drawing and colouring, puzzles and gardening.

We need choice

Introducing: Parkinson’s Fighters United Inc.

Bringing Non Contact Boxing and other activities to Brisbane’s Parkinson’s population.

A newly formed Not For Profit Organization whose mission is to improve the lives of Queenslanders living with Parkinson’s Disease through the provision of a targeted non-contact boxing program.

Where did this idea come from?

Back in 2013 I visited the World Parkinson’s Congress in Montreal, having applied for and awarded a travel grant to assist my Poster Presentation in the category of Living well with Parkinson’s. My paper “Accessibility to Parkinson’s Specific Exercise” recognized the shortage of affordable Parkinson’s specific exercise programs and activities available in Brisbane. Being able to get out of the house and wanting to participate only to find that exercise groups are oversubscribed and at inappropriate facilities e.g., hospitals, is a barrier to better health.

On the way home through Dallas I attended a Parkinson’s specific Non Contact boxing class at Fort Worth run by Paulie Ayala, a boxing champ from USA.

In 2016, the 4^th World Parkinson’s Congress in Portland, Rock Steady Boxing Non Contact Boxing was very popular in the Renewal Room. Matt and I were part of a large group of PLwP, supporters, Physios etc. all getting sweaty whilst punching, ducking and weaving. For me it was one of the highlights of the WPC, feeling the Parkie power, seeing the smiles on all the faces and feeling the sense of belonging.

Back in Brisbane with renewed energy and increased verve to make it a reality for people with Parkinson’s here. The barriers that existed to this becoming reality fell in July, resigning from a role that I had no longer any patience for. Making way for positivity and hope. The Team that is making it real is a group of women with Pd; they care about making change happen and want more choice. Striving for better health and providing opportunities for improved outcomes for Queenslanders’ with Parkinson’s.  It is refreshing to hear YES!!

More about Parkinson’s Fighters United Inc. as the group gets into action. The group is an Incorporated Association; a launch party will be happening soon, the PFU Inc logo is being created, a location announcement, public awareness and publicity.

Visit www.riggare.se

In New York it seems like there's no Monday or Saturday or Sunday. The town is always moving. The vibe is great. 

-Thierry Henry

I am sorry if you have not been to New York City, it is a special place and I think there is not anyplace exactly like it.  I love NY.

It is a place where you get out of a cab, look around and you are instantly familiar with the area.... you have seen many movie scenes on the Courthouse steps, admired dozens of sunsets from the Brooklyn Bridge and crammed onto countless rides on the Subway. Millions  have swaggered down the numbered streets both East and West, admiring stylish buildings with doormen and mysterious inhabitants. 

What to do first?! Well there is not much time to recover from an inordinately long flight and there is so much to see, I don't usually limit myself but being a woman with Parkinsons I know how to take it down a cog or two or three and ease into a new environment. The first hour we battled the freeway traffic in a cab from JFK airport to our accommodation near Columbus Circle, that night we dined at the small restaurant next to our very humble hotel. This is where it hits us. New Yorkers are LOUD and after a drink or two they don't mind who hears their opinions, problems, issues and ideals. Fortunately the bar is long and narrow and the louder patrons are towards the front, then a woman who looks like Woody Allen's sister and her companion arrive and so does their quarrel. The two are intensely going over the situation, he is affronted due to waiting two hours for her. We don't hear her response and the ensuing discussion but it escalates and Ms Allen is left alone at the table, the man is outside and agitated. The police quickly arrive and the man is taken away. Apparently he is not on his medication.  This is a surprise to us.  The waitress says this is normal. Wouldn't happen in Australia. 

New York is safe and easy to get acquainted with the streets and subways, everyone is helpful and friendly in a busy noncommittal way. The first morning we meet Andy and Chrissy our radioparkies DJ friends and walk the short distance to the Number 1 attraction in NYC, Central Park. It is majestic, glorious and a magnificent place for the people to enjoy, we hire a row boat for $US15, it's a magical hour on the lake. Seeing the city skyline from the quiet watery perspective akin to a bubble. We see squirrels, dogs, regular park visitors, big groups and small, bubble blowers, hot dog sellers and acrobatic buskers extolling their virtues to the crowd in a non-bashful exhibition of athleticism and fun. 

That night we: Andy, Chrissy, Matt and I take the train to New Jersey to have a meatball party with DJ Laura, and her family, DJ Pete and DJ Jimmy. Our hosts collect us from the station stopping on our way at the famous Del Ponte's Bakery to buy cannoli, the shop is bursting with fancy cakes, cookies and Italian pastries, bread and rolls. We enjoy a wonderful meal, many laughs and drinks, the night goes by so quickly. We fill DJPete's car and are transported back to NYC. It's a wonderful place to be.

World Parkinson's Awareness Day #UniteForParkinsons

Tuesday 11 April, 2017 marks the 200th year since Parkinsons has become a recognised health condition. Major Parkinsons' organisations around the world will unite to create impact so amazing that people will stop and learn more about Parkinsons and what it is, the early signs and what the symptoms are. Why is it important? 

Young Onset Parkinsons disease. Parkinsons can affect anyone at any age and people in their early twenties have been diagnosed with Pd. I was diagnosed at 46, it was very straight forward, I was in the specialists room for about 10 minutes and was told very bluntly - textbook case, idiopathic Parkinsons disease, you didn't search Dr Google? I will give you a book that explains it. Do you think I got the book? 

My world was turned upside down. I was healthy, just a bit stiffer than I used to be,  and there was something about my walking that was a bit odd, the loss of dexterity was weird to me as I had used my hands to sew patchwork and stitch embroidery for many years. The biggest sign which actually scared me the most was the fact that both my hands wouldn't move on command, the right hand did what I wanted and the left hand was not participating like it was supposed to. Having no previous knowledge of Parkinsons I didn't realise that what was happening...when walking my left arm was not swinging and my left foot was not stepping correctly so the heel was dragging. Since then, gait training and medication has helped get my swing back and my foot lifting properly most times except for when the medication has worn off or when tiredness is a factor. Tremor is there too, it is called a resting tremor, isn't that fun? So when resting that's when the shakes can come, not good when trying to get to sleep. Not everyone has the shakes and medication can help alleviate this symptom. Relax...easier said than done. 

Medication on time, every time. In some cases when people with Parkinsons go to hospital their medication is taken off them and dispensed at the hospitals' regular medication time. This is horrific for people with pd whose medication is at specific times, most people with pd can feel the medication wearing off at least 30 minutes before the next dose is due. Education in hospitals is vital.

Moving strangely. People with Parkinsons can move a bit oddly, extra movement is called dyskinesia. I have friends who say they can't walk in a crowded space without whacking people with an uncontrollable arm. Likewise the foot won't do what is taken for granted, just step, it looks unbelievable.  A dear friend had dyskinesia so bad she would fall off a chair very easily. Imagine that. Control is gone. Rigidity and Bradykinesia or slowness of movement is another symptom, it feels like moving through thick mud when doing automatic tasks. 

Why is WPAD important? 

We need greater understanding of this complex health condition that affects so many in our communities world wide. 

Look at the website for information and printable materials, use #UniteForParkinsons in social media

I didn't get the book but I hope you get the message. 

https://www.worldparkinsonsday.com/

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/

Superpowers

Wouldn't it be great to be all powerfulI, like the Great Oz in The Wizard of Oz. Not fake powers, like the Great Oz which was only cheap tricks with smoke and mirrors. If superpowers were available what would you use them for....
To predict the future and win the lottery?
Scientific and medical powers to cure the big diseases?
Put an end to hunger and poverty?
Stop wars and settle refugees?
Yes, superpowers ought to make some things possible. The establishment of Parkinsons Specialist Nurses in my home state of Queensland will not need superpowers, what will be necessary is consultation, planning, organisation, training and implementation.
Why are Nuerology nurses needed in Queensland? A few facts: Queensland is BIG!! It's bigger than Texas! There are estimated to be 17,000 people living in Queensland with Parkinsons disease, communities in country areas are underserviced by medical specialists. Some PLWP fly to Brisbane for appointments with Nuerologists and other health specialists.
That's the simple part, next steps......
The conversation was touched on at Parkinsons Qld Inc., In Touch Seminar at Ipswich on Saturday.

Feeling Groovy Again

groovy adjective
Particularly excellent:
divine, fabulous, fantastic, fantastical, glorious, marvelous, sensational, splendid, superb, terrific, wonderful.
The lovely genre of grooviness will be on the playlist again this week on my Radioparkies.com Wednesday night program.

Recordings of last weeks shows

The 'P List"

https://www.mixcloud.com/radioparkieswebradio/radioshow-dj-madonna-on-19-08-2016/
Feeling Groovy
https://www.mixcloud.com/radioparkieswebradio/radioshow-dj-madonna-on-17-08-2016/

Awakening

There's more than one way to.....

Yesterday, the Board of Parkinsons Queensland Inc, of which I am a member, spent the day developing a practical and achievable strategic plan for PQI in 2016 and beyond.  New and enhanced learnings and understandings about PQI and the big picture were gained. The challenges and opportunities both internal and external were identified and discussed. Our understandings of the strategic planning process and responsibilities for governing Parkinsons Queensland were enhanced.
The day was focused and fun with an agreed direction and destiny for PQI, it's management, its staff and most importantly the people we support being planned.
More on this will be revealed in due course.

On the radio show...

Wednesday night's broadcast encountered all sorts of technical difficulties in the first half hour of the show, thankfully the show finished on a high with the special guest Glenda Rawlinson's talk, Matt Brady's joke of the week segment and 80's Big Band Music. 

Friday mornings show 'The O List' had songs beginning with O or artists names beginning with O!

Songs like: Only the Lonely, O Vertigo, One way or Another, One Love

Artists including: Roy Orbison, One Direction, Of Mice and Men, One Republic

A repeat of Glenda's talk covering all the activities she does in a week, no wonder they call her the 'pocket rocket'!

Fridays show

https://www.mixcloud.com/radioparkieswebradio/radioshow-dj-madonna-on-12-08-2016/

A groovy place

FITZ+POTTS
1180 Sandgate Road Nundah

The record room at FITZ + POTTS

Expect the unexpected

Sometimes, life throws you a curve ball, and what can you do? Depending on what the situation is, and the magnitude of the shock at the time of revelation, was it totally unexpected?

I refer to my diagnosis of Young Onset Parkinsons disease 12-7-2012, for me this was an immense shock. I knew nothing about Parkinsons. Thinking back, the signs were there a long time before the diagnosis.... as long as six years before I had pins hand needles in my left hand, I remember this because I was making craft for a school fete with a wonderful group of women at the time. Too busy to think more of a tiny thing like pins and needles. The next thing was a sore, stiff left shoulder and restricted movement, twas not a big deal just a minor inconvenience. In 2011, I realised my walking was a little different but didn't analyse it too much, the big thing was yet to come. My sister and I went to a play, I cant remember the name of it, the night we went there was a large group of hearing impaired people in the audience and AUSLAN signing. Clapping was not the way to show appreciation, it was both hands being waved in a fast fashion. I tried this, but only my right hand could move, the left wouldn't, I looked at it and willed it to move. Nothing! Very soon after I went to the doctor and asked for a referral to a good physiotherapist and a scan for my shoulder. The scan showed only a minor issue, the Physio put me through strength tests and walking and asked,  "How long have you had a limp?" and said she was pretty sure the problem was either a slight stroke or Parkinsons and I must go back to the GP and get a referral for a Nuerologist. Oh how I cried that night. The GP read the letter from the Physio and got me to walk around a bit, and said "no I don't see it, no not Parkinsons". I insisted on a referral to a Nuerologist. After a wait of three months for an appointment with a Nuerologist, the diagnosis of Idiopathic Young Onset Parkinsons was given, a prescription and the news that if the medication worked it was the only way of confirming diagnosis. No other information, no promised book. So much crying ensued, but not till I got outside the office. The story is similar for many for my friends living with Parkinsons. That's why I talk about it and write about it.
In 1969, Elizabeth Kubler-Ross outlined in her book, "On Death and Dying" the five stages of grief: Denial, anger, bargaining, depression and acceptance. I believe I have come through all that and onto acceptance.

Wednesday Radioparkies show: Whistle Songs Part 2
https://www.mixcloud.com/radioparkieswebradio/radioshow-dj-madonna-on-03-08-2016/

Fabulous playlist on Whistle Songs Part 2, why so fabulous? It's the input from my friends that makes such a diverse and fun list. Special guest, 60 year old Mick Bourke from Central Coast, New South Wales. I call him 'strongman' because he can hold a plank for 40 minutes. What's his secret? Amazing core strength and mental fortitude. Do you remember the old Ab Roller or Ab Wheel? Was it was a K-Tel product? Mick has Parkinsons, has done a lot of body rebuilding and is training for a World Record attempt for a Weighted Plank at the upcoming NSW Unity Walk. Below is a link to his fundraising page. Good luck Mick.
https://www.facebook.com/l.php?u=https%3A%2F%2Fparkinsonsnsw.gofundraise.com.au%2Fpage%2FMickBourke&h=VAQG45oQD
Friday Radioparkies show: The N List - Never give up
https://www.mixcloud.com/radioparkieswebradio/radioshow-dj-madonna-on-05-08-2016/

Let your voice be heard!! Share your PD story, it really is helpful to hear others perspectives.

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/