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/

Sometimes things don't go as planned

Last week, some of the radio shows on radioparkies.com could not be broadcast as there was something happening that was out of our control. The best efforts were made by our technical team to get the shows out, but to no avail. So what did I do? I had the night off!!

So this week on Wednesday at 8pm Brisbane time,  I will endeavour to produce the Whistling Songs show from last Wednesday.

Whistling Songs - All the songs on the play list have a little or a lot of whistling . The greats of music have put out songs with a little interlude of whistling, sometimes at the start of the song, in the middle or at the end. Fine robust sounds or breathy imperfect sounds, the whistle is an instrument itself. 
I have always loved to whistle, especially whistling along to Billy Joel's song Stranger and Bryan Ferry singing Jealous. But I find my whistle is not as loud as it once was. Is this due to Parkinsons? At the park, I call my dog Indy with a very soft whistle, which she can hear, I'm sure she can, she just wants to keep playing.   

Friday morning DJRobert sat in for me while I went to Melbourne with my Craft Group. Rob had a great show lined up, but alas, there was an issue with that show also. This time I think the gremlins or pokemons were the cause of the problem, but Rob did his best and held his own.

I travelled to Melbourne for the weekend to meet up with an amazing, supportive group of crafters and artists for Christmas in July lunch. Ah what fun!
While in Melbourne, I caught the newly opened exhibit - Making the Australian Quilt, at The National Gallery of Victoria. A beautiful and simple display of intriguing Aussie quilt history, some immense works of art still as vibrant in colour as the year they were made and others made from samples of suits or old clothes. So many stitches, so many stories, one of my favourites was located at a Melbourne market about ten years ago as a cover for merchandise. It is made from a wonderful collection of 1960's dress fabrics. Its maker is unknown. So, don't forget to make a label for your quilts, the next generation will want to know who the clever and industrious sewer was. The label I am embroidering is not finished, I think it needs a little more.....  

Patience is a virtue

There was never a more true statement. 

Finally, a quilt I've been working on sporadically for at least 18 years is finished. It's been an organised event, I collected offcuts from all the projects that ever crossed my cutting board and those were cut to one and three quarter inch slices and kept in a Tupperware slice container. Over the years this was added to until the container was full, then I felt a bit more variety was needed, some different pieces that I wouldn't have chosen. I placed a request on Facebook and received four packets of fabric from around Australia and a special parcel from Israel also. The collection was complete. 

I was working on the oldest Bernina sewing machine, in fact it's older than me. My sister in law Robyn, who sews and sews and knows so much about machines advised a new machine was in order, something with modern conveniences. So I got a Pfaff..... Wow! Into the new age I limped, I'm not as fast as some, but slow and steady.... The quilt is eight rows of eight blocks, it has been quilted professionally, the binding hand sewn and finished on Friday while I listened to my radio shows with my elderly parents. The last thing is a label, more on that another time.

This week on the radio show the special guest, Robert Clarke aka DJRobert, talked about his interests, one of which is building his own car. The process is taking a long time, I won't tell you how long, you'll have to listen to the show if you haven't already. 

The Wednesday playlist is Songs about Birds, so many birds have been captured in song:  I like Birds,Rockin Robin, Bird on a Wire.... 
Friday is the ''L List"

Friday morning radioshow and Wednesday night radioshow

https://www.mixcloud.com/radioparkieswebradio/radioshow-dj-madonna-on-14-07-2016/

https://www.mixcloud.com/radioparkieswebradio/radioshow-dj-madonna-on-13-7-2016/

Life is full of surprises

I have a choice

Recently an article has been circulating that is so good, it must be shared. But not all at once! Oh no, it's good to ponder it piece by piece.

I always have a choice - It may not be an easy choice, but I have a choice. I did not choose to have Parkinson's disease, but I can choose how I live with it.

That is a powerful statement, there is truth and honesty.

This week on the radio show, a gentleman called Mark Ereira talked about the happiness of living in a care home and being able to give back by entertaining the residents with karioke and playing the harmonica. Mark played Fly Me to the Moon on the harmonica and sang Mona Lisa which were recorded for the show.
https://www.mixcloud.com/radioparkieswebradio/radioshow-dj-madonna-on-06-07-2016/

During the process of interviewing I have learnt the basics of editing which is sort of fun when the save button has been remembered is clicked on. The 'undo' is my favourite symbol. A new program has been installed because I'm trying to make a catchy jingle for the start of my show. Thanks Mr Tech! Hmmmmm, not managing very well, actually managing to do nothing but crash the program and fall asleep at the computer. If there is anyone out there with some jingle skills.....would love a cool intro to my show. Pretty please.
Actually, why not make it a jingle competition, the winner will have the glory of having the jingle played world wide on Radioparkies, send entries to parkies@live.be

Sing a happy song

Show Tunes

Music can take you anywhere and show tunes definitely make me feel happy, except for those annoying ones. Can't think of any annoying show tunes at the moment, my head is full of happy songs and the verve of the music I've been listening to whilst preparing for the Wednesday radio show.

Happy talk....you've got to have a dream, if you don't have a dream......

Oh happy days.....

Fly me to the moon....

If I were a rich man.....

Music therapy
Studies show that people with music in their lives on a regular basis have a more positive frame of mind. It's great to belt out some show tunes and researchers working with elderly residents in a USA care home showed marked improvements of those who sang along with show tunes compared to those who just listened. A recent episode of Compass on ABC Australia TV showed remarkable changes with elderly people involved with music therapy.

Attitude
Science tells us that the attitude of gratitude is a good health choice and being grateful often makes us more optimistic and happy. When you are conscious of your blessings and are grateful for them, you are focussed on the good things and this sends the brain a good message.

Interview  with Mark Ereira, entertainer, book binder and Parkie philosopher.

Let Your Voice be Heard

Turn on Radioparkies listen live at 20:00hrs Brisbane EST Australia http://www.radionomy.com/en/radio/radio-parkies

Look for a Timezone close to you
http://www.radioparkies.com/radiogids.htm

Happy Friday

Happy New Year! With the new year comes new beginnings, another chance to start anew. Have a look at life in a fresh way. Planning a NFY resolution? I am!  Here it is......Get more sleep 

The takeaway message from Linda Rondstadt in the interview below is really vital for everyone and especially for people living with Parkinson's. 

The recording of Friday's show is below. 

https://www.mixcloud.com/radioparkieswebradio/radioshow-dj-madonna-on-01-07-2016/

Further to what was mentioned in the interview,  LSVT BIG AND LOUD are treatments that specifically address the freezing symptoms that can occur with speech, walking and other activities of daily living.

There is  free webinar opportunity coming up on Wednesday 13 July 2016, give it a go.

www.lsvtglobal.com

Smaller steps and shuffling walk are classic traits of Parkinson's, it is possible to retrain your walking style. There are videos showing the exercises for LSVT BIG available on YouTube, it's all about big movements: big swinging arms, long steps and striking the heal first when walking. 

A soft voice is also very common with Parkinson's, LSVT LOUD is about speaking loudly and using the voice with intent, projecting the voice and making your voice be heard. 

Next Wednesday on my Radioparkies radio show

Show Tunes! Yes!  Special guest is Mark Ereira, Sydney

Get ready to sing along to your favourite songs from musicals old and new. 

Be transported to another place and time......

Send your requests now to 

parkies@live.be

Let your your voice be heard! 

Keep Moving

Linda Rondstadt and DJ_Pete interview on Radioparkies 

Recording of Wednesday night Radioparkies show 

https://www.mixcloud.com/radioparkieswebradio/radioshow-dj-madonna-on-29-06-2016/

Linda and DJ_Pete talked on the phone recently, Linda talks candidly about the early signs and diagnosis of Parkinson's, family history. 

Linda spoke of LSVT therapy being helpful, every morning Linda does the LSVT exercises first thing, diet of low GI food and vegan diet is what works for her. 

DJ_Pete thanked Linda for 'coming out' about having Parkinson's, and it has raised the profile and awareness that anyone can get Parkinson's. 

Music - Linda Rondstadt gems: You're No Good, I'll never Marry with Johhny Cash, Tumbling Dice, Different Drum. 

Country music: Eric Bibb, Neil Young, Maren Morris, Reba McIntire and more

Joke of the week - another fun joke from Matt Brady

News

LSVT Global - free Parkinson's webinar opportunity July 13, 2016

Go to the website www.lsvtglobal.com to register 

Young at Park Support Group meeting 4-7-17 contact Parkinson's Qld

Light of Day Concert Australia 22 & 23 July, Ocean Grove Victoria. 

Go to www.lightofdayaustralia.com for tickets

Thinking back

The simple things, like brushing teeth, washing dishes, sewing and knitting can be much more difficult when affected by Parkinson's. But it is hard to describe, I remember not being able to put things into bags, and typing had become much more difficult and I was relying on my right hand more. I was feeling old and really stiff, my gait was weird, I didn't realise that my left arm wasn't swinging and my foot was dragging a little when I walked.  But what really got me worried was the inability to do jazz hands! My right hand could shake but my left hand would not move. 

More public awareness about Parkinson's will lead to early diagnosis and therapy can begin. 

This week on Radioparkies Linda Rondstadt

It's so easy.......

The one and only Linda Rondstadt is talking to DJ_Pete on Radioparkies on Wednesday 02:00hrs Brisbane AEST. Linda is an American popular music singer who has earned 11 Grammy Awards among many other accolades and inducted to the Rock and Roll Hall of Fame in 2014. She has been a much loved and prolific recording artist, collaborating with many of the world's greatest. Selling more than 100 million records and is one of the world's best-selling artists of all time.

Ms Rondstadt was diagnosed with Parkinson's in 2012 which tragically, has left her unable to sing. She is happy to share her time and talk about the diagnosis openly, her willingness to talk candidly is a gift to us all. The interview with DJ_Pete was recorded in June 2016.

Parkinson's affects people in so many ways, the top ten symptoms that may or may not be noticeable to others.... in no particular order: tremor, rigidity, constipation, depression, voice issues, chronic pain, cognitive issues, fatigue, foot drag, loss of dexterity.

Wednesday night's radio show with DJMadonna 20:00hrs AEST Brisbane.

The interview - DJ_Pete and Linda Rondstadt

Music - country rock and a couple of Linda Rondstadts best.


You've got to laugh....

Joke of the Week - Matt Brady, will regale us with another funny story.


Apps to search for

Words with friends - online scrabble against people around the world.
Snapchat - popular mobile app that allows you to send videos and pictures that will self destruct after a few seconds of a person viewing them.
Notes - a great place to write things like lists, dates, information, pd diary



Be my guest.....everyone has a story and we want you to tell yours. Send an email to parkies@live.be

Let your voice be heard.    parkies@live.be                          www.radioparkies.com

Alphabet Songs

The I List

https://www.mixcloud.com/radioparkieswebradio/radioshow-dj-madonna-on-24-06-2016/

On the playlist, 'I List', songs and artists beginning with I.....I believe I can fly, Imagine, I need you tonight, I still haven't found what I'm looking for.

New segment - Joke of the week as told by Matt Brady

Talk by Janice Rowan, optimist, children's storyteller, parky poet.


Apps to try.

Medicine X Parkinson's explained - information for newly diagnosed

Charity Miles - exercise tracker

Medisafe - medication reminder


Be a guest on my show, everyone has a story to share, it's a great experience. Send an email to parkies@live.be

Let Your Voice Be Heard

www.radioparkies.com

Don't Worry Be Happy

The Bright Side of Life - Don't worry be happy

Recording of Wednesday night Radioparkies show.

https://www.mixcloud.com/radioparkieswebradio/radioshow-dj-madonna-on-22-06-2016/

Inspired by the positive people I have around me, the radio show playlist is a happy and uplifting hour of songs. Bobby McFerrin, Katrina and the Waves, Keb Mo, Eric Idle...... 

Talk by Janice Rowan, optimist, children's storybook writer, parky poet. Janice talked about the exciting collaboration with Medicine X, an app for people newly diagnosed with Parkinson's. It's free and it's very informative. I wish all people with pd could access this helpful app. 

http://www.parkinsonsxplained.com.au/

Debut new segment, Joke of the Week, told by Matt Brady - Did you hear the one about two giraffes who go to the pub?........

Music can alter your mood and take you to another place, so can meditation, relaxation, yoga and mindfulness. Hope you enjoyed the show. 

If you are playing drinking games the word is "great"

The Bright Side of Life

Always look on the bright side of life

The theme is The Bright Side of Life for the music on the DJMadonna Wednesday night show. Live at 20:00hrs  Brisbane  AEST and around the world, check out the Radioparkies schedule (below) for the time in your closest country.

It is beneficial to hear that attitude can really assist your everyday perceptions. Listening to DJAndys recent interview with Tom Isaacs, it really struck home that a positive outlook is a vital part of doing well. In any scenario, attitude is the deciding factor. This is so true! What's the quote about sitting on a cactus?

"Being negative only makes a difficult journey more difficult. You may be given a cactus, but you don't have to sit on it".

The music on the playlist will embrace the bright side of life....What a feeling, Here comes the sun, I feel good, My favourite things...
So it's a really happy playlist, brimfull of optimistic ideals, fun lyrics and upbeat music.

Talk by Janice Rowan, optimist, children's storyteller and Parky poet.

And introducing.....drumroll please...The Joke of the Week!
A new segment from funnyman Matt Brady

Let Your Voice Be Heard

Turn on Radioparkies, you can even listen to it during that famous football game. Put the ear phones in and listen live on the link below:

Listen live http://www.radionomy.com/en/radio/radio-parkies/share

Find the broadcast  time where you live using the link to the Radioparkies radio show schedule below:

Radioparkies programme guide http://www.radioparkies.com/radiogidsbrisbane.

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

The 'H List'

Recording of the Friday morning show.

Friday morning 8am - 9am, Australia Eastern Standard Time. There is a cluster of radioparkies DJs bringing fabulous shows. This week five DJs in a row starting with DJSpilly Belgium at 5am, DJDavid UK at 6am, DJJimmy USA at 7am, DJMadonna AUSTRALIA at 8am, DJLaura USA at 9am.

https://www.mixcloud.com/radioparkieswebradio/radioshow-dj-madonna-on-17-06-2016/

Playlist

Hanson, Harlem Globetrotters, Hallelujah, Happy, Heart of Glass, Help is on the Way, Hey Ya!, Here Comes Your Man, etc.

Talk by Dave Morse - shipwright, Photographer, legend

Let Your Voice Be Heard!

Enjoy your weekend.

 P.S. What's the collective noun for a group of DJs? A deck? A studio? A collections?

Double Whammy Wednesday

Recording of the DWW radio show

Radioparkies.com is a web radio station powered by people with Parkinson's for people living with Parkinson's, their family and friends. Music, local PD news, talks by people living with Pd or associated with Parkinson's.

Let Your Voice Be Heard

https://www.mixcloud.com/radioparkieswebradio/radioshow-dj-madonna-on-15-06-2016/



Playlist
Etta James: Pushover, Finders Keepers
Van Morrison: Bright Side, Brown Eyed Girl
Neil Diamond: Song Sung Blue, Beautiful Noise
Talk by Dave Morse
Amy Winehouse: Valerie, Rehab
Pete Murray: Opportunity, So Beautiful
Adele: Hello, Skyfall
Coldplay: Yellow

Djmaddyb is in da house!

Testing testing....123

Every week I broadcast two radio shows via the web based radio station  www.radioparkies.com
It's the only radio station in the world powered by people with Parkinson's for people with Pd, their friends and family. Radioparkies.com is about entertainment and information for people living with Parkinson's and it's based in Belgium. The music broadcast is 24 hours/7days and scheduled DJ's present radio shows at specific times.

My shows are on Wednesday 20:00hrs - 21:00 Australian Eastern Standard Time and Friday 08:00hrs, special guests on the show, give a short insight into their lives, perspectives and adventures as People Living With Parkinson's or people associated with Parkinson's i.e. health professionals, PD organisations CEO's, researchers, Professors. Would you like to be a special guest on my show? Send me a message or email.

I like many styles of music, anything and everything from Soul, Alternative, Reggae, Rock, Blues, Jazz, Indie Folk Music and present the shows with different themes. Previous themes have been: Family's of Music, Show Tunes, Reconciliation Week, One Hit Wonders, UK music of the 70's...

News of Parkinson's events local and global, information and chat

Join me this week for....

Wednesday 20:00hrs - 'Double Whammy Wednesday' and special guest Dave Morse.

Friday 08:00hrs - 'The H List' Songlist is all beginning with H or artists beginning with H.

Listen live  www.radionomy.com/en/radio-parkies

Contact me djmadonna.radioparkies@gmail.com

Let Your Voice Be Heard