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/