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/

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

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/

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/

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

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. 

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"

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