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/

_ _ 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

World Parkinson's Awareness Day #UniteForParkinsons

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

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

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

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

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

Why is WPAD important? 

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

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

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

https://www.worldparkinsonsday.com/

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. 

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/

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.

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?