Dig it up

 How does your garden grow?

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

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

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

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

Excited learning about new things.

What will we grow?

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

Kindness Rocks!

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

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

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

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

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

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

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

Kindness Rocks! It is a thing!

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

Like DJ Madonna's Radio Show Facebook page

Lorraine Wilson

Painted by  Lorraine Wilson.

Carol Clupny and Charlie on the Tandem

DJ Madonna's Fairy Garden 

              

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


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

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

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

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

It is, what it is.

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

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

How often will I write my blog? 

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

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

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

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

This will not be explained away with a nice ending. 

It is what it is. 

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

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

Hello is there anybody in there?

Hello,  is there anybody in there?

Just nod if you can hear me...

A knock at the door.

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

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

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

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


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

_ _ it just got real     Why? Read on                                                    

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

Be Master of your own ship.

Some things I have found:

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

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

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

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

We need choice

Introducing: Parkinson’s Fighters United Inc.

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

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

Where did this idea come from?

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

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

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

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

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

Visit www.riggare.se

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

-Thierry Henry

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

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

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

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

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

World Parkinson's Awareness Day #UniteForParkinsons

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

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

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

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

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

Why is WPAD important? 

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

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

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

https://www.worldparkinsonsday.com/