Sunday, 3 September 2017

_ _ 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; 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 4th 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.

Tuesday, 30 May 2017

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.

Sunday, 12 March 2017

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. 

Tuesday, 8 November 2016

Resilience NEVER goes out of style

My favourite cricketer, Australian Mitchell Johnson, is a man of style and character, and has just released  his book 'Resilient'.  Mitchell Johnson's story is one of talent, courage, determination and heart. All those qualities will see us through trials and tribulations, ups and downs, talking about the weirdness of this life helps to make things bearable. He is a former shy guy sharing  stories of inspiring people that have been a part of his life and sporting photos will accompany it. I really never cared for cricket before the Summer of 2013-2014  Ashes series in Australia when Johnson dominated against the English  team. 

Bethany Hamilton is an American professional surfer who survived a 2003 shark attack in which her left arm was bitten off, she has successfully returned to competitive surfing.  Hamilton wrote about the experience in the 2004 autobiography Soul Surfer: A true story of Faith, Family.... the feature film Soul Surfer was released in April 2011.

Nick Vujicic is an Australian motivational speaker born with phocomelia, a rare disorder characterised by the absence of legs and arms, he has overcome his disability to live a rich and fulfilling life.  Becoming a role model for anyone seeking true happiness, the book Life Without Limits, 2010 shares his amazing outlook.

What do these people have in common....  attitude and resilience and a lot of 'positive self talk' too.

I'm  DJMadonna  on the worldwide internet radio station for people with Parkinson's
Tonight the theme for my radio show is Americana, go to the above website and listen live at 20:00 
Australia Eastern Standard Time. Each Wednesday a different theme and a talk or an interview with someone with Parkinsons or associated with Pd, tonight my special guest is Roger Halleen, President of the Illinois chapter of APDA. It's the last of my interviews recorded at the recent World Parkinson Congress. 

I have had a break from writing here, if you want to catch some of the other radioshows' please check them out on.

Friday, 30 September 2016

Friendship is the hardest thing in the world to explain. It's not something you learn in school. But if you haven't learned the meaning of friendship, you haven't learned anything. - Muhammad Ali

Thanks Ali, that being said I can concentrate on the warm fuzzy feeling of meeting people for the first time that you may have been friends with on social media and then meeting them in real life. 
This happened at the World Parkinson Congress, Portland Oregon. It's akin to modern day pen friends. Let me explain.
The friendship with one friend, we will call AJ, really began in September 2013, we were on the same FB PD group, AJ was in Florida and I had just landed in New York, an Aussie on holiday with three daughters in a huge city on the way to the third WPC in Montreal. Alarm bells had began clanging before we left Australia  about that particular part of the trip, I'm a true believer in fate and giving things a chance, maybe it would be fine... It was not ideal. Intuitively AJ knew I was unsure of my situation there and reached out with advice and helpful suggestions regarding the subway, good things to do and anything else I wanted to know. How kind! Since then we have typed sporadically at best, but the thread of friendship was there. Zoom through to WPC in Portland and AJ was there in person! My friend AJ. We already know a lot about each other: family, love good music, value a laugh. Easy.
Another one comes to mind AH, we have been long distance friends since diagnosis of PD found us on the same FB group. Last Friday, AH found me at my poster display at the Portland WPC. Wow, we hit it off straight away, the basis of friendship was there, similar likes and ideas on music and stuff. We made loose arrangements to meet for dinner at Deschutes Brewery, a famous alehouse that we had tried to go to twice before...there was a lot to do before then. The Radioparkies Booth had to be dismantled and things divided up. 

The night of the Trifecta

Somehow managed to go to all three of these iconic places on our last night in Portland:
Deschute's Brewery an award winning craft brewery for dinner and drinks, then across the road to Powell's Books - The world's largest independent bookstore, over five levels of books! So many books, so little time, a joke book was needed and found. Voodoo Doughnuts - an avant guard independent doughnut shop that captures the kooky essence of Portland with unusual doughnuts, eclectic decor and iconic pink boxes. The pink boxes are constantly sighted around the city.

A whirlwind week, and by all accounts a very successful first venture by the DJ's and friends of radioparkies. Many connections made, interviews done, information shared photos taken. The huge winner is friendship and the feeling of understanding, camaraderie and compassion, the feeling  is immeasurable and for this I'm most thankful.

Saturday, 24 September 2016

Radioparkies and Portland Oregon WPC

Today is our last day in Portland, the World Parkinson's Congress closed yesterday. What a week it's been! The Radioparkies team worked together very well, and showed amazing  dedication and enthusiasm throughout the entire congress. It takes a village to support people living with Pd and the tribe was strong and on point. Lots of laughs and new connections have been made and the networking and socialising a highlight also. The vibe at the Portland Convention Centre was jovial and friendly, the feeling of support and community strong. Every person was interested in learning, sharing and also getting acquainted with old mates and meeting people in person, whom they may have corresponded with over many years.
Portland is an easy city to navigate through, the trams and buses are easy and plentiful, watch out though, the tram tracks can be treacherous.
My poster 40.04, called webradio station entertaining and informing PLWP,  went up on the Tuesday afternoon and we were flat chat at the Radioparkies booth and doing interviews until 3:30 Friday with social gatherings to attend every evening. So busy. So great!
So much to experience on the program, but would have needed a clone to do half of it. All of the sessions will be available on the WPC2016 app, this means everyone will be able to access the information. We managed to attend the Rock Steady Boxing session at the Renewal Room, it was fun, energetic and empowering. Many of the RSB coaches were in attendance as volunteers and the feeling in the room was powerful! Something like this will happen in Brisbane, my home town.
Everyone we talked to was very responsive to Radioparkies and the concept excited all. Interviews to look forward to from the WPC are: Glen Prestidge, Laura Hitchens, Steve Sant, Ken Lee, Roger Halleen, Nan Little, Becky Farley. More interviews will also happen now that everyone is heading home.
It was a terrific week, people who helped in any way are appreciated, when life returns to a regular pattern more stories will be forthcoming. I look forward to sharing the Night of the Trifecta, the missing pants and Keeping Portland Weird.

Here is my Friday radio show, the S List, recorded live in Portland Oregon, home of the 4th WPC 

Saturday, 17 September 2016


Being present and in the moment is an essential tool when it comes to living with Parkinson's disease and ordinary lives as well.  The realisation that now is the most important time is a true gift.  I believe that a diagnosis of a chronic degenerative disease is an event so life changing for the person diagnosed and the close family.  It is a difficult time, but also a time to embrace true feelings. Some people, friends and family, don't know what to say when they hear this news and so they say nothing. In the early stages most people say the parkinson symptoms can't be noticed. Most PWP testify that it all starts with a twitching of the finger. Personally not being as agile was and is still surprising to me, ordinary little things like putting things in bags, walking, getting out of a low chair all take on a new dimension. I feel awkward, and I know it can be hard to see me doing things that require dexterity. But I'm not giving up. Parkie friends have said that others have accused them of being drunk. Words can be slurred and walking a little wonky, it's the body taking on itself and too bad what the brain wants. So walk with us and give us time to respond, give us a minute more to get going. 

Mindfulness is a way of making the brain be still and concentrating on now and not projecting the mind to something unknown. This is certainly a good thing to learn about and practice, a friend is doing a course in it and needs guinea pigs. My arm shot up like someone with dystonia. 

The philosopher Eckhart Tolle has a lot to say about consciousness and talks about it in very easy terms. Dogs! Looking at a dog and into its eyes you can sense the dogs being and it enhances your ability to feel your own being, to enjoy what is happening now. The dog loves to see you, and experiences a lot of joy when you pat it and acknowledge its presence, it is so wonderful to be alive and so great to be with you. Isn't that a great response. Babies are similar, we don't pat them but we connect and make some communication with them, and you can feel your own being.

Recently I saw some ideas exchanged about Ego and Pride on social media. It started with someone saying that when diagnosed with Young Onset Pd that letting go of pride early will help immensely.
Sense of self was being referred to, not vanity and pride of appearance. 

The World Parkinson's Congress will see a lot of people who are Parkinson's proud and happy to be together to learn, support and have understanding. The glow of acceptance and the experience of meeting new people who understand will carry us forward. 
That why I love it's run by Parkies for Parkies and other cool people. All around the world we can connect this way through the forums, chat, live radio shows and more. It's not organisations telling us whats good for us, its just about being present.