I am still living ok well! Read my speach at Parkinsons eve 2019. I hope to be the last generation with out a cure. My voice works for young onset YOPD. We have to changes the mindset worldwide. PD is not only a oldmen’s disease where you shake, it’s all ages voman and men.
Grab everything in life you can –because life is one big grand adventure!
Elisabeth Ildal, DJ, Ambassador & Blogger WPC2019 KYOTO, Advocate for Parkinson’s Movement, Captain at the campaign #unitedforparkinson’s, Founder of Cure4Parkinson, Speaker, Activist, Advocate EPDA at European Parliament.
Good day. My name is Elisabeth Ildal and I’m from Denmark.
I’m so pleased to be here. Thank you for inviting me. It’s such a great honor.
First, I want thank Omotola my new friend and also Andy Butler.
Without you Andy, I would not be standing here today.
I am so lucky to have found you at the WPC Portland in 2016 and you will always be my life-long friend.
I have been thinking a lot about today’s speech. What to say and how to say it. Most of you here today know a great deal more about Parkinson’s than I do.
So, I decided to start by telling a story. What’s the difference between organizing a summer camp of table tennis for young people and a summer camp for people with Parkinson’s?
For many years, I was a table tennis coach in Denmark.
I worked with young athletes from around the country.
Flash forward to 2018, and I decided to invite my fellow DJs from RADIOPARKIES to a camp at my summerhouse on the Danish Island Bornholm, also known as the SUNSHINE ISLAND
For those of you who don’t know, Radio Parkies is a network of DJ’s throughout the world who share stories, information, and great music for the PD community. Our tagline for Radio Parkies is that it’s the only radio powered by people with Parkinson’s.
From the start, several people told me, that my summer camp for the Parkinson’s community would be a disaster. They told me that it would be a huge failure and that I was crazy to attempt to try and organize this summercamp.
We were nine friends with Parkinson’s, plus a sister, and ONE teeny tiny bathroom in a small facility in Bornholm.
I mean really, WHAT COULD GO WRONG? However, I have always been a person who liked to look at possibilities rather than limitations.
I understood that my DJ friends were from around the world.
I understood that Parkinson’s affected us all and that we each had our own individual flavor of language, musical taste, athletic ability, family history and PD symptoms.
For many people, the symptoms of Parkinson’s can’t be seen at all.
I can tell you that many people consider Parkinson’s to be a forgotten and invisible disease.
But I’m here to tell you that I WILL NOT FORGET.AND I WILL NOT FORGET YOU.
I am not a researcher, a neurologist, or physical therapist.
But I do live with Parkinson’s 24/7, as many of you do.
So I can try to tell you how I see it. I can share how I feel and how I live with PD.
I will start with some clinical facts:
-202 years have passed since Parkinson’s was first diagnosed and given a name.
-52 years have passed since Mr. Harrison in New York got levodopa for the first time in a clinical trial.
-202 years have passed without a cure.
-52 years have passed with levodopa as a treatment regimen.
-202 years have passed and the World still believes that Parkinson’s is an old man’s disease where people shake.
• Until I was diagnosed six years, ago, that’s what I thought too!
• -Today in 2019, there still is no cure. But I can tell you that it’s is better to have Parkinson’s today than 20 years ago.
• -10 million people around the world are affected.
• -There is a huge gap in healthcare quality in treatment for PD around the world
• -More neurologists are needed.
• -Parkinson’s is not just a disease that affects older people. Parkinson’s affects people of all ages, and more than 5% are very young people.
• Here’s the mystery of Parkinson’s for many people.
• The symptoms are different for every single individual.
• -It’s about much more than shaking.
• -PD can create a whole range of symptoms.
• Symptoms range from difficulty with swallowing, speech issues, blunted senses, slowed movements, cramps, bladder challenges, stiffness, pain, and depression, and sleeping problems.
• And , of course, there are many side effects from the medications as well.
• As a community, we have to stand united to make the leaders of the world – the politicians, the decision makers, the medical community understand that it is so much more than just an old man’s shaking disease.
• We have to make plans now!
• In Europe, The European Union plans to budget 800 billion Euros for brain research.• However, Parkinson’s research was only allocated four million Euros.
• That’s just a drop in the bucket and more research needs to be done.
• However, in the meantime, those of us who are affected by Parkinson’s are waiting for a cure.
• But I’m here to tell you that there is hope.
• You do not die from Parkinson’s, but you can live a really good life with Parkinson’s one day at a time.
• In my opinion, it’s about choosing the quality of life you want to have.
• For many of us in the PD community, we get the biggest bang for our buck by participating in physical exercise every single day.
• Now, is NOT the time to slow down.• Now is the time for you to increase your physical activity• and kick it into high gear.
• So, let’s “borrow” some of all the money for research and allocate this money for quality of life and physical therapy. Quality of Life education needs to be equally important as finding a cure.
• Here’s another point I want to share with you.
• The People in the Parkinson’s community is a powerful family that you can join right now.
• The PWP community can help you to understand you how to deal with PD and, most importantly, can make you understand, that you are NOT alone.
• The PWP community also has an obligation not to be victims but to be advocates or aktivists.
• As a community, we need to educate more neurologists, physical therapists and speech therapists with unique knowledge and experience.
• After all, we are the ones that are living with the symptoms every single day!
• Additionally, there is also big questions about alternative medicine, medication side effects, cannabis oil, and all the things that you cannot see.
• We need more PWP communities, like this event in Leicester
• Why? Because PwP are often quite lonely.
• Here are some facts about loneliness.
– Every fourth elderly feels lonely, but often in different and unique ways.
– Loneliness is not a question of age.
– Older adults have an increased risk of loneliness.- Loneliness among older families occur both in countryside as in the city.
– Lonely people would like to be part of the community, • but often don’t know how to engage.
– Lonely people often have difficulty getting away to travel outside their community.
• Now, back to Bornholm, my little sunshine island in Denmark.
• After a brief ride on my bicycle, I arrived back at the house. I came to the conclusion that we, as a community, can and must move from loneliness to togetherness.
• All we need is a gentle push.• For 10 days last summer we played, slept, snored, waited in line for the teeny tiny bathroom.
• We went on a trip to Denmark’s largest waterfall in Døndalen and ALL of us walked our way through the woods.
• It was supercool.
• We even rented bikes.
• Can you imagine four people with Parkinson’s’ riding bikes together?
• I mean, really, what could go wrong?
• But I have to tell you, it was hilarious and we had the best time ever.
• One person fell off the bike. Some got temporarily lost. One person had a flat tire.
• But we went everywhere together and we eventually went to Hammer Harbor, Hammershus, and Vang.
• We had parties. We heard Siggi Bjørns sing in concert – twice. We bathed and swam in the Baltic Sea. We painted and got nice and bronze in the summer sun.
• Our hair was messy but it didn’t matter.
• We talked until the wee hours of the night. We laughed, hugged and ate good food together with local wine and beer.
Then on July 24th 2018, everything culminated in the best event of all.
• Our friends, Chrissy and Andre got married right on the beach. I was so proud of that day. It was a great honor to marry good friends right there at my favorite beach in the world.
• It was a fantastic wedding with singing from Joe D’urso and tunes from his beautiful guitar.
• There was media coverage from both TV and newspaper reporters.
• WOO HOO for a romantic, fun and cozy wedding.
• Congratulations once again to Chrissy and Andre! Two PWP, who I adore, surrounded by friends.• But all good things must eventually come to an end. • We had to close down the house, and leave the amazing sunshine and blue skies of Borholm.
• We all had to get back to our normal life. The two fantastic girls from Australia followed me back to Copenhagen. Our folks, departed on international flights over the next few days.
• Why am I telling this story?
• I am telling this because we all have to participants in life, especially as persons with PD – because being ill with a chronical disease is a big sorrow – you have to ask yourself a simple question:
• “Which positive experiences are you going to choose today?”
• With Parkinson’s, we know that it will come to an end someday. But, it’s going to come to an end for everyone, yes?
• To be perfectly candid, I know my Parkinson’s is not getting better.
• But I’m not going to let that stop me from living my life• as fully as possible!
• Sometimes I feel like I’m driving around in a roundabout while, just waiting to figure out, which one of the exits is the right one to take.
• There is an old Danish saying that goes like this.• ”Gamle nyheder på nye flasker”
• In English, it means, we are just putting old wine into new bottles.
• The phrase basically translates into the fact that some problems are not being going to be solved by using the same thinking over and over.
• For the Parksinson’s community, sometimes it seems that old solutions are just being dusted off, and presented again and again as new.
• But while there is no cure in sight in the near future, I hope in my time but if not, I hope I will be the last generations without a cure.
• Here’s why.
• To be perfectly honest, PD still presents some big challenges in my life.
• Early on, after my diagnosis, I wanted to hide in a closet.
• But today, I have stepped OUT of the closet, best I ever have done for a long time.!
• I read somewhere that from the time of diagnosis of PD you have 15 years left of your life.
• This is total BULLSHIT! To write.
• I actually feel happy most of the time! I’m busy living my life. I often feel like I am participating in a big party with new friends from around the world.
• I get around; I meet new people. I exercise and I live in the present, just one day at a time.
• There is no treatment that will cure us 100 % and believe me, I hate Parkinson’s.
• But I have learned it’s better to love my PD rather than to hate it. I have decided to get on with my life in the most positive way I can.
• After all, you only have one life to live!
• Make the most of it!
• And so my friends . . .
• Go out and make new friends!
• Go out and travel and perhaps connect with me in Kyoto, Japan!
• Go out and ride a bike, dance or sing songs with your friends!
• None of us are an appendix to Parkinson’s – Parkinson’s is an appendix to us.
• I try to live my life with this simple message in mind.
I have Parkinson’s but I’m NOT ALONE
My PWP family is big and loving.
As a member of the PWP community, WE NEED TO do the following
We need to ….
1. Strengthen our network 2. Learn something new 3. Take part in life every day 4. Live in the present.5. Give of yourself and help your neighbor.
In my home country of Demark, approximately 7.500 are affected with PD. Together we have to shout a lot louder and become advocates for Parkinson’s research.
Amongst all this talking, writing and waiting, the big question is how to get the best quality of life for the rest of our days. I think it’s about doing the things you’ve always done, as well as creating new challenges for yourself.. It’s about connecting your new Parkinson’s life with your future life in meaningful ways. For me, I have the life I’ve always had. Its now just SPICED UP A BIT, with my new Parkinson’s life.
I have to admit; it wasn’t always so for me. Sometimes I don’t share my Parkinson’s life with everyone. If I’m working on an important task, I don’t always tell everyone. The important thing to always remember is that, it’s always your choice to share or not to share with others.
I love my PWP family.
It’s a rare and beautiful thing to be with others in the same boat as you. In the Parkinson’s’ community, you don’t have to explain.
Others know exactly how you are, how to do, what to say or more often, WHAT NOT TO SAY.
Life with Parkinson’s is not a journey towards the grave, where you must be safe in a
nice and well-preserved body, you must come across the milling side,
for full power, completely used up, total worn down while shouting
loudly: “Wauw, what a Tour”.
DON’T LET THE BASTARD TAKE YOU DOWN!(SAY THIS WITH British English ACCENT)
One last message for all of you
Grab life for everything you can. It’s a grand tour!
Thank you very much for your time..
Elisabeth Ildal - Lokalpolitiker, AMBASSADØR & BLOGGER for The World Parkison Coalition 5th World Parkinson Congress Kyoto (WPC2019),Virksomhedsejer, Jurist, Foredragsholder, Coach, #Radioparkies, #Cure4Parkinson, #EPDA, #ParkinsonsM, #unitedforparkinsons - et godt mix!