By: Elisabeth Ildal, DJ Radiopakies, Ambassador & Blogger WPC2019 KYOTO, Advocate Parkinson’s Movement, Founder of Cure4Parkinson.
It is true that there is a difference in the organization of table tennis camp for youth, which I have held a lot of through the years and a summer camp for people with Parkinson’s disease. Yes it is true!
The inspiration to hold a summer camp for DJ’s on RADIOPARKIES, comes from in my work as a table tennis coach for many years and founder of Tabletennisclub Vedbæk.
From the start, I did not think there could be obstacles, but several informed me in the planning process, that it would be a big time failure and I was not very smart. Nine Parkinson-affected, yes nine plus one sister in a summerhouse on Bornholm with one bathroom.
I always see possibilities beyond limitations and a bathroom was not a challenge, it actually went completely by itself.
In the web-based Radio Parkies we are aprox. 27 DJs distributed around the world. We are all affected by Parkinson’s, with each taste of our music, history and symptoms. For many of us, many symptoms that cannot be seen. One can say that Parkinson’s is the forgotten and invisible disease that looks to doubles worldwide over the next 10-15 years. Surveys.
Some shake a little, some do not shake, and some are stiff, not by alcohol,but stiff in the muscles. Others have difficulty thinking, concentrate and sleeping. A lot of people have blatter problems, others have cramps in the feet, legs and other muscles. Others again have extra movement as a side effect to the medicine we all take. Medicine developed in 1967, yes 1967. Like driving around in a roundabout, science talks and writes, talks and writes all old wine on new bottles, while we taste the medicine.
Nevertheless, I believe we might be the last generation without healing.
All in while talking and writing, the big question is how to get the best quality of life for the rest of our lives. It will not go away and there is no cur. So while waiting for something that cn stop the progression in a 200 year old disease. Try to think, the hiv and Aids in the 80, new disease, quickly a medicin which could stop the progression. Maybe way to go, but it is all about money. So I have decide to get the best out of the life I have been given… On life!
I think it’s about doing the things you’ve always done, as well as serious training every day. It’s about connecting the new Parkinson’s life to the lasting life. Personally, I have the life I’ve always had, now spicy with my Parkinson’s life. I share my Parkinson’s life sometimes to the life I’ve always had, sometimes not. Love to be with you all.
That was the background of my invitation to a summer camp on Bornholm, only for Parkinson-affected Dj’s, focusing on presence, music, cycling, swimming, sewing and painting, cooking, and just being together as good friends. In fact, a large family that fits each other.
I sometimes think it’s rarest to be with others in the same boat. You do not have to explain, the others know exactly how to do it.
On July 17th, a day of mild raindrops, the first rain was much needed. I drove excitedly and well to Kastrup to pick up Vilborg and Joi from Iceland. They were out fast and while we were waiting for the flight from Rome and DJ Madonna and Kathleen, we drank a glass of freshly squeezed juice. “The Aussies” arrived 45 minutes later, Madonna and Kathleen via Rome where they spent two weeks travelling and practicing yoga.
Refurbishing the car with now five suitcases, 5 people, curves and duvets became a horror. After a couple of tries, it was possible to close the doors. Departure was via Sweden to Bornholm Ferry in Ystad. A little room, but loud mood.
Finally on the island in the south we ended directly in Snogebæk at Sørens Værtshus for good music, pizza and drinks.
Wednesday, everyone was happy to reorganize furniture etc. Beds were split up, air mattresses were breathing and room divider established.
On the first floor Madonna, Kathleen, Joi, Rita, Pete, Vilborg and myself.
Downstairs in the wedding room Chrissy and Andre and Danny in his own room too. We went shopping, Woo hello! A lot of provisions needed for 10 persons.
In the summer on Bornholm In the Baltic Sea, Icelandic is Siggi Bjørns, so we went to the Baltic Sea in high sun oh blue sky. Woo Hoo for a party, Siggi sings, everyone sings and man “banger” on the tables, stands on tables and chairs, what a party. Siggi and our Joi have grown up in same town in Iceland, the joy of rejoicing high.
At 23 o’clock we drove to Rønne to get to car # 2. In the dark we found Poulsker. Finally, we were all together, hugged, kissed, laughed, so much love. The cool cool hangover around the long table that Joi had put together during the day.
In 10 days we have snowed, sitting in line for the bathroom, been on a trip to Denmark’s largest waterfall in Døndalen and ALL went all the way, super cool and top nice work from all. e have rented bikes, regular bikes,powerbikes and went 42 km one day. One fell off the bike; some got away, one punctured. We have been at Hammer Harbor, Hammershus, Vang. Hole island round. We have been partying, heard Siggi Bjørns twice. We have bathed and swim in the Baltic Sea. We have painted, sewn, messy, talked to late at night, laughed, hugged and eaten good food, out of home.
And on July 24th, we got the best of all, Chrissy and Andre joined together on the beach. I was proud that day, a great honor to marry good friends. Great wedding to song and music from Joe and his guitar, media coverage of both TV and newspaper. WOO HOO for a romantic, fun and cozy wedding. Congratulations Chrissy and Andre!!
On Friday, July 27, we left the island in the lake to fly to Kastrup.
All good things come to an end. We all have to get back to our normal life. Those two fantastic girls from Australia went home with me, are now on a plane home to Australia. Thanks for some wonderful and pretty exiting days in Copenhagen.
Thanks to you all for a fantastic RadioParkies Summer camp 2018, see you all next Year! We have a busy year coming up with LOD, New York Unity walk, Kyoto and summer camp 2019.
LEAD YOUR VOICE BE HEARD!
Thanks to Jean-Paul de Creamer, founder of radioparkies
http://www.WPC2019.org, here you find everything about 5th World Parkinson Congress, Kyoto, Japan. 4-7. June 2019. High level of scentific, people with pd, family, careperson, Companys in medicin, nurses, doctors, fysiotherapy, tabletennis, fun, videocompetition etc. In Denmark call Elisabeth Ildal 45 22 56 8282 or Elisabeth@ildal.com
wwww.JDCaravan.com, http://www.lightofdays.com, contact to Joe D’Urso for anything.