Welcome to my podcast "Now more than ever - Living positively with Parkinson's disease."

My name is Kathrin Wersing and today I am sharing with you another short episode with impressions from the World Parkinson's Congress. The Congress took place in Barcelona from 4-7 July this year. The four days in Barcelona were colourful, diverse, loud and lively but most of all they were a wonderful opportunity to meet people I knew so far only from online meetings and social media. I was especially looking forward to meeting Hannington Kabugo, a truely inspiring man from Uganda.

Unfortunately, my audio recordings from the WPC turned out very poorly and so I have been struggling for a long time whether to publish more episodes from the conference or not. But now I've finally decided that I'm just going to put up with this poor sound quality because I really wanted to give you an update on Hannington's story.

Hannington Kabugo from Uganda was a guest on my podcast in April 2022, if you haven't heard that episode I absolutely recommend you listen to it.

Here you can find the episode on spotify:

https://open.spotify.com/episode/6uj8uJptnFSWHmGDy7K1yI?si=PWLe9AAkQEihONGw0u1eAw

Hannington is a person who shows that no matter how hopeless a situation seems, we always have the power to make changes for the better. Hannington's mother had Parkinson's disease. In Uganda, one of the poorest countries in the world, the disease was long considered a curse. Anyone who had Parkinson's symptoms was considered bewitched, they were treated like outcasts and no one was allowed to even come close to these people because Parkinson's was believed to be contagious. Hannington experienced his mother's suffering first hand and after her death decided that never again should a person with Parkinson's suffer so much in Uganda. He founded Parkinson's si Buko, an organisation that today ensures that villages and communities in Uganda are educated about the true background of Parkinson's. With the help of supporters in the USA, Hannington has been able to make an incredible difference. This great commitment was recognised at the World Parkinson's Congress, where Hannington received a very special award.

Links to this episode:

• Homepage of the partner organization in the USA: https://parkinsonssibuko.org/ There you can also find a direct link to donate via PayPal in favor of Parkinson's si Buko USA. All employees work on a voluntary basis and all donations go directly to Uganda.

• Contact Hannington Kabugo

  • via facebook: https://www.facebook.com/kabugo.hannington.330

  • via E-Mail: hannyug@hotmail.com

• Information about Parkinson's Africa: https://www.parkinsonsafrica.org/

Thank you very much for your donation and support

I look forward to your feedback on this podcast episode. Feel free to write to me: kontakt@jetzt-erst-recht.info

Welcome to my podcast “Jetzt erst recht – Positiv leben mit Parkinson”. My name is Kathrin Wersing, I am 44 years old and I live in Germany. 4 years ago I was diagnosed with Parkinson’s myself. One year later I started this podcast which is about life-affirming positive inspirations from people living with Parkinson’s disease. II am convinced that – no matter if we live with Parkinson’s or not – WE are in control of our own lives and that the way we look into the future has a huge impact on our own quality of life.

A few weeks ago in July, I visited the World Parkinson’s Congress in Barcelona. Those 4 days in Barcelona were not only hot in terms of temperature, but also hot in terms of topics. But what was most important for me during these days: to absorb the spirit of this event. There were so many interesting, committed and absolutely impressive people related to Parkinson’s gathered in one place, as I have never experienced before. More than 2600 people from 73 countries, including over 900 doctors and therapists, 450 people from the caring and therapeutic professions, 685 people with Parkinson’s and 260 relatives.

During those days in Barcelona, I had many conversations, I took a lot of photos and audio recordings. Finally, I was faced with the overwhelming task of how to pack all this into just ONE podcast episode. So I decided to publish several short episodes with people and topics that touched ME the most at this World Parkinson’s Congress. Today I’ll start with an interview with a unique man whom I had the pleasure of meeting again at the World Parkinson’s Congress: Nenad Bach is not only a wonderful musician and composer but also the founder of the worldwide movement PingPongParkinson, which has spread like wildfire from NewYork all over the world since 2017. The idea of PingPongParkinson is quite simple: People with Parkinson’s play table tennis together in regional sports clubs in their hometown. The sport helps those affected to stay active in social life and to delay the progression of the Parkinson‘s. I experienced it myself: PingPongParkinson helps a lot of people to improve their quality of life. Nenad Bach is a man of many talents – but above all he is a visionary and an inspiring peace activist. In this interview, he tells us what keeps him moving regarding PingPongParkinson and what table tennis and peace have in common.

Links to this episode:

• Link to Nenad Bachs artice “World peace in 1 hour” in the united Nations Chronicle https://www.un.org/en/un-chronicle/world-peace-one-hour

• Link to PingPingParkinson worldwide: https://www.pingpongparkinson.org/

• Link to PingPongParkinson Germany: https://www.pingpongparkinson.de/

I appreciate your feedback on this podcast episode. Feel free to send me an email: kontakt@jetzt-erst-recht.info

Hello and welcome to my podcast. My name is Kathrin Wersing and I live in Germany. Two and a half years ago I started this podcast after I was diagnosed with Parkinson’s. I wanted to find out how to live a positive and inspiring life despite the disease. Most of my interviews so far were in German language but last year I also started talking to people from all over the world in English. In my special series Parkinson’s around the world I want to continue to find out how parkinson’s is seen and treated in other countries.

My guest today is Annelien Oosterbaan from the Netherlands. She was diagnosed at the age of 33. As a mother of 3 children, she was just about to start her career as a doctor when the diagnosis hit her cold. But Annelien is an impressive fighter and in the last 5 years she has not only thrown herself into Parkinson’s research with great enthusiasm but has also had a fourth child. I can promise you, this woman will impress you! I hope you enjoy this interview!

Links to this episode:

• Article in the Journal for Movement Disorders 2022 Subramanian “Unmet needs of women living with Parkinson’ disease. Gaps and controversies.”

• Website for the women’s survey, Michael J. Fox Foundation: https://foxinsight.michaeljfox.org

• The pregnancy registry https://www.pregspark.com/ (The links doesn’t work until the expected kick off medio 2023)

• Advice to register: https://www.mymovesmatter.com/

• Get in touch with Annelien:

  • Twitter: @pdwomen_nl  / @OosterbaanA

  • Instagram: @annelienoosterbaan

• Sponsor link to support Annelien’s research: https://radboudumc.voorradboudfonds.nl/project/vrouw-en-parkinson

I appreciate your feedback on this podcast episode. Feel free to send me an email: kontakt@jetzt-erst-recht.info

Welcome to my podcast. My name is Kathrin Wersing and I live in Germany. I started this podcast over 2 years ago because I was looking for people who live a positive life despite having Parkinson’s disease. When I was diagnosed with Parkinson’s at the age of 40, I read and heard only frightening stories everywhere. I was determined to change that. Today I know that there are so many wonderful people out there who live exciting and inspiring lives despite PD. One of them is Nigel Smith from England. Nigel is a poet, he is one of the founders of poets with Parkinson’s. We talk about many topics in this interview. Nigel has gone through particlarly rough times in recent years which he talks about honestly. But his story is also about how writing poetry has brought him back to life and how important it is that we recognise our own worth and value. However there is also a lot of humour and laughter in our conversation. So you see, there is lots to say about Nigel, but he tells us better in his own voice, which by the way is really beautiful storyteller’s voice. So I hope you’ll enjoy this interview.

Links to this episode:

• Homepage poets wall: https://www.poetswall.com/

• YouTube channel: https://www.youtube.com/@TheWall-PoetswithParkinsons111

• Get in touch with Nigel: nigel@poetswithparkinsons.com

• Invitation to online “poets with Parkinson’s” events:

  • “Away in La La Land” – A 30 min Rock n Rhyme True Tale: https://www.poetswall.com/event-details-registration/away-in-la-la-land-a-30-min-rock-n-rhyme-true-tale

  • First ever GERMAN Open Mic Poetry: https://www.poetswall.com/event-details-registration/1-poesie-trifft-parkinson-abend-first-ever-german-open-mic-poetry

I appreciate your feedback on this podcast episode.

Feel free to send me an email: kontakt@jetzt-erst-recht.info

Welcome to my podcast which I started 2 years ago because I was diagnosed with Parkinson’s at the age of 40. Since then I have been looking out for people with positive stories. Isn’t it strange that we remember negative stories easily while positive ones seem hard to find? But actually there are so many encouraging and positive stories out there that show us how people cope with life despite Parkinson’s. And these wonderful stories I did not only find in German speaking countries but also in many other places around theworld. Today in my special series “Parkinson’s around the world“ I virtually traveled to Denmark  and met Elisabeth Ildal. You’ll hear it right away – we had an incredible amount of fun during our interview and laughed a lot, but we also focused on serious facts of Parkinson’s. Elisabeth has been living with PD for almost 10 years and has overcome many challenges during that time. In the beginning she hid the disease from nearly everyone but later she spoke frankly from one day to the next and since then she has been tirelessly involved in helping people with Parkinson’s. She is a courageous, strong but above all fun-loving woman and I am very happy that I can share her story with you today. Our English is colorful and not perfect but that’s how I think life should be! I hope you enjoy this interview.

If you want to learn more about Elisabeths numerous activities have a look at the following links:

• https://www.ittffoundation.org/news/details/if-you-can-dream-it-you-can-do-it-elisabeth-ildal

• https://www.tv2bornholm.dk/artikel/parkinsonpatienter-spiller-bordtennis-paa-bornholm

• https://www.youtube.com/watch?v=U25VRK7X-fM

• https://tv2bornholm.dk/artikel/bordtennis-hjaelper-paa-parkinsons-sygdom

• https://www.youtube.com/watch?v=zIjcoMgjqs4

• https://www.youtube.com/watch?v=GeWE0oJjT9w

• https://www.youtube.com/watch?v=6Qda0Z9JLXA

• https://www.youtube.com/watch?v=0dg7ioNzC_U&list=PL5L2xv6Yv4xV2Fqxd6-I08A45HhksRFV1

• https://www.youtube.com/watch?v=_FYrf1LRXwo&list=PL5L2xv6Yv4xV2Fqxd6-I08A45HhksRFV1&index=2

• https://www.youtube.com/watch?v=cBqv5t5hPrc&list=PL5L2xv6Yv4xV2Fqxd6-I08A45HhksRFV1&index=4

• https://www.youtube.com/watch?v=ooUTFtYkAls&list=PL5L2xv6Yv4xV2Fqxd6-I08A45HhksRFV1&index=7

• https://www.youtube.com/watch?v=DpjDQe0Fs9A

Welcome to my podcast. My name is Kathrin Wersing, I am 43 years old and I live in Germany. I started this podcast nearly 2 years ago because I was diagnosed with Parkinson’s and since then I have been collecting stories of people with PD who manage to live their life in a positive way and also stories of people who help those living with the disease. After I was able to talk to 40 inspiring people from Germany, Austria and Switzerland last year, my focus this year is on how Parkinson’s is seen and treated in other countries around the world. Though Parkinson’s is a serious disease and we all know the challenges, worries and fears on bad days, each of us also has strategies, resources, and helpful thoughts that we can pass on to others as a way to help. In my “Parkinson’s around the world” series, I’ve already spoken with people from Iceland and Uganda. Today, I’m traveling to the U.S. to meet Margie Alley, a great and inspiring woman who I had the pleasure to meet in person at a table tennis tournament in Germany a year ago.  So I hope you enjoy this interview.

Links to this episode:

• Margie’s documentary GOTTA KEEP MOVING: https://www.youtube.com/watch?v=sYFMarC6tHc

• PingPongParkinson USA: https://www.pingpongparkinson.org/

I appreciate your feedback on this podcast episode. Feel free to write to me: kontakt@jetzt-erst-recht.info

Welcome to my podcast which is about living positively with Parkinson‘s disease. My name is Kathrin Wersing, I live in Germany and I started this podcast about 2 years ago because I was diagnosed with Parkinson’s disease at the age of 40 and I was looking for positive stories about PD. In my podcast I talk to experts: people who actually live with PD and their family members. I started with 50 inspiring people in Germany, Austria and Switzerland. This year, I am happy to welcome guests from all over the world to my podcast, so there are now some episodes in English language as well. And this is one of them! For today’s podcast interview, I virtually traveled to Canada and met the wonderful Larry Gifford. Larry is a professional talk radio director, passionate podcaster, and dedicated advocate for people with Parkinson’s. But most of all, he is a wonderful person with a lot of charm, humor and a big heart. So join me and meet Larry Gifford. I promise you won’t forget this interview!

Links to this episode:

• Website PD Avengers: https://www.pdavengers.com/

• Larrys Podcast “When life gives your Parkinson’s”: https://podcasts.apple.com/us/podcast/when-life-gives-you-parkinsons/id1404983468

• Film “The long road to hope”: https://www.youtube.com/watch?v=A6tbHSPTEUM

• World-Parkinson-Congress:

  • Main Website: https://wpc2023.org/

  • Information about travel grants: https://wpc2023.org/page/TravelGrants

• Book “Ending Parkinson’s disease”: https://www.amazon.com/Ending-Parkinsons-Disease-Prescription-Action/dp/1541724526

I appreciate your feedback on this podcast episode. Feel free to write to me: kontakt@jetzt-erst-recht.info

Welcome to a new special episode of "Parkinson's around the world". In this series, my focus is on how Parkinson's is seen and treated in other countries around the world. This episode, I have to be honest, has touched me the most of all so far: Imagine you have Parkinson's, imagine you live in one of the poorest countries on earth, imagine people around you think you are jinxed if you have Parkinson's and they dare not go near you and banish you. I met Hannington Kabugo from Uganda. He told me the story of his mother, who had Parkinson's disease. Her painful fate led Hannington to found an organization in Uganda that cares for people with Parkinson's disease. Travel with me to Uganda in this podcast and meet a truly remarkable man.

Links to this episode:

• Homepage of Sherryl Klinglhofer's partner organization in the USA: https://parkinsonssibuko.org/ There you can also find a direct link to donate via PayPal in favor of Parkinson's si Buko USA. All employees work on a voluntary basis and all donations go directly to Uganda.

• Contact Hannington Kabugo

  • via facebook: https://www.facebook.com/kabugo.hannington.330

  • via E-Mail: hannyug@hotmail.com

Thank you very much for your donation and support