Young Parkinson’s – Branch Update – Jan to July 2020

Hello Member,

I hope you are keeping well during these strange times. We are all now trying to get accustomed to these changes by keeping active and staying positive. We did not think back in January that our plans for the year could suddenly be cancelled at such short notice. However, we are continuously trying new concepts to keep people connected and to try and stay positive while adhering to the restrictions. We are also continuing to advocate to acquire better services for people living with Parkinson’s in Ireland.

We would now like to update you on some of the things we have done this year to date and what was originally planned, but hopefully will be rescheduled for a later date.

January
In early January we created a colored leaflet about YPI for distribution to Health Professionals and Pharmacies around Ireland. This was sent to them so they could let young people living with Parkinson’s in Ireland know that YPI are here to offer support and information from people who understand.

We organised an Insight event in Galway, where Dr Leo Quinlan spoke about the development of a device to help manage freezing (FOG). Also presenting was Dr Eilis Dowd who explained the developments of Cell therapies for Parkinson’s. We then heard from Neurologist, Dr Tim Counihan about genetics and Parkinson’s. This was very informative evening and it was well attended by our members.

We exhibited at the Wexford Volunteer Expo to highlight YOPD and YPI. It was a well organised event and it was good to connect with other organisations that have services that could be of benefit to our members.

February
We had a walked planned in Glendalough for 9th but due to high winds it had to be cancelled.

On the 12th we were delighted that RTE’s Nationwide programme featured Rock Steady Boxing to show the great benefits people in New Ross were getting from this class. It also showed that Parkinson’s affects younger people. It seemed to reach so many as the response was overwhelming and we were thankful to Helen McInerney and the Nationwide team for the work put into this programme. In particular the way the hours of footage were edited so well to get our message across. They also were great to put all those involved at ease on the day of filming.

Due to the response from Nationwide we had set up classes in extra locations. Before the restrictions came into place, we had RSB classes running in New Ross, Naas, Tullamore, Portlaoise and Kilkenny. This covered many counties and due to the benefits, some participants travelled over an hour to attend this class. Now available to view on our website.

We had our AGM on the 15th February which included excellent presentations from Shane Breslin on DSB, Richelle Flanagan on Diet and Joe Condon on exercise for Parkinson’s. These were recorded for viewing by those who could not attend on the day.

March
We had our first committee meeting outside Dublin which was held in Cork on the 11th and was followed by a social chat with Cork YPI members. This was our last get together before restrictions came into place. There had been other socials held in Wexford, Dublin and Limerick before this date. The regular Cork YPI monthly Wednesday social went online using Zoom.

On the 20th March we started Rock Steady Boxing classes on Zoom, scheduling three times per week. This has been great to keep people exercising and connected with others by having a chat before and after class. This also resulted in coffee mornings, topic discussion nights and a show casing people’s talent of art and crafts etc.

We were disappointed to have to cancel the training camp for coaches the end of March. This was to be facilitated by Rock Steady Boxing team USA to bring this excellent exercise programme to other parts of Ireland. However, we will continue to work on this project to achieve this in the future.

April
Our committee compiled a video for Parkinson’s awareness week to show how PD can affect people and how they are managing this condition. It really showed how diverse the symptoms of PD can be but exercise and staying positive helps.

We also launched the 5 for 5 for Parkinson’s fundraiser which started off as a homework exercise in Rock Steady. It has received great attention and raised a lot of funds. It is a bit of fun and you can still try it! See our Facebook page for details where you will see our committee member Ian giving a great demonstration.

May
We were delighted to have head coach Kristy from HQ RSB Indianapolis join our class online one morning (5.30 am USA) to see the great work our coach Mirek has been doing and how well he adapted RSB to online classes at very short notice. Kristy stayed on to have a long chat afterwards and gave the history of RSB. She messaged to let us know that they used some of Mirek’s exercises for hands in their class at HQ!!

June
On the 27th the yearly fundraiser Sunrise up Croagh Patrick for neurological conditions took place virtually this year. Our Chairperson, Joe Condon completed this 28K walk. Great achievement Joe. This raised close to €20,000 for the three charities.

July
We had our first all-Ireland YPI social chat on Zoom and it was so nice to see people from all around the country come together and especially good to see new people join us. We had a number of break out rooms so people got the chance to talk in smaller groups. You are very welcome to join us on our next Zoom chat.

We had a walk on Sunday the 26th at Castlecomer Discovery Park, Co. Kilkenny for a chance for people to meet up while adhering to social distancing.

We also had a soccer team ready to take part in the Cure Parkinson’s Cup which was to take place the weekend of the first YOPD conference in Leicester, UK. This was scheduled for April and many of our members were looking forward to this event which I am sure would have been very informative.

I hope this gives you an idea of what YPI are trying to do to help our members. We feel we need to highlight young onset to bring more awareness so that people are aware it is not just an older person’s condition.

We want to let those living with Young Onset Parkinson’s in Ireland know that YPI is here for them so they don’t feel isolated and they have the support of others. We now have members on our committee from all parts of Ireland who will gladly connect with you in your area, they organise coffee mornings etc. to bring people together.

We always welcome suggestions, so please get in touch. We have set up a messenger link on our public Facebook page which you may find this a quick an easy way to get in touch and we look forward to hearing from you soon.

I hope you and your families stay safe and well.

Yours sincerely

Mary Casserly
Chairperson
Young Parkinson’s Ireland
Tel: 01-2544410

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