Swindon Parkinson's Activity Group

 

Recent news

 

 

SHARONS LATEST FUNDRAISER - EASTER CUPCAKES & RAFFLE

COLLECTION ONLY.

Every box will have assorted flavours unless you ask for a specific flavour.

You may purchase more raffle tickets or just purchase raffle tickets if you don't eat cake but still want to support Sharon at £1 per strip. All donations are welcome.

Details here

 

Latest opportunities to take part in research

A study looking to better understand anxiety in Parkinson's

Looking for people with Parkinson's who experience anxiety, or their carers, to join a Zoom discussion.

Details here

 

Online survey for carers of people with Parkinson's

Researchers want to understand the needs of carers to help make a practical and engaging online journaling website.

Details here

 

A study for people recently diagnosed with Parkinson's

Investigating a potential new oral therapy called UCB0599 for people who have been diagnosed within the last 2 years and who aren't currently on medication.

Details here

 

Trialling a potential treatment for those who experience low mood

Researchers are looking for 408 people with Parkinson's to trial a treatment called Nortriptyline, to see if it could help with mood and slow down Parkinson's.

Details here

 

Understanding how people with Parkinson's use computers

Researchers need people with Parkinson's, who have access to a computer, to take part in some research to inform techniques to improve the ease of using computers.

Details here

 

IMPORTANT ANNOUNCEMENT

In order to comply with charity rules

Swindon and District PUK Branch will cease to exist as a branch.

This is because there are only four members on the committee and there is no chairperson. Our status as a group will change to become an ‘Activity Group’

 

The following activities are cancelled:

AGM in March, skittles in January, talk in February, and plans for April and May. There will be fewer social events as we do not have the volunteers to run them.

In 2019 the flourishing Swindon & District Branch was awarded the Queen’s Award for Voluntary Service (the highest award that can be given to a charity) thanks to Chairman Dave Logan and the existing committee of about 12 people. Each member had a specific job, some more onerous than others, but if it was needed, it got done! Sadly, as well as covid, many of our previous hardworking committee members have either passed away or become too far advanced with Parkinson’s to continue. Despite many requests and advertising in this newsletter we have been unable to increase the number of people on the committee or gain enough volunteers.

We have lost all but four of our original committee members and this has meant that our activities

have had to be severely curtailed.

All the activities which the Branch had been able to start: exercise classes, dance classes, Xmas Sale, Xmas Lunch, and other recent social events such as the summer picnic, pub lunch and bingo/quiz night, have been organised mainly by just two committee members. This is not sustainable, especially as these two members also work hard as Treasurer and Secretary. A third member is the Membership Secretary and the fourth the Newsletter Editor, and both these positions require considerable input. We cannot continue as a committee in this manner; we need the support and input from more members in order to enjoy social events again and hopefully to restart Walking Football, Tai Chi and Day Respite Care.

To move forward we hope to follow the ‘Activity Group’ Module as set by PUK and In future we will be known as

Swindon Parkinson’s Activity Group

The change will take place immediately and will impact our financial status, with head office having more oversight of the local finances than before. To bring ourselves back up to the flourishing branch that we were, we need to provide more exercise classes, (i.e. walking football, tai chi), and more social activities such as skittles, race night, pub lunches, talks, quizzes, bingo……, all of which greatly benefit our members affected by Parkinson’s. We need to restart Respite Care to help carers who need a break, and to organise publicity and fund-raising from organisations.

To be able to organise these events

we need volunteers to take charge of an activity.

However, we are indeed grateful to those very dedicated members who work hard and raise money for us to spend on social events and other activities.

There are over three hundred members in the Swindon area; surely there are people who would like to run an event. In the past these events have been greatly appreciated by and have been of great value for many people who would miss out on the enjoyment and benefits they have experienced.

Anyone coming forward will have the full support and help from the existing committee. If anyone is interested to help us get back on our feet again, please contact Anna Newman anewman.parkinsons@outlook.com / 01793 695698 Secretary for Swindon Parkinson’s Activity Group or Sue Grice scgrice.parkinsons.swindon@gmail.com / 01793 851540 Treasurer for Swindon Parkinson’s Activity Group

Please rest assured that we will not be cancelling our Tuesday and Wednesday exercise classes or our Friday Dance class.

 

The lunch at New College North Star Campus (formerly Swindon College), will also take place on March 24th.

 

Find Your Voice Singing Group

A weekly singing and social group for people living with Parkinson’s

Details here

 

Mobilisation and Lockdown Exercises

Download them here.

 

Tier 4 Advice - 30 December 2020

Letter from Clive Hallam here

 

Update on policies for visiting arrangements in care homes

Guidance from Department of Health and Social Care

 

Exercise Programme Re-start

Financial Support for our Re-Start of your Exercise Programme and Our Measures Taken to Keep You Safe.

Details here

 

Parkinson's Adviser Update

Parkinson's Local Adviser Update - September 2020

 

Vacancies on Swindon & District Branch Committee

The attached document provides details of vacancies on the Branch Committee.

  • Branch Chair
  • Branch Vice Chair
  • General Committee Volunteer

1 & 2 are effective from the AGM in March 2021, but successful candidates will need to shadow current Branch Chair and Vice chair in the meantime. 3 is effective immediately.

 

The Cricklade Community Award - Vince Mobey

 

 

 

 

Message for all North Wilts patients & Carers

 

Dear all North Wilts Parkinson’s patients and Carers.

 

The North Wiltshire service for Parkinson’s patients started as planned on the 1st April 2020.

 

Letters were sent to all those patients that were known to the previous Neurology Practitioner in North Wilts. Rachel Gardner, Lead Parkinson’s Nurse at GWH, understands that there are several that were not known to the North Wilts Practitioner and so were never seen.

 

Rachel explained they are picking these patients up as they go along. Also to please send out the helpline number, 01793 646436 (patient queries only), and just ask those North Wilts patients who did not receive a letter, to say to the person that answers the phone, that they are one of our new Wiltshire patients and then they will then call them back.

 

The service is the same as that currently being given to the Swindon patients, ie, all over the phone, due to the Coronavirus situation. They will see them face to face eventually she is sure.

 

With Best Wishes

Dave Logan

Chair

Parkinson’s Swindon

 

The Good News Show - Swindow 105.5

Shirley Ludford. Ann Perrin. Spo

 

Local people and positive news mixed with feel-good music.

 

Recorded: 05/04/20 at 11:00

 

 

Shirley has been catching up with script writer Paul Mayhew-Archer. Paul is also a supporter of the Swindon Parkinsons group, as a Parkinsons sufferer himself.

 

 

 

 

UK Help Line - region information for Branch Members - 13 April 2020

 

 

 

 

"Compassionate Swindon" launched to help during Coronavirus

“Compassionate Swindon” is a partnership between Voluntary Action Swindon, Swindon Borough Council and the Volunteer Centre Swindon supported by the Sanford House hub charities for individuals wanting to volunteer, for individuals needing help and for charities and community groups needing more volunteers.

 

See link here

http://vas-swindon.org/coronavirus-help-page/

 

If any of you need any more volunteers or will do when schools close – please contact Andrea Barrett (Andrea doesn’t work Friday’s but will get back to you next week)

http://vas-swindon.org/coronavirus-im-a-community-group-in-need-of-more-volunteers/

 

If any of you are aware of clients who may need extra help if normal group activity is suspended – please encourage them to contact the LiveWell hub on 01793 465513 or via Livewell@swindon.gov.uk

http://vas-swindon.org/coronavirus-im-an-individual-looking-for-help/

 

If any of you have people wishing to help and volunteer they can register here and will be matched to those needing it via the Live Well hub or will be connected with any of you that ask for volunteers.

http://vas-swindon.org/coronavirus-i-want-to-help/

 

Coronavirus - Message from your Branch Committee 16 March 2020

Coronavirus Message here

 

Community WALX Swindon

The Community WALX Swindon project is an initiative set up by Live Well Swindon (Swindon Borough Council) team in collaboration with Wiltshire and Swindon Sport (WASP) supported through National Lottery funding. This initiative aims to provide low cost peer-led pole walking in green spaces all over Swindon, encouraging the people of Swindon to be more active and improve their health and wellbeing.

Details here

 

An Investigation into Physiotherapy Referral Rates in People with Parkinson’s Disease a Small-Scale Study

My name is Olivia Gillam and I am a MSc pre-registration physiotherapy student at York St John University undertaking a research project for my dissertation. This project will be overseen by my dissertation supervisor Samantha Yoward. I would like to invite you to take part in this research project. Details here

 

Online Parkinson's research: King's College London

The study is an entirely online study, run by King’s College London and funded by Parkinson’s UK.

 

It aims to better understand worry, in order to develop effective psychological treatments to reduce worry and anxiety for people with Parkinson’s. Participants are required to complete short online training sessions at home over the course of three weeks, which involve listening to audio scenarios.

 

The link to register interest directly to the study is here

Further details on the Parkinson’s UK website here

 

Advertising for Parkinson's study

I am a researcher at the University of Oxford in the Department of Psychiatry. I was wondering if I could advertise my study concerning the pharmacological implications of learning and memory in PD within the Swindon District Branch. Many individuals with PD find that participating in research is a very rewarding experience as it provides a sense of "giving back" and taking action against the disease. I beleive that advertising this opportunity would be just as beneficial for the members of your group. All participation and travel expenses are compensated. I've attached our advertising flyer and the link to our research page on the PUK website. Thank you ! Sara Nahon

 

Volunteer Opportunity

Volunteer helper - seated exercise class, Tuesdays 2-3pm, The Grange centre, Stratton St Margaret

Task description:

To be aware of participant welfare, sensitively responding to the needs of participants.

To join in with exercises, keeping an eye out for participants needing assistance, particularly during resistance band work.

Assisting participants in safe and correct use of bands.

To assist with handing out and collecting in resistance bands and other exercise materials.

To relax into the general sense of fun and well-being in the class, a sense of the absurd much appreciated.

 

Please apply here

 

The Prospect’s Carers Open Programme – Who Cares for the Carers?

This service is now offered to those affected by Parkinson’s amongst others across Wiltshire. Please take time to read the following documents:

Prospect Flyer

Prospect Letter

 

Cycle 4 Health at Swindon's County Ground Athletics Track

An opportunity for people with Parkinson's to cycle safely, including those in wheelchairs.

 

There is a group called Cycling 4 Health. They encourage people to cycle on the County Ground Athletics Tracks. There are bikes there that people can use. The times they have access to the track is Monday 10-11, Thurs 1-2 and Friday (drop in) 10-12. There is a way that folk in wheelchairs can use the bikes. This would be useful for people that don't feel safe on the roads anymore but would like/need the exercise. There is parking at the County Ground.

 

This is run by Swindon borough councils, Sports Development and Health Improvement team. They form part of Disibility Sport in Swindon group.

 

Activities available at the centre

  • Sessions are held on the County Ground Athletics track, a smooth surface for riders.
  • The centre caters for people from 16 years and above.
  • Under 16s can attend sessions on prior arrangement.
  • They have a good fleet of adapted cycles to choose from and these include a twister, a side by side tandem, a hand bike, trikes, a pedal propelled quad bike, a recumbent trike and a wheelchair platform carrier.

Opening times

Open: All year

 

Sessions:

Mondays 10am till 11am

Thursdays 1pm till 2pm

 

Cost

Please contact the centre for information on cost

 

Contact details:

Phone Carol Jones on 01793 464902