If you have Parkinson’s, or support someone who does, there are over 300 in-person groups across the UK offering a range of emotional and practical support, health and wellbeing services or social activities to help you live well with Parkinson’s. There really is something for everyone.
We hear from 6 people who share how this support has benefitted them.
Steff helps run the Strictly Parkinson’s dance class in Powys, Wales.
I used to attend a dance class for older people. But as my Parkinson’s symptoms slowly got worse, I wanted to try something more suited to me. So with the help of a local dance instructor, I set up Strictly Parkinson’s.
At the class we mostly do gentle movements, often to classical music. Heidi, our class teacher, is specially trained in supporting people with health conditions like Parkinson’s. She’s great at adapting to people in the room, so if we move less well or clumsily – it doesn’t matter. The aim is to have fun and enjoy ourselves.
The class is for all abilities, and anyone can join. That includes partners and family members. Some people are more mobile than others. Quite a few of us who have been around from the start are less active nowadays. I tend to do seated dance only now.
We always leave with a smile on our faces. Meeting up with others and keeping your body moving is great for your wellbeing.
Lorraine is the Chair of the North Staffordshire Branch. She has been a volunteer with the Branch for the last 18 years.
Our group meets weekly in a local community hall. There’s always a great atmosphere.
During the meeting we arrange a variety of activities, including a raffle and quiz. One of the popular sessions is the chair‑based exercise group I lead. It’s done to music and is very light‑hearted, but it really benefits the members.
Healthcare professionals often volunteer their time to come along and support members with information on different Parkinson’s symptoms and treatments.
Another popular activity are the theatre trips and days trips that we organise. Recently this has developed into organising a 2-day holiday for our members. We visited Llandudno and a great time was had by all.
Everyone at the group understands how difficult that first move can be to come to a meeting, so someone is always on hand to support a new member when they arrive – warmth and friendship is part of our ethos.
It’s my personal hope that the group brings a sense of relief and happiness from the daily realities of Parkinson’s.
Winston attends a weekly seated exercise class group, which is run by his local group in London.
At the beginning of the class, we sit in a semi-circle and our instructor starts with a game of Zip Zap Boing – a quickfire verbal game. Getting it wrong is more fun than getting it right! Then we do a warm-up, we call a ‘body scan’. We think about how feet are feeling and we wiggle our toes, then our ankles and move up our head and neck.
During the class, our instructor will always demonstrate the movement first so we know what to expect and then we follow her. The moves are simple, safe and fun. There’s never any pressure to take part though, you just do what you feel able to.
Depending on how my symptoms are on the day, there may be things I find difficult, but that’s OK. But everyone in the group has different symptoms. So if I see someone doing something I find difficult, I try to follow what they’re doing to see if I can try to do the move. Likewise other people can learn from me. We try to help each other.
At the end of the session, we enjoy a cup of tea. And as much as we’re encouraged during the exercises, we’re also encouraged to eat a biscuit with our tea!
After the class, I always feel like I’ve achieved something that otherwise I may have found difficult. It’s a good energiser and boosts my confidence too.
Since Vincent’s wife Maggie was diagnosed with Parkinson’s, he’s set up two Parkinson’s cafes in his local area.
When I was left struggling as a non-paid carer to know what to do, my reaction was to dive in at the deep end and find out all of the answers.
Maggie and I quickly got involved with our local Parkinson’s UK branch and were warmly welcomed. 2 years later, we formed the Parkinson’s UK Cricklade Cafe, which meets once a month.
At the group, there is a huge amount of knowledge on tap. It’s a chance to talk between ourselves over coffee and cake. We share experiences, ask questions and know that someone will have the answer.
At the second cafe, which meets four times a year, carers sit around a large table, ask questions and talk about anything on their mind. Their loved ones with Parkinson’s sit together in the other half of the room. This allows us all a little privacy for some deep and difficult subjects to come out and be aired.
When we’re together, we’re instantly at ease. Everyone knows why we’re there – nobody has to feel uncomfortable with their situation.
Jane and her husband John have been going to the Parkinson’s Pub meet‑up in Norwich since John was diagnosed with Parkinson’s 4 and a half years ago.
When we found out about Parkinson’s Pub after John was diagnosed, it was a bit like a light in the distance at the end of a tunnel.
We meet once a month in a local pub and we really look forward to it. Some people will have a meal, some will just have a drink, but there’s always a terrific friendly, warm and welcoming atmosphere.
Sometimes it can be difficult to talk to family and friends because you don’t want to burden them. It’s easier to speak freely with each other at the group because we understand what everyone else is going through. We learn different things from different people too – everyone has a different experience of Parkinson’s.
But it’s not all about Parkinson’s – we’ll chat about holidays, families, what’s happening in the news. It’s very sociable and we’ve got to know so many people who have become real friends.
Gerry attends the monthly speech and language therapy sessions offered by the Lisburn Branch in Northern Ireland.
Sarah, the speech and language therapist, starts with warm-up activities. For example, sitting in a circle the group repeats sounds to help us to raise our voices, or alter the pitch to achieve a higher sound.
Afterwards we break up into smaller groups and discuss a particular topic, such as pastimes or holidays. We’re encouraged to speak at a good volume and at the end of the exercise, we give feedback, which supports and encourages each other.
I’d had speech and language therapy before, but those were one-to-one sessions. I was apprehensive about attending group sessions. But everyone in the group has had their speech affected by Parkinson’s – that helps lose your insecurities.
I have a real affinity with the group and there’s a great feeling of camaraderie.
Find support near you
If you have Parkinson’s, or you know someone who does, we’ll help you find the support and activities you need, local to you. From Parkinson’s advisers and our helpline, to local group meetings and exercise classes, we have the right opportunities for you.