Having a social life is not an optional extra – staying social helps us to stay well. And for the 11,000 or so people with Parkinson’s in Scotland this is particularly true. We hear from Parkinsons UK in their guest blog on how they are supporting people in their communities.
Parkinson’s affects adults of all ages, but the overwhelming majority of people are aged over 65. Although often understood as a condition affecting movement, it impacts on every aspect of daily life, including talking, walking, swallowing and writing. Tiredness, pain, depression, dementia, compulsive behaviours and continence problems also have a huge impact.
A lot of people find their Parkinson’s symptoms embarrassing. They report negative responses such as staring or being accused of being drunk. Mobility and mental health issues can also make it really challenging to get out and about.
It’s no surprise that people with Parkinson’s become more isolated as their condition progresses, and that unpaid carers have limited opportunities to maintain their social networks.
That’s why Parkinson’s UK supports over 40 local groups across Scotland, offering friendship and a range of activities to people affected by Parkinson’s. People tell us that they really want to meet with others in similar situations. Sharing experiences can “normalise” Parkinson’s and make it easier to enjoy socialising.
Many of our local groups offer health and wellbeing activities. Exercise classes, dance, art and walking groups are popular, and we are looking at new ways to make sure that everyone with Parkinson’s in Scotland can access activities even if there isn’t a Parkinson’s group nearby.
We also offer self management courses for people with Parkinson’s and carers. We’ve already run these in Aberdeen, Glasgow, Stirling and Edinburgh, and we’ll be expanding this year.
Our Local Advisors provide confidential one-to-one information and support. For people who are isolated, this is a real lifeline. We also run an online Forum, a telephone Buddying Service, and are developing face-to-face peer support.
But there is more to be done, and not just for people with Parkinson’s. Making it easy for people to stay connected must be a policy priority. We need to tackle underfunding in social care and support services like befriending, buddying schemes, and day centres. We need to make our communities as accessible as possible for everyone.
And most of all we need to confront Scotland’s fears around aging and illness. It’s great to hear the Scottish Government talking positively about older people as assets, but too often this agenda focusses on those who are in good health. Older people who need support must not be “disappeared”. The voices and experiences of older, frailer people – including disabled people and those with conditions like Parkinson’s – must be heard.
For more information on Parkinson’s support in Scotland, go to www.parkinsons.org.uk/support or phone our free helpline on 0808 800 0303.