More than 80 landmarks across Scotland are today (Thursday April 11th) lighting up in blue to mark World Parkinson’s Day and raise awareness of a condition that affects around 12,400 people in Scotland.

That’s about 1 in 375 adults – making it the second most prevalent neuro-progressive condition after Alzheimers.

The three Western Isles landmarks involved are all in Stornoway - An Lanntair, Lewis War Memorial, and Lews Castle.

And new survey findings released today (11 April) by Parkinson's UK Scotland highlight the impact of low public understanding on people who live with the condition -

  • 83% said they’d had negative experiences including being laughed at, accusations of being drunk or unfriendly due to movement problems caused by their Parkinson’s
  • 58% said they have cancelled or avoided social situations because they are embarrassed about their Parkinson’s symptoms, or are concerned about how people will react to them
  • Almost half (45%) have said that people don’t believe they have Parkinson’s
  • A third (33%) said their less expressive facial expressions – an effect of the condition - had been misinterpreted as being unfriendly 
  • One fifth (20%) said that their imbalance or slurred speech had been misinterpreted as drunkenness
  • And 17% have felt or been judged for using a disabled parking space or toilet

In a bid to improve public understanding the charity is using World Parkinson's Day to launch Parkinson’s Is, a campaign to show the reality of life with Parkinson’s. The campaign will show the brutality of Parkinson's and demonstrate how people with Parkinson’s don’t let it hold them back.

David Wilson from Glasgow has been living with Parkinson’s for six years. David says: “Most people are understanding and supportive when my symptoms become obvious.

“Unfortunately, there are some people who react negatively and this can be annoying as well as making things more difficult for me. I use a stick, not just to help me balance, but as a signal to others that I have a disability. It can be difficult and frustrating when people expect me to give way on stairs and escalators when I need to be able to use the handrail.

“My symptoms mean that my movements can be involuntary and unco-ordinated and it can be embarrassing when people stop and stare. Recently a passing cyclist shouted at me and accused me of having had too much to drink.

“I travel a lot by bus and life is much easier when the driver is disability aware and considerate. Sadly, that’s not always the case. You can get thrown around when the bus moves off before you’ve had the chance to sit down. The same is true when trying to get off.  One driver recently would not stop when I remained seated but ringing the bell taking me three stops past my destination. 

“I know that these issues really put some people off going out and about. But I refuse to give in to the challenge of other people’s inconsiderate behaviour. I think that these negative responses reflect a lack of understanding about Parkinson’s which is why these information and awareness initiatives are so important.  Thankfully, most folks are considerate.”

Annie Macleod, Director of Parkinson’s UK Scotland, says: “The perception that Parkinson’s is an inevitable part of growing old and is just a bit of shakiness couldn’t be wider of the mark. Parkinson’s can be brutal and has more than 40 recognised symptoms. It affects people of all ages, and typically has a massive impact on every aspect of someone’s life.

“To help shift this perception we are launching our biggest ever awareness campaign to highlight just how serious the condition is. We’re delighted that so many places will be showing their support for the Parkinson’s community by lighting in blue for World Parkinson’s Day. Whether a national landmark or local church – we thank them all for their support. People with Parkinson’s and their families often feel isolated, so it means a lot to the community to know that people care and are aware of the condition.”

To see where is lighting up see our interactive map at  www.parkinsons.org.uk/scotland

Annie continued: “We need everyone to recognise Parkinson's as the serious health condition it is, and the major impact it has on everyday life so that people with Parkinson’s do not continue to experience such appalling misunderstanding of their symptoms. Everyone in Scotland has a role to play in developing understanding and positive public attitudes towards people affected by Parkinson’s and I urge everyone to visit our website to engage with our campaign Parkinson’s Is.”

Parkinson’s UK is also calling on people across Scotland to get their cameras out and join in the Light up Scotland for Parkinson’s project.

The charity wants people to upload their pictures on to its ‘Photobomb for Parkinson’s’ map.

Annie Macleod says: “We want as many people as possible to get involved by adding their pictures of the light up locations, their selfies at the venues and any other World Parkinson’s Day activities.

For people with Parkinson’s and their families it’s important that people recognise the condition and show solidarity.

To join in just take your pics, add a caption and upload them to our Photobomb for Parkinson's map at https://drive.google.com/open?id=1GrjQ2e_kkVVjSH7hwqeVTIRr66MJ_SzO&usp=sharing

Parkinson’s UK has today launched its Parkinson’s Is campaign, which highlights how the condition is far more than just a tremor, and the often-brutal reality of living with it.

Find out more at: www.parkinsons.org.uk/parkinsons-is