Additionally, the ability to eat and swallow are sometimes hindered. Both of these difficulties can be improved with the help of a speech and language therapist.
“I struggle to get words out. Sometimes I can’t control the volume of my voice – I don’t know if I will shout or whisper when I speak. This makes me anxious, especially when I’m out, and it’s easier just to keep quiet, though I love a good chat and a laugh.”
This is how Ben feels because his Parkinson’s effects his speech and the muscles in his face. He tells his story on the Parkinson’s UK website.
Ben’s Story
As well as effecting speech Parkinson’s can freeze the muscles in the face creating a fixed expression which can give the impression that they aren’t interested in what other people are saying.
Ben says: “I struggle to get words out. I’ve always had a stammer, but Parkinson’s has made it much worse. I struggle to get words out. Sometimes I can’t control the volume of my voice – I don’t know if I will shout or whisper when I speak. This makes me anxious, especially when I’m out, and it’s easier just to keep quiet, though I love a good chat and a laugh.”
Parkinson’s can make it difficult to eat and swallow – Mark’s story.
“I really don’t feel in control. I’ve had Parkinson’s for 34 years. Like many people I like eating in restaurants with my friends and family. But I always feel I’m being watched because it takes me a long time to eat and I have to use a spoon instead of a knife and fork. I’m also unsteady on my feet and have to try hard not to fall over when I’m walking to the table. Ordering can be a problem too because Parkinson’s makes my voice really quiet and it’s hard to make myself understood.
“People staring can be very upsetting. And when I’m anxious Parkinson’s affects me more than usual and I really don’t feel in control. It would be nice to go out without worrying how other people are going to react to me.”
And it’s not just a disease that effects older people.
According to Parksinon’s UK most people who get Parkinson’s are aged 50 or over but younger people can get it too. One in 20 is under the age of 40.
Sarah lives in south west London with her husband and two children – Connor, who’s 3, and Jasper, who’s 5 and has just started school.
She first noticed a tremor in her left arm when feeding her second child. Parkinson’s was the last thing on her mind.
She says: “Fumbling to get shoes laced up is so stressful. The school run is probably my worst time of the day. Getting my two boys dressed when you are short of time, and you are fumbling to get their socks on, shoes laced up, blazer buttons done up is just so stressful – and I hate having Parkinson’s then.
Every day is a struggle. My self-confidence took a knock when I was diagnosed. Jasper is now at a new school and I took the decision to share my diagnosis with other mums and teachers, which was a huge relief. On the positive side, I am starting a younger person’s group in my area, because when I was diagnosed I didn’t know anybody else my age. There are 14 of us now.”
Support for younger people with Parkinson’s.
One in 20 people diagnosed with Parkinson’s each year is under the age of 40. There are around 6,000 people of this age living with Parkinson’s in the UK. Parkinson’s UK can offer friendship and support to anyone affected by Parkinson’s, through its online forum and peer support service.
There is also a network of local groups offering friendship and support to everyone affected by Parkinson’s.
Some groups are specifically for younger people such as Sarah.
For more information about Parkinson’s UK and to read more real life stories of people with Parkinson’s go to:
http://www.parkinsons.org.uk/content/giving-back-control-people-parkinsons
www.parkinsons.org.uk/tags-forum-and-website/real-life-stories?page=1
Written by Rachel Harrison, Speech and Language Therapist, on behalf of Integrated Treatment Services.
April 2014
Image rights – Parkinson’s Uk
