YOPD Glossary

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Here’s an explanation of some of the terms you’ll hear used around young onset Parkinson's, plus insights from Sarah Tilley Sykes who has YOPD.

Here’s an explanation of some of the terms you’ll hear used around young onset Parkinson’s, plus insights from Sarah Tilley Sykes who has YOPD.

Access to work is a government initiative that can help you stay in work for longer. If you have a disability, you can apply for support with practical things at work, such as a new chair or help managing your stress levels with some counselling sessions.

Bradykinesia: this is a term that describes slowness of movement. Sometimes when your medication is wearing off you can start to slow down a little and shuffle a bit and sometimes it takes longer to do simple tasks like cutting a carrot!

Counselling: counselling or talking therapy with a professional or a friend is important, especially in the early stages when you are coming to terms with your diagnosis. Please don’t be afraid to ask for help.

Dystonia: sometimes your muscles may contract and twist making movements painful. Sometimes you get dystonia when you’ve been sitting down for a long time or sitting in the same position doing a certain task like typing. 

Exercise: something I never did before I was diagnosed and something I now enjoy and a bonus is that it helps manage my symptoms and brightens me up. Find something you enjoy whether it’s throwing a frisbee, playing a bit of table tennis or trying yoga. Give it a go! 

Friends: old, new friends, neighbours and colleagues are important in fact vital as they can be a great source of support to meet up with to have a chat, have a gossip with and maybe go for a dance with. 

Laughter: this produces natural endorphins which are important, and there’s no greater therapy than having a laugh with friends or family. 

Medical  driving license: Once you are diagnosed, you need to let the DVLA know that you have Parkinson’s disease, and they will adjust your driving license to become a medical license. My medical license gets reviewed every three years. 

Nordic walking: This is something that is recommended as a really good activity for people with Parkinson’s as it not only gets you out in the fresh air, it helps with meeting new friends and it can help with balance and coordination. 

On/Off: this is a term that is often used to describe how you’re feeling. Sometimes you’re on with your medication and that’s usually when you have recently taken it and it’s working really well but towards the end of the medication period when another tablet is due you may start to feel off. This could be feeling tired, sluggish or feeling confused but it means different things to different people. I like to be on! 

PWP means a person with Parkinson’s, HWP means Husband with Parkinsons, WWP means wife Parkinsons, etc but this is a way of simplifying things on the Internet on Parkinson’s groups. 

Prescriptions: Still have to pay for prescriptions when you have Parkinson’s and live in England but you can buy a prepayment certificate. If you live in England this is £111 a year. This means you can get as many prescriptions as you want on a monthly basis without having to pay individually 

Sleep: This is important. Sometimes it can be elusive. Look at ways that can help you – meditate, relax so you can try and get as much sleep as you can. I wear silky pjs to help me turn over in bed. They feel great and luxurious. Make sure you don’t double up with silk sheets too as you may roll completely out of bed! 

Tremor: this is a symptom that’s mostly associated with Parkinson’s but not everybody has a tremor. Tremors can cause embarrassment and inconvenience for some. 

Pet therapy: not a medical term but recognition that sharing your life with a pet can be beneficial. My cat knows when i need a cuddle and cheers me up with her antics.

Sarah Tilley Sykes
Sarah Tilley Sykes
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