Managing Young Onset Parkinson’s through exercise and a positive mindset, by Nicola Leask
My first symptoms were: slowness in writing and my writing becoming smaller. I’m right–handed and I began holding my left hand over my right hand to control the mouse & no matter how many times I tried to stop it kept going back.
My movement started to change too. I began to walk a bit funny like I had a limp on my right side. My back also became very stiff in mornings.
I knew the minute I googled my symptoms that I had Parkinson’s Disease, but I couldn’t bear a 14 month wait for NHS diagnosis. So, I paid to be diagnosed privately (or rather my parents did) when we realised the waiting list was so long.
Even though I knew deep inside I had Parkinson’s, it was still a huge shock to be officially diagnosed. My active body now to be invaded and compromised every day. But for any of you that know me, I rarely sit down, and I remain defiant in that I will keep moving, through gritted teeth if I have to!
Being an open person has really helped me with ‘coming out’ with my diagnosis. I actually decided to set up a Birthday Facebook Fundraiser to raise money for Parkinson’s Care and Support UK as a great way to get my story out to all my friends and family! It made it easier for me to tell them my news and much easier to talk about it afterwards. Everyone was super nice, and I raised over £2000 for the charity, which was a bonus!
I live in West Sussex in a lovely village called Cuckfield near Haywards Heath. I’m married with 3 kids, a dog and a 4 day a week job and so life for me is very busy! However, people with Parkinson’s always say ‘exercise and just keep moving’ and this is what I have been doing. Since diagnosis I received a GP referral to my local gym and do 2 gym upper body workouts and one live body balance class a week. Fortunately for me I’m a runner and am keen on exercise and yoga. So, I’m still running until I can’t, walking as much as I can (Tim, our Labrador is happy about this!) and doing yoga. These are all helping me keep moving. Although my back feels like a plank of wood at times and my right side is weakening to the point I find writing difficult now, I actually feel lucky that I wasn’t diagnosed with a terminal illness. I will manage my symptoms as they progress. I have an amazing network of friends, family and people to look after me. There is always someone much worse off and I have so much to be grateful for. So, Parkinson’s Disease can do one, because I don’t sit down easy!
I love exercising and really feel this will slow down the progression of my Parkinson’s and with all I’m doing, it’s got to be helping right?!
If I could just get a grip on the nutrition side of things, I’d be fit as a fiddle! My diet is generally good but partial to sweets and I do snack a lot! I take daily probiotics and eat plenty of vegetables. I have also been a pescatarian since age 21 and am now 48.
My advice to any other person with Young Onset Parkinson’s Disease (YOPD), is this:
- It’s a shock and not the best of conditions to get however, life expectancy is practically the same.
- It’s about how we take the journey, so do whatever you can now to keep moving, exercise, exercise, exercise! Anything that gets you moving! You don’t need to become an Olympic athlete!
- Remember to rest. Get as much sleep as you can so your brain can rejuvenate, the more the better!
- Communicate with other people with Parkinson’s. It helps to share knowledge but just remember to never compare yourself to others as everybody’s symptoms can vary so much. Only do this when you’re ready. Reach out to people in your own time, you’ll know when the time feels right. If there are no groups in your area, speak to Parkinson’s Care and Support UK who can help you to set one up. It’s great to know you are not alone and I have met some fabulous people through my YOPD group.
- Eat well! Diet is very important. Try pro-biotic foods and get your body physically & mentally as fit as you can. Do whatever you can to slow the progression down.
- Lastly stay positive because we are not defined by Parkinson’s, we just have to manage it as-best as we can alongside our lives. You can carry on doing things you love, you will just have to adapt in time. It’s important to know that our condition will advance and we will have very tough days, but we can delay the progression. Since we’re stuck with it, why not manage it in the best, most positive way we can!
To others who are just learning about Parkinson’s:
Not every person with PD shakes all the time! 30% never have a tremor. This is a common misconception of people’s who don’t know how varied Parkinson’s symptoms can be! I do have a slight tremor at certain times especially when I am excited, anxious or cold!