"Being active is just as important as my Parkinson's medication" - Ali's story

Ali lives with Parkinson's, but is determined to stay active with Parkinson's. Here she talks us through the activities that help her to live well with the condition and how a positive attitude helps her to keep going. 

Can you tell us a bit about yourself and take us back to the start of your Parkinson's journey?

I’d retired from my freelance career as a writer and editor. I did this gradually by just saying ‘no’ more often and recommending someone else for the job. 

My husband Robin and I had a ‘bucket list’ of beautiful places we wanted to visit in the world. Our daughter had just had a baby, and we were looking forward to spending more time with her new family. 

Our first scenic trip was to New Zealand, which was everything we’d hoped for. Looking back, I realise that my walking had become slower and more laboured, and I was finding bootlaces, buttons and zips more fiddly. I’d just put it down to getting older, although at 67 I didn’t feel ‘old’. 

I used to enjoy the Parkrun events but my times were getting slower and my steps were more shuffly. I later injured one of my hips and when a sharp-eyed sports physio asked if she could write to my GP I still wasn’t worried about anything.

My GP brought up the ‘P’ word very quickly in the conversation and, beyond a referral letter, didn’t offer me any leaflets or links to look at. But she did say keep exercising, which was music to my ears. 

I went away and Googled in search of information, but there was so much of it! Where to begin? I was lucky to have a friend in the next street who had been living with Parkinson’s for nearly 10 years. We’d been in the same running club together. She helped me filter and prioritise the information and pointed me to the PD Warrior 10-Week Challenge. 

This is where I learned about the importance of neuroplastic exercise. It was something I could do for myself while I waited for my hospital appointment. My wait was short compared with others, but it was still a horrible period of limbo. 


Can you tell us more about your experiences of being active?

I had a dream job in the early 1980s as deputy editor of Running magazine. I joined just after the first London Marathon and ran the second and third London marathons, making a lot of new friends in the process. I wrote a feature about orienteering, having told my editor that I couldn’t navigate my way out of a paper bag. I was hooked! So running has been an important part of my life ever since. 

During my time at the magazine, I developed the ‘Sisters Network’ – a buddy system in which women new to running were paired with women who had already made their first steps. I’ve thought about it a lot lately because I think people in those early stages with Parkinson’s need positive role models. 

I came to Parkinson’s with an understanding of the physiology of exercise and fitness, which has really helped me adapt. I realise Parkinson’s is playing havoc with my neurological system but my heart and lungs, muscles and bones are still in good working order, so it’s up to me to keep them that way. 


What is the biggest benefit for you when you’re active?

I would say it's the endorphins, the fresh air, the vitamin D and of course, the friends – what’s not to like? I often find that being active is just as important as my medication for me. I certainly know when I have missed a dose.


Which activities do you find are best for managing your Parkinson’s?

My weekly exercise menu will typically include: 

  • Walking and running, including parkrun 
  • 2 online, real-time Neuro Heroes classes 
  • Indoor rowing 
  • Boxercise 

This menu offers a variety of cardio fitness, strength training, neuroplastic exercise, co-ordination, balance and stretching. 


What are the biggest challenges for you when you’re active and what helps you to overcome them?

Even if I’ve had a good night’s sleep I feel absolutely ‘bleurrrgh’ when I first wake up. I don’t feel human until I’ve had my meds, exercise and breakfast, and I have to time these very carefully. I change straight from pyjamas into exercise kit, or I’ll get to mid-morning and just not be bothered. 


How important is it to make physical activity part of your routine and to set achievable goals?

Very! Achievable fitness goals are important for everyone, Parkinson’s or not. But don’t try to set too many targets at once. Focus on one aspect of your fitness at a time. Make subtle changes and see how they work for you. 


What tips would you give to someone with Parkinson’s who is trying to be active?

Where to start? Number one would be to start exercising as soon as possible, even if your diagnosis isn’t confirmed. Try and find a health or fitness professional who understands the specific needs of people with Parkinson's.

Then you could try to do the following: 

  • Focus on lifestyle factors – diet, exercise, sleep, hydration, reducing stressors – and try to be the healthiest you can be. 
  • Find a buddy who can help you filter the information and to whom you can be accountable. 
  • Find activities you like doing…and with people you like. 
  • Be confident to ask for help when you need it. 


Finally, are there any new physical activities that you would like to try in the future?

Yes, absolutely! I really want to try: 

  • Climbing wall 
  • Aerial circus skills 
  • Walking football 
  • Dragon boat racing 
  • Muddy challenges 
  • Go Ape 

Even if I just go for a one-off to try-it, I want to write about it and show people what’s possible.