Julie’s story: “Everyone with Parkinson’s has a part to play”
When my neurologist informed me that I had Parkinson’s and that there was no cure, I was devastated. I was also really angry. I’d always been fit and healthy. I couldn’t believe that there was nothing I could have done to avoid getting diagnosed.
My husband and I decided to find out as much as we could about the condition and headed to the Parkinson’s UK website, where we were pleased to find a section specifically containing short video interviews with recently diagnosed people with Parkinson’s. To hear them tell their stories and describe their pathway to diagnosis brought tears to our eyes.
Daily living with the condition
It’s important to take medication at regular times so, to make this stress-free I do the following:
- Set alarms on my smartphone for the time of each dose. I make sure my phone is always with me and charged sufficiently. That way, I can live in the moment knowing that I will hear the alarms.
- Put all the medication for the day ahead in a sectioned pillbox and take it with me.
To support my mental wellbeing, I see a counsellor and talk candidly with her about how I feel. I also exercise each day and go out with my husband to walk our dog. I take time to appreciate our surroundings and the changes to the countryside.
Getting involved in the Parkinson’s community
After signing up to receive monthly newsletters, I came across opportunities to participate in research studies.
I’ve completed online tests and surveys and been interviewed by PhD students online. I’ve always enjoyed completing surveys, so I thought it would be an easy way to contribute to the work going on to better understand Parkinson’s and how it can affect those who have it.
None of this has cost me any money or inconvenience (I’ve done most of it from home). I feel good about having made a positive contribution to finding a cure. I would urge everyone with Parkinson’s to talk about their experiences openly and make a provision in their will to leave a proportion of their estate to Cure Parkinson’s.
I’ve also been working with the Cure Parkinson’s PR team to help publicise the fundraising efforts of one of my good friends Andy Manning, who is cycling across the USA to raise money for Cure Parkinson’s.
I have reached out to friends and former work colleagues telling them what we’re doing to raise money to help find a cure. This has involved re-connecting with some people after a gap of 10 years or more and has resulted in donations from nearly everyone on my list. Together with my friend Andy, we have so far raised over £10,000 for Cure Parkinson’s.
“There are so many shades of the condition”
Parkinson’s is now the fastest growing neurological condition in the world and yet there is still no cure. It is highly likely that soon, everyone will know somebody who is living with Parkinson’s.
As more people talk about it, awareness of the condition will increase. So, everyone with Parkinson’s has a part to play.
I’ve learnt that there are so many shades of the condition. It’s all about managing your symptoms, finding the right medication, taking your drugs at regular times and making sure you exercise. What I can do is take one day at a time – and try to enjoy it as much as possible.
