Name: Sophie Wardle
Age: 56
Age and year of diagnosis: 37/38 at diagnosis 2008
Occupation: Artist, Lives in Gloucestershire
Any immediate family/children: 2 sons; Sam (19) and Harry (15) And my cat!
How has YOPD changed your daily routine or relationships?
It torpedoed my life; the diagnosis completely blew my life out of the water. Both of my marriages suffered because of it. However, more positively my younger son has commented that we’ve had more time together because of it (Pre diagnosis I was always at work, and with a very long commute).
What do you do for work? Have you been able to continue working?
I worked as a tax advisor at KPMG commuting twice a week, between the start of my diagnosis period there was a gap where I didn’t tell them (I stuck my head in the sand a bit). Sometime after I told them, I was made redundant.
Now, I am now much more creative – I work and exhibit as an artist (painter).
The journey to diagnosis can be a twisty turny one. Can you share with us your journey?
2005 was when I first went to the doctor. Nobody knew it was Parkinson’s at that point. Nobody knew that it was. I had started brushing my teeth with my left hand instead of my right hand. The first Doctor said to come back and see him in 6 months. And then I got pregnant. So I didn’t, I was too busy having a baby. After I had Sam my joints were hurting and my right hand was hurting in particular. And they thought it was Carpal Tunnel Syndrome. They did all of these nerve tests and all sorts of things, and then they came down to the conclusion that the only thing it could be was carpal tunnel. But, they weren’t sure, so I asked if there was anybody else who can have a look, as I didn’t want to be off work and not be able to drive for two weeks (thinking that was a massive inconvenience).
They sent me to a neurologist, who took one look at me, and he said, I think we’re dealing with Parkinson’s. And that was the first time anybody had said that it could possibly have been anything like that at all.
And then they did all the tests to make sure that it was Parkinson’s. So I was by myself, expecting to be told I had Carpal Tunnel Syndrome. Just worried about the driving.
And the neurologist just presented it to me, he just said to me with no warning “I think we’re dealing with Parkinson’s” and I was like…Okay. It was a complete bolt from the blue.I remember walking home on the phone to my husband, walking along, saying, I can’t believe this, I can’t… this is just not happening. It was unbelievable. I still find it quite unique even now.
Where is the best place to seek help and advice about the condition?
I went to the European Parkinson Therapy Centre which is a health rehabilitation centre in the mountains in Darfo Boario Terme, Italy (renowned for its natural hot springs) They teach you physical, mental and practical coping mechanisms – it comes at a cost but my god it’s fantastic, I love it.
I found it about 9 years ago after doing some digging, its all round holistic healing (ahead of its time; all the stuff we now take as absolutely necessary).
I must actually try and work out a way of getting some cash together to go and do that again, as last time I went, I was at the beginning of this journey, and the things that they taught me were really useful. But it’ll be quite interesting to go back now.
How have your family and loved ones helped?
I’ve been very lucky and also they’ve not been too overly helpful in terms of offering to do things for me – I’ve been really lucky in that my family know when to just leave me be and let me get on with it, which is good as it helps me to keep my independence and doing things for myself which I intend to continue to do!
I’ve got a good network of friends, and they’ve been amazing.
My brother and sisters are good, they will ask me how I am. But none of them live nearby, so they don’t see it on a day-to-day basis. But they are as supportive as they can be.
What impact has YOPD had on your daily routine/what has helped with this?
At the moment, I get indirect help, as it were. My ex-husband takes my 15 year old son to school now, just to make life easier for me in the morning. With respect to keeping the house and trying to keep the house tidy and clean, no, I did it all by myself. But having said that, I’m in the process of finding grants and organisations to help, and I’m doing that in conjunction with the local County Council who have a team called the Enablement Team.
Apparently, it’s quite rare (not all Councils have it – this is Cheltenham Council). And Will, the guy who runs it, is an absolute diamond. He’s helping me find grant money to help pay for things like decluttering and a deep cleaning, things like that. Those things can be difficult to keep on top of because, imagine you’ve got a pot of energy – you can either choose to use all your energy on cleaning the house, or you can choose to save some of it to do something you actually want to do. But you can’t do both. And so I try every day to allocate some of it to doing the house, but I’m damned if I’m going to spend all of my energy doing chores. And I know that’s my choice. But it means that we do live in relative chaos. (Well, I think we do my friends say I don’t, but I think we do!)
So, it’s a trade-off, and so the Enablement Team are helping me get that trade-off to as best a position as we can. It’s nice to know you’ve got somebody else shouting your corner.
People can be very reliant on medication to function-do you have any tips on how to navigate this as a new routine?
I tend to forget my medication, it may be that I have something against it!
What do you do for fun?
I like to travel and have taken solo trips including Japan. Close to home I like using the free bus pass to travel around the UK. I go to a lot of gigs – it’s great to dance it out – Duran Duran was a highlight, and I just bought tickets for the Wonder Stuff as they are doing a gig in Stroud. I also learnt drumming with a Parkinsons initiative group.
How do you keep fit?
Swimming, Tai Chi is brilliant, Weight training specifically for Parkinsons. Has living with early on-set Parkinsons given you any fresh perspectives on life? Yes! Make the most of your time and that money is not so important.
Who or what inspires you?
Anyone that says yes and that doesn’t see barriers. Such as:
- Gaynor Edwards at YOPD
- David Sangster – David makes films (including one for the Parkinson’s Conference in Pheonix)
- Matt Eagles and Ed Shepherd; who also have a film shortlisted
Is YOPD something you talk openly about with people you meet?
Yes, I do now. At the beginning, I found it really difficult, but I mean, I’ve got 18 years of this now. I’m quite okay with saying it now, to anybody. That doesn’t bother me.
Yesterday, I was invigilating at a gallery In Gloucester, and I had to catch the bus home. I’d had to lock up the gallery, and my hands were just being really stupid and not doing anything. Anyway, so I got to the bus station, got on the bus, and realised I could not get my wallet out of my handbag. And my wallet had my best pass, and I just stood there and I thought, well, either the entire bus is going to be waiting for me, or, there was the bus driver and his supervisor testing him. So I headed over to the second bus driver, I said, look, really sorry, but can you go into my rucksack, and get my wallet out, because my bus passes in there? And he got it out for me and, put it through the machine, then put it back in the bag for me. I didn’t have a problem at all saying to him, I’ve got Parkinson’s, can you give me a hand, please? Wouldn’t have been able to do that 15 years ago, I don’t think.
Did you paint before the diagnosis?
I gained an A Level in Art but then I stopped doing it (painting and drawing) for years.
I only started up again when the kids were little, when Sam was little, and I’d had my diagnosis by then. So yeah, I mean, I really from age 18 to about 38, it didn’t do anything which is scary. It’s been fantastic, it’s helped me so much. If I’m having a bad day, I will go and do some art. It’s like a prescription sort of thing, you know, to take 20 minutes sitting at your desk drawing.
