"There's been a lot to get my head around" - Shirli's story
Navigating Parkinson’s in the almost 4 years since Shirli was diagnosed continues to be a challenge for her. Here, she talks honestly about the impact the condition has made and shares her ultimate aim - acceptance.
When Shirli was diagnosed with Parkinson’s, she knew very little about the condition. “My initial reaction was, ‘Oh ok, I’ve got Parkinson’s. I’ll take the medication and it’ll be fine,’” she admits.
“At that point, I didn’t know what it meant for me or for my future. But when I got home, I googled the condition and that’s the first time I realised there was more to it than I thought.”
Just 4 months later, the global pandemic hit. “I feel like lockdown lulled me into a false sense of security. I thought I was fine and had come to terms with it - but that was because I was mainly at home.
“Now it feels like I’m doing everything again for the first time, but this time with Parkinson’s. I feel I haven’t found a single thing I could do easily before that I can now.
“I’m trying to adjust and find my new normal,” says Shirli. “Right now, I’m not managing well, but I am managing.”
I am determined to keep my job and work for as long as I possibly can.
"I'm determined..."
Shirli works as a sales administrator and told her manager very quickly after her diagnosis. She felt well, but wanted to be open in case things changed over time as they now have.
“My employer has made reasonable adjustments. For example, I have a dictation machine which I use if my tremors are bad and I can’t type. I also no longer drive so get taxis to work.
“I cut down from full time hours to 20 hours a week. Then I went back up to 30 hours and then back down to 25 hours. Truthfully now, I can’t see myself increasing my hours again.”
For someone who has always had a very high work ethic, the impact of Parkinson’s on Shirli’s working life has been difficult.
“Working part-time doesn’t always feel like I am giving value to the company, but that’s my own perception and I need to change this,” concedes Shirli. “When I told my managers I had Parkinson’s, they said, ‘Well you’ve looked after us for 10 years, now it’s our turn to look after you.’
“I am not backward in coming forward and getting what I need if I feel that something can be done to assist me in my working role. I am determined to keep my job and work for as long as I possibly can.”
...now that I am working fewer hours, I am trying hard to go swimming twice a week. Reducing my hours at work has definitely helped me go more regularly.
Learning to love
Alongside her medication, Shirli knows physical activity can help manage Parkinson’s symptoms. It’s a message that is easier said than done.
“If you’re a person who’s always hated exercise, it’s difficult to know where to start and to find the right motivation,” admits Shirli.
“When I was working full-time, I was shattered and I found it difficult to find the time. But now that I am working fewer hours, I am trying hard to go swimming twice a week. Reducing my hours at work has definitely helped me go more regularly.
“I finish work, switch off my computer and ask my husband to drive me to the pool. If I don’t go right away, I’ll make excuse after excuse and won’t end up going.
“I still wouldn’t say I love it. But it’s nice to feel how I move in the water, and I do feel less stiff afterwards.”
I just wish it just wouldn’t keep changing. It’s like, ‘Oh, there’s a new symptom to deal with.’ Parkinson’s can be overwhelming on many levels - there’s been a lot to get my head around.
Limitations
As well as tremors and stiffness along with slowness of gait, Shirli can sometimes struggle finding the right word when she is talking to someone which she finds frustrating. She is also trying to manage bladder and bowel problems.
“I don’t need to go, until I do,” explains Shirli. “And then I move like a racing snail to get to the toilet.
“At home, I feel safe. I know if anything happens, I have everything I need. But if I’m in the office, I need to plan for the day. I take TENA Lady pads with me and try to empty my bowels before I leave the house. I don’t eat a lot beforehand or on the day itself, I don’t drink much.
“There are lots of things I won’t do because of these symptoms. I don’t like to do anything unless it’s planned. So if we’ve been out and then my husband suggests we nip somewhere else, I will say no and want to go home.
“I just wish it just wouldn’t keep changing. It’s like, ‘Oh, there’s a new symptom to deal with.’ Parkinson’s can be overwhelming on many levels - there’s been a lot to get my head around.”
At the moment, I think ‘I can’t do that,’ or ‘how’s that going to work?’ I need to start seeing the bigger picture.
"...like a different person..."
Shirli remains very aware of the before and after, 4 years on from her diagnosis.
“I feel like a different person - I’m not as strong or as confident as I was. There’s lots I can’t do anymore. It makes me cross and it makes me sad,” Shirli says candidly.
“At the moment, I think ‘I can’t do that,’ or ‘how’s that going to work?’ I need to start seeing the bigger picture.
“I’ve soldiered on for a while with these feelings, but have recently confided in my physiotherapist exactly how I’m feeling. She’s signposted me to counselling services.
“I’m very stoic and stubborn…insert your own words!” Shirli laughs. “But I wish I’d been more honest than I’ve been so far and get the help I need quicker.”
And what does Shirli want in the future? “I really hope I can achieve acceptance. Once I’ve accepted Parkinson’s, I can start making plans again, For now though, it’s baby steps.”