Managing Parkinson's and other conditions: Emma's story
Most people with Parkinson's have at least 1 other long-term condition too. Emma explains how she balances the demands of multiple conditions, how they interact, and navigating the healthcare system.
Emma was diagnosed with Parkinson’s in July 2016 at the age of 46, at the same time that her GP diagnosed
her as having gone into menopause.
In 2025, Emma was also diagnosed with polymyalgia, level 2 chronic kidney disease, and MGUS, which means she has an increased risk of a blood cancer called myeloma.
The first sign of polymyalgia was pain in Emma’s shoulders and hips. Initially, she put it down to Parkinson’s, which had given her severe pain in her head, back and neck before she started on levodopa.
Balancing different conditions
She’s far from alone. In a 2024 study of over 500 people with Parkinson’s, more than 96% of them reported that they had at least 1 other health condition, including high blood pressure, diabetes, arthritis or lung disease.
Emma says managing multiple conditions can be a balancing act. "The steroid treatment for my polymyalgia makes me want to eat more, so I’ve put on a stone since I started. That, and the pain I experience, makes it harder to exercise, which isn’t good for my physical or mental health."
Emma also finds that polymyalgia pain, and indigestion caused by the steroids, can make it hard to sleep, "which adversely impacts my Parkinson’s. They’re all intertwined."
And with a condition like Parkinson’s, where everyone's experience is different, it can be hard to know which condition is causing any specific symptom. Emma’s advice is: "if in doubt, tell your Parkinson’s nurse or neurologist everything and ask their view on whether something is likely to be due to Parkinson’s.
"I also use the NHS app and I find scientific papers which look into the links between, for example, shoulder pain and Parkinson’s. As a lay person, they can be hard to read, but I highlight the bits I think are relevant and take them along to my appointments with my different consultants."
Better appointments
As a self-confessed "lists and notes person", Emma has a system for getting the most out of her appointments.
"I make sure I know what I want to achieve before the appointment. If it’s not urgent, I pick the right GP for the condition I want to talk about - in my GPs’ practice, I’ve worked out who’s better for, say, menopause issues, as compared to pain.
"And I have a notebook where I record my medical information, so it’s all in one place and I can refer to it in consultations."
Before an appointment, I list all the things I think my GP, nurse or consultant needs to know and all the issues I want discussed, and I ensure I’ve mentioned them all before I leave.
"It can also really help to take someone with you. They can listen, prompt, and take notes. And even better if it’s someone who knows you well or lives with you, because they may have noticed things you haven’t."
Positive mindset
At the moment, Emma’s priority is getting her polymyalgia and Parkinson’s in balance. “I’ve decided to put the chronic kidney disease in an imaginary box on a shelf for now, since there doesn’t appear to be much I can do about it at the moment.
"And the MGUS is being monitored with a blood test every 6 months, so in between tests I try to forget about it. My theory is it’s only worth worrying about things you can actually change."
To keep her many medications working as well as possible, she’s recently invested in a set of 7 stacking pillboxes, 1 for each day of the week, and each with 4 sections for breakfast, lunch, afternoon and evening.
"Now I only have to fill them up once a week, I use that day to check if I need to reorder any tablets. And I can easily fit a day’s pillbox in my handbag or pocket if I’m going out."
Getting active
As well as the medication, Emma is convinced in the power of physical activity to manage her Parkinson’s symptoms. "It’s really easy to skip a workout when you’re busy, tired or just not feeling your best,” she admits. “For that reason I sign up for classes and commit myself in advance. I also meet up with my friends to walk our dogs, ideally at high speed and uphill, 2 or 3 times a week."
Her black Labrador, Ember, has been a great influence, even if she does have a bad habit of eating any fallen apples she finds on her walk. "She makes sure I get outside even when the weather is bad," Emma says, "and she gives me a good excuse to be kind to myself and relax in the evenings, which I was never very good at before she arrived."