Madam Guo, 55, has been living with Parkinson disease (PD) for a decade. Over the years, she has adjusted her daily routine so that she can continue to do activities she enjoys during her ‘on’ state and rest during her ‘off’ state.
In the early stages of PD, Mdm Guo was able to live life as usual, but as her condition progressed, she slowly found it harder to control her movements. In her ‘off’ state, there were times when she did not have the strength to hold a sheet of paper. Walking became difficult, she suffered from leg cramps, and she ended up drooling when she spoke.
CONTROLLING SYMPTOMS WITH SURGERY
A few years ago, Mdm Guo had deep brain stimulation, a surgery to implant a device that sends electrical signals to the brain to help control her movements. Since then, her mobility during her ‘off’ state has improved. However, there are still times during the day when she feels weak and tired.
MAKING THE MOST OF BEING ‘ON’
In her ‘on’ state, Mdm Guo seems like a different person. She is able to move around with ease, and can earn a living doing flower arrangements and packing noodles at home for distribution at a temple. She also enjoys hobbies, which she does in her ‘on’ state. These days, Mdm Guo learns new recipes online, and recently learned to make chwee kueh.
The products of Mdm Guo's handiwork during her 'on' state include food packing, chwee kueh, and flower arrangements (top of page)
GRATEFUL FOR HELP
She lives with her helper, who is her main caregiver and helps her with more strenuous household chores. “I’m thankful for my helper. Parkinson is not easy on both the patient and caregiver, so it is important for both parties to understand and be understanding of each other,” she shares.
To make the most of her ‘on’ states, Mdm Guo plans each day with care. She is mindful of when her medicine will wear off, and slows down her activities nearer her ‘off’ state.
NAP LESS, SLEEP MORE
One tip that works for Mdm Guo is to avoid lying down during her ‘off’ state, as this makes her feel more tired. As she sometimes experiences insomnia, a non-motor symptom of PD, she tries not to sleep during the day so that she can sleep better at night. To keep her spirits up, she makes it a point to meet friends for a meal, sometimes indulging in her favourite cheat meal once a week — laksa!
This article first appeared in
NeusLink Issue 14 - click to download!
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