"I dress up and I enjoy learning something new" - Sook Heng's story

In her career as a nurse, Sook Heng Adams supported many people with Parkinson’s. But her own diagnosis came as a shock.

"The symptoms started with changes in my bowel habits: diarrhoea and constipation from around 2010. I had 3 endoscopies and they couldn’t find anything wrong with me," she says.

"Around 2016 I lost my sense of smell, and the year after that I developed a tremor in my leg, but even that was put down to levels of thyroid hormones," she remembers.

It wasn’t until she saw a neurologist to deal with pain and difficulty walking after a bunion operation that the truth finally came out: "He sat me down and said: ‘Do you know you have Parkinson’s?’ I nearly fell over and I thought, he has to be joking," Sook Heng says.

"I was a nurse for many years, I have seen many people with Parkinson’s and I was nothing like them. I was just shocked."

The here and now

Five years on from diagnosis, her background in nursing and her tenacious attitude shape her approach to life with Parkinson’s. "I’m very aware of the progressive nature of the disease, having nursed Parkinson’s patients since the beginning of my nursing career," Sook Heng says.

 

I live for now and do as much as I can. I do the things I enjoy, have visited places I always wanted to go and generally live life to the fullest.

"It’s made me realise that I need to let go and not dwell on regrets or blame, which requires a certain degree of mental discipline."

It also means that her approach to Parkinson’s is based on the evidence. She explains: "I do not chase new drugs or new developments – although I am all for research and will continue to support it however I can. Instead I rely on what we know, here and now, is proven to help manage this condition.

"It’s twofold: you have to do exercise, and you have to take the medication in the prescribed way of taking it."

The first of those was relatively easy, for someone who already enjoyed going to the gym. Sook Heng’s routine includes high intensity interval training (HIIT), tai chi classes, and exercise to strengthen core muscles. 

"There are days I wish I didn’t need to go to the gym so religiously 4 times per week, but I have to because that’s what I need to keep my joints flexible and not stiffen up," she says.

Finding the most effective way to take Parkinson’s medication has been a joint effort between Sook Heng and her medical team.

"The hospital pharmacist only told me that following a meal high in protein, I needed to wait for 1 hour before taking the medication. “But I needed to know more," Sook Heng says. "I wanted to understand how meals and drinking interacted with the medication and how to ensure maximum absorption of the drugs I was taking.

"My current Parkinson’s nurse is very approachable and is willing to discuss things with me like medication timings."

Mood and attitude

As well as physical symptoms, apathy and low mood can make it difficult for people with Parkinson’s to exercise or socialise. "You can get low so quickly," Sook Heng admits. "If I get difficult news, especially about my family, then it is quite difficult for me to face the day. But I have to find the inner strength to get up and go, and carry on living my life.

"When I’m low in mood I have to dig very deep to find the energy and motivation to do any activity and often I keep repeating to myself, ‘it’s my medical condition’.

"I listen to upbeat pop music and watch videos that are of interest to me: fashion, dance and comedies. Having a supportive husband is very helpful, and once I manage to get out to the gym or tai chi class, I usually feel better afterwards."

 

It takes something drastic in life to change how one thinks about one’s approach to living. And I think that is what happened when I was diagnosed with Parkinson’s.

Something for myself

Since her diagnosis, Sook Heng has embraced her interest in fashion. "I enrolled in a course to learn more about personal styling. The stylists give you a formula to follow when shopping or choosing an outfit. You have to think outside the box, and this helps to keep my brain active.

"So I dress up, I take photos and I enjoy learning something new.

"I used to be tense and not pay too much attention to my appearance. Now, I see life on a different level, and I want to live my life to the fullest.

"I think the public really should be educated about Parkinson’s and that it is not the end of the world. You still get a chance to live a good quality of life and stay relevant."

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