Parkinson’s disease can hit those in their 20s, affecting movement, mood and sleep
SINGAPORE — While it is largely regarded as a condition afflicting those above the age of 60, Parkinson's disease affects younger adults too. About one in eight patients have symptoms before the age of 50, and one in 20 before they reach 40
SINGAPORE — Her son was only 11 when she was diagnosed with Parkinson's disease at the age of 46.
A combination of pills helped homemaker Moo Fu Kang curb the uncontrollable tremors, muscle stiffness and balance problems temporarily. She would fit her household chores into two-hour blocks after the medication kicked in.
“Half an hour after taking my medication, I’d feel like an 18-year-old. That’s when I would rush to the market, cook and do everything I needed to do for my family. I didn’t waste any time because I don’t like to depend on others. I knew that when the effects wore off after two hours, I’d go back to moving as slowly as an 80-year-old ah ma (grandmother),” said Mdm Moo, now 59.
While she learnt to cope with her symptoms quickly, nothing could prepare Mdm Moo for the sense of isolation that came with the disease, a degenerative movement disorder caused by a loss of brain cells that produce brain chemicals that regulate motor functions of the body.
She had to give up her hobbies of table tennis and gardening. Travelling overseas and attending social events became a challenge for the once-active lady, whose extended family lives in Malaysia.
“Missing weddings and family gatherings made me sad. I couldn’t talk properly or even answer the phone during those ‘80-year-old’ moments. I think younger adults with the Parkinson’s (may have it worse because) they have a lot more to do for their families,” said Mdm Moo.
ONE IN 20 HAVE SYMPTOMS BEFORE THE AGE OF 40
While it is largely regarded as a condition afflicting those above the age of 60, Parkinson's disease affects younger adults too.
About one in eight patients have symptoms before the age of 50 and, one in 20, before they reach 40, said Associate Professor Prakash Kumar Manharlal, a senior consultant in neurology at the National Neuroscience Institute (NNI).
Those in the under-50 age group are said to have young-onset Parkinson’s disease. They make up a fifth of the 4,000 Parkinson’s disease patients seen at NNI, where the youngest patient treated was in his early 20s.
It is unclear what causes Parkinson’s disease.
Some genes could be linked to early-onset Parkinson’s. According to the Parkinson’s Foundation, research shows that 65 per cent of those who experience symptoms before age 20 have a genetic mutation.
In younger patients, symptoms may sometimes be mistaken for other conditions. For example, they frequently present with chronic arm or shoulder stiffness that are often misinterpreted as arthritis or sports injury before Parkinson’s is diagnosed, said Assoc Prof Prakash.
They are also more prone to developing dystonia, or involuntary muscle spasm, that leads to abnormal twisting of the hand, arm or foot, he said.
Symptoms worsen over time. “Eventually, the patients lose their ability to be independent in their daily living activities and depend on others in mobility, toileting, bathing, dressing and feeding,” said Assoc Prof Prakash.
IMPACT ON MOVEMENT, AS WELL AS SLEEP AND MOOD
Parkinson’s disease can also cause non-motor problems such as those related to sleep, mood, behaviour, memory and attention. Patients may experience sexual-related problems, pain, altered sense of touch as well as blood pressure and body temperature regulation issues.
Some of the symptoms can occur several years or even decades before motor symptoms show up.
“Progressive brain-cell loss and deficiency of brain chemicals can cause non-motor problems as well. They may also be due to medication-related complications,” said Assoc Prof Prakash.
While non-motor symptoms may be less visible, a two-year study by NNI found that they adversely impact patients’ quality of life far more than movement-related symptoms.
The top non-motor symptoms highlighted in the study are sleep-related issues (86 per cent), urinary (88 per cent) and mood problems (80 per cent).
However, they are not always brought up at doctor visits, possibly due to the lack of awareness or stigma.
Such symptoms can be particularly disruptive to younger patients, the majority of whom may still be working and leading a more active life. Sexual-related issues are also more common in young-onset Parkinson’s, said Assoc Prof Prakash, the main author of the study.
The findings could potentially modify treatment plans to improve quality of life for Parkinson’s patients.
Following the study, NNI piloted a one-stop integrated multidisciplinary clinic to manage motor and non-motor symptoms.
The aim is to identify and manage motor and non-motor issues at the same visit instead of having the patient make multiple trips to meet different healthcare providers. It received positive feedback from patients and caregivers, said Assoc Prof Prakash.
SOME UNDERGO DEEP BRAIN STIMULATION
There is currently no cure for Parkinson’s disease although researchers in Singapore and abroad are looking into better treatments.
Patients tend to deteriorate over eight to 25 years. For now, medications and therapies such as physiotherapy, speech and occupational therapy can help alleviate symptoms.
While treatment is largely the same across all ages, the approach is slightly different for people with young-onset Parkinson’s, said Assoc Prof Prakash.
“For example, they may postpone starting medications if symptoms are mild, or begin with other drugs other than levodopa (currently the most effective medication). This delays development of long-term levodopa-induced complications, which are more common in young-onset Parkinson’s,” he said.
When medications alone can no longer control symptoms or when complications from medications affect quality of life, patients may consider a surgical treatment known as deep brain stimulation, he said.
Electrodes are inserted into a targeted area of the brain and a small pacemaker-like device is surgically placed under the skin, beneath the collarbone. The device sends electrical signals to the part of the brain involved in motor function to decrease symptoms.
Patients are carefully selected for the treatment, which can potentially improve their level of function, said Assoc Prof Prakash.
It is also important for Parkinson’s patients to remain active, exercise regularly and build a strong support system with their family, friends and healthcare team, he added. They could connect with others with the same condition.
The Parkinson Society Singapore (PSS) started a support group called the Youthful Parkinson Circle in 2011 catering to members who are diagnosed before the age of 60, as well as newly-diagnosed individuals.
For people with young-onset Parkinson’s, being at a younger stage of their lives means they have different priorities, commitments and challenges from older individuals, said Ms Teh Choon Ling from PSS’ community partnership team.
“There was and still is a need to have a separate support group for young-onset Parkinson’s. Most of them may still be working. Some are single, married and/or married with kids. Having a separate group also means that they get to hear and share among peers who face similar issues, being in the similar phase of their lives,” said Ms Teh.
WALKING LIKE AN 18-YEAR-OLD
Mdm Moo’s deteriorating condition later left her wheelchair-bound whenever the medications wore off.
“The stiffness, back aches and pain, loss of strength and inability to get up at night to go to the toilet – I was suffering a lot. Sometimes, I asked myself, ‘Why me?’. While other people wanted things like a big house, a new car, all I wanted was to be able to walk properly again,” said Mdm Moo.
Initially fearful of brain surgery, Mdm Moo eventually underwent deep brain stimulation at NNI in 2017. The procedure required her to be awake and she had to perform tasks, such as lifting her arm, at specific points during the surgery.
The treatment drastically eased the uncontrollable tremors, and Mdm Moo was able to reduce her medication dosage.
“I can walk properly again. It is as if I am given a new life,” she said.
Besides encouraging those living with the disease to remain positive in their darkest times, Mdm Moo also hopes to spread the word about deep brain stimulation.
“Even though I was told that the treatment would last only about 10 years on average, I think it is better than doing nothing. Who knows, a new treatment might come up after 10 years,” she said.
“Right now, I will treasure what I have and do everything I was not able to do in the last 13 years, like visit my family members in Malaysia, travel and do more work in church. Recently, I even went to the new Jewel Changi Airport and walked for about seven hours – like an 18-year-old,” she said with a smile.