Today is World Parkinson’s Day, which this year marks the 200th anniversary of the publication of James Parkinson’s “Essay on the Shaking Palsy”, which was the first official recognition of Parkinson’s as a health condition. April 11 is James Parkinson’s birth date.
The European Parkinson’s Disease Association and Parkinson’s UK have launched a #UniteForParkinsons campaign to raise international awareness.
MENG CHUO WONG was diagnosed with Parkinson’s disease in February 2015, at the age of 65. By the time he got the diagnosis, his handwriting had become so small he could hardly recognise it as his own.
He finally realised that other symptoms he had been experiencing in the previous five or six years – sleeplessness, being unable to sing, dry eyes and blurred vision, a dry and itchy throat, stiffness, constipation, and slowing down – were all indicators of Parkinson’s.
A dedicated social and environmental activist, Wong very quickly went into action; he got in touch with other people he knew who had Parkinson’s and talked to them. He decided to set up an organisation to bring people with Parkinson’s together.
Wong, who lives in Sibu in the Malaysian state of Sarawak on the island of Borneo, and is a former Methodist minister, is still the driving force behind the Sibu Parkinson Society (SPS), which now has 120 members.
He says Parkinson’s is not a disease to be fought, but to be faced. He prefers to talk about People with Parkinson’s (PwPs); “people with shortcomings, not people who are sick”.
Meng Chuo Wong with SPS committe member Ling Kuok Seng.
Wong emphasises the importance of social interaction and says isolation causes people with Parkinson’s to degenerate more quickly.
He still travels widely, and goes to the far reaches of the Sarawak forest. He continues to drive, and to cycle around Sibu.
Parkinson’s disease (PD) is a chronic, progressive, degenerative neurological disorder, which involves an imbalance between dopamine and acetylcholine, two chemicals involved in transmitting signals from the brain.
In Parkinson’s, cells in a part of the brain called the substantia nigra, which produces dopamine, die off. The cause of the cell death is not known, although a combination of genetic and environmental factors is suspected.
The resulting imbalance can cause involuntary or decreased movement, rigidity, and abnormal walking and posture.
While James Parkinson’s essay was published in 1817, it wasn’t until 1861 that it really did the rounds, and a French neurologist, Jean Martin Charcot, separated the disease from other neurological disorders and named it Parkinson’s disease.
Parkinson’s is the second most common neurodegenerative disorder after Alzheimer’s. It affects one in 100 people over the age of sixty. While the average age at onset is 60, people have been diagnosed as young as 18.
An estimated four percent of people with Parkinson’s are diagnosed before the age of 50 and about 85 percent of those diagnosed are over the age of 65.
Generally, when someone is diagnosed with Parkinson’s before the age of 50, it is considered to be early onset. Juvenile onset refers to a diagnosis below the age of 20, and young onset from age 20 to 40.
Anyone can get Parkinson’s, but it is slightly more common in men than women. The disease affects everyone differently. The types and severity of symptoms and the rates of progression differ from person to person.
There is no objective test, or biomarker, for Parkinson’s, so the rate of misdiagnosis can be relatively high, especially when the diagnosis is made by a non-specialist. Estimates of the number of people living with the disease therefore vary, but recent research indicates that about ten million people have Parkinson’s worldwide.
Only about 10 percent of Parkinson’s cases have been linked to a genetic cause. While most cases occur without a known cause, some are induced by drugs or environmental toxins.
Certain drugs such as phenothiazines, butyrophenones, and tetrabenazine can cause Parkinsonian symptoms that are usually reversible
Toxins such as manganese dust or carbon disulfide may also lead to disease symptoms.
There have been very few cases, but the recreational drug MPTP can cause Parkinsonism¹.
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Two types of medication are prescribed to treat Parkinson’s: levodopa drugs, which have been in use since 1967 – and are converted into dopamine in the body, and dopamine agonists, which were introduced in 2012 and stimulate the person’s own dopamine function.
Wong takes a low dose of a dopamine agonist called Sifrol (a brand name for Pramipexole).
Levodopa is now used much less frequently than dopamine agonists, and rarely for early-onset Parkinson’s.
It has a long list of side-effects, ranging from agitation, anxiety and confusion to numbness, difficulty in swallowing, dizziness, nightmares, and hallucinations.
It can cause unusual and uncontrolled movements of the body, including the face, tongue, arms, hands and head, clenching or grinding of teeth, mouth watering, nausea and vomiting.
One of the drug’s stranger side-effects is that it can cause compulsive behaviour such as excessive gambling, shopping, or internet use, or increased sexual impulses.
Levodopa is frequently given in conjunction with carbidopa, which is a decarboxylase inhibitor. Carbidopa prevents levodopa from being broken down before it reaches the brain, which allows for a lower dose of levodopa to be prescribed and reduces nausea and vomiting.
Two of the PwPs in Sibu now have hallucinations, most likely caused by their medication.
One of them is Yii Kwok Hua (pictured left), who is now 72, and has had Parkinson’s for more than forty years. He has had hallucinations for the past year.
Even though Hua was warned that this was likely to happen eventually, it is nevertheless distressing when his mind conjures up creatures that are not there.
Most of time, Hua knows that the hallucinations are a trick of his mind, but sometimes he is confused and thinks they are something real.
At the start, however, the levodopa and carbidopa helped him to sleep and stopped the nightmares he had been having.
Less than a year ago, former government official Fam Qian Bao, also from Sibu, was still active, but he is now very weak, and is also having hallucinations. He is very restless and has insomnia.
The situation is clearly very difficult for Bao’s wife, Kong Choon Lan. “He used to be a very humorous man,” she said. “He was a very caring father, and a caring husband. For the past five years, he has just wanted to stay at home.”
The treasurer of the Sibu Parkinson Society, Ling Mei Ling, started developing Parkinson’s symptoms in 2004, when she was in her early thirties, but only accepted the diagnosis and started taking medication in 2012.
Ling has been taking Levodopa (or Madopar as it branded in Malaysia) since then. She is relieved to be able to walk properly and says she has no side-effects from the medication.
Her older brother also developed Parkinson’s in his early thirties.
“When my brother pointed out that I had the same symptoms as him, I didn’t want to accept it. I didn’t want to admit that I had Parkinson’s.
“Now I am happy to be part of the Sibu society, and to be able to help other people. I am able to face the problems of the disease better than my brother is able to. He is getting increasingly weaker.”
One of the difficulties in a small town like Sibu is that people are sometimes incorrectly diagnosed.
There is no neurologist in the town, and only one public neurologist in the whole of Sarawak, with its population of 2.6 million. If people can afford it, they go to a private neurologist in the bigger town of Kuching. Some Sibu society members fly to Malaysian capital, Kuala Lumpur, or to Singapore, to get appropriate treatment.
Non-specialists simply give patients levodopa as they don’t have knowledge of other medication.
Some people with Parkinson’s undergo Deep Brain Stimulation (DBS). Introduced in 1987, the surgery has been used to treat chronic pain, obsessive compulsive disorder, and essential tremor (a neurological disorder that causes involuntary and rhythmic shaking). It was approved for Parkinson’s disease in 2002.
The value of exercise
An important gathering for PwPs is the World Parkinson’s Congress, which is held every three years. It was held last year in September in Portland, Oregon, in the United States.
Wong went along, and is still disseminating the knowledge he gained. He says he came away from the congress very energised.
“It was a very enriching experience for me. It was not just a research-based conference. There were not only scientists there, but also many patients and caregivers. We did a lot of physiotherapy and exercise. There were tai chi and yoga sessions in the morning.
“It has been confirmed by everyone concerned that physiotherapy and exercise have huge benefits; more so than the medication for Parkinson’s.”
Exercises not only improve people’s movement; they also help them deal mentally and emotionally with some of the problems they face.
The Sibu society members get together for regular tai chi, water therapy, yoga, and other physio exercises.
Wong also does voice exercises to improve his speech. He is following the Lee Silvermann Voice Therapy (LSVT) method, which encourages people with Parkinson’s to “speak LOUD!”.
The idea is not to train people to shout. LSVT aims to achieve healthy vocal loudness with no strain.
Doing tai chi and other exercises has improved Wong’s balance, and he falls less. He does, though, have a problem with foot coordination. He has trouble getting one of his legs moving when he gets up after being seated. This is known as freezing of gait (the temporary, involuntary inability to move). He is also now having trouble typing, and is very slow on the keyboard.
According to the National Parkinson Foundation, 38 percent of PwPs fall each year because of freezing of gait.
Sibu society member Robert Wong, who is now 64, and was diagnosed with Parkinson’s in 2005, says exercises improve his walking, and help him to sleep better.
One of the hardest things for him is that he is no longer allowed to drive. He used to be a sales representative so travelled a great deal, and he misses having that independence.
“You cannot do what you want to do. Wherever you go, you need somebody to go with you.”
Some innovative solutions have been developed to combat freezing of gait. Writer Geoffrey Chang highlighted some of them in an article for the online magazine Parkinson’s Life.
One of the innovations is “Path Finder”, invented by design engineering student Lise Pape, whose father has Parkinson’s. It’s a shoe that projects laser lines to trigger walking and thus prevent freezing of gait.
The laser cues are activated by the pressure created when the wearer touches down on the ground.
The standing foot projects a line for the opposite foot, i.e. the left foot will project for the right foot to take a step forward and vice versa. It is believed that the visual cues are able to trigger gait by focusing the attention of the wearer.
Another innovation Chang writes about is the “Staircase illusion”. Some people with Parkinson’s walk smoothly up and down stairs, but experience freezing of gait on flat ground. Product designer Mileha Soneji created a flat staircase illusion that people can walk across.
Results have shown that users are able to walk more smoothly on the areas where the illusionary staircase is placed.
There is also a vibrating walking stick, “Walk to Beat”, created by Neha Chaudhry, which detects a pause in motion and sends rhythmic vibrations to the handle of the stick, helping the user to regain his or her natural walking motion.
Chang has also written about eight smart Parkinson’s apps, including a video app that demonstrates more than fifty Parkinson’s-friendly exercises and “Parkinson’s EasyCall”, which makes it easier for people with dexterity issues to make calls on fiddly touch screens. There’s also an app that uses iPhone sensors to measure and track patients’ symptoms, including tremor, balance, and gait.
Another very innovative app is “Beats medical”, which was developed by a young Irish physiotherapist, Ciara Clancy.
It’s a paid app that provides an auditory cue that overcomes such problems as freezing gait. Each day, PwPs do a two-minute assessment via their mobile phone then a metronome beat is tailored to their needs and is delivered on the phone.
The delivery of auditory stimulation is thought to override dysfunction in the brain and cue the body to move. In addition to reducing episodes of freezing gait, metronome therapy has been shown to improve stride length and walking speed and improve overall mobility.
Rhythm – in the form of a drum circle – is something that has been of great help to PwPs in Kuala Lumpur.
Better Training Solutions director John Hagedorn runs regular drum circles at the KL-based Malaysian Parkinson’s Disease Association (MPDA), which was set up 1994 and now has about 300 active members.
In an article entitled “Find Your Beat: Therapeutic Drumming for Parkinson’s Disease”, published in September 2015, Kelsi Carolan from the Beth Israel Deaconess Medical Center in Boston in the US says that finding an outlet for self-expression is vital for individuals with medical illnesses such as Parkinson’s.
“Music therapy has potential as a complementary treatment for Parkinson’s disease, and therapeutic drumming is one form of music therapy that may be of particular value,” Carolan writes. “It offers engagement in physical activity, but is accessible enough to be possible for those with limited mobility and phonation, and without prior musical experience.”
Carolan says that drumming in a group setting speciﬁcally for individuals with Parkinson’s disease offers the opportunity for socialisation, and provides a safe space to engage in fun, meaningful self-expression through music-making.”
In a study by Pacchetti et al. in 2000, patients with PD who participated in music therapy sessions showed an improvement in quality of life, as measured on the Parkinson’s Disease Quality of Life Questionnaire. This improvement appeared to be due to variations in the emotional and social functioning scores, Carolan writes.
Pacchetti et al. stated that patients with PD who participated in music therapy reported an increase in positive feelings. Music therapy encouraged social activity, emotional expression, and increased engagement, they said.
In her article, Carolan writes about a therapeutic drumming programme, ‘‘Find Your Beat’’, offered to patients with Parkinson’s disease at a large teaching hospital in the US. The 13 participants with PD ranged in age from 59 to 78, with a mean age of 70.
“The response to ‘‘Find Your Beat’’ was overwhelmingly positive, as measured by post-class surveys and phone interviews conducted by this author,” Carolan writes. “Overall, participants indicated that they enjoyed the experience and appreciated the opportunity to spend time with others with Parkinson’s disease.
“Some participants found the sessions helpful for physical symptoms such as upper body stiffness and tremors, and participant comments indicated a positive impact on mood.”
Parkinson Wellness Recovery
There is an organisation in Tucson, Arizona, in the US – Parkinson Wellness Recovery! (PWR!) – that has developed exercise programmes specifically designed for PwPs, and educates healthcare and fitness professionals to be specialists in exercises for Parkinson’s. It also trains care partners, family members, and friends of PwPs.
Three PwPs and the CEO and founder of PWR!, Becky Farley, who is an expert in neurological rehabilitation, have launched a “Community ProActive THerapy (PATH) for PWP” petition.
They recommend a series of initiatives to foster new healthcare paradigms that allow PwPs to get better and stay better. These include expanding awareness of the need for community programming “to counteract the withdrawal, stress, and inactivity that are pro-degenerative and create the greatest barriers to exercise and participation in life”.
The group is calling for PWPs to have global access to a national directory of appropriate exercise resources.
They want funding to be committed to multi-site collaborative research to demonstrate how “proactive and ongoing community models, integrated with healthcare services, may improve quality of life and mobility, slow disease progression, and impact healthcare savings”.
Michael J. Fox
One of the best-known personalities who has Parkinson’s, and is a powerful advocate for those with the disease, is the actor Michael J. Fox.
AARP The Magazine – an American bi-monthly, published by the American Association of Retired People – featured him on the cover of its April/May issue.
Fox discussed the range of emotions he has experienced in the 26 years since he was diagnosed with Parkinson’s, the strength and support of his family, and misconceptions about the disease.
Fox says in the interview with Andrew Corsello: “After I made my diagnosis public back in 1998, I began to realize that Parkinson’s gives you two things to reckon with.
“You deal with the condition, and you deal with people’s perception of the condition. It was easy for me to tune in to the way other people were looking into my eyes and seeing their own fear reflected back.
“I’d assure them that ‘I’m doing great’ – because I was. After a while, the disconnect between the way I felt and the dread people were projecting just seemed, you know, funny.”
After Fox was diagnosed with Parkinson’s, the boxer Muhammad Ali, who had Parkinson’s for 32 years until he died in June 2016, telephoned him at home.
Fox told the AARP magazine that he welled up and almost wept listening to Ali telling him “Now that you’re in it, we’ll win this fight.”
Muhammad Ali’s daughter at the 2016 World Parkinson’s Congress.
In February this year, as part of the Michael J. Fox Foundation‘s 2017 Parkinson’s Policy Forum, Fox joined more than 200 Parkinson’s advocates on Capitol Hill to meet lawmakers and discuss access to care issues affecting the PD community.
Fox met bipartisan members of the House of Representatives to urge lawmakers to support policies that safeguard federal research funding and access to care for the more than 1 million Americans living with Parkinson’s.
Fox meets bipartisan members of the House of Representatives. Photo by Joe Shymanski for The Michael J. Fox Foundation.
On average, Fox points out, Parkinson’s patients in the US spend between $12,000 and $17,000 a year from their own savings to handle needs related to the disease.
Eighty percent of Parkinson’s patients are on Medicare, Fox says. “If the Affordable Care Act and even Medicare come under the knife, that’s not political, that’s our lives.”
Thirteen of Fox’s 18 Emmy nominations and five of his nine Golden Globe nominations came after his diagnosis.
He says that Parkinson’s has actually made him a better person; “a better husband, father and overall human being”.
One of the other leading voices in the Parkinson’s community is the president of The Cure Parkinson’s Trust, Tom Isaacs, a former surveyor who was diagnosed with Parkinson’s in 1996, at the age of 26.
In 1999, Isaacs decided he would walk from John O’Groats to Lands End to raise funds for research into Parkinson’s. Staggered by the amount of support he received, he decided three years later to attempt the bigger challenge of walking 4,500 miles around the coastline of Britain. He also climbed three mountains, and ran in the Flora London Marathon for Parkinson’s.
Isaacs wrote a book about his Coastin’ walk, entitled “Shake Well Before Use”, and raised £350,000 (about US$435,000) for Parkinson’s research.
Two years after Coastin’, Issacs co-founded The Cure Parkinson’s Trust.
Advances in stem cell research
One of the main focuses for scientists working on Parkinson’s is stem cell research. The Michael J. Fox Foundation played an early role in supporting it.
Scientists have discovered that embryonic stem (ES) cells, which can generate all the major cell types of the body, could provide a robust source of dopamine neurons.
Considerable progress has been made in creating dopamine-producing cells from stem cells.
Cell models of Parkinson’s disease generated from stem cells could help researchers screen drugs more efficiently, and study the underlying biological mechanisms associated with Parkinson’s.
The main challenges are how to grow large quantities of dopamine-producing nerve cells, how to make sure new nerve cells survive, how to get transplanted cells to connect and work normally inside the brain, and how to control newly transplanted cells to prevent tumours forming.
Researchers at the Harvard Stem Cell Institute (HSCI) at the Ann Romney Center for Neurologic Diseases at Brigham and Women’s Hospital in Boston have, meanwhile, shed new light on the underlying mechanisms of Parkinson’s disease.
Decades of research have established that neurodegenerative diseases like Parkinson’s and Alzheimer’s are caused by the clumping or misfolding of certain proteins in specific brain cells; and there are a growing number of genes that predispose patients to these diseases.
Searching for biomarkers
The Michael J. Fox Foundation is also co-funding the Parkinson’s Progression Markers Initiative (PPMI).
The $60-million study, which is being conducted at 33 clinical sites in 11 countries, was launched in 2010 to find biomarkers – disease indicators that are critical missing links in the search for better PD treatments.
Nearly 1,000 participants are contributing data and biosamples into the most robust Parkinson’s database and specimen bank ever created.
These resources are paired with an online system that enables researchers to access data and samples for complementary PD research in their own laboratories.
PPMI researchers are studying the connection between Parkinson’s disease and mutations in the LRRK2 or GBA gene.
Individuals from certain ethnic groups are more likely to carry a mutation in LRRK2 or GBA. In addition, people with Gaucher disease have two copies of the GBA mutation, and their family members may have one.
Mutations in LRRK2 are also more common in people of Basque and North African Berber descent.
Energised by the community
Michael J. Fox says he is energised and empowered by the Parkinson’s community.
Wong would echo this. He says studies show that isolation can make people deteriorate more quickly.
“The Sibu society provides a venue for people to come and meet; to come together and share and learn from each other; to support each other.”
Some people resist joining an association, Wong says. “I think some people don’t want others to know that they have Parkinson’s.
“They still see the disease as a kind of curse; something that is bad for the family name, especially when they consider this as being something that is genetically inherited and could affect other family members.
“They prefer to keep silent and not to join the society and be known by other people.”
In some cases, it is relatives who get in the way of people with Parkinson’s joining a support group. “I know at least two very rich families who didn’t want people to know that a family member had Parkinson’s,” Wong said.
The Sibu society is open to anyone with neurological problems, including people who have had a stroke and those with the dystonia movement disorder, or dementia.
“Even elderly people who have no neurological problems can benefit from joining in with our activities,” Wong said.
Wong says there is still a great lack of community awareness about Parkinson’s, and a lack of community care for the elderly and the sick.
“There is a lack of understanding in the society in general, so we try to promote awareness by giving bi-monthly public talks.”
Also, Wong says, younger people are so engaged in their work that they have no time to devote to family members with special needs. Often the children of older people are working overseas.
Motor and non-motor symptoms
Wong says that attending the World Parkinson Congress helped him to gain a better understanding of the motor and non-motor symptoms of Parkinson’s.
The most common motor (movement-related) problems of Parkinson’s are tremors, muscle rigidity, and slowness of movement (bradykinesia).
“Not all people living with Parkinson’s tremor,” Wong said, “and most PwPs tremor only at rest, or when their limbs are not in use.
“There may be some tremor when the person is eating, but that could be the development of other neurological diseases. Most of my friends do not tremor while their hands and legs are in use.”
The diagnosis of Parkinson’s disease is based on the presence of motor problems. Imbalance (postural instability) with falls occurs only in the later stages of the disease.
Some patients with early-stage Parkinson’s disease experience motor symptoms on only one side of the body.
Though the primary symptoms of Parkinson’s affect movement, there are other associated non-motor symptoms, which can include depression, anxiety and other emotional changes; cognitive abnormalities; sleep problems; difficulty in swallowing, chewing and speaking; and urinary problems or constipation.
The most typical speech and voice problems in people living with Parkinson’s are low volume (hypophonia) and word-finding problems.
In an article published in Parkinson’s Life last year, speech therapist Mary Spremulli from Florida in the US, explains that, with hypophonia, there may also be a change in perception.
“The voice has become softer, but to the individual it still feels normal, and a request to be louder is often met with resistance or a comment such as ‘that feels like I’m shouting’.”
Patients with cognitive-linguistic decline can experience word finding problems, reduced attention and concentration, and reduced memory, Spremulli says.
“If you combine these problems with soft voice, conversational speech becomes a real challenge, and many people may start to withdraw from social interactions.”
Some people with Parkinson’s, and particularly those who have undergone DBS, also experience a change in speech rate. Spremulli refers to this as “run- away speech”, meaning that the person feels it is impossible for them to slow down their rate.
In an article about environmental factors and Parkinson’s, originally published in 2011, the director of clinical research at the Parkinson’s Institute and Clinical Center in New York, Caroline M. Tanner, said scientists generally agree that Parkinson’s cases result from the interaction between a person’s underlying genetic make-up and his or her life activities and environmental exposures. These interactions can be quite complex.
“Some environmental exposures may lower the risk of PD, while others may increase it,” Tanner wrote. “Similarly, some people have inherited a genetic make-up that makes them more or less susceptible to the effects of toxicants, or poisonous agents, than others. The effect of a combined exposure can be greater – or lower – than a single exposure.”
This means that the particular combination of factors leading to PD is likely to be unique for each person.
Traumatic brain injury that results in amnesia or loss of consciousness has been associated with an increased risk of developing Parkinson’s years after the injury, Tanner adds.
Parkinson’s prevalence is higher in the Inuit population in Denmark than it is among other Danes, she says. This possibly reflects a greater dietary intake among the Inuits of persistent organic pollutants such as polychlorinated biphenyls (PCBs).
“In the agricultural California central valley, living in a home near to fields where the pesticides paraquat and maneb were used was associated with PD in one report.
“Another study reported greater incidence of PD in urban areas with high levels of industrial emissions of the metal manganese, and possibly copper.”
Of all the chemical exposures that have been linked to Parkinson’s, pesticides have been reported the most consistently, Tanner says.
“Recent research has shown higher rates of Parkinson’s among people who were exposed to pesticides over a long period of time as part of their work.”
Home pesticide use had been associated with PD in one report, Tanner added.
“Although few studies have identified specific pesticides as leading to PD, those that have been so identified include the insecticides rotenone and permethrin (used in clothing and mosquito netting to kill mosquitos); organochlorines such as beta-hexachlorocyclohexane (beta-HCH – used in the United States from the 1950s to the 1970s); and the herbicides paraquat and 2,4- dichlorophenoxyacetic acid (2,4-D).”
It is important to note that most people who are exposed to these pesticides do not go on to develop Parkinson’s, Tanner says.
Wong is trying to get a researcher to study the lack of Parkinson’s in indigenous communities. “For the past forty years I have been going around in the indigenous communities in Sarawak and I have never seen anyone with Parkinson’s.”
There also appears to be a lack of Parkinson’s within the indigenous communities in India, Wong says.
“Perhaps there is some kind of genetic reason; and also an environmental reason – not just the physical environment, but also how people deal with their environment.
“For instance, people in the interior of the country navigate the rivers. You really need your brain and strength to navigate a boat in the rapids.”
The Sibu society’s medical advisor, neurologist Dr Jee Rou Chen, believes that how we live our lives affects our health. “If we restrict ourselves in our mind, we cannot feel happy. Our brain may change; it will degenerate.”
He cites the example of yoga; the happiness you can see on the face of someone who is enjoying the practice.
Indian Ocean Row 17
One of the more unusual research projects being undertaken starts in June, when Robin Buttery from Leicester will set off on a voyage that will take him 3,600 nautical miles across the Indian Ocean.
Buttery (pictured left), who was diagnosed with Parkinson’s disease in June 2015, just before his 44th birthday, will be accompanied by three other rowers.
The “Indian Ocean Row 17” team will attempt to beat the current world speed record for the crossing from Western Australia to Mauritius, which is currently 71 days.
Scientists from The Movement Science Group at Oxford Brookes University in England will monitor Buttery via an on-board camera and use one of the other rowers, Billy Taylor, as a control subject.
Professor Helen Dawes, who leads the research group, says the scientists will collect data on wellness and symptoms before and during the voyage to see how these are affected by the challenge.
The researchers will be able to learn more about Parkinson’s and exercise, and how to manage medication and nutrition in order to optimise the performance, health, and well-being of PwPs.
The rowers aim to raise £100,000 (about US$124,000) to raise awareness of, and fund research into, young-onset Parkinson’s.
There will be live streaming from the boat.
Confusion with Alzheimer’s
Meng Chuo Wong points out that many people confuse Parkinson’s with Alzheimer’s. “One of my childhood friends, every time she meets me, she asks “Do you recognise me?
“And sometimes people ask me ‘Are you better?’. I tell them. ‘No, I’m not getting better, but I manage.
“I tell my friends ‘Don’t expect me to be better. I cannot be cured’. At this moment in time we don’t have any scientific proof that Parkinson’s can be cured.”
Wong says many members of the Sibu Parkinson Society have been persuaded by direct sales people to spend thousands of ringgits on various nutritional supplements, which may have benefits, but are not going to provide the cure that the sales people tell them they will.
Wong has great belief in the body’s own healing power. Acupuncture from Ngieng Sheng Harng, who gives free sessions to people with Parkinson’s, has boosted his energy levels, and he has also enriched his diet.
People with Parkinson’s need to make sure they are getting enough anti-oxidants, which promote the body’s production of dopamine.
Getting sufficient rest is also very important, and this can be difficult when sleep patterns are disrupted.
Sleep disturbances experienced by PwPs include sleep fragmentation, daytime sleepiness, nocturnal limb movements, difficulty rolling over in bed, and parasomnias, such as REM Sleep Behaviour Disorder.
These disorders are influenced by motor symptoms, medications, and by other non-motor symptoms, such as mood, memory, or hallucinations.
Wong says the Sifrol helps to improve his sleep quality, but he needs to reduce his responsibilities so as to get more rest.
One of the busiest Parkinson’s activists in Malaysia, and a campaigner on many other issues as well, Wong is rarely in bed before 11h30 p.m. and is usually awake by 5 or even 4 a.m.
There is a Parkinson’s radio station, Radio Parkies, run from Belgium, which was launched in 2010 and now has DJs in 12 countries: the US, Australia, Belgium, Denmark, the United Kingdom, Germany, Spain, Romania, Iceland, France, Malaysia, and Nepal.
Radio Parkies’ Andy Butler (pictured left), who is based in England, recently visited Malaysia to train new DJs for the station. He went on a nine-day whistle-stop tour of the country with a group of eight PwPs and caregivers, visiting most of the Parkinson’s groups, including the one in Sibu.
After a trip to Nepal earlier in the year, he’ll be heading next week to New York, where he’ll join the Parkinson’s Unity Walk in Central Park. In May, he’ll be in Denmark for the Copenhagen Unity Walk, and he’s then off to Iceland. He’ll be heading back to Malaysia in July, and to Australia in August.
When his father was diagnosed with Parkinson’s in 2000, Butler gave up work to live with him and look after him.
“When I first met the Parkinson’s nurse I was amazed that, with the millions and millions of pounds that have been spent on research, people are still being treated with a drug that was invented fifty years ago.”
Over the four years that he looked after his father, Butler spent four hours a night researching Parkinson’s, online and in books, and talking to people on Facebook about the disease. After his father died, he started to visit people to help and support them.
Having started off knowing nothing about social media, Butler is now an extremely active advocate for people with Parkinson’s, with contacts around the globe. His Parkinson’s People Facebook page is now followed by more than 30,000 people.
One of the great things about Radio Parkies, Butler says, is that it’s an hour during which people who are perhaps very isolated, far away from support groups, can connect with, and listen to, somebody with Parkinson’s.
“In Iceland, for instance, people are logging in to the station for company during the very long winters.
“There are lots of very small towns in America or Australia where someone may be the only person with PD. As long as they have the Internet, they can log on and listen.”
People are also then hooked into a system via which they can ask for help if they need it.
Famous people who had Parkinson’s include the late Palestinian leader Yasser Arafat, the painter Salvador Dalí, General Franco, Pope John Paul II, and Chairman Mao.
The founder and vocalist of Earth, Wind & Fire, Maurice White, who died in February last year aged 74, had Parkinson’s, as did the actor Bob Hoskins, who died in April 2014, aged 71.
After the founding leader of Singapore, Lee Kuan Yew, died in March 2015, aged 91, his daughter revealed that he had suffered from Parkinson’s disease in the last three years of his life.
The Scottish comedian Billy Connolly (pictured left) is living with Parkinson’s, as is the former singer Linda Ronstadt, who last year made a rare public appearance in San Jose to talk about how she is dealing with the disease.
One of things Linda Ronstadt told her audience was that, if you are going to have Parkinson’s, you had better have a sense of humour.
Michael J. Fox also cites humour as one of his six strategies for “surviving adversity”; the others are exercise, pacing, acceptance, honesty, and optimism.
Humour is very present within the Parkinson’s community, and several people have written books that take a humorous look at the disease.
One of them is “Parkinson’s Humor – Funny Stories about My Life with Parkinson’s Disease” by Beverly Ribaudo, who also writes two blogs.
Ribaudo’s post “A Parkie goes to the Doctor” is a good example of the way she views Parkinson’s and its everyday challenges. She laughs at it, with it, and at herself; and it helps her, and others, get through.
One story she tells is of the time she had a new office desk and, having woken up at 4 a.m. as usual, decided to wire up all her equipment.
“I got everything hooked up and all the wires nice and neat and it was only 5 a.m., so I decided to go back to bed. OOPS! I can’t get up off floor; I’ve been down there too long. I can’t even pull myself up using the new desk. Fortunately, I had put the nice thick bathroom rug down before I started and I could grab the pillow off my chair, so I just curled up and went to sleep.”
Ribaudo was diagnosed with Parkinson’s in 20017, at the age of 47. Her symptoms started when she was in her mid-30s. She also had breast cancer, and recovered.
In October 2012, Ribaudo underwent DBS surgery, in which electrodes are inserted into the brain and are attached to a neurostimulator (battery pack) that is placed in the body and is programmed telemetrically through the person’s skin.
The stimulator is usually implanted under the skin near the collarbone, but, in some cases, it is placed lower in the chest or under the skin over the abdomen.
One of Ribaudo’s blogs is called My DBS Story. Even writing about DBS, she is funny. “After a shaky start (pun intended) and some problems with my scalp not wanting to stay closed, my settings were optimised and I am doing well.”
Another person with Parkinson’s who has undergone DBS, and written about it, is Allison Smith, better known in the Parkinson’s community as The Perky Parkie.
Smith (pictured left), who is a wellness life coach and has certification in PWR!, was diagnosed with Parkinson’s in 2010 at the age of 32, just a few years after recovering from colon cancer.
She has a blog and has written a memoir, “I Am Not Contagious”. In articles such as “19 Things That You Might Not Know About DBS”, she manages to be very humorous about a procedure that is challenging, to say the least (three operations, just a week apart).
Six years after undergoing DBS, Smith turned off her stimulators and filmed herself to see what life would be like without them.
On her blog, she looked back at the time of her diagnosis. It was, she says, like being punched in the stomach.
“I felt cheated out of a life that held so much promise. I looked down at my rigid left arm, resting lifeless on my lap. It felt alien. This was not the same arm that helped me make the cheerleading squad. These were not the fingers that I used to play the flute in my high school band.”
Smith opted for DBS one month after her diagnosis. Six years on, seeing how she was without the stimulators, she wrote: “Having a visual of how much those little battery packs do for me each day just reaffirms that I made the right decision to get it done early into my disease.”
In a paper about DBS, published in 2015, five neurologists – Daniel Martinez-Ramirez, Wei Hu, Alberto R. Bona, Michael S. Okun, and Aparna Wagle Shukla – wrote that, over the past few decades, DBS had been shown to provide a remarkable therapeutic effect on carefully selected patients.
“Although its precise mechanism of action is still unknown, DBS improves motor functions and therefore quality of life,” the authors wrote.
“Randomized, controlled, clinical trials have shown that DBS therapy can be superior to the best medical therapy for improving motor function and quality of life when carefully applying the therapy to a select group of PD patients.”
DBS has in the past involved delivering pre-programmed, continuous stimulation, but there are now “smarter” devices that are more effective and have fewer stimulation-induced side effects.
Doctors consider DBS to be a well-tolerated surgical procedure, but it does carries a slight risk of stroke and infection, and there can be other serious complications such as intracranial haemorrhage, seizures, intraoperative bradycardia (abnormally slow heart action), and hypotension, DBS-lead migration, and fracture.
The authors of the DBS paper said the incidence of PD varied from 1.5 to 19 per 100,000 population per year. The prevalence rates had shown a steady age-related increase, shifting from 41 per 100,000 in the 40–49 age group to 1,903 per 100,000 in people older than 80.
“PD incidence and prevalence are expected to grow over the next decades because of increasing efforts at extending the lifespan,” the authors wrote.
“Among the chronic disorders, PD is also considered one of the most difficult and challenging syndromes, and besides affecting a patient’s quality of life, it substantially increases caregiver burden.”
Parkinson’s can lead to dramatic transformations in people’s lives that can be very positive; for instance people who were not previously actively creative becoming painters or writers.
One of Israel’s leading economists, Rafi Eldor, has become a proficient, impassioned, and now semi-professional ballroom dancer. He enters competitions and performs in dance festivals around the world.
“Dance as a way of confronting the limiting symptoms of Parkinson is supported by extensive research,” Eldor writes on his blog.
He says that people with Parkinson’s often have hunched postures and shortened steps and he found that dancing was the perfect remedy for these problems as it promotes a tall and strong posture with longer steps.
“Dance requires coordination, repetition and learning from mirroring instructors – all excellent ways to curb the degenerative effects of the disease.”
Rafi Eldor dancing with Anna Aharonov.
One of the problems with Parkinson’s is your mood, Eldor says. “That deteriorates and you get depressed. When you dance you are happy.”
Eldor tells the story of his diagnosis and his discovery of ballroom dancing as a “medicine” in a TEDx talk.
He shares how he was in denial about his condition for almost two years, until one day he decided he needed to take action. He tried swimming, walking, and tai chi before realising that he should try one of the things he enjoys most: dancing.
“Dance challenges the patient to do everything the condition tends to limit,” Eldor writes. “Parkinson patients’ muscles are often stiff, they find it hard to perform seemingly simple motoric tasks, and many suffer from low morale.
“Dance is the antithesis of these symptoms. The dancer practices control over his body, and learns how to move accurately according to the rhythm, which exercises the dancer’s body movement and control.
“He also has to be flexible, which exercises agility. And finally the music, social interaction, and vibrant atmosphere are a great morale-boost for those who are burdened by the disease.”
When Eldor discovered he had Parkinson’s, his doctors predicted that he would need nursing after five years.
“Surprisingly, my condition is constantly improving, and I continue living my life regularly as an economics professor and a family man. I owe this mainly to ballroom dancing and the people around me. Dancing enabled me to challenge myself and overcome symptoms of Parkinson’s disease, and changed my life drastically for the better.”
Eldor says it is important to him to share his experience for the benefit of other people living with Parkinson’s “and to remind ourselves that we can take our fate in our own hands”.
Many dance institutions now offer special courses designated for PwPs.
Dance for PD® offers dance classes for people with Parkinson’s disease in Brooklyn, New York, and, via a network of partners and associates, in more than 120 other communities in 16 countries.
In Dance for PD® classes, participants are empowered to explore movement and music in ways that Dance for PD® describes as “refreshing, stimulating, and creative”.
Launched as a non-profit collaboration between the Mark Morris Dance Group and the Brooklyn Parkinson Group, the Dance for PD® programme also provides teacher training, creates innovative instructional media, and nurtures relationships among other organisations so that classes based on its model are widely available.
Rafi Eldor says he would like to launch a similar initiative.
Ballet for Parkinson’s
The English National Ballet (ENB) runs a Dance for Parkinson’s programme that is inspired by Dance for PD®.
The classes are based on the ENB’s contemporary and classical repertoire, and participants also have the opportunity to attend exclusive behind-the-scenes events and see the company perform.
There are classes not only in London, but also in Cardiff, Ipswich, Liverpool, and Oxford.
In their report on a three-year study of the effects of dancing for people with Parkinson’s, a group of researchers led by Sara Houston and Ashley McGill from the University of Roehampton said the main benefits were “in the mental activity it provides and in emotional and social health and well-being”.
They said their research into non-motor activity, such as cognitive functioning, psychological health, relationships, and participant interaction indicated that the dance programme was providing particularly strong support for participants.
“We can conclude that dancing is a good and challenging mental workout for people with Parkinson’s and allows some participants to cope better with symptoms and disability,” the researchers said.
“It offers a positive environment where there is a community of support through dance, allowing participants to nurture positive attitudes to the future and a sense of independence. Dancing is a meaningful activity to participants and is valued highly by them.”
The researchers said the programme helped to encourage feelings of inclusion and positive social interaction, aided fluency of movement, and helped people with Parkinson’s express their personality and communicate. It also helped to promote a sense of achievement.
“It may have a positive impact on postural stability, possibly more so than some other activities,” they said.
The researchers observed few incidents of freezing, despite several participants in each dance class saying freezing was one of their symptoms.
Cycling is another very beneficial activity for PwPs. Tremors actually stop when people cycle. There are numerous cases of people being unable to walk, but being able to cycle.
Neurologist Bas Bloem (pictured left) from the Radboud University Nijmegen Medical Centre in the Netherlands wrote a case study, which was published in the New England Journal of Medicine, about a 58-year-old patient with Parkinson’s who had severe freezing of gait, but mentioned that he rode his bicycle every day.
Wanting to see this for himself, Bloem provided a bicycle and asked the man to demonstrate.
“He gracefully cycled about 100 meters away, fluently turned his head to check for cars and pedestrians, executed a smooth 180-degree turn and cycled back to where he started, even standing up on the pedals to cycle up a small incline.”
Research has shown that dynamic, high-cadence cycling improves motor symptoms in Parkinson’s disease.
The authors of a paper published in September 2015 state: “Our studies, and those of several others, have presented strong evidence that certain exercise interventions promote changes in neural drive in PD .
“Although the exact mechanisms are still unknown, it has been suggested that increases in sensory input or feedback resulting from these interventions may play a role in this motor improvement.”
Meng Chuo Wong smiles when asked if he is not afraid of cycling in traffic. “I know which way to fall,” he said. “I don’t really fall; I just have trouble sometimes when I stop. I find myself leaning too far to one side; luckily to the left, and not the road side.”
Rock Steady Boxing
Boxing is another activity that has been shown to help people with Parkinson’s.
Rock Steady Boxing, based in Indianapolis in the US, is just one of the organisations that provide people with Parkinson’s with a fitness curriculum based on non-contact boxing.
The organisation was founded in 2006 by former Marion County (Indiana) prosecutor, Scott C. Newman.
Newman began intense, one-on-one, boxing training just a few years after he was diagnosed with early-onset Parkinson’s at the age of 40 and witnessed a dramatic improvement in his physical health, agility, and daily functioning.
Rock Steady Boxing started in one location with six participants and now runs more than 280 programmes in 44 US states, and 12 international locations.
‘Shake it till we make it’
Brian Grant, who was diagnosed with early-onset Parkinson’s at the age of 36 – just two years after retiring from professional basketball in 2006 – does all he can to encourage other PwPs to lead active and fulfilling lives.
In a video about his experience Grant says: “The only thing I knew about Parkinson’s was what I’d seen in Michael J. Fox and Muhammad Ali, and that was scary at that point, and I was very scared because I thought ‘Damn, I’m 6.9 … and if I’m like that, how am I going to function; how am I going to live?’.
“The thing that bothered me the most about that was that no-one could tell me what to do, not even my neurologist, who was one of the top neurologists in the country, and sat on Michael J. Fox’s board.”
Grant said he didn’t want to tell anyone about his diagnosis because he didn’t know whether he wanted the whole world to know.
Then, he got a call from Michael J. Fox, which, “hearing his courage and his optimism”, changed his mind and he decided he wanted to be a spokesperson about Parkinson’s. “I wanted to get out there.”
Grant was determined to remain as healthy as possible himself, and also wanted to help other people with Parkinson’s, so he launched the Brian Grant Foundation.
“Shake it till we make it” events are organised to raise funds for the foundation.
Grant’s aim is provide a place for people with Parkinson’s to come “and know, first of all, that they’re not alone, that it’s not a death sentence, and that you can live a normal life; and that Parkinson’s doesn’t have to be your life, but it can just be a part of your life”.
He is a driving force behind the “Parkinson Power Through Project” (PTP), which encourages people living with Parkinson’s, and others, to exercise.
Last year, participants travelled along a 10-segment route, converting physical activity into virtual mileage.
Each segment was inspired by an exercise theme designed to benefit people with Parkinson’s, and an array of videos, blogs, articles, images, and cultural biographies motivated, entertained, and educated the participants.
To complete the PTP, teams accumulated 100 hours of physical activity, and covered 3,000 virtual miles from Montreal in Canada – where the World Parkinson Congress was held in 2013 – to Portland, Oregon.
The PTP organisers point out that physical fitness – strength, flexibility, balance, and stamina – are especially important for improving the quality of life of those who live with Parkinson’s.
In the case of Parkinson’s, they say, “exercise is medicine”.
Painting with Parkinson’s
The organisation “Painting with Parkinsons” in Canberra, Australia, aims to bring participants in its programmes relief from symptoms such as tremor, and reduce feelings of isolation and depression, via immersion in the creative process.
It was set up in 1994 by Nancy Tingey, who wanted to combine her role as a community artist and art curator with caring for her husband Bob, who had been diagnosed with Parkinson’s in 1987 at the age of 46.
“Painting with Parkinsons is now recognized as one of the most effective art therapy programmes in the world for people with Parkinson’s,” Tingey says on her website.
“The philosophy underpinning Painting with Parkinsons is based on research,” she writes.
Workshops vary and include painting, drawing, sculpture, printmaking, ceramics, and writing.
Many of the workshops include poetry or literary readings and singing or instrumental musical performances. Warm-up exercises and meditation often form part of the introduction to the session.
“Rather than being taught or directed, artists are encouraged to become absorbed in their own work, which results in unique, individual artworks,” Tingey said.
Julie H. Carter, who is Professor of Neurology at Oregon Health & Science University and co-founder of the OHSU Parkinson Centre of Oregon and Movement Disorders Programme, says people can have some control over the symptoms of Parkinson’s by teaching their brain to change and adapt to new circumstances, an ability called neuroplasticity.
Scientific evidence suggests that certain activities – exercise, social connectedness, and creativity – may not only be therapeutic for Parkinson’s symptoms, but may actually change the brain and allow it to form new pathways of communication among brain cells.
Carter’s research builds on that of Professor Lakke, a Dutch neurologist who found that the creativity or originality of artists who developed Parkinson’s was not impoverished, and artists remained amazingly productive despite considerable and limiting motor fluctuations.
Professor Lakke suggested that autocuing, or using clues and triggers to initiate activity, might be circumventing impaired motor programmes.
The writer and artist Mervyn Peake, who wrote the Gormenghast Trilogy, had Parkinson’s and there is an annual award in his name in the UK that recognises the creative talents of people with Parkinson’s.
Lakke cites Mervyn Peake as someone who remained artistically productive despite having very serious Parkinson’s symptomatology.
Writing in September 2014 in the Journal of Psychopharmacology, researchers at the University of São Paulo in Brazil reported on the efficacy of cannabidiol (CBD) versus a placebo in 21 people with Parkinson’s.
The authors reported that the administration of 300-milligram doses of CBD per day was associated with “significantly different mean total scores” in the well-being and quality of life of the subjects who were given the CBD as compared to those who took the placebo.
There were no statistically significant differences when motor and general symptoms, and possible neuroprotective effects, were assessed.
“Our findings point to a possible effect of CBD in improving quality of life measures in PD patients with no psychiatric comorbidities,” the researchers concluded. “However, studies with larger samples and specific objectives are required before definitive conclusions can be drawn.”
Researchers at Tel Aviv University in Israel reported earlier in 2014 that smoking cannabis had alleviated various PD symptoms in a cohort of 22 patients.
Analysis of specific motor symptoms after cannabis consumption revealed “significant improvement after treatment in tremor, rigidity, and bradykinsea”, the researchers reported in the March/April 2014 issue of the journal Clinical Neuropharmacology.
They added: “There was also significant improvement of sleep and pain scores. No significant adverse effects of the drug were observed.
“The study suggests that cannabis might have a place in the therapeutic armamentarium of PD. Larger, controlled studies are needed to verify the results.”
Meng Chuo Wong points out that those affected by Parkinson’s in Malaysia are mostly Chinese or Indian. Very few Malays have been diagnosed with the disease.
Worldwide, China is the country with the greatest number of people living with Parkinson’s, with more than 1.7 million people diagnosed.
The world’s highest prevalence of Parkinson’s is along the River Nile in Egypt, among illiterate Egyptians in rural areas. They have a prevalence rate of 1,103 per 100,000.
Egypt is the country with the third highest prevalence of Parkinson’s in the world. The country with the highest prevalence is Albania.
The world’s second highest prevalence of Parkinson’s has been found among the devoutly religious Amish community, which is based primarily in the northeastern US.
There is also very high prevalence in the vicinity of ferromanganese plants near Brescia in Italy, with 407 people per 100,000 affected. In high concentrations, manganese is a known cause of Parkinson’s disease.
Ethiopia has the world’s lowest recorded prevalence of Parkinson’s. This may be because of the country’s very low life expectancy.
1) Parkinsonism is a generic term referring to slowness and mobility problems that result from or look like Parkinson’s disease. Several conditions that are not actually Parkinson’s disease, including multiple system atrophy and progressive supranuclear palsy, as well as a number of medications, can result in Parkinsonism and a misdiagnosis of Parkinson’s disease.
Just after publishing this article, I received the sad news that one of the people I interviewed in Sibu, Fam Qian Bao, who is mentioned early on in the piece, has passed away. He was very weakened and unwell so, while there is grief for his family and friends, there is a sense of relief that his suffering has ended.