Search

Parkinson’s and Me in Taiwan 

What do you do when you’re sick in Taiwan? Go to the pharmacy for over the counter medication? Get Traditional Chinese Medicine; acupuncture or herbs? Should you venture to the hospital with the NHI card and pick any doctor or specialist you wish to see? Here are three stories about the medical journeys of expats with Parkinson’s Disease.
cot-health-parkinson's-0524 - 1
Michael Boyden with his family

MICHAEL

Michael’s work brought him to Taiwan in 1989. An active runner, he loved the trails in the mountains. In 2016, he fell while running, when he extended his left arm to break his fall. The arm never recovered. He spent two years seeking treatment and therapy for the ‘connectivity’ of the arm and shoulder blade. For two years there was no progress and his wife Katy noticed that his gait while walking had changed. Michael also complained of difficulty picking things up, and exhaustion from the walk home from the MRT. She persuaded him to get a second opinion from a neurologist at another hospital. The diagnosis was Parkinson’s Disease (PD). In February 2019, he started taking Levodopa for treatment of PD. At the end of 2019, after he suffered another fall and difficulty climbing stairs, he and his family moved to a building with elevator access. In 2020, when COVID in Taiwan was under relative control, his doctor arranged a week’s stay at the hospital to run tests and to evaluate the efficacy of the medicines being used for treatment. At the end of the week a new diagnosis was given: Atypical Parkinsonism-Progressive Supranuclear Palsy (PSP).
PSP is a rare neurological condition that can cause problems with balance, vision, movement, speech and swallowing. Medication, physiotherapy, occupational therapy could not slow the progress of Michael’s PD. Two years after diagnosis, Michael lost control of his hands and bladder and legs. He had to use diapers and a wheelchair. Three years after diagnosis, Michael had difficulty chewing and swallowing food, and he was put on a liquid diet. Subsequently he had a gastrostomy tube surgically placed. Katy and Michael had spent years trying to find an English language support group so they started their own, a FB group called Parkinson’s and Me in Taiwan. Katy keeps informed on PD subscribing to Parkinson’s UK, PD Avengers and the Michael J. Fox Foundation. She documents this information and records of Michael’s treatment and wants to share with other People with Parkinson’s (PWP) in Taiwan. This year they had the first fellowship meeting of PWP On Easter 2024. Now in the fifth year since diagnosis, Michael is bedridden and has lost speech, but there is more laughter than tears. They are no longer alone on this journey, with renewed focus and energy, they have found an opportunity to grow in knowledge and a wider horizon, Parkinson’s does not define them.

About Parkinson’s

Parkinson’s Disease (PD) is a progressive disorder that affects the nervous system and the parts of the body controlled by the nerves. Globally, disability and death due to PD are increasing faster than any other neurological disorders. If you are affected by PD in Taiwan, seek proper medical diagnosis from Movement Disorder Specialists.

parkinsons disease

Scan for Parkinson’s and Me in Taiwan FB page

In the next issue, Katy will share more about the facts and application on navigating the health system in Taiwan for expats.

PAUL

Paul developed Parkinson’s symptoms in 2009 following a heart stent procedure, initially
unaware of their connection. Subsequent to the surgery, he developed Hashimoto’s thyroiditis due to reduced thyroid function. Despite reporting escalating Parkinson’s
symptoms every three months to his cardiologist, the condition went unrecognized to the
time gaps between reports.

In 2019 Paul provided his cardiologist with a comprehensive list of symptoms. This led to a
referral to a Parkinson’s specialist at Taipei University Hospital where he received his
Parkinson’s diagnosis. One prominent symptom was finger tremors, noticeable when tapping
his fingers to his thumbs. Prior to his diagnosis, Paul experienced difficulties coordinating
left-right movements, initially attributing them to aging. However, his wife Penny noticed
additional concerning signs, such as slouching while standing and forgetfulness of the
names of objects. Despite these symptoms, neither Paul nor his doctors made the
connection until 2019.

Paul continued to relate all symptoms to aging and didn’t take much heed. His wife Penny
became concerned when Paul began to slouch while standing and to forget basic names of
everyday objects; “a pen”, “scissors” or even “orange juice” all of which could be within sight.
By 2012, Penny wondered what the cause of such regression could be and neither Paul nor his doctors connected the dots.

Paul’s most persistent and serious symptom has been difficulty swallowing, leading to
dangerous choking episodes and subsequent avoidance of food and water, resulting in
dehydration and malnutrition, necessitating hospitalization. Since his 2019 diagnosis, Paul
has received excellent diagnostic and medical care at Taipei Medical University Hospital and
National Taiwan University Hospital.

Despite effective medical treatments, coping with the emotional challenges of a degenerative
disease among non-Parkinson’s caregivers requires support. Paul found solace in
Parkinson’s and Me, a support group where he connected with fellow patients and their
spouses. Together, they established a weekly exercise and discussion session, held every
Tuesday from 10:00 – 12:00 at Grace Church on Mingde Road in Tianmu. The group
welcomes others to join them in this lively, safe environment.

KEVIN

Kevin was an Art Therapist working at an adult psychiatric hospital in New York. His partner noticed his sluggishness and a limp in his right leg and insisted on seeing a doctor. When he walked he didn’t swing his right arm. At that time, Kevin thought it was due to the intense stress from work. The neurologist diagnosed him with Parkinson’s Disease(PD). This was summer 2016. Kevin was devastated and sought a second opinion which also confirmed it as PD. The second Neurologist he saw, Dr Rebecca Gilbert at NYU Hospital, was extremely instrumental in helping him apply for social security disability which enabled him to retire early at the age of 58, a year after the diagnosis. Kevin decided to join his partner Ming-che in Taiwan where they got married in 2020. With the NHI Card, he was able to access the excellent healthcare system in Taiwan. But navigating his way through the healthcare system has been more challenging due to his limited understanding of Mandarin. He had to rely on his husband and friends. Kevin felt strongly that Taiwan desperately needed the option of exercise groups, hopefully in English. In the States, there are a variety of boxing groups, ping-pong, cycling and exercise groups tailored for people with Parkinson’s.

Katy Boyden works full-time at an international school as an art technician. Her focus now is caring for her husband with PD. In her spare time, she manages the FB group: Parkinson’s and Me in Taiwan.

FB: Parkinson’s and Me in Taiwan

Parkinson’s and Me in Taiwan is a support group for people with Parkinson’s (PWP) and their caregivers. This article was written in April – World Parkinson’s Awareness month.
You can reach out to their FB group, or email: katyboyden@gmail.com

You Might also Like...

Skip to content