Working through Parkinson’s

Beyond the obvious financial benefits of a paycheque, work enriches our lives in many ways. It give us a sense of purpose and participation in the wider world. It provides us with a social life with colleagues, many who become friends. It enables us to keep stretching our minds as we continue to learn. All of these benefits of work are perhaps even more precious to people who continue to work after a diagnosis of Parkinson’s disease.

While the majority of people are diagnosed close to retirement, many people, especially those with young-onset Parkinson’s disease (YOPD), are still in the prime of their working lives with families to support. Can they continue to work? For how long? Should they tell their employer? How will colleagues react? How will they and their employers adapt to their changing capabilities?

We spoke to five individuals living with Parkinson’s who are still working. Just as everyone’s Parkinson’s journey is different, so is everyone’s capacity to continue to work and the unique accommodations and adaptations that they and their employers make. Continue reading to learn about Miles, Jeannine, Wayne, Elaine and Chris’ personal journeys.

Miles Wilwand and Tanya September
Miles Wilwand and his wife Tanya September

Miles Wilwand

Diagnosed at 45, Miles Wilwand is now 50 and working at the main office of a public utility in Winnipeg. His diagnosis came soon after he landed a full-time job in the mailroom. It was a new working environment for him. He’d spent most of his working life as a meat cutter — a career he had to abandon following a hand injury. Today, at the utility he works in print services, a position that requires less walking than his previous one.

Miles shared his Parkinson’s diagnosis with his employer after about a year. “It was a huge weight off my shoulders,” he says.

Some of his colleagues were surprised when they learned he had Parkinson’s. Miles had always been so active, biking and running. And he was so young. A few of them knew a little more and would mention Muhammad Ali and Michael J. Fox.

Gradually, his mailroom position began to take its toll. His Parkinson’s affected his right arm and leg. He got constant injuries from his rigid muscles. But, his work delivering mail did mean he had contacts throughout the company. At one point he learned they were looking for someone in print services and he switched departments. He learned some new computer skills and earned a slight raise in pay.

“In some ways my earlier hand injury was a blessing in disguise. I can’t imagine I’d still be working if I was still in the meat packing business,” he says.

Over the years, Miles has made changes outside of work that keep him both physically and mentally in shape – and able to keep working. He is sure to take his medication on time, keeping his pill container on his keychain. He and his wife live in a condominium and he uses the on-site gym to keep active. He does stretches every morning and paces himself. He still walks and bikes and he just started taking a boxing class. And he is careful about what he eats.

Along with the steadfast support of his wife Tanya September, he cannot say enough about the importance of the Parkinson Canada YOPD support group he attends each month. “I learn things. I realize I am not alone. I feel blessed and thankful that we have this group in Winnipeg.”

Miles says his diagnosis was a scary moment in his life. His advice for others newly diagnosed: “Get off the couch. Get information. And find a support group.”

Jeannine Alain
Jeannine Alain

Jeannine Alain

When Jeannine Alain, convinced her husband Ted to move from Victoria to Saskatoon in 2014, the plan was to ease into retirement close to her sisters. She promised him they’d take a vacation each winter to somewhere warm. Parkinson’s was not part of the plan.

They spent the first six months renovating their home and Jeannine prepared to set up shop as an independent caregiver/companion to the elderly. She set up her business, took some first aid courses and started looking for clients. Ted also worked part-time. They were looking forward to semi-retired life in their new community.

A year after moving to Saskatchewan, at age 56, she received her diagnosis of Parkinson’s disease. She recalls her first visible symptom was a tremor in her left, index finger. It moved to two other fingers and then her left wrist. Fortunately her gait is not affected and medication helps relieve the tremors. She does have trouble sleeping.

“At first I was really down for a few weeks,” recalls Jeannine. “Then I joined a Parkinson’s exercise class and a local Parkinson Canada support group. Now, we all go out to lunch as a group and ‘shake together.'”

As an independent caregiver, Jeannine sets her own hours. She currently has about five clients and sees most of them on Tuesdays and Thursdays. On the other days she keeps active. She works on the house, practices mental visualization while walking 45 minutes three times a week, takes her Parkinson’s exercise class and a Tai Chi class. And takes care of her business.

She needs to renew her client base because as a caregiver to the elderly, her clients eventually die. “It’s the sad part of the work.” All of her clients and their families know she has Parkinson’s and that she is able to perform her duties. “It’s better and easier for me that they know.  I feel it makes me even more conscientious.”

This past winter Jeannine and Ted took a road trip to Washington, DC and then on to Florida and back. “It was great, but it took a lot out of me. It also made me wonder how much longer I’ll be able to enjoy such adventures,” she said tearfully.

It’s been just over a year since her diagnosis and for now Jeannine intends to continue her work helping others as long as she is able, and to keep active. She keeps informed about Parkinson’s research and treatment innovations and is hopeful about the future. Her advice to others is “to get out there. It’s tempting to hide away and become isolated. Stay active.”

Wayne Fiander
Wayne Fiander

Wayne Fiander

For 22 years Wayne Fiander, now 48, has been working full-time for the same printing firm in Hamilton, Ontario. For 13 of those years he has also been living with Parkinson’s disease. In the early years, he worked his way up to become the plant manager for the firm. Today, he operates a number of printing machines. He lives in nearby Thorold, in the Golden Horseshoe.

When he first noticed the tremor in his left hand 13 years ago, Wayne thought that maybe he’d damaged his ulnar nerve, and he’d try to hide his hand. Eventually, the tremor was too strong to hide. When he received his Parkinson’s diagnosis, he told his employer and took a three-month leave of absence. At the time, his two children were five and three years of age.

“It was lot to process. I had to start medication and learn ways to get the tremor under control,” says Wayne.

When he returned to work, his employer and his colleagues were very supportive. “Everyone had known me and worked with me for nine years. Some of my colleagues felt bad for me. But my employer told me that I was a valued employee and that they wanted to keep me on.”

Wayne moved to a less stressful position, running printing machines, and thankfully did not have to take a cut in pay. He works full-time, usually on a regular day shift from 7 a.m. to 3 p.m. and occasionally the afternoon shift from 3 to 11 p.m. to cover vacations.

He’s pretty active, on his feet all day, and drives the 35 minutes to and from work. He finds that the more active he is, the better his muscles function. He’d always been pretty athletic, playing tennis and basketball.

As his disease progressed over the next 10 years, his medication increased until he was taking 15 pills a day. It was getting more difficult to control the shaking and manage the machines at work. It was harder to manage daily chores like buying groceries. Wayne’s balance was being affected and he was experiencing freezing. He was now 45 years old.

He was accepted as a Deep Brain Stimulation (DBS) surgery candidate at Toronto Western Hospital and took a four-month leave from work. It took time to calibrate the implanted device and adjust his medication, but the surgery was a success for Wayne and he returned to work.

Wayne knows that DBS in not a cure for Parkinson’s and it does not stop the progression of the disease. He gets plenty of rest, eats well and keeps active. “I’m productive and I’m pretty pleased with my work life and enjoy the daily social interaction,” says Wayne. “Everyone’s circumstances are different, and I’ve had a supportive employer. I believe the fact that I was a valuable employee before my diagnosis had an impact on them wanting to keep me on. I think it has worked out well for both of us.”

Elaine Goetz
Elaine Goetz

Elaine Goetz

When Elaine Goetz, 55, started working at Library and Archives Canada on a casual basis eight years ago, her supervisor already knew she had been diagnosed with Parkinson’s the year before. She’s the person who told Elaine about the opening and suggested Elaine apply.

Not long afterwards, a full-time position opened up and Elaine entered the competition process and got the job. Library and Archives Canada in Ottawa is a federal institution that acquires, preserves and makes available Canada’s documentary heritage. Visitors enter through security and then head upstairs to the second floor reception area where Elaine spends about half of her working day. There, she registers them and checks their photo ID, before they gain access to the collection.

Elaine also has a work station on the third floor where she processes  requests for information – everything from a copy of a grandfather’s will to an inquiry about native status and from genealogy records to historical photos of Ottawa to be hung in a local restaurant. Requests come in by fax, email and snail mail and Elaine sorts and directs them to the appropriate department for a response.

Elaine’s main motor symptoms affect her balance and stiffen her muscles, but she has been fortunate that her medications have kept up with the progression of her disease with few side effects. But, four years ago, she found herself very tired all the time and experiencing some mental health symptoms.

“My children were younger then. I was dealing with a chronic illness and having difficulty facing the fact that I was unable to be superwoman living with Parkinson’s disease,” she says. Anxiety and depression are both common non-motor symptoms of Parkinson’s disease with up to half of people experiencing these symptoms. With documentation from her doctor, Elaine was able to reduce her work week to four days a week for 18 months.

Elaine has been back at work full-time for more than two years now. “I’m in a much better place now mentally,” she says.  She attends a Parkinson Canada support group and raises funds for research in Ottawa. Everyone at work is aware of her involvement in the cause and she believes her efforts also raise awareness of the disease.

She is active physically too, doing yoga and swimming. She finds staying active keeps her more physically and mentally fit.  During her spring performance review she asked about having an ergonomic assessment of her workstation. With a note from her physician, she has had the assessment and hopes to soon have an adjustable work surface that will enable her to sit and stand to do her work. This accommodation in her workplace should help alleviate her muscle stiffness.

Elaine’s openness about her Parkinson’s has the added benefit of encouraging awareness in her workplace too. She was recently featured in a Healthwise Ottawa article about YOPD and with her permission, her boss shared the story with the staff. She tells people that Parkinson’s is the “designer disease” – different for everyone. She knows people who have had it for 25 years and are still mobile and productive.

Elaine is hopeful about the future with the current research taking place around the world. And she tries to stay positive. “I try not to dwell on what may happen. If it does happen, you only end up experiencing the grief twice,” she says.
For now, Elaine intends to “continue working for as long as my body will let me.”

Chris Hudson
Chris Hudson

Chris Hudson

When Chris Hudson was diagnosed with Parkinson’s disease at 41, he was a professor in the school of optometry and vision sciences at the University of Waterloo, as well as practicing as an optometrist in the school’s clinic. Not long before, he’d been fast-tracked through immigration from the UK, because of his unique research skills and he’d already landed a faculty position at Waterloo.

Today, he is still a professor at the university, but no longer practices as an optometrist. His work is mainly lecturing and research activities. He also works as an adjunct professor at University of Toronto, co-leading the ocular research team of the ONDRI (Ontario Neurodegenerative Disease Research Initiative) study.

In between these two realities, Chris faced a nightmare called Thoracic Outlet Syndrome or TOS. TOS is a group of disorders that occur when the blood vessels and/or nerves in the space between the collarbone and the first rib (thoracic outlet) become compressed. This can cause pain in the shoulders and neck and numbness in the fingers. His TOS led to a three-year leave of absence from work.

Chris remembers the early years of his Parkinson’s as manageable. But, the TOS was very painful. It left his right arm impaired, the fingers of his right hand white and took away all the feeling in his right hand. Likely due at least in part to his Parkinson’s diagnosis, the TOS took years to diagnose and treat. Eventually, Chris had corrective surgery in Denver (which was not available in Canada at the time) and six months later he was pain free.

“I got to work out and got very fit, very quickly,” he says. “Then all of a sudden my Parkinson’s seemed to take off. Perhaps the TOS and its treatments had masked many of the Parkinson’s symptoms. By this time I was 47 or 48. I was struggling to walk. It was hard to get out of a chair. I was told I’d never work again. And I’d so recently gotten fit again. It was a setback.”

Chris got to work to beat back the Parkinson’s. He worked on his gait by using a metronome when he was on the treadmill. He worked on getting his arm swing back. He now exercises at least an hour a day and he’s particular with the timing of his medications and his diet.

“I find I live well with Parkinson’s,” says Chris. “Maybe it’s because I was so ill with the TOS, for so long. I find life now so much better. And my dexterity is still pretty good. Technology advances in the optometry profession have also helped. For instance, the retinal camera has made a big difference, by making the work less hands on. I can do most of what I need to do practically to demonstrate to my students in the clinic. And there are colleagues I can call on if necessary.”

Throughout his Parkinson’s journey his employer and colleagues have been quite supportive. “Perhaps because we are working in a health-care setting, people have been very sympathetic and helpful.” And he was a valued employee, difficult to replace.

He met with occupational health early on and the director of the school of optometry was very supportive in helping him return to work. He also had the support of his faculty association. “For others, at other companies, the reaction may be only as good as your line manager,” he says. “I’d encourage people with Parkinson’s to disclose their condition with someone in their corner present.”

Chris has been very up front and direct about his condition and its impact. He sent a personal email to all of his colleagues, explaining his Parkinson’s and what they might notice. On a more personal note, he also started up a Parkinson Canada YOPD support group in the area three years ago, which usually meets monthly in Guelph or Kitchener. He still attends.

And then there is his research. For more than 20 years he has been studying the rates of blood flow in the back of the eye as a reflection of general health. In the ONDRI study labs at Toronto Western Hospital and the Kensington Eye Institute, he and four students study the relationships between eye disease and brain disease. This work was recently featured in an article in the Globe & Mail.

“It’s been comforting to do the research I’m doing with ONDRI – looking at Parkinson’s disease on both a personal and professional level. It’s rewarding to make use of my skills in this way.”

Considerations if you intend to keep working

As an employee in Canada, you are not legally required to disclose your Parkinson’s diagnosis. However, if you are seeking accommodation in the workplace, you do need to disclose that you have a disability, and what your limitations may be.

Employment legislation, including accommodation, is regulated provincially like healthcare, so there are some differences from province to province. Accommodation can include modified job duties, work schedule and physical changes in the workplace.

There are limits to the accommodation you can expect from your employer. For example, a person in a wheelchair cannot be accommodated as a firefighter. There are also limits depending on the size of the company: a small, independent shop may not be required to build a wheelchair ramp or accessible washroom for an employee, if the cost would be burdensome to that business.

It is important for a person with a disability to be clear on how their own symptoms may affect their ability to carry out their job duties. Just as each person’s Parkinson’s journey is different, so too are a person’s needs to continue to perform his or her job. There is also an obligation for the employee to request reasonable accommodations.

It is highly recommended that you confirm conversations of disclosure with your employer (of your diagnosis or of your disability) in writing (email is acceptable) and save a copy of this mutual understanding in your personal files, away from work. There is a risk that some companies may pressure an employee to leave if they perceive that there is a ‘performance issue.’ You cannot make a claim of discrimination if you did not reveal your disability to your employer, and you need to have proof of this revelation. It is a good idea to continue to document for your own records any subsequent discussions you and your employer have concerning your capabilities.

For further information on this and related topics, contact our Information and Referral specialists at 1-800-565-3000 or info@parkinson.ca.

comments

The value of basic research: discovering links to Parkinson’s

Geoffrey Hesketh
Dr. Geoffrey Hesketh

The beauty of basic research is that sometimes, when you’re not looking for it, you make a discovery that answers a critical question in an entirely new or different field.

That’s what happened to Dr. Geoffrey Hesketh. Dr. Hesketh, a cell biologist, was investigating how proteins move around in cells to arrive at their surface in the correct order required to do their jobs.  He was concentrating on the Retromer proteins, a group of proteins that work together to pick transport proteins from their starting point to the correct spots that allow them to send and receive communications signals.

Other researchers had already figured out that damaged forms of one particular protein in the group – a protein called VPS35 – lead to Parkinson’s disease. Dr. Hesketh’s work revealed that nine other genes associated with Parkinson’s disease are also part of the Retromer group. That discovery points to this group of proteins as being critical players in the cause of Parkinson’s disease.

Now Dr. Hesketh, who has switched the focus of his project to Parkinson’s, uses a technique called mass spectrometry to screen all the proteins in the Retromer group. He wants to identify all the proteins they communicate with, because they could also be implicated in Parkinson’s disease. Dr. Hesketh was recently awarded a two-year, $100,000 Basic Research Fellowship from the Parkinson Canada Research Program to pursue this research.

The next step for researchers is to figure out how and why, when things go wrong in the Retromer group, Parkinson’s disease results. One theory is that any defect in the Retromer pathway results in fewer proteins getting to the right spots on the surface of brain cells. That could disrupt communication among the cells. Cells that produce dopamine – the chemical in the brain that affects movement – could be more susceptible to this disruption.

“Or it just could be that after losing their connections with the neighbouring cells, these cells (with damaged Retromer proteins) just shrivel up and die,” Dr. Hesketh says. “Knowing exactly what goes wrong at the cellular level is critical for the design of any future drug to treat Parkinson’s,” he says.

He is passionate about the need for basic research and its unintended consequences, rather than only funding research with direct medical or industrial applications.

“You can sometimes learn much more about a disease process when you don’t even know you are studying that disease in the first place,” he says. “I think I’m a good example of that.”

Dr. Hesketh was invited to attend a symposium of Parkinson Canada’s Scientific Advisory Board last month, when the members presented their research to one another. You can watch our interview with Dr. Hesketh, recorded after this meeting, below. You can also read about other researchers funded by the Parkinson Canada Research Program.

comments

In summertime, your Parkinson SuperWalk fundraising can be easy

The Lowe family gets set for Parkinson SuperWalk (Sharon Quentin holding the sign.)
The Lowe family gets set for Parkinson SuperWalk (Sharon and Quentin Lowe hold the sign.)

The summer is prime time for social gatherings of all types: BBQs, picnics, pool parties, family reunions, cottage retreats, golf days, birthday celebrations and anniversaries. While you’ve got everyone together, why not encourage them to make a pledge to your Parkinson SuperWalk fundraising efforts – or join you by participating in SuperWalk too.

If you’re hosting a summer gathering, tell your guests (in advance) to forget about a birthday or anniversary present and to nix the hostess gift and ask them to support your SuperWalk campaign instead. If you’re emailing your invitation, add the link to your SuperWalk page, so they can make their pledge as they RSVP. Be sure to have an envelope for cash and your paper pledge form handy at the gathering too.

You may even want to sell tickets to your event and let everyone know that the proceeds will go to Parkinson SuperWalk. That’s what Sharon Lowe has done the past couple of summers. She turned her usual poolside luncheon for a group of girlfriends into a fundraiser – Poolside Pedicures for Parkinson’s.   Last year the event raised $715 and Sharon raised more than $2,000 for Parkinson SuperWalk in total.

“It was all great fun. We had a lot of laughs, as we usually do when we get together,” says Sharon. “And all of my friends know how important the Parkinson’s cause is to me because of my brother. Her younger brother Quentin Lowe, now 45, was diagnosed with young-onset Parkinson’s disease (YOPD) eight years ago. This year Sharon may charge a bit more for her event tickets and gather her friends for a women’s networking event of some kind, since most of her friends are business women.

So consider asking your friends, colleagues and family members to support your SuperWalk campaign, when you’re together having fun in the sun. In addition to supporting a wonderful cause, your fundraising efforts could make you a winner like Mike Zegers of Toronto.  Mike won a $500 Roots card for the SuperWalk Early Bird Draw held May 31. While pleased with the prize, Mike’s motivation is his late father.

He writes: “Parkinson SuperWalk is an opportunity for me, my family and friends to remember my father Marinus Zegers, who courageously battled with Parkinson’s disease for more than 15 years. One of my father’s great wishes was that future generations, including his children and grand-children, would live to see a cure and not face the debilitating consequences of the disease as he did. Contributing to Parkinson Canada through SuperWalk is my attempt to help turn that wish into a reality. Parkinson SuperWalk brings awareness to the disease, raises funds to support people living with Parkinson’s and funds initiatives that are working towards better medication/treatment and ultimately, a cure. Participating in Parkinson SuperWalk has allowed me to connect with others who have Parkinson’s or are affected by the disease, share my awareness and experience with others, support the initiatives of Parkinson Canada and to further cherish the memory of my Dad.”

Parkinson SuperWalk offers walkers plenty of chances to become a winner, and an Everyday Hero to people with Parkinson’s across Canada.

comments

Heroes live on through their actions

Melissa Adamson and Joyce Gordon
Melissa Adamson and Joyce Gordon

Like millions around the world, and especially in the Parkinson’s community, certain staff at Parkinson Canada fondly remember their experiences with Muhammad Ali, and we all applaud his courageous spirit as a Parkinson’s advocate and ambassador. In this photo, Melissa Adamson, left, who met Ali at a Parkinson’s event in Toronto and Parkinson Canada CEO Joyce Gordon, flank a poster of Ali declaring: “Ali – For the Greatest Good,” which promoted Ali’s 2002 appearance in Canada for a fundraiser. Help us continue Ali’s legacy by honouring him, or your own Parkinson hero, with a donation to bring help and hope to those living with Parkinson’s.

comments

Learning how to get the help you need as a caregiver

What kind of help do I need? Who do I ask for that kind of help? How do I keep track of tasks and appointments and who is doing what? These are just some of the questions that caregivers need to answer – often every day. Navigating the health and social care systems can be overwhelming, especially when caring for a person with a progressive brain disease.

Parkinson Canada, in partnership with the Multiple Sclerosis Society of Canada and the Alzheimer’s Society, will broadcast a second webinar especially designed to meet the needs of caregivers on May 26, from 6 to 7:30 p.m. EDT. “Learning how to get the help you need – a webinar for caregivers on how to navigate the health and social care systems,” consists of a one-hour presentation followed by an interactive question and answer session.

“At the core of this webinar is the recognition that one individual caregiver cannot possibly meet all of the needs of their loved one,” says Robert TerSteege of Parkinson Canada, one of the webinar’s presenters. “We will guide participants through the process of determining what help they need, where they may find it and how to ask for the help they need.”

TerSteege was the primary caregiver for his late fiancé for about a year, seven years ago, and is a Certified Information Referral Specialist (CIRS.) He will be joined by Valerie Borggard, Navigator for the MS Knowledge Network, to provide an overview of how care partners can navigate different systems and consider different resources to help support themselves and their loved ones.

“It can be difficult to first identify the issue you need to resolve and then to target where to find the resources you need,” says TerSteege, “Keep in mind that there are three levels of government in Canada – federal, provincial and municipal – and several departments at each level. There is not really a single system, but several systems to navigate. There are also community and charitable resources available, as well as an individual’s personal support network to call upon. This webinar should give participants some guidance on how to get the help they need.”

To join the live webinar, you need to register in advance. You’ll also need access to a computer and the Internet. Following the broadcast, the webinar will be posted on Parkinson Canada’s website so you can watch and listen at your own convenience. We will also be posting on the website some of the helpful tools introduced in the webinar, like the “Honey Do” List:  for those ‘if there’s anything I can do’ moments and a chart for Planning for When I Will Need Help (appointments, drives, and other ‘no miss’ days.)

If you haven’t watched it yet, you may want to check out the previous webinar for caregivers: Taking care of yourself through the ups and downs of caregiving. Care partners can also find other information and resources on our website or by calling Parkinson Canada’s Information and Referral Centre at 1-800-565-3000.

comments