It Takes a Village

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Linda Redford, a communication and change management expert met her husband Don, then a journalist, over 21 years ago. Shortly after they married, Don was diagnosed with Parkinson’s.  He was terrified of what he did not know about the disease and how the future he had just begun with his new wife would unfold. Their shared journey continues today, with Linda facilitating four support groups in Toronto and Don living in a long-term care facility, nurturing his new-found talent as a painter. 

Don had gone to his family doctor with a mild tremor and his doctor, suspecting Parkinson’s disease, sent him to see a specialist. Twenty-five people hear those words each day in Canada. Don was in shock and scared, did not know what to expect and how to manage it but over the years with support from Parkinson Canada they have created their best life possible with family and friends.

In the three years that followed, Don was not on any medications and had regular visits with a neurological specialist. For seven years, medication managed his symptoms. It was a full 10 years after diagnosis that symptoms progressed to the point where Linda knew she needed to learn more and she reached out to Parkinson Canada —and so began a lasting relationship. Linda attended the 6-week education program. This program evolved into a monthly support group for c are partners. Eleven years later, Linda is the group’s facilitator and continues to rely on the perspective and support members share with each other.

“We share our struggles and frustrations. We share what works. And, we laugh together,” says Linda.  “No one else in our world understands the hour by hour challenges and our support group colleagues become essential.”

Don saw a number of neurologists over the years and finally settled with Dr. Connie Marras at Toronto Western Hospital Movement Disorder Clinic. She would listen to his concerns and address one primary concern at each visit. Anxiety and apathy are major non-motor symptoms for Don and it was invaluable to see Dr. Mateusz Zurowski, Neuropsychiatrist at Toronto Western Hospital. These are essential members of Don’s village of care.

After 16 years, Don’s care needs increased, and Linda brought in personal support worker (PSW) help. A year later, she retired to address the increase in Don’s physical and emotional needs. His anxiety had increased, and he became more and more isolated. Linda researched local long-term care facilities and settled on Chester Village. She engaged Don’s best friend to help him understand that his care needs had become greater than what Linda could provide at home.

Although he was anxious to make a move this big, Don understood that it was necessary to take care of Linda’s needs as well as his own. Chester Village provides “an army of people” taking care of his physical needs. Wonderful care for Don and a relief for her. However, the social activities are just as important. Don attends the twice weekly painting class and the regular entertainment events. The painting program has been very important to overcoming his tendency to isolate. Family and friends rave about the quality and colours of his paintings and Don’s chest pumps out with pride and pleasure. Linda chooses 12 paintings every year and creates a calendar that they give to family and friends as a Christmas gift. None of that would happen if he had stayed at home.

Now that Linda no longer has the stress of the 24/7 caregiving role, she found herself bored. She contacted Parkinson Canada and volunteered to do more. She now facilitates four support groups; the CarePartner group of 11 years; a Newly Diagnosed group; a group for people with Parkinson’s and their partner; and she assists with the Adult Children group.

Linda appreciates the quality support provided by Parkinson Canada. When a group member asked about a clinic in Africa and the “cure” they advertised, Linda sent the question to Maria Marano, an information and referral specialist. Maria researched the clinic and determined the info was not reliable. Her response to the group member was so thorough and respectful. Maria understands the hope that false information can trigger for people and she replied with knowledge, respect and caring. This level of support is so important to people dealing with the day-to-day challenges of Parkinson’s and often don’t know where to turn.

Another major contribution came out of a survey done three years ago asking what Parkinson Canada was doing right and what was missing.

“We identified that there wasn’t enough information to support care partners,” says Linda. This led to an annual CarePartner Toronto conference and a CarePartnering manual with very thorough information and tips.  At the 2019 event, the book Care Partnering: Managing Parkinson’s Disease Together  was launched and has been flying out of the Parkinson Canada offices ever since.

During this COVID-19 pandemic, Linda gets weekly updates from Chester Village and she shares it with family and friends—Don likes to hear from people but cannot initiate a conversation—so Linda helps callers prepare a topic ahead of time. A friend developed a baseball trivia game which Don loves along with history topics. The facility has a program where they provide a video call once a week for family and friends to stay connected.

Linda’s advice to care partners and people with Parkinson’s:

  • Identify a health professional team and seek their expertise: family doctor; movement disorder neurologist; pharmacist; therapist; physical exercise specialists; etc.
  • Go to a support group. Doctors give us good medical advice but often we need to talk to others in the same situation to help us make sense of the information in day-to-day situations.
  • Talk with family and friends. It takes a village to care for someone with a chronic disease. Many people want to help but they don’t know “what help looks like.” The care partner needs support too.
  • Grandchildren can be a significant resource as they don’t know the difference between healthy or not. They don’t judge and they bring joy and innocence.
  • Above all, be positive as there are good years ahead. In Linda and Don’s case, it was 10 years before they started searching for info on how to manage Parkinson’s, 16 years before help was needed at home and 19 years before Don moved to long-term care.