Local Support Groups

ONTARIO

Burlington, Ontario

Ontario PSP/MSA/CBD Support Group patients and caregivers

Location: Port Nelson United Church, 3132 South Drive, Burlington ON

Meeting Time: Last Monday of every month 1-3pm (Excluding December)

Hosted by: CCF for PSP Awareness

Facilitator: January Bailey Will, EMAIL

January's Experience with PSP

Christmas in 2015 brought unexpected observations. My stepson and his girlfriend, who had last seen Jim in June, noticed something off about his behavior during their holiday visit. They wondered if he had been drinking, as his driving seemed different. To me, he seemed the same, but I recalled an incident in June when Jim had an accident on a fishing trip. But beyond that, nothing seemed out of place.

As 2016 rolled in, Jim started having backward falls. He brushed it off, blaming his office chair. By September, while I was in Scotland, his frequent calls to my cell phone raised eyebrows. The frequency of his falls increased, necessitating the help of a Personal Support Worker, especially for tasks like showering. Jim’s interest in routine activities dwindled, making me wonder how he could forget activities he once relished.

One particularly alarming incident at work landed him in the hospital. They pointed out his low B1 levels, which led to cognitive tests and the revocation of his driving license. But deep down, I felt there was a bigger issue. Our visit to a neurologist confirmed my suspicions. Still, their advice was just to keep up with B1 supplements.

Jim’s enthusiasm for life was ebbing away. His zest for socializing was gone, replaced by an ever-present desire to sleep. I found myself asking why we were being tested this way.

Life had been good to us. We were comfortable, and we enjoyed our travels. Our journey for answers took a turn when we met an insightful neurologist who diagnosed Jim with PSP. Unfamiliar with the term, I researched it at home, only to be overwhelmed with grief. Jim’s symptoms matched: the falls, abnormal eye movements, choking during meals, and imbalance.

Our subsequent visits painted a bleak picture. Jim’s deteriorating condition was evident, but his cognitive abilities remained intact. He even suggested moving to Long-Term Care (LTC), thinking it would ease my burden. How could I even consider it? He was my everything.

However, we pushed on. We got a walker and engaged in community activities. Yet, Jim’s health challenges persisted. By 2019, with a heavy heart, I put him on the waiting list for LTC. When he finally moved in August, a familiar face from his day program offered some solace. I visited daily, standing by him.

By February 2020, Jim’s health plummeted. He was losing weight rapidly, struggling with food, and eventually needed oxygen support. PSP’s cruel nature became more apparent each day. Witnessing a loved one’s decline like this was agonizing. On February 12th, he was moved to palliative care. I stayed by his side, ensuring he felt loved until his last breath on February 14th at 8 pm. I spoke to him for 15 more minutes, as advised, hoping he’d hear me. My heart was broken, but I took solace knowing he was now free from pain. xo

 

Burlington Support Group (Parkinson’s, PSP/MSA/CBD)

Address : Appleby Place - 500 Appleby Line, Burlington, ON L7L 5Z6, Canada

Date(s): Meets the 3rd Monday of each month (except July & August)

Time : 1:00 PM-3:00 PM

Contact Telephone : 1-800-565-3000    

Contact Email : info@parkinson.ca

By: Parkinson Canada

Address : St. Paul Apostle Church - 2265 Headon Rd, Burlington, ON L7M 4E2, Canada

Date(s) : Meets the 2nd Tuesday of each month (except July & August)

Time : 1:00 PM-3:00 PM

Contact Telephone : 1-800-565-3000  

Contact Email : info@parkinson.ca

By: Parkinson Canada

 

Toronto, Ontario

Toronto Care Partner Group (Parkinson’s, PSP/MSA/CBD)

Address: Parkinson Canada Office

4211 Yonge Street, Suite 316
Toronto, Ontario

Date(s) : Meet the 3rd Wednesday of every month.

Remote video attendance available.

Time : 6:15 pm – 8:00 pm

Contact: 1-800-565-3000

Contact Email :  info@parkinson.ca

By: Parkinson Canada