I have volunteered with the Parkinson Association of Alberta (PAA) for many years and find it very rewarding. I first volunteered while my husband, Bob, was on his journey with Parkinson Disease (PD). Bob was diagnosed with PD in 2010, just as we were about to travel to Peru to visit one of our sons. Everything felt so unknown. We were tempted to cancel our trip, but our doctor encouraged us to go. He said it would only get more complicated to travel as time passed.
Initially, Bob had no tremor, so we thought maybe it wasn’t so bad. We quickly learned that a tremor is not the only symptom a person with PD can have. Truthfully, I felt helpless. There was nothing I could do to change things for Bob. While talking to some new friends we met on holiday in Arizona in 2014, we learned that the new PAA facility would be opening in Edmonton in 2015.
The PAA quickly became family. PD alters your life and wears you down. The support groups helped us identify with people, and we felt like we belonged. Bob usually did not want to go anywhere, but never refused to go to the PAA. We had a lot of questions, and the specialists only had limited time. The PAA was so open. We received high-quality service, and they took the time we needed with us.
We attended the support groups regularly. Sometimes, the groups were split into two sections—those with PD and those who are the care partners. It was a good thing. Each person’s journey is different, and it was helpful to come together with people who understood what we were going through.
In addition to the support groups, Bob attended the exercise classes, which is when I first started volunteering. While he was exercising, I assembled information packages for the PAA. In 2017, Bob fell and fractured his hip, which resulted in a lengthy hospital stay and a move to Long-Term Care (LTC). While he was in LTC, I visited him every day for as long as I could. I continued to attend the Thursday meetings at the PAA for support and volunteered for the Socials, setting up and preparing the coffee and juice.
My Bob passed away in March of 2020. After he passed away, a widowed friend and I continued to attend the support group, but we were having a hard time. It was like reliving everything again. We needed something for widows. The PAA is amazing. We suggested a widow’s group, and it wasn’t long before we had one. There were at least six of us to start, and I think we have at least four more who have joined since then. We meet in person at the PAA for about an hour or so, and then head out for lunch together. It allows us to hear everyone’s story as a group instead of just the one person we might sit next to at lunch.
Since Bob’s passing, I have increased the amount of volunteering I do. Twice a year, PAA does Touch-Base calls to check in with members to see how they are doing. I go into the PAA office and make those calls. I introduce myself on behalf of the PAA, ask how things are going, and ask if PAA can do anything to help. I often have to leave a message, so I leave the PAA’s phone number and invite the member to call back. Sometimes the care partner answers and I get to be their sounding board because I have been there and I have time to listen.
It’s rewarding. I give them my time. It has been neat to go to the Socials and put a face to a name when we meet face to face. I have always enjoyed being busy. Our two sons live far away, so I have time to spare and am happy to give of my time.
If there is anything I could share with others dealing with Parkinson’s, it would be that you do not have to go through it alone. Sharing your strengths, fears, hope, and feelings with others, as well as with PAA, is so beneficial, as they understand perhaps as few others can. The support Bob and I received from PAA did not change the disease, but it helped us deal with it and understand it a bit more. We often used to say, it isn’t easy, but it is doable.
