The big surprise of volunteering

Apr 25, 2022 | Blog, The Lived Experience

by Shelley – a member of ONDRI’s Patient & Community Advisory Committee

My parents taught me the importance of volunteerism, of donating my time and effort and giving back. So it wasn’t until I started volunteering that I realized it’s far from a one-way street with me acting as some kind of benefactor.

I’ve been surprised – and delighted – to learn that volunteerism is a two-way street on which I receive far more than I give.

When my mother was diagnosed with dementia several years ago, I was told that there were shockingly limited things I could do to help her. As a lawyer, I was used to solving people’s problems; but this wasn’t something I could fix. I felt helpless, with no purpose.

In the summer of 2020, I joined the Patient and Community Advisory Committee (PCAC) of ONDRI, believing that my participation was a way to give, to gift my common sense knowledge about dementia.

But now I look back and recognize how participating on the PCAC has enhanced my life, given me a feeling of purpose and hope for the future … and it has offered me unexpected and fascinating opportunities.

Volunteering has enhanced my life in many ways. To start, through the PCAC, I’ve met smart, touching and extraordinarily brave people who are struggling similarly to my mother or to me. Sharing experiences with these wonderful people has brought me solace at times. But, more than that, they’ve filled me with hope that together we can influence research so it responds to real needs and concretely improves lives.

I’ve also met passionate researchers, some who are among my personal heroes.

From them, I’ve learned so much about dementia and cutting-edge research, also about the research process and translating research results to make concrete change.

I am heartened beyond words to see how these researchers seek out and value contributions of people with lived experience when it comes to conceiving, prioritizing and carrying out research. That initial feeling of helplessness after hearing my mother’s diagnosis has receded somewhat because the PCAC has been such a useful and productive channel.

Taking it a step further, when I learned about ONDRI’s current research study on aging and neurodegeneration (the HANDDS-ONT study), I jumped at the opportunity to participate in the healthy control group.

Participating in the ONDRI study afforded me the possibility of using my family’s situation for something positive and forward-looking.

I found every aspect of participating in the study to be empowering … and it filled me with hope for the future.

Another great thing about volunteering is that sometimes it offers opportunities that you might never otherwise have in your life. I’ve been so lucky to have two.

Last year, I participated as one of three panelists in a Public Talk, put on by the Ontario Brain Institute (OBI – ONDRI’s funder), on brain health and sleep viewed by over 1300 people around the world. And recently, I taped a podcast with two OBI-affiliated researchers about participating in research.

I am very proud of these accomplishments that are directly due to volunteering. No question, volunteering has done more for me than I for it!