Local family raising funds for Cure PSP

‘There’s just so much love and grief with nowhere to go’

HALDIMAND—The signs that something was wrong with Carol Craig’s health were very subtle at first. 

“She was pretty flawless until her symptoms started” about three years ago, said Julie Craig, Carol’s daughter. “Even her just forgetting something like a birthday was so unlike her. For most people, that wouldn’t be a red flag, but for her, it was.” 

Carol Craig

Craig said her mom was a very organized and competent person: “She ran our entire family effortlessly.” 

This included being wife to Roland Craig for 47 years; mom to Heather Lohnes, Andy Craig, Julie Craig, and Cathie Guardanapo; grandma to 11; and great-grandma to one. She also worked as a piano teacher, living in Caledonia for many years before moving to Jarvis. 

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At first, the family thought Carol might be in the early stages of dementia, so they visited a specialist in Toronto. Through that, Carol was short listed to be part of a drug trial, but then physical symptoms started manifesting. 

“Her left side wasn’t operating properly. She lost control of it, and that’s not typical of Alzheimer’s; that’s more of a movement disorder,” Craig explained. 

“We really grappled to understand what was coming, and as a family, worked really hard to get her to the expert that we needed in order to get some answers.”

Carol was removed from the drug trial, and her family instead connected with a movement disorders clinic in Toronto where she was diagnosed as likely having corticobasal syndrome (CBS); Craig explained that the diagnosis can’t be confirmed until a patient’s brain is examined postmortem. 

The news was devastating – CBS has no cure. 

“Really, at that point, it was just making mom as comfortable as possible and trying to make things as normal as possible and care for her as well as we could,” Craig said. 

Carol’s health deteriorated rapidly. While she had been a gifted athlete – her obituary noted that she played fastball for the Championship Thamesville Ladies Team in 1971 and was voted League MVP in 1987 playing for the Three Pitch Blues Sisters Team – she soon couldn’t move without a wheelchair. Carol needed full-time care, so she moved into Parkview Meadows’ long-term care unit in Townsend. 

Craig said the staff there were “incredible; they were very caring of my mom.” 

Carol’s new needs meant “her world was just her room; it became so much smaller,” Craig said. “As that started to happen, we were just looking for ways to expand her world, get some normalcy back, be able to get her out into nature a little bit more.” 

The family started advocating for, and eventually was able to get, a pushchair through Carol’s insurance. 

“I used to run with my mom; she was an avid runner,” Craig said. The pushchair allowed them to do the activity together again on the trails and pathways. 

“It was very special, because connecting with my mom in the later stages of her disease was challenging,” Craig said. “Her disease was pretty awful, in that it was both physical and mental.”

Craig had planned to participate in a fundraising run with her mom on May 11, but sadly, Carol passed away on April 27, 2024 at the age of 67. 

So now, some of Carol’s friends and family are going to be participating in a run on June 9. 

They’re raising funds for the organization Cure PSP, which works to raise both funds and awareness for research into progressive supranuclear palsy (PSP) and associated disorders, which includes CBS. 

Craig said this is important, because at the moment, “There’s no research that’s promising; they don’t really understand (these diseases) very well. It’s lacking in support and funds.” 

A potential positive, though, is that these diseases are similar enough that any movement in understanding one gives insight and possibly answers into the others. 

“They’re all very much linked,” Craig said. 

So far, Carol’s Cronies – as the group has dubbed themselves – have raised over $5,800 as of print deadline. 

“We’ve far surpassed what I thought we would,” Craig said. Anyone who wishes to donate can do so online at give.curepsp.org/fundraiser/5307842. 

Roland said when he looks at what his kids are doing to honour their mom’s memory, he’s “overwhelmed.… I’m very happy about it; pleased and proud.” 

As to the family’s plans going forward, Craig said she wasn’t sure if it would be a run again next year, but she strongly suspects they’ll continue their support for the organization in some form.  

“There’s just so much love and grief with nowhere to go; it’s a lot of energy. So I definitely think we will be continuing to support Cure PSP.”