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Stroke survivors, caregivers enjoy support and fun

Terri and Jay Darr, of Adams Towship, join in on the percussion circle that kicked off the seventh annual Retreat & Refresh Stroke Camp last weekend at Crestfield Camp and Conference Center in Worth Township. Terri Darr is fighting her way back from a stroke she suffered in 2019. Morgan Phillips/Butler Eagle

WORTH TWP — Stroke survivors of all ages, abilities and backgrounds were gleeful on Friday afternoon, June 14, as they signed in at a weekend event they’ve anticipated for months.

The seventh annual Retreat & Refresh Stroke Camp, sponsored by UPMC Rehabilitation Institute, was held at Crestfield Camp and Conference Center last weekend.

The event’s theme, “Magical Memories,” commemorated the 20th year since the United Stroke Alliance held its first stroke camp in Peoria, Ill., in 2004.

Stacey Mlodzianowski, a UPMC occupational therapist, brought stroke camp to the Pittsburgh region after volunteering at a camp in New Jersey.

“When I came to UPMC, I knew there was a need,” Mlodzianowski said.

The three-day weekend is aimed at supporting stroke survivors and their caregivers, if they have one.

After registration Friday afternoon, all 25 participants who signed up for the camp sat in a huge circle around a music therapist, who led them in using a wide array of percussion instruments to perform call-and-response songs, which were therapeutic for many survivors.

After the fun and raucous session, survivors and caregivers were divided into individual groups for breakout sessions, where they discussed their challenges and successes, and shared helpful information.

Weekend activities at stroke camp included team activities; a campfire; a pampering session with massages, manicures and paraffin dips; crafts; coloring pages; golf cart rides; fishing; swimming; Stroke Camp’s Got Talent; free time and quiet time; and a final drum circle Sunday before lunchtime.

“I hope the sense of community built from this weekend will last longer than the weekend,” Mlodzianowski said.

Jay and Terri Darr, of Adams Township, attended the weekend event for the first time since Terri’s stroke in 2019.

“I thought it was a great opportunity for me to get in communication with other stroke victims and learn and talk about some things I’ve been through,” Terri said, “and maybe help where I can.”

She used a wheelchair, but kept her cane handy, which she can now use.

“I’m still working,” Terri said.

Jay never strayed more than a few feet from his wife, unless he was attending a breakout session, which are always divided.

“He’s my rock,” Terri said. “He is the peace and the calm in the storm I’m going through.”

She said her husband also keeps her eyes on the prize as she pursues the sometimes grueling rehabilitation required since her stroke.

“He encourages me, because I drift off sometimes,” Terri said.

She said on occasion, their 26-year-old son comes to take his dad golfing so he can have a break.

“He takes care of me and sometimes I have to remind him to take care of himself,” Terri said.

Jay said he looked forward to connecting with other caregivers at the camp.

“Because sometimes it gets lonely,” he said. “I want to learn from them or see how I can help.”

He admits he never thought he’d be a caregiver at the midpoint in the couple’s marriage.

“It just changes life,” Jay said. “It’s a shock. We both like to be active and travel.”

Terri said she looks forward to a trip to Barbados when she is finally able.

“My goal is to get back on my feet and help other stroke survivors as well,” she said.

But she knows there is tough work ahead to get to that point.

“I want to fight to get better,” Terri said. “This wheelchair is not where I want to stay.”

Chelsea Perry, of Center Township, graduated from Butler High School in 2003 and had a stroke in 2006 after an aneurysm in her brain ruptured.

Perry, who has some damage on her left side and uses a cane, has attended five or six stroke camps.

“It’s fun,” she said. “It’s active and I get to meet people and socialize. And I get away from my parents and be independent.”

She said she has met people at stroke camp who she has kept in touch with for years.

“It’s just the best,” Perry said. “If you had a stroke, you need to come. It’s a safe place to be independent.”

She likes participating in the activities and breakout sessions, which she often finds therapeutic.

“You can express your emotions and feelings and you get to help others, too,” Perry said.

Mlodzianowski said 15 volunteer caregivers from UPMC work at the camp, and are invited to enjoy activities as well when they are not leading a breakout session.

“I literally reached out to the whole (health care) system,” she said.

She said UPMC nurses, doctors, residents, therapists and even a concierge were among the stroke camp volunteers.

“Anyone can be a volunteer,” Mlodzianowski said.

Five coordinators from the United Stroke Alliance arranged the activities and breakout sessions, and run the camp during the weekend, she said.

Mlodzianowski said campers learn about the annual event through their doctors, therapists and other stroke care providers.

The cost for the all-inclusive weekend is $150, but a scholarship is in place for those who cannot afford the camp.

“The United Stroke Alliance will never turn someone down,” Mlodzianowski said.

Her favorite aspect of stroke camp is the rock wall in one outbuilding at the large and cozy camp and conference center.

“One survivor climbed a little more and a little more each year,” Mlodzianowski said. “When she registered, she looked at me and said ‘I’m climbing the whole thing this weekend.’”

She hopes stroke camp will go on indefinitely to help those who have suffered such a challenging medical issue.

“We go above and beyond with patients to really make a difference in their lives during such a terrible time in their lives,” Mlodzianowski said. “It’s really just a weekend to remember who they are as a person, not just a stroke survivor or caregiver.

“It’s nice to get away for the weekend and put things aside for a little bit.”

A music therapist led a percussion circle that opened the seventh annual Retreat & Refresh Stroke Camp last weekend at the Crestfield Camp and Conference Center in Worth Township. Morgan Phillips/Butler Eagle
The opening day of the Retreat & Refresh Stroke Camp boasted an “ice breaker” percussion circle last weekend at Crestfield Camp and Conference Center in Worth Township. Morgan Phillips/Butler Eagle
Chelsea Perry, of Center Township, joins in on the percussion circle that kicked off the seventh annual Retreat & Refresh Stroke Camp last weekend at Crestfield Camp and Conference Center in Worth Township. Perry suffered a stroke just three years after graduating from Butler Senior High in 2003. Morgan Phillips/Butler Eagle
Terri and Jay Darr, of Adams Towship, enjoy the opening percussion circle at the seventh annual Retreat & Refresh Stroke Camp last weekend at Crestfield Camp and Conference Center in Worth Township. Morgan Phillips/Butler Eagle
Terri and Jay Darr, of Adams Towship, participate in the opening percussion circle at the seventh annual Retreat & Refresh Stroke Camp last weekend at Crestfield Camp and Conference Center in Worth Township. The music therapist who led the circle appears with her guitar. Morgan Phillips/Butler Eagle
Terri and Jay Darr, of Adams Towship, join in on the percussion circle that kicked off the seventh annual Retreat & Refresh Stroke Camp last weekend at Crestfield Camp and Conference Center in Worth Township. Morgan Phillips/Butler Eagle

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