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Hunker woman opens shop with a mission

| Thursday, May 8, 2014, 8:55 p.m.
Rose Buric of Hunker poses in Honeysuckle Haven, her new gift shop in Youngwood that will serve as a meeting place for people dealing with a rare brain disease.

A new gift shop — with a serious twist — opened in Youngwood this month.

Honeysuckle Haven features home décor items, jewelry, gift baskets, gourmet coffee, wall hangings and more.

“There's a little bit of everything for every part of your home,” said Rose Buric of Hunker, who retired from the health care industry after 30 years.

But this shop is unique.

Honeysuckle Haven will serve as a support group meeting place for those affected by Progressive Supranuclear Palsy, or PSP. The first meeting will be held on June 18.

Buric's sister, Antoinette “Toni” Rosen, 62, of North Huntingdon died from the disease last summer.

According to the CurePSP Foundation, the rare brain disease causes symptoms with movement, vision, swallowing and speech.

There is no medication to treat it, prevent it or cure it.

A classic sign of the disease is the inability to aim the eyes properly because of lesions in the area of the brain that coordinates eye movement.

It is often misdiagnosed as Parkinson's disease. Approximately 20,000 Americans — or one in every 100,000 people over age 60 — has PSP, according to the foundation. Men are said to be more commonly afflicted.

Parkinson's disease is commonly known as a disorder of the brain that leads to shaking and difficulty with walking, movement and coordination. In comparison, it is said to affect more than 500,000 Americans.

PSP was first recognized as a distinct disorder in 1964 when three scientists published a paper differentiating the condition from Parkinson's. PSP has also been referred to as Steele-Richardson-Olszewski syndrome, reflecting the names of those scientists.

Buric's sister was diagnosed only six months before she died. At the end, Buric said, her sister couldn't move her arms or legs. She was bedridden and in a lot of pain.

Trish Caruana, vice president of programs and education at Cure PSP, helped to train Buric to be a volunteer.

Caruana said PSP support groups are invaluable because many who suffer may not have talked to anyone about the disease. The support group is for families and friends affected by the disease, as well as patients.

Such groups “reduce isolation and are a good opportunity to share information about things that might have worked for you,” said Caruana.

There are currently 570 people in the Pittsburgh region who are a part of the PSP Foundation database, she said. “Our goal is to create more and more groups because there are people affected in every state,” Caruana said.

“Knowing there are others who care inspires hope for people in seeing someone else go through it. Only another with the disease can truly understand what you are going through,” Caruana said.

The foundation relies on volunteers to run support groups; usually, they have lost a loved one.

Lucia Sriram's husband, Ricardo, 70, was diagnosed in 2012, but she said there were many misdiagnoses and problems since 2006.

As the sole caretaker for her husband, she would welcome a support group but there are none in her area.

“There are no support groups here in Miami, Fla.,” said Sriram, who is writing a memoir about her husband's illness. “(Through the PSP Foundation), I attend webinars online, but would love to have a support group. I just can't do it on my own.”

After her sister's death, Buric knew she wanted to do something to help others affected by the illness.

“We were not aware of any help or anything,” she said. “This is a way for anyone who does have it to come and talk with other people going through the same thing. Even if there are only a few people, we're still going to have the group.”

Michele Stewardson is a contributing writer for Trib Total Media.