Cosmonaut Cerebral Palsy Suit

Friday February 19th, 1999

Cosmonaut Cerebral Palsy Treatment

Nicholas Priamos has the debilitating brain disorder cerebral palsy, and his mother is determined to give him every chance for independence. Together, they took extreme measures - including flying to a far off land to experiment with an unconventional, but promising, therapy.

For three year old Nick Piamos, catching a ball is a nearly impossible task. He suffered a brain hemorrhage after birth that led to cerebral palsy, so he has poor control of his muscles and speaks only a few words. And he can't feed himself, dress himself or even sit up without his mother's help.

His mother Michelle told EXTRA: "He doesn't do a whole lot on his own. He's not walking on his own, standing, sitting on his own. He is kinda like one of those weebles, but he does fall down."

Nick's parents had tried everything -- physical therapy, occupational therapy, even horseback riding therapy -- but Nick's progress was slow, and doctors have told them not to expect too much. They said Nick will never walk or be able to care for himself. His father Greg told EXTRA: "As the parent of a disabled child there is always a sense that you're simply not doing enough to bring him along for him to develop his independence and improve his condition."

So Michelle did some investigating on the Internet from her home in Burbank., California... and she discovered a new, very unconventional therapy for cerebral palsy. It's offered only at the Euromed Clinic in Poland, where they use technology that comes from even farther away.

The therapy was born out of the Russian Space program, and first applied to the Mir cosmonauts whose muscles were debilitated by months in zero gravity. Its centerpiece is the Adeli Suit -- A strange looking contraption, covered with interconnecting elastic cords which are said to realign the muscles, teaching them how to move properly.

The suit acts as an external skeleton and all over Nautilus machine in one, guiding the body while strengthening it. Only about six hundred cerebral palsy patients have tried this therapy so far -- most of them Polish.

"When we did hear about this space therapy, and of course we were two hundred percent skeptical about that, both of us I mean give me a break." Izabela and Richard Koscielny are Polish-born physical therapists who now live in Michigan. Their daughter Kaya has cerebral palsy -- and despite years of therapy, at the age of 6, she was still dependent on a walker. Izabela continued to tell EXTRA: "If you are desperate and you are looking for something, you will try anything."

So they gave the Euromed Clinic a shot after they heard encouraging news from friends in Poland. And, to their amazement, after one month of Adeli Suit therapy Kaya took her first unassisted steps. It was a moment mother and daughter will never forget. Kaya told EXTRA: "When I finished taking the five steps my therapist like lay on the ground and lifted me up and she cheered." Izabela said: "It was something so unexpected and I was basically screaming and jumping like everyone else. The therapists too. She surprised everyone so...that was the greatest day of my life."

The Koscielny's were so amazed by Kaya's progress, they became the U.S. spokespersons for "the Adeli Suit therapy." Now they spread the word at support groups, offer advice to families who are considering the Euromed Clinic, and swap notes with other families who have returned from Poland with their own success stories.

And those very testimonials were enough to convince Michelle and Greg Priamos. They decided to spend about 10,000 dollars to send Nick to Poland for a month. Greg says: "We felt that this was absolutely something we had to do for him. So we could say that we've done everything we possibly can to give him the best chance to live a normal life." And what did Michelle hope Nick would get out of the therapy? "The reality is that Nick is pretty involved and I'm not expecting him to come back from therapy running into my arms. I'm more realistic than that but at the same time 60 percent of all the children who go will have improved speech and that's huge to us because I think it's my version of hell to know what you want to say and not be able to say it... but on top of that I would like to have him say I love you, and hear it."

So after a 24 hour trip, Michelle and Nick arrived in Mielno, Poland. It's a tiny resort village on the gray and blustery Baltic sea. Mostly abandoned in winter, the only sounds you hear are the wind, the waves and the sea gulls. Inside a concrete block building was their new home... The Euromed Clinic.

Nick's therapy regimen was intense -- Six days a week, six hours a day. It started at 8 am with stretching, then he was covered in hot gel packs to loosen him up. The pampering continued with an hour long massage to get all those kinks out, and the real work began as he was strapped into his custom fitted Adeli Suit.

Each suit is unique, with different chords pulling at different tensions depending on the child's individual strengths and weaknesses. Nick's three therapists put him through a battery of movements, always ensuring he used the proper form. His English speaking translator supplied motivation by reading Sesame Street books.

But make no mistake, it was tough work. Fatiguing, and at times painful, definitely an intense workout. Nick occasionally erupted into fits of gut wrenching crying, a difficult thing for Michelle to watch. "You just kind of have to sit back, take it and give him lots of extra hugs at the end. Because it's not like I'm gonna make them stop cause it's doing what it's supposed to be doing."

She says the suit bolstered him, helping him through movements which he could never attempt on his own. Like crawling and rolling over -- things Nick has never done before. Michelle described for EXTRA: "More than anything it seems like the kids are wearing a frame that frames the body in the way it's supposed to work."

After two hours in the suit, Nick would go to the monkey cage to lift weights on pulleys. At that point, his exhaustion was evident...and finally, at 2 pm, Nick got a well earned rest. Michelle would sing him to sleep as he underwent magnetic therapy.

After Nicholas worked hard for 28 days he had made a lot of new friends, as 17 of the clinic's 40 patients that month were Americans -- and inside practically every room there was a story of personal triumph!

16-year-old Sis took her first independent steps on crutches, and her mother told EXTRA that only one month ago she was in a wheelchair. "I can't believe it's happening. I was always told that she couldn't do the crutches because she wasn't sturdy enough to do it."

10-year-old Patrick went from not being able to stand up on his own to taking a few tentative steps. His father says: "I talked to my wife, she said 'Oh my God, he couldn't even hold his own weight' and I said 'Oh -- well he's taking 5 or 6 steps now.' It's really a good feeling."

Three-year-old Schuyler was on her third trip to Euromed, proving all the doctors at home wrong. Her mother Ann said: "The walking with crutches is brand new. We started out maybe two weeks ago and every day she gets stronger."

And 10 year old Jesse, who couldn't even support his own weight when he arrived, is now taking assisted steps with crutches and splints. Jesse himself said: "At first I didn't want to do this suit.. But look at me now, I'm doing this suit and getting much more better. Now I will be walking by myself."

Of course, it's not all work... the kids are there to encourage each other through the therapy.

But what kind of progress did Nicholas made? Remember that a month ago his mother described him as a weeble, who couldn't even sit up on his own. Now he can sit up without any help, hold his head up and for the first time, he is standing on his own.

Michelle told EXTRA: "When I think of how involved he is and how many strides he's made in the past 30 days, it blows my mind. It doesn't look like an enormous difference to someone from the outside looking in mainly because he's not doing handsprings. But the reality is it's very close to independence."

And perhaps the biggest payoff came a just a week into therapy, when Nick and Michelle were riding a bus into town. It was the breakthrough she was hoping for: "He said 'I love you.' And that's what I wanted. That's all I wanted, of everything, if I could hear my son, in three and a half years he's never said that."

So as they return home to their family, Michelle and Nick share a new bond, and a new hope. But their work is far from over -- they already have plans to return to Poland in May.

And what would Michelle say to other parents who are considering this therapy? "It works, and it was worth every minute of time we spent away from home."

It's important to note this is no miracle cure, and in order to preserve their results, patients must maintain their conditioning after the therapy ends. If studies prove the suit to be effective, there may be similar clinics in the U.S. within a couple years.

For more info on the Cosmonaut Suit Therapy story (For Cerebal Palsy)
US Contacts:
Izabela and Richard Koscielny
Loctaed in West Bloomfield, Michigan
248-865-9549 (Voice & Fax)
email: Rkoscielny@aol..com

The Adeli Suit Fund (A support group that raises money to pay for therapy) is at:
248-585-4042

In Poland:
Euromed Rehabilitation Center
Poland
76-032 Mielno, Aleja Piastow 10

Attn: Ryszard Kowalczyk, Director

Phone: (0-11-48) 94 31 89 210 ext 450
(0-11-48) 94 31 89 211
(0-11-48) 94 31 89 213
(0-11-48) 94 31 89 854

email: euromed@telbank.pl
Internet:

http://www.euromed.bptnet.pl