Hemiparesis — June 3, 2015

Hemiparesis

Our son has left-side hemiparesis from a stroke suffered at birth.

Rehabilitation has been critical to ameliorate the effects of fine and gross motor losses even as an infant and toddler.  CIMT was started at age 3 with remarkable results.

Beginning at age 9, we began annual CIMT sessions during the summer to supplement our daily exercise program.   Dramatic advancements using fasteners, hand brakes on his bike, page turning, door knob turning/opening, medium-size buttons, video games, and improvement with many other bilateral tasks have been achieved.

Maintaining the higher levels of function entails daily practice and strengthening exercises which requires dedication from both the parents and, most importantly, our son.  Exercise has become his normal routine, one of the many lessons learned at CIMT.  He understands the benefits of CIMT, and wants to improve.

This year he will continue with a new supplemental program Powerhouse Therapy has created for older kids.

We are supporters of CIMT because the results have been so impressive.

– Parents to a 12 year old boy

Carson on Cerebral Palsy —

Carson on Cerebral Palsy

Carson was diagnosed with cerebral palsy when he was 8 months old.

We spent years in physical & occupational therapy which benefited Carson greatly and kept him “on track”.  However, about 5th grade the demands of school and Carson’s own interest made weekly therapy visits seem impossible.  The pre-teen growth spurt hit and before we knew it Carson had regressed tremendously in his ability to use his right hand and his limp had become more severe.  When we went for his annual visit with his neurologist in May (at the end of his 7th grade year) and she was extremely concerned about his regression. She recommended Camp Open Hands for Carson.  With a limited amount of time to make a decision, I contacted Charlene and she was wonderful in explaining what the camp had to offer.  However, I remained concerned about Carson being the oldest camper attending and the age difference between him and the other campers.  It was also a big financial and time commitment since it would be necessary for us to stay in Roswell for those 3 weeks.  With many mixed emotions, but with the reality of only a short window remaining to help Carson we signed up.  It was one of the best decisions we have ever made!  The staff was great and the program was challenging.  There was even a point in the camp when he wanted to quit.  I think the camp is harder in some ways for a 13 year old than for the younger campers due to all of the emotional issues they are dealing with as well as their physical issues.  Carson had to answer the question, “is this as good as it gets and am I willing to settle for where I am now?”  These were tough questions for a 13 year old but he choose to stay and the confidence and determination he gained from the camp continues with him today.  He came home from camp actively engaging his right hand and committed to a new strength training program.  As Charlene, put it to Carson and me…this isn’t a choice.  The camp also showed us it was time for Carson to begin taking responsibility for managing his CP.  Today he is in great physical shape (because he has stayed committed to strength training) and his limp is under control. He also continues to push himself to engage his right hand.  Also, my concerns about the age difference were unfounded.  Charlene and the staff did a great job tailoring the program to fit different age groups.  Even better the older and younger children loved being with and helping one another.  Carson still talks about some of the younger children from camp.  It has been 2 summers since Carson attended camp and he has come a long way! He is completing his Freshman year of high school with high honors, he is enrolled in a driver rehabilitation program at CHOA, and he is on target to have his drivers license in August!  Camp Open Hands even prepared Carson for driving.  Each child is evaluated before being accepted into the driver program to determine if they need additional therapy before beginning the program. Several of the tasks he was asked to complete would have been impossible had he not attended camp and would have delayed him driving.  As a parent, I would recommend the camp to you and your child.  We went for  “physical help” and came away with that and so much more!

Mom of Carson

Children can have strokes —

Children can have strokes

 

Most people do not know that children can have strokes. In fact, pediatric strokes occur at the highest rate in infants who are younger than 1 month old, about 1 in every 2800.

 

While most people may not be aware of these statistics, the kids, and their parents, who struggle with the life-long effects of strokes know this all too well.

Maya, a Georgia native, was born premature and it was soon discovered had suffered a stroke prior to birth leaving her with weakness on her left-side. According to her mother, Meghan “until age 3, she used her right hand exclusively for all activities and pretty much ignored her left side. She was frustrated and totally dependent on others to help with any 2-handed task. We saw the effects this was having on her and were looking for an innovative way we could help her.”

 

They found it at Powerhouse Therapy. Five years ago Powerhouse Therapy created Camp Open Hands (COH), in Roswell Georgia. COH is designed for children 2 to 15 years who struggle with one-sided weakness due to a stroke, Cerebral Palsy, traumatic head injury, or Brachial Plexus injury.

 

The camp utilizes Constraint Induced Therapy (CIT), an evidenced based approach, to address the effects of learned non-use by constraining use of the stronger or unaffected extremity. Children where a removable soft cast on their unaffected arm during camp hours so the focus can be on increasing functional use of their affected arm.

 

We put together a new camp approach based on CIT that offered a different way for these kids to make substantial gains in function in a short period of time. When we looked around the country, we saw that there were very few places that these families could turn for help, so we started COH.

 

Children come to Roswell, GA to participate in this unique camp from all over the U.S. The campers participate in fun activities built around themes ranging from Pirate Day to Mad Scientist to the ultra-popular and confidence-boosting Superhero Day – all while wearing their casts!

What makes the camp formula such a success, is that while the children work on gaining additional function with their “weak” arm, they are also meeting peers who face similar challenges and building confidence in using their newfound life skills.

 

Here’s what Maya’s mother had to say after the camp. “With Maya, we noticed significant improvements almost immediately at home! They still make me tear up, just thinking about them – like when Maya reached with her left hand at the dinner table to get her own food for the first time ever!  All of a sudden, she is eager and excited to use her left hand, and is clapping and cheering for herself. We are so grateful for this camp, its location, and the therapists and volunteers who have invested in her and the other kids. It really is a miraculous camp!”

Now in its sixth year, Camp Open Hands is staffed by OTs, PTs and student volunteers who are studying in the field. Therapists provide support and a home treatment plan to the parents so the improvements can transfer into the real life environment once the camp is over.

Watching the expressions on these kids faces and the absolute joy in their parents when they do something they’ve never even dreamt of doing before – something as basic as picking up their own fork to eat – makes this all so worthwhile!

Charlene Kurkjian,

Executive Director of Powerhouse Therapy