This article, featuring Year One participant Stephen (shown above) was published in the Miles City Star in October of 2016. Because it is not currently available online, the Miles City Star kindly agreed to let us post it on our website.
Montana Postural Care Project helps with impaired movement, shows great promise for afflicted
By ELAINE FORMAN
Miles City Star Staff Writer
Local participants came out winners in a six-month pilot project called the Montana Postural Care Project to improve the quality of life for people with impaired movement.
Stephen Conley is 16 years old and has cerebral palsy. He’s had many surgeries, has three titanium rods in his back and has had a hip replacement.
After six months, he now has some relief and can get rest. So can his family.
Rachel Skaggs is the guardian for Laurie — a 38-year-old woman with cerebral palsy who has had a leg amputated. Rachel says Laurie is more rested and happier now as a result of the project.
Stephen and Laurie are both from the Miles City area and have shown the best improvement of the 30 participants from across the state.
All the participants that followed through with the project saw great improvements.
This project was aimed mostly to adults.
It was funded by the Montana Council on Developmental Disabilities and conducted by Posture 24-7, a non-profit organization based in Missoula with a goal to raise awareness and educate on the benefits of 24-hour postural care to improve the lives of people with disabilities.
The project ran from March to September. A second year will be funded after the positive results.
Project Director Tamara Kittelson-Aldred is an occupational therapist, specializing in wheelchair seating.
A lot of emphasis is placed on wheelchair systems to provide the right support for a person, but Tamara would like to see that same care be placed on the night-time hours also after hearing about the practice that is used in Europe.
Positioning around the clock is a non-invasive way to support the health and well-being of people who have difficulty changing their positions.
Children and adults using wheelchairs or other mobility devices are especially vulnerable to the force of gravity. Children are at special risk during growth spurts and at night with crooked sleeping positions that can lead to long-term problems like scoliosis and joint dislocations.
Around-the-clock postural care is a gentle, non-invasive, inexpensive way to promote health and quality of life. It can protect the shape of a person’s body, help balance muscle tone, reduce pain, ease physical care, improve sitting posture and tolerance, and help people sleep better.
According to Tamara, almost everyone’s body shape is mostly symmetrical when they are born, which allows people to function and be healthy. When people develop asymmetries like scoliosis, contractures and joint problems, their health suffers.
When bodies become really asymmetrical it can result in pain, difficulty breathing and eating, and difficulty sitting and moving. It also threatens people lives when their lungs, heart and other organs are shifted out of place as the body changes shape. Right now the main way this is dealt with is through surgery once conditions are very severe, or sometimes through 24-hour bracing.
“For cerebral palsy (the posture) just gets worse and worse and worse,” she said, explaining that it get harder to do everyday tasks like getting the person dressed. The person’s digestion, breathing and sleep suffers.
“We are saying that serious problems may be preventable or limited by using this approach, and sometimes people even get better,” she said.
In 1976 two Scottish doctors identified that when a person with disabilities spends many hours without moving easily and often into different positions, soft tissues shorten, ligaments stretch and gravity affects the person’s body so that slowly and gradually it becomes distorted. Eventually the body changes shape and no longer bounces back to where it started.
Europe has been using these principles in treatment for many years but it’s something new to the United States.
Tamara started to read about it about 16 years ago and wanted to learn more but had to go to England to get the training. In 2012 she made the trip and started to use it with her clients when she returned.
Since then she has trained 120-150 people around the country and has worked with 30 to 40 clients in her own practice.
“I’ve seen reduced pain, better sleep and it helps with the body shape,” she said.
One of her clients in western Montana has multiple sclerosis and lives in a group home. He had chronic head, shoulder and neck pain. After two months with the supports he stopped taking the pain meds and at four months he no longer had any complaints of pain.
Tamara said often doctors in the U.S. don’t want to look at research done in other countries so she is trying to provide U.S. documentation through this project.
“We want to show that 24-hour postural care will work with the people with disabilities in the United States,” she said.
When she received the funding for the Montana Postural Care Project, she got the help of the Developmental Educational Assistance Program to find 30 Montanans to participate with the study.
Tamara and her daughter, Arwen Kittelson-Aldred, got to work.
Arwen has a masters in special education and taught special ed for six years but wanted to work closer with the students so she joined Tamara in Posture 24/7.
The mother and daughter team conducted a one-day training session for the caretakers at various sites in the state during March. Then they went into the participants’ homes and spent three hours doing a personal assessment on each of them.
Tamara and Arwen did complete pain profiles, an assessment on the body and document the body shape and measurements, then provided the custom foam block supports needed.
All free of charge to the families.
DEAP’s Family Support Specialist Eileen Dey said in Region 1 there were four clients in Miles City, 1 in Glendive and 1 in Forsyth.
A three month follow-up occurred, then in late September they took all the final measurements to determine the results.
They found almost a 90 percent improvement in body symmetry and an almost 80 percent improvement in sleep.
They found 40 percent of those who implemented the plans saw improvement in pain — joint pain related to body asymmetric and lack of sleep, which was less than they were expecting, but overall they found the results were more than they were hoping for.
Tamara said basically it did not work as well for people who did not do it, those who did not ask for help or do the hard work involved with problem solving.
Some of the people in the project did not report pain as a problem from the beginning, so of course they would not report improvement.
“It was surprising to see positive results even for people who did it part-time or who had to stop for some unforeseen reason,” she said.
“Generally we discovered that anyone who implemented night postural care, even part of the time, had some kind of positive result. Those who did not, stayed the same or got worse. The most common improvement was body symmetry, second was improvement in sleep, Tamara said.
She said the project was “totally worth it, some people have really benefited.”
Also we learned a lot and that is impacting how we will approach our second year of this project, she added.
Eileen said one person saw “an incredible drop in seizures.”
The method not only helps the person treated but his or her whole family also because the person isn’t hurting as much and is able to get more sleep. As a result there is less stress on everyone and more sleep all around.
“It’s so awesome to see the changes,” Eileen said. “It was really unbelievable. It made such a significant difference … and its so easy.”
She added that it could not have happened without the support of the families. The families and caregivers were “so dedicated, so willing to try.”
She said some of the people that received the training tried out the method for themselves: laying flat and sleeping more symmetrical. Some had back or other problems and they found it helped them sleep better.
Stephen’s mother Rebecca was surprised when Tamara and Arwen designed the supports at the beginning of the project and he was able to test it out for the first time.
The supports lets the body relax symmetrically instead of asymmetrically.
Tamara said that not only does it help prevent a client’s health from getting worse, but often it makes things better.
Rebecca said when Stephen goes to bed he is “all over the place, he’s always moving trying to get comfortable,” adding that sometimes he folds himself over like a sandwich.
He calls for her and usually she doesn’t get much sleep. After five minutes he’s usually calling out for her “Mom!”
Stephen slept curled up, which causes problems like in breathing and digestion.
After Tamara put the supports on the the bed and he laid down, “I was really amazed. He was totally relaxed,” Rebecca said.
His breathing is usually heavy labored breathing but from the first time he tried it out, he had nice relaxed breathing, she said.
“I’m really excited to try this out!” she said in March. “I think he will sleep!”
Rebecca hasn’t had much experience with a full night’s sleep for the last 16 years. If she’s lucky she might get a full night’s sleep two times a week. Most of the time she’s up with Stephen after three or four hours of sleep. Sometimes she only gets 90 minutes of sleep the entire night and she has a full-time job.
But her first concern is for Stephen.
“It’ll be nice for him to get sleep, and comfortable sleep,” she said. “Everything always chaotic with him.
After the first night with the supports, Tamara said Rebecca reported Stephen fell asleep right away and was up only once during the night.
“That makes it all worth while,” Tamara said.
At the time, Tamara said, “If this leads to less surgeries, pain reduction and better sleep, it’s an enormous win for everyone.”
After the project, Rebecca said, “Since Stephen has been using his sleep system, his posture has improved tremendously. The rotation of his chest has greatly improved and he is sleeping so much better. Before the system, he was having trouble sleeping and it was hard to get him up in the morning with all the muscle spasms. (Now) he is sleeping great and it is much easier to get him up and going in the morning.”
Rebecca is able to get more sleep now though she does get up once during the night to check on him.
“I am very thankful for the wonderful people with Posture 24 and what they have done for me and my family!”
Before the study, Rachel was usually up with Laurie two times a night, and sometimes more, rearranging her, trying to make her more comfortable.
Then the families and caregivers were taught how to use props and pillows to stay in one posture longer and lay flat.
She said it wasn’t hard to learn for her and her husband Jon Skaggs.
Tamara and Arwen are “very helpful, very kind” in walking them through the process.
She said it’s just knowing where, when and how to prop.
“(Now) most of the time she sleeps through the night. If I do get up with her, I get up once and rearrange a blanket,” Rachel said after the study.
She saw the method was helping right away but it took a few weeks for Laurie to be consistently sleeping better.
“There was a huge difference within a month. … She is comfortable in bed and goes to sleep for long periods of time,” Rachel said. The result is “a much happier daytime because she is getting more rest.”
Laurie isn’t real vocal and makes whining or moaning sounds, but she doesn’t do that as much, so Rachel knows she is in less pain.
Plus the curvature has straightened almost 100 percent in the six months.
“The main change has been a happier Laurie,” Rachel said.
“I appreciate them coming out and showing us. I think it’s an awesome project. Laurie had great results,” she said.
Tamara said, “For the next year we will be focusing on children, ages 6 months to 17 years. Based on the results for this year we have submitted an application to the Institutional Review Board (for human research) at the University of Montana for the coming year. Once approved we will start taking applications for the second year. We will have 20 slots statewide, 4 in each of the 5 (DEAP) regions; also we will be following (about) 10 people from the first year to see how they do over a longer period of time. Right now we are trying to get the word out in areas that did not participate in the first year, like Great Falls/Havre.”
“Eventually it would be wonderful to see changes in the standard of care for people with motor disabilities in the state of Montana,” Tamara said.
For more information see https://posture24-7.org