Eleanore’s Project is another non-profit organization working internationally to promote 24 hour posture care and responsible wheelchair provision, primarily in Peru. In April 2017 Tamara gave a talk as part of the Global Public Health Minor Lecture Series at the University of Montana. Missoula Community Access Television recorded it so here it is – follow the link!
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
Making the choice to take a chance on something new, and seeing your life change: this approach applies to all of our individual lives, and The Montana Postural Care Project is no exception.
Thanks to our funding from The Montana Council on Developmental Disabilities, we are accepting applications for our second year, and today a big change in our eligibility criteria was finalized.
If your child does not have a Family Support Specialist (FSS) but works regularly with either an Occupational or Physical Therapist who will commit to being part of your care team, you may APPLY NOW. Initially working with a Family Support Specialist had been a requirement, but we heard from many families with great support teams who do not have access to an FSS. We are glad to open the process to a wider group of Montanans.
Due to this change, the application deadline has officially been extended to November 29, 2016. Pass the word to your friends and colleagues!
Check out the updated flyer:
And we’ve heard that there are some families who do not have access to a Family Support Specialist, but have a very involved Occupational or Physical Therapist who would be a good supporting member of the care team. We are committed to being part of a system that allows all participants to have the best chance at experiencing positive changes, and we know from last year that having an involved support team is a crucial piece of the puzzle. For this reason, amendment paperwork was just filed this afternoon with the Institutional Review Board. Once we have received final approval for the change, the change to this year’s eligibility criteria will be as follows:
– The focus child/family must work with either a Family Support Specialist or Occupational/Physical Therapist regularly who will commit to being part of the team.
What does this mean? Well, if you know someone who wanted to participate but did not have a Family Support Specialist, they may now be eligible to apply! Obviously, since this change is occurring at the eleventh hour, we will also be extending the deadline to allow time for people who thought they did not qualify to complete the application. Thank you for reaching out to us and helping us realize how important this relatively small change is! Keep an eye out on our website and on our Facebook page for immediate updates as this change progresses. We expect to hear back within the next 48 hours, so be ready!
The Montana Postural Care Project Year One:
“We Are What We Repeatedly Do” – Will Durant
What a journey we have all been on over this past year. On September 30, 2016, the first year of The MT Postural Care Project officially ended. We learned so much, from our favorite statewide coffee shop (hello City Brew!) to what a spectacular sunset you get to see if you run out of gas between Big Timber and Livingston… but the biggest lessons were all from the people with whom we worked.
From the darling little 3 year old boy to the 62 year old man who shares our project director’s taste in “music of their generation,” we met and worked with 30 people of all ages across our state. Every single person and family had their own story and unique reasons for choosing to implement 24 hour postural care. As we traveled around the state in September, meeting with people to collect our final data in an attempt to quantify their experiences, we heard and saw so many amazing success stories.
Postural care is a unique approach in that it can be implemented anywhere, without expensive equipment or easy access to therapists and medical personnel. We had people living in small towns, way out in the country, in bigger cities who all experienced positive changes. Some people had huge improvements in their sleep quality – talk about life changing!!!! Many experienced physical changes, as their bodies became more symmetrical. A few felt relief from chronic pain. The common denominator in all these positive changes? Not quality of medical care. Not having appropriate and well-fitted adaptive equipment (which was, sadly, a rarity among our participants.) The one thing that all participants who saw positive changes had in common was consistency.
In summing up his interpretation of a phrase from Aristotle, Will Durant stated “We are what we repeatedly do.” The results from our first year data show exactly that. The people and families who implemented postural care consistently, even if it was only for an hour or two each night, even if they had to dramatically modify their original postural care plan, every single one of them saw positive changes. The power of consistent action, of small habits – an extra five minutes before bed, as one family said – showed incredible results.
Gathering and beginning to analyze this data inspired all of us here at Posture 24/7, and we decided that for our second year we are going to complete the Institutional Review Board (IRB) process for working with human subjects. Why go through IRB? Because the results we saw were so exciting! Here’s one of the many inspiring stories from year one of The Montana Postural Care Project.
In a mere 5-6 months one woman’s body changed from being quite asymmetrical to almost perfectly symmetrical. She went from waking multiple times per night in pain to sleeping through the night. What happened? Her family implemented the principles of postural care every single day, and by the time we saw them they had a precise system that worked for her in place. Huge positive changes for everyone in that family!
We believe that stories like these need to be shared as widely as possible. This project is all about giving people access to a non-invasive, low-cost, and routine-based intervention that can affect big changes for the better. It is amazing to see Montanans benefit from postural care, and we want to be able to share this data and these stories with people from all over the country. To that end, we have submitted our IRB proposal, and are eagerly waiting to hear back from the review board. Once we have IRB approval we will open the application for our second year of participants.
Year Two of The Montana Postural Care Project is going to focus in on children and teenagers working with Family Support Specialists from across our state. Do you know someone between 6 months and 17 years old who could benefit from postural care? Let them and their families know about this project!
Special thanks to The Montana Council on Developmental Disabilities for their funding and support…. without them this project would not exist. Stay tuned for more information…. The application process for Year Two will be opening up soon!
Lena is a beautiful 8 year old Montana girl. She is also a very lucky girl because her grandmother chose to learn about 24 hour postural care and has been implementing it since July 2015. Her efforts on Lena’s behalf have paid off in a big way! Lena is now sitting straighter even out of her wheelchair, focusing better in her therapies and best of all – she is no longer expected to need surgery on her spine for scoliosis. Lena and her family did this themselves – what a success story! We are happy to be able to celebrate with them.
Have you ever ordered a slice of your favorite cake and then only eaten the icing? And then just left the rest? Seems crazy, right?
Well – 24-hour posture management is very similar to the scenario above.
By only addressing the postural orientations of sitting and standing, and not postures in lying, a crucial part of posture management is being completely ignored.
Again to the cake analogy: just try to imagine baking your favorite cake without a key ingredient. Each and every part of any cake recipe is important — as are all three of the major postural orientations in postural management.
Here is how it works: Posture management aims to maintain and protect body shape by providing support over the whole 24-hour period where three predominant postural orientations are present: Lying, Sitting and Standing.
When appraising a day in the life of a person with complex rehabilitation needs, I am always intrigued and humbled to see the dedication and commitment from therapy teams, support networks, families, and the individual themselves. Numerous therapy sessions per week, time spent in standers, seating systems and various positioning assistive devices. All the focus and emphasis is usually placed on corrective positioning in sitting and standing postures.
However, it saddens me that often this hard work can so easily be undone, usually due to lack of positioning support in lying. Out of the estimated 8760 annual hours, it can be roughly calculated that approximately 3600 hours are spent in lying. Therefore, potentially 3600 hours of unsupported lying.
Enter Gravity into the equation: The distortion of the body in unsupported lying is further influenced by the effect of gravity on the body structures such as the hips, pelvis and the chest wall. Studies on newborns lying in asymmetrical postures have been well-documented noting the negative effect which gravity has on the immobile growing child.
So what does Lying have to do with sitting? There is mounting evidence highlighting the link between habitual postures assumed in lying and their influence, along with a ‘dash’ of gravity, on seated postures. Changes in body shape occur in lying, when the person no longer has the ability to self-correct, or is placed in unsupported postures. Damage occurs to the individual’s body as a result of prolonged and sustained lying postures. It is clearly evident that asymmetrical postures result in unequal tissue loading. If this is left unchecked, the individual is likely to develop postural changes, such as asymmetry, through contractures and deformity, which often makes positioning the individual in any standard equipment challenging and sometimes impossible.
Further evidence highlights the correlation between asymmetrical lying postures and postural deformity, when exploring chest wall deformities, windswept lower limbs, and joint dislocation. Sadly, the net effect of poor unsupported positioning in lying, has a far reaching impact resulting in serious health problems related to pain, breathing, swallowing, digestion and an increased risk of pressure areas. The consequences of failure to prevent the distortion of the individual’s body shape are both serious and potentially life-threatening.
Good supportive positioning in Lying is absolutely essential.
Sometimes it is the smallest changes that can have the biggest impact.
Where to start? I would encourage you to start small. Implement small changes in lying to the night-time positioning of an individual with posture management needs. Gradual changes and a gentle start are so important — as good quality sleep is essential. Respecting the individual, their comfort and their sleep – as well as those of the family and the support network, is an effective way to begin this process. Remember – the poor posture did not occur in one week, so it won’t be remedied in one week…but changes will literally happen ‘overnight’.
So I remind you, that by only addressing the individual’s postures in standing and sitting and not those in lying, it is truly like eating only the icing on the cake — and consequently missing out on the whole cake.
With 24-hour Posture Management, you can now have your cake and eat it too!
Lee Ann Hoffman, MSc. Rehabilitation: Posture Management
Posture means many things to different people. The words “good posture” often conjure memories of being told to “sit up straight” as a kid or images of ramrod stiff military posture – but that is not what we are talking about here!
At Posture 24/7 we focus on how habitual postures (used persistently and frequently as a habit) can have a huge impact on the lives of people with motor disabilities – and not necessarily for the best! While most of us take for granted that we can choose the postures we assume, this is not the case for many people with impaired movement. When we have the intrinsic ability to control our bodies against gravity we can choose to move in all manner of ways, to assume and maintain all kinds of positions. We may choose whether to slouch as we relax or sit erect with good core stability as we work, but what if we did not have that choice?
When a person has limited ability to move the whole game changes. This is true not only for those who can move very little or not at all, but also for individuals who move only in limited ways. This can be related to irregularities in muscle tone, paralysis, sensory impairment, poor coordination, joint contractures and many other factors. We can describe this as having a limited movement repertoire. When one cannot easily, independently and frequently move into a variety of different postures during the day and night, gravity and time can become the foe.
When the body is positioned unequally between its two sides we call it postural asymmetry. This is not a bad thing for short periods of time, when it is counteracted by movements or postures in the opposite direction so that the body is in balance. It is even important for function – we all use one side of the body differently than the other for certain activities. The problem arises when a person spends many hours over weeks, months or years in the same or similar posture without the ability or assistance to move out of it and into better balance.
When that happens a person’s body shape can slowly and inexorably change from symmetry to distortion. It can be so gradual that the progression toward scoliosis, dislocated hips and a flattened chest is not noticed and addressed until it is so obvious that it cannot be ignored. By then the person’s health has already been compromised and surgery is considered to be the only alternative. Over 30+ years of living and working as an occupational therapist in my community, I have seen what happens over time to children born with impairments and beautiful, symmetrical little bodies.
24 hour postural care augments traditional therapies and treatments to provide the foundation that every person with a disability needs in order to develop and/or rehabilitate to their own personal best functional level – a symmetrical, balanced body shape.
Tamara Kittelson-Aldred, MS, OTR/L, ATP/SMS
For many years now I have spent my work days with people who have motor impairments, and need wheeled mobility and seating systems. Most of them are children and adolescents, but some are adults who have developmental disabilities. Since kids grow up, living and working in the same community for 32 years has given me the opportunity to see many of them mature into adulthood. I have grown and learned along with them, and have watched children born with beautiful, symmetrical bodies become adolescents and adults with distorted body shapes.
These kinds of secondary complications – scoliosis, hip dislocations and so on – only get worse as time goes on. Last year a young man I knew from 3 months of age to adulthood died at age 30 – his breathing and digestion compromised by his complex body shape. During his growing up years I thought we were doing all we could by providing the best wheelchair seating systems available. I learned too late (for him) about a crucial missing piece that could have improved the quality of his life immensely and perhaps even changed its course – 24 hour postural care.
What if there were a gentle, non-invasive, inexpensive way to:
- Preserve and improve quality of life and muscle tone
- Reduce pain
- Ease physical care
- Prevent/limit distorted body shapes in people with motor disabilities?
What if this gentle, non-invasive approach for people with motor impairments could:
- Improve sitting posture and tolerance?
- Increase successful use of seating systems?
- Help complex seating systems last longer?
- Help people sleep better?
There is such an approach – 24 hour postural care – which when well implemented can often provide these benefits and more. It may be a fairly new idea on the North American side of the Atlantic, but in other places it has been around for years now. Perhaps the time has come to raise awareness in the United States?
Tamara Kittelson-Aldred, MS, OTR/L, ATP/SMS