Universal Fitness Innovation & Transformation
She is 22 years old and recently moved out on her own. Janine used to walk with crutches, however, due to her ongoing weight gain, she has been using a wheelchair more often. Janine has never considered exercise or physical activity to be an option for her (she spends a lot of time doing sedentary activities such as watching movies and playing computer games), until her doctor suggested that exercise would help to improve her overall mobility. Janine sometimes struggles with following directions, however, she is friendly and loves talking with other people. Janine is nervous and a little unsure about this whole thing called exercise.
He is 37 years old and lives with his wife and young son. Jason was diagnosed with SB at birth and after being ambulatory (walking on two legs) for his first seven years, Jason has been using a manual wheelchair for about the last 30 years. Jason has some experience being physically active- he has played wheelchair basketball off and on since he was 16, however, he has never really spent any time working out in a gym. He knows his body well (for example, he’s well aware of the risk of pressure sores and overuse injuries for his shoulders) so Jason will be a great source for information in planning his exercise program.
Spina bifida occurs when the spine and spinal cord doesn’t develop completely during foetal development (CSEP, 2002).
Can be experienced differently by different people. May result in any or all of the following:
There are three types of spina bifida:
Often accompanied by hydrocephalus (related to fluid accumulated around the brain), which is associated with learning disabilities and orthopaedic deformities
Risk of developing pressure sores for those who are seated for prolonged periods of time (Plaum, Riemer, & Froslie, 2006)
“My parents actually said, ‘I wonder, is there a gym in that building?’ so it was my dad who went up and said… ‘I think there’s a lift in that and there’s a gym and everything, why don’t you give it a go?’ So about six months ago… I went up and never looked back and it’s amazing, it changed my life dramatically you know, it’s fabulous!”
Exercise is important for everyone! For people with SBH, the benefits of regular exercise include:
“It’s not all about you have to do this, you have to do it for your arms, it’s not, it’s for your heart, to keep it healthy because we are sitting down all the time. You have to keep moving, to keep your heart healthy really. That’s what it’s really for… I suppose I am rare in the sense that I do love what I do. But it’s not for the love of it, it’s really you’re looking after your heart.”
In the words of people experiencing spina bifida on a daily basis, here are a few things they would like you to know about how they take part in fitness and exercise.
Keep an open mind
“It’s not much fun really. When you’re stuck in a chair twenty-four seven. Now [since I’ve been exercising regularly] I’m able to move myself around and I’m able to wheel the chair and stuff like that. But you know I’d like them [personal trainers] to, you know, have an open mind about what they think I should be able to do.”
Keep it fun!
“I’d love to do the gym with an active person that’s bubbly…And I know they kind of have to stay serious with their job and everything. Don’t get me wrong. But, you know, somewhere where they’d have a bit of crack [fun] as well.”
Include me in group fitness classes!
“so I went up, she had a look at me and said “right, I just need to know your movement and what you are capable of doing” and… she gave me an option of coming on my own or being involved in a class but I said… I’d be more eager to go in a class because of motivation and I haven’t looked back… they’re all able bodied people in the gym, I am the only wheelchair user so what she does, is adapts that class for me, so I am not, there’s never a point where I’m just sitting looking while they are doing something, I’m doing something as well you know which is fantastic.”
Encourage me to work hard!
“It’s just the way she adapts things and like yeah it doesn’t matter, you’re in a wheelchair but it doesn’t mean I’m gonna change… “I’m not gonna go any easier on you.” You know, which I appreciate. You know I’m not gonna go any easier on you because you are well capable she said… she just keeps pushing but not like that like in a bad way that I’d be crying or you know, good encouragement you know.”
“Encouragement is really important… like I could very easily back down and say “ah I’m not going to gym anymore” if I was having a bad day, “ah I’m not going”, but because I know that she’s up there, and… she motivates me and says “come on! Come on!” that’s what gets me through”
I want to be social too!
“Exercise and being healthy but, I think you have to have a balance… it’s social as well. So I talk to all those people now that are involved in the class and… ‘yeah, see you next week, Are you coming?’ You know… interaction is great.”
Given the individual nature of how people experience disability and impairment, this section will highlight the importance of the consultation phase. Many staff are nervous about their first meeting and this section will hopefully make them feel a little more comfortable and better prepared to manage this first step.
Use the consultation as an opportunity to get to know your new participant. In addition to gathering medical information and details about their fitness/ physical activity experience, you can focus on goal setting and learn about what they want. In addition to talking about exercise, ask the participant about how they will get to the fitness center, and what kind of support (if any) they need to be ready to exercise (for example, accessing the locker room).
You want to support the participant to be as independent as possible. Depending on the individual, this may change over time as they become more familiar with the setting and feel more confident and capable. Some participants may choose to include task-specific training as part of their goal setting (e.g., working on movements that will help them with getting out of bed or stopping quickly and changing directions in a busy environment).
When someone with SBH comes in for their consultation you may notice the following:
Many young people with spina bifida did not learn enough about how to live a healthy lifestyle- you can make a difference and help these young adults develop healthier habits!
Here’s the good news: Young adults with spina bifida who took part in regular physical activity identified fewer barriers to participation & reported a higher quality of life
What are you going to do?
Many adults with SBH are pretty sedentary because they have not been encouraged to take part in exercise or physical activity. This doesn’t mean people with SBH shouldn’t exercise, there are lots of benefits, including improved movement, overall functioning, and quality of life. However, you should be aware of the following when someone with SBH starts a new exercise program (or completes a fitness assessment!).
Every person is like every other person, like some other person, and like no other person.
It’s really important that people who are new to exercise learn how to monitor and describe how they are feeling or their response to exercise. One helpful way to do this is to introduce the Rate of Perceived Exertion (RPE) scale. The smiley face RPE Scale or the OMNI scale (see below for examples of both) may be more suitable for participants with various disabilities than the age-predicted maximal heart rate (220 – age) (Stanish & Aucoin, 2007).
In the beginning, it is also recommended that participants measure their heart rate (using wearable technology such as a heart rate monitor may make this easier!). This information will help the trainer and participant to work together to learn about how the participant perceives their exertion during exercise and may help to inform programming strategies. For example, a trainer may encourage the participant to work towards a specific level of RPE, which can be complemented with information from the HR monitor to measure exercise intensity. Monitoring HR may also be useful in the event that participants are exercising at a level beyond the recommended intensity, which may happen if the participant is very engaged in the activity or trying to make a positive impression on the trainer.
Smiley Face Relative Perceived Exertion Scale
Although you will not be administering medication, it’s important that you have a brief conversation with the participant to ensure they are aware of any side effects of their medications that may impact their ability to take part in exercise and/or specific safety considerations.
Individuals with SBH may or may not be taking regular medications. Similar to the variability you will find across individuals, you will find that different people are taking different medications to manage different symptoms or secondary conditions. It is recommended that you talk about this during the consultation to see if there are any side effects that you should be aware of. You may also want to check in with them each time they come in to work out to see if there are any changes or any new information that you should know. It is also important to ensure the individual has the go ahead from their health care provider prior to beginning a new exercise program.
The tips and strategies found within the inclusive TIMES section will help you to create an environment that will support your participant’s participation in physical activity as independently as possible. It is important that you involve the participant whenever possible, along the way to ensure the program that you design will meet their needs physically, as well as emotionally and socially. Introducing a few simple strategies such as offering visual images of the participant’s program will help them to be more independent in completing their fitness programme. Ultimately, they will gain confidence and belief in their abilities (increasing self-efficacy) and experience self-determination (sense of control over their own destiny). This is key to establishing healthy habits that will be adopted for the long term.
Copyright © 2020 by UNESCO Chair , Institute of Technology Tralee
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UFIT c/o, UNESCO Chair, Institute of Technology Tralee, Tralee, Co Kerry. Ireland
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