Introduction Video

Slide #1 of Module #1 Power Point

Hello! Welcome to the iROLL program! We are very happy to have you with us today. iROLL stands for ‘individualized reduction of falls’. The goal of this program is to help you build the skills and the confidence you need to safely participate in activities you would like to do in both your home and your community. To help you build this confidence, this program focuses on teaching you methods to prevent falls from occurring. In addition, because it is not possible to prevent all falls, we will also be teaching you methods to recover or get up from a fall.

This program was developed to build upon your current knowledge, skills, and expertise. The activities covered in this program have been designed to help refine the activities that you are currently doing, such as transfers and wheelchair/scooter skills. We will help to provide suggestions to you on ways to perform these skills in a safer manner, save energy, and to use your body in a manner that is most efficient and prevents overuse injuries. Please now take out your program manual. You should have received this manual in the mail from one of the research team members. If you haven’t received the manual, please contact the research team member that you have been in contact with. We will begin using this manual in a few minutes.

I would like to take a few minutes to introduce myself you to. My name is Laura Rice and I am a faculty member at the University of Illinois at Urbana Champaign. I have a master’s degree in Physical Therapy and my PhD is in Rehabilitation Science and Technology. I have been a physical therapist for over 15 years. My research is focused on examining ways to improve quality of life and community participation for individuals with disabilities. In my clinical practice I work with wheelchair and scooter users to help them obtain the most appropriate wheeled mobility devices.

This program will be held over the course of six weeks. Each week you will be asked to watch a series of videos. You can watch these videos on your own schedule and review them as much as you would like. In addition, each week, we will meet for about 45 minutes online to discuss the education provided for each week and give you a chance to ask questions and get feedback on some of the skills you are working on. In addition, each week we will be asking you to do a journal entry and set goals. Those items will also be discussed during the online session. The research team member you have been working with will provide information on specifically which videos you should watch for the week, when the online group will meet and how to access the group chat. Please feel free to reach out to the research assistant with any questions you might have.

Page 3 of manual

Please now turn to page 3 of your manual. On page 3 you will see a welcome letter. Please take a few minutes to read over this letter. It gives you a little background on the program and goals for the research study. You can also find my contact information if you have any questions.

Page 4 of manual

Please now turn to page 4 of the manual and look at the document called ground rules. As part of the iROLL program, we have a set of ground rules that we would like you to follow during the online discussions. The rules are listed in your manual. The rules are:

• Participants are free to ask questions at any time and to be respectful of other
• Participant’s time to speak.
• Information disclosed by other participants should be kept confidential.
• Please provide constructive criticism and highlight positives.

If you have any questions about these rules, you can ask during your first online discussion session. We will be reviewing these rules again during the online discussion session. The next video segment will welcome you to the program. In this video, I will discuss the framework of the study called ‘GET WISE.’ On page 5 of your manual, you will see the components of GET WISE listed out for you.

Pre-recorded Program Overview

Introduction to Falling

Please now turn to page 6 of your manual. In this section I will provide an introduction to falls.

GET WISE Section: Individualized Activity in the Home and Community

Falling can have a large impact on the health and well-being of wheelchair and scooter users and a negative influence on community participation.

Recently, our research team surveyed full time wheelchair users living with MS¹ and found that 75% of the population reported at least one fall in a period of six-months. Of those individuals who reported a fall, almost 50% were injured. We also found that over 75% of participants had a fear of falling, and 65% limited the activities they did in their home and community due to this fear.

Due to the high frequency of falls experienced by individuals living with MS and the negative consequences, it is very important that steps are taken to prevent falls from occurring! Today you will learn how we define a “fall”, how falls most frequently occur, and how fear of falling can also have negative consequences.

What is a fall?

According the World Health Organization, a fall is defined as: “An event which results in a person coming to rest inadvertently on the ground or
floor or other lower level²”

Why is it important to prevent and manage falls?

• Falls can result in significant physical injuries (e.g. fractures, concussion).
• A fear of falling can negatively influence quality of life, community participation, and performance of essential activities of daily living.
• Most wheelchair users living with MS need assistance to get up after a fall occurs. Individuals who need assistance to recover (get up) are at higher risk for additional physical injuries, a decline in performance of daily activities, an increased chance of a hospital admission, and an increased fear of falling.

How do falls occur?

Research has found falls commonly occur while people are doing the activities including transfers and pushing or driving their wheelchair. In addition, falls most commonly occur in the person’s home, in the bathroom. A full list of the most common activities and locations associated with falls are listed in the table on page 6 of your manual. Please carefully take a look at the lists on page 6 and circle the actions that you were doing and the locations where you were during a fall. Feel free to write in additional actions you were doing when you fell and the locations where you fell.

Previous research has also found that other factors can contribute to falls. On page 6 is a listing of other factors associated with falls among wheelchair and scooter users. It is important to note that most of these factors can be improved with education! Please take a look at the lists on page 6 and circle any of the factors that you think might have been associated with a fall you have experienced. Feel free to write in any additional factors.

It is also important to note that most falls are caused by many risk factors working together¹. Very rarely does one single event cause a fall. For example, falls frequently occur in the bathroom while a person is transferring to the toilet or the shower. A wet floor is often involved. Another common association is a fall occurring while a person is pushing or driving the wheelchair on the sidewalk and hits a crack or piece of debris. Because there are so many risk factors for falls and they often occur together, this education program covers a wide variety of risk factors that can be modified.

Being aware of the risk factors for falls will help you to avoid dangerous situations. During this program, we will help you to learn how to manage these risk factors.

Fear of Falling

Another important aspect of prevention is managing fear of falling. While most of our understanding of fear of falling comes from research involving older adults, there is also research about fear of falling based on people living with MS and full-time wheelchair users living with MS.

Although limited, evidence points to two important facts about fear of falling among people living with MS:

1. It is very common⁴
2. It can increase fall risk⁵

Please now take a look at the figure on page 9. Research involving older adults and people living with MS tells us that a fall can lead to fear of falling OR fear of falling can lead to a fall^5-7.

Figure 1 also shows us that the cycle can be self-perpetuating, in other words a fall or fear of falling can turn into a bad cycle of having more fear, cutting back on activity, and having more falls.

The issue here is not only that fear of falling increases fall risk, but it can impact your quality of life. Fear of falling can lead you to give up activities that are fun or important to you.

We know that fear of falling is a big concern among wheelchair users, even if they haven’t had a bad fall¹. That probably does not surprise you!

Fear of falling is a rational response to a real concern for people living with MS: the fact is, there are symptoms of MS that can lead to a higher risk of falling.

The key is to think about your own activity to determine if your concern about falling is keeping you from doing things that really are not safe for you to do or keeping you from doing things you safely could be doing. In other words, there is a difference between a fear of falling that is protective and a fear of falling that is greater than it needs to be, given your abilities⁸. The latter often leads to an unnecessary decline in activity.

Start on page 9, there is a case study about two individuals who have a fear of falling, please take a few minutes to read these case studies and think about the two different paths these individuals took in their management of fear of falling.

Journal Overview and Journal Question for the Week

Please now turn to page 12 of your program manual. I will be discussing the journal activity, in general, and give you instructions for the first week’s journal entry.

Each week we will be asking you to do brief journal entries in your manual reflecting on what you learned and how you think you can use these skills in your everyday life. Our hope is that the journal entries will help you take a deeper look into the area that you are interested in improving and how you can make specific changes to your daily life. We will then discuss the journal entry the following week in the online discussion.

For the first week, please reflect on your most recent fall. Think about what you were doing when you fell, where you were, and if any other factors influenced your fall (i.e. slippery surfaces, poor lighting, etc.) Based on the information you learned today, how do you think you can decrease the frequency of your falls?

There is space on page 12 of your manual to write your answer.

Introduction to the Exercise Program

Welcome back. Now we are going to begin to talk about the exercise program that you will be doing during the course of program. Please turn to page 13 of your manual. Exercise is a very important component of this education program. During the course of the program, we will discuss the importance of exercise almost every week and will refer back to this program.

Previous research has found that exercise is beneficial in MS. Exercise can:

• increase physical fitness (muscle strength and cardiorespiratory function)¹
• enhance mobility ²
• improve balance³
• enhance cognitive function⁴
• reduce fatigue⁵
• reduce depressive symptoms⁶

Exercise can also help prevent falls in individuals living with MS.

• Exercise can help improve sitting balance by strengthening the core (stomach and back) muscles⁷. Good sitting balance can help maintain an upright posture and makes you more stable when reaching for items. Strong core muscles can also help make you more stable when doing transfers.
• Exercise can also strengthen your arm muscles, which will be helpful when transferring and performing wheelchair skills.

During the course of the program, you will be asked to do a series of exercises designed to strengthen your core and arm muscles. These exercises will help improve your balance in a seated position and are used during many functional activities, such as transfers and wheelchair skills.

A complete listing of the exercises and detailed instructions are provided on page 16 (Exercise manual). In addition, the next video segment will provide an overview of the exercises you will be asked to perform during this program. Most of these exercises are performed in a sitting position.

To help keep you safe, please follow these additional steps:

• Please sit on a firm, stable surface and place your hands on either side of your legs.
• You can use your hands to assist with balance to start with, but as you get stronger, try to put your hands in your lap during the exercises.
• Ideally, your back should not be supported.

Have a friend or family member stand next to you to assure that you don’t fall during the exercises.

Most importantly: Listen to your body!

After you exercise you might feel soreness in your muscles but not pain or extreme fatigue.Soreness that goes away after about 24 hours is okay. This means that you worked the muscle enough to gain some benefits but not enough to cause damage. As you do the program more frequently, the soreness that you feel should reduce.

If you are feeling extreme fatigue or soreness, decrease the number of repetitions and/or reduce the number of days per week that you exercise.

If you do not feel that the exercises are difficult, increase the number of repetitions performed (increase by five repetitions each week, with a max of 20 repetitions each, five days per week).

Please keep track of how often you are performing your exercises using the exercise logs that were provided to you. We will be asking you to mail these logs into the research team each week.

If you have any questions, you can ask the trainer during the online discussion session. Please now watch the video ‘exercise program’ to give you an overview of the exercises you will be doing. You can follow along with the written instructions on page 16 of your manual.

Exercise Program

Goal Setting

Now we are going to take a few minutes to talk about setting goals. In a moment, we will talk about setting goals related to the exercise program you just learned about. First however, we will talk about goals, in general. Just like the journals that you will be doing as part of this education program, setting goals will help you make the most of what you are learning and help you to work towards doing things that are important to you.

Please now turn to page 27 of your manual

During the course of this education program, we will be setting goals each week. Just like the journal, setting goals will help you make the most of what you are learning and help you to work towards doing things that are important to you. As much as possible, we will be using the SMART goal format listed on page 27 of your manual to help make the goals as useful as possible. Please look over each component of a SMART goal.

Specific – This should be very specific to what you want to do. Example: I want to engage in an exercise program to improve my abdominal and upper extremity strength.
Measurable – Attaching a measurement to the goal will help you track your progress and stay focused. Example: I will do my exercise program 3 times per week.
Achievable – You should be able to achieve your goal in a reasonable time frame. Using the exercise example, think about how confident you are that you can do the program a certain number of times per week. Pick a number that you feel fairly confident that you can do.
Relevant – The goal you set should be meaningful to you and something that you really want to do! Think about if the goal if worth your time and effort. If you don’t feel it is, you will be less likely to achieve the goal.
Time bound – Set a time limit on the goal. Example: I will do my abdominal and upper extremity exercise program 3 days a week for the next 3 months.

On the next page of your manual, we will use this format to set an actual goal. You can refer back to this page during the course of the education program to help develop your goals.

Now we will get into setting goals for the first week related to the exercise program. Please start doing each exercise 10 times, three days per week. Getting into a routine is very important in order to maintain an exercise program in the long term. It is also very important to pick specific days/times and locations that you think you will be able to complete the exercise program. Please work through the worksheet on page 28 of your manual to help you determine specifically when you are going to do your exercise program, where you will do the program, what assistance you might need to how to make it a habit. Please remember to have a care partner with you when you are first starting off the exercise program and when doing any exercises you find more difficult.

Closing Remarks

We are done the first module! Thank you for your participation. If you had any challenges accessing the videos this week, please get in contact with the research team member you have been working with.

Before this week’s discussion, I would like you to:

• Look through your program manual to familiarize yourself with the program
• Respond to the journal question regarding your most recent fall (Page 12)
• Look over your exercise goal sheet and make any additional revisions (Page 28)
• Begin doing the home exercise program 3x/week (Page 16)
• Use your exercise log to track your exercises (sheets found in folder)

During the next module, we will be doing the following items:

G – Continue to set goals
E – The exercise program will be reviewed
T – Discussion will be held on ways to improve transfer skills and increase safety

W – Discussions will be held on performance of basic wheelchair/scooter skills
I
S
E – Methods in which the environment can be a positive and negative influence on falls will be discussed.

Thank you very much! Have a good week!