Multiple Sclerosis (MS)

Multiple Sclerosis (MS)

Description #

Meet Paula.

She is 37 years old and lives with her husband and 2 daughters. Paula was diagnosed with MS when she was 25 years old, after experiencing two attacks, during which she was incredibly tired, had trouble walking, and noticed that she couldn’t feel the difference between her wool sweater and cotton t-shirt with her fingertips. Since then she finds that her MS symptoms will come and go, but they haven’t gotten any worse. Paula is not sure what will happen in the future as each day is different. This makes it difficult for her to plan and schedule activities and she finds that she needs to be flexible in case she wakes up with a flare up.

Meet David.

He is 52 years old and has been noticing that he is having increasing difficulty with functional activities, such as being able to stand up after being seated in a chair. David was diagnosed with MS years ago and he has noticed a gradual decline in his abilities ever since. David is reconsidering living on his own as the reduced sensation in his fingers and occasional spasms in his arms are making things like cooking and cleaning more difficult to do. He enjoys spending time with others, however, David has been feeling down more often- even on sunny days- and combined with the frequent wake ups during the night, he has been too tired to call his friends.

Both Paula and David have been diagnosed with Multiple Sclerosis, however, they are experiencing MS differently.

What do I need to know? #

Multiple sclerosis (MS) is a progressive condition that involves a loss of nerve myelination. This means that nerve impulses are not conducted properly and there signals between the brain and the body can be disrupted. It can be difficult to diagnose MS (and other autoimmune diseases) as there are a number of possible signs and symptoms (see list below).

Possible signs and symptoms:

  • Changes in sensation or numbness
  • Spasticity
  • Weakness & fatigue
  • Visual impairments or disturbances
  • Sleep disruptions
  • Bowel and bladder control issues
  • Decreased functional ability
  • Mental health issues such as depression
  • Decreased gait & balance

MS is typically diagnosed when someone is between the ages of 20-40 years and females are two to three times more likely to be effected than males. The cause of MS is currently unknown and there is no cure. There are many options for people that focus on treating the disease as well as managing the symptoms. For a more detailed description of how MS can be diagnosed and treated please see Moore, Durstine, & Painter’s (2016) ACSM Exercise Management for Persons with Chronic Diseases and Disabilities

MS can be experienced very differently from one person to the next and across different periods of time for each individual (ACSM). However, there are four typical patterns of relapses and remissions that are experienced by people with MS (ACSM, p.,267).

  1. Relapsing- remitting (symptoms may come and go, but they don’t get any worse)
  2. Primary progressive (the symptoms never goes away and they gradually get worse)
  3. Secondary progressive (the symptoms start out as relapsing- remitting, but eventually become progressive, and get worse)
  4. Progressive relapsing (symptoms progress steadily, with severe episodes occurring sporadically)

TIP

Asking about which pattern of relapses and remissions best describes your participant will help you to better understand how they experience MS.

 Why Exercise? Why is it important? #

Exercise is important for everyone! For people with MS, the benefits of regular exercise include:

  • Enhance mood & mental well-being
  • Improve quality of life
  • Improve physical functioning
  • Less fatigue & better sleep quality
  • Increase strength, flexibility & range of motion
  • Improve circulation
  • Better breathing (or deeper, more regular breaths)

Where do I start? Getting to know Someone with Multiple Sclerosis #

Since disability and impairment can be experienced so differently from person to person, this section highlights why the consultation phase is so important. Many fitness professionals are nervous about their first meeting. We hope this section will make you feel a little more comfortable and better prepared to manage this first step.

The Consultation #

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 MS comes in for their consultation you may notice the following:

  • The may come in on their own or with a family member or friend
  • They may look bored or uninterested, but it’s possible they’re having an off day or they are really tired
  • They may find it difficult to move from sitting to standing after you have been talking for awhile
  • Their body may shake when they are moving (e.g., their arm might shake as they reach to pick up something up off of a desk)
  • They may seem like they are no different from anyone else!

What are you going to do?

  • Direct your questions to the person with MS, not their family member/ friend
  • Be patient. Listen.
  • Ask the person how they feel- they may experience their symptoms differently each day
  • Don’t worry about saying exactly the right thing. It’s important to build a relationship with the individual at this stage. Just be yourself. Be patient. Think about how you would like to be treated.
  • It’s ok to ask about the kind of assistance they might need. For example, do they want a hand to get out of the chair? If not, let them do it themselves. Again, be patient. If this is something they are working on then you need to give them the space to do so.

Implications for Exercise #

Many people with MS are pretty sedentary because regular exercise (even light physical activity) can be challenging to do on a regular basis. This doesn’t mean that people with MS shouldn’t exercise! In fact, there are lots of benefits, including better movement, overall functioning, and quality of life. Pay attention when someone with MS starts a new exercise program (or completes a fitness assessment!), because you might notice the following:

  • They may have shortness of breath (dyspnea),
    • This could happen as soon as they start to move or exert any energy (think about what it’s like for someone who is really deconditioned to start moving!)
  • They may have limited physical functioning
    • This will be particularly apparent if you are doing an initial fitness assessment
  • They may notice quick increases in their heart rate and/or blood pressure
    • Remember to monitor regularly!
  • They have muscle weakness or fatigue quickly
    • Be careful, because this can increase the risk of falls!
  • They may have a low tolerance for changes in temperature
    • Many people with MS are especially sensitive to warm or hot temperatures- but be sure to ask as it’s the opposite for others!
  • They may notice that their symptoms are worse immediately following an exercise session
    • It’s pretty typical for someone with MS to get tired easily and at the beginning of a new exercise program this might actually mean that their symptoms are way worse after they work out.
    • It’s ok, this often happens for about 30-minutes post-exercise after which, things should get a bit better.
    • You might want to increase the amount of time you set aside for a cool down or add in a longer stretch period! (This tip came from a couple of friends with MS who exercise together 3 times a week)

Don’t forget:

Every person is like every other person, like some other person, and like no other person.

Monitoring Exertion & Exercise Intensity #

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.

OMNI Scale

Smiley Face Relative Perceived Exertion Scale

Medication & Exercise: What do you need to know? #

Although you will not be administering medication, it’s important that you have a brief conversation with the participant to make sure 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 MS will most likely 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 their symptoms at different stages. 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 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. You can read about specific medications in (ACSM, 2016)

 

Inclusive TIMES: Tips & Strategies for Individuals with MS #

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.

Time #

  • Send a reminder (e.g., text) about an appointment or exercise session
  • Shorter sessions and/or regular rest periods may help to avoid fatigue
  • Talk to the participant to find the right time of day to exercise (e.g., in the morning when they are fresh and ready to go)!
  • Begin with shorter duration and lower intensity activities, progressing gradually to moderate intensity.
  • Include a longer cool down (10 mins of low intensity aerobic activity & stretching) to reduce the effects of increased symptoms that may appear at the end of the exercise session

Instruction #

  • Be patient.
  • At the beginning of each session, provide a selection of exercises for the participant to choose from. Involve them in deciding which ones will work for them on that specific day.
  • Use a menu type approach with activity cards. The participant can choose from exercises you suggested to create a personalized workout
  • Provide clear, simple instructions in more than one format (e.g., verbal and visual).
  • Break complex movements into simple discrete movements
  • Focus on completing one task or movement at a time- avoid dual tasks
  • Use clear, simple verbal cues to encourage proper form
  • Post coloured targets on the wall at eye level to direct attention and focus on proper posture
  • Introduce the RPE Scale and teach participant to learn their body’s response to various intensities. This will help them become aware of what intensity is appropriate for the body on any given day.
  • Use sub-maximal tests for the initial assessment to measure balance, flexibility, and sensation.

Movement #

  • Recommend strength exercises that will focus on areas of weakness and muscle imbalance
  • Use dynamic flexibility movements to warm up and static stretching to cool down (focus on tight areas such as pelvis, calves, and hip flexors)
  • Recommend a gentle group exercise class such as seated yoga or tai chi that might focus on balance and flexibility
  • Ask the participant if they have difficulty with performing any activities of daily living (e.g., getting out of bed, opening a cupboard). Incorporate task-specific movements into their training programme!

Environment #

  • Choose equipment that provides as much support as possible (e.g., use a recumbent bike instead of an upright one)
  • Offer stabilizing equipment such as heel or wrist straps to help secure hands or feet (If your club doesn’t have any of these, there are many companies that sell them. For example, check out http://www.activehands.com/ or ask participants for suggestions!)
  • Pay close attention to the temperature (heat sensitivity is a real risk factor!). Choose cooler, well-ventilated areas that have fans. Recommend wearing lighter, breathable clothes and drinking plenty of water
  • Work with allied professionals to reassure the participant that their programme is safe. It’s important that the participant feels safe and supported in their fitness programme.
  • Seats for resting should be available for participants who need regular rest periods.
  • Use non-traditional equipment to assist with balance (e.g., the back of a chair- be sure the equipment is stable and can support body weight if necessary)
  • Remove clutter and extra equipment where possible to reduce the risk of someone tripping and falling in a messy space

Support #

  • Use the consultation to discuss the desired level of support for the individual (this will be unique to each participant). Some may require support staff/family members or use assistive technology/ mobility aids and others may not.
  • If the participant has or is at risk of CHD or other heart conditions, work with their health professionals, especially in the beginning to ensure the participant is exercising at an appropriate & safe intensity (see relevant UFIT Explorer elements).
  • Social support is vital to promote a healthy lifestyle! Introduce activities with partners to create a positive, fun & enjoyable atmosphere that is motivating. Take a moment to introduce the participant to staff and other health club members to help them feel welcome the next time they come in!
  • Link with local MS groups if more specific information is needed or to connect participants to local supports or community opportunities.
  • Discuss the participant’s overall lifestyle choices (e.g., nutrition, sleep hygiene), to identify areas where they can enhance their overall health. For example, does the participant smoke? Eat healthy? Are there changes you can suggest?

References #

  • NCHPAD, Multiple Sclerosis, available at: http://www.nchpad.org/70/520/Multiple~Sclerosis [accessed 20th April 2017]
  • O’Connor, F., Casa, D., Davis, B., Pierre, P., Sallis, R. and Wilder, R., (2013), ACSM Sports Medicine: A Comprehensive Review, Lippincott Williams and Williams, China
  • Pescatello, L., Arena, R., Riebe, D., Thompson, P., eds. (2014), ACSM’s guidelines for exercise testing and prescription, 9th Edition, Baltimore: Lippincott Williams & Wilkins
  • Swain, D., Brawner, C., Chambliss, H., Nagelkirk, P., Paternostro Bayles, M. and Swank, A., eds. (2014), ACSM’s Resource Manual for Guidelines for Exercise Testing and Prescription, 7th Edition, Baltimore: Lippincott Williams & Wilkins
  • WHO Global Action Plan 2013-2020, available at:

http://apps.who.int/iris/bitstream/10665/94384/1/9789241506236_eng.pdf [accessed 12th July 2016]

 

 

Copyright © 2020 by UNESCO Chair , Institute of Technology Tralee

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