Self-Care Task Modification when Living with Myositis (Part I: Daily Activities)

Adapted from an HSS Myositis Support Group discussion with Bethel Marcus, OTR/L, CHT


Bethel Marcus, OTR/L, CHT
Hand Therapy Department
Hospital for Special Surgery

Introduction

At our March meeting, we welcomed Bethel Marcus, OTR/L, CHT, an Occupational Therapist and Certified Hand Therapist in the HSS Hand Therapy Department. Ms. Marcus has been practicing in this field for 11 years and has experience working with myositis patients. In Part I of her presentation, she focused on task modification for self-care activities of daily living. Ms. Marcus shared ideas on modifying the way activities are accomplished in order to decrease the amount of pain, fatigue, and inflammation that often occur afterwards.

One of the goals of task modification is energy conservation. Ms. Marcus recommended that group members pick activities they want (or have) to accomplish during the day. By learning to conserve energy, they will be able maximize their functional abilities or maintain their independence. She stressed that itís always okay to ask others for help, but when you can do things yourself without pain and inflammation, it can foster feelings of greater independence.

Part I of this article focuses on modification equipment that will help myositis patients perform daily tasks and functions such as bathing, sleeping, dressing, and sitting.

Ms. Marcus highly recommended that those with myositis work with a therapist before purchasing the following equipment to make sure they purchase the correct product for their needs.


Modified Showering

The tub grab bar can help with balance while getting into the shower, which is important because showers often have a slippery, wet surface. The grab bar can be installed without tools or drilling into the wall.

The transfer bench is half in the tub and half out. You can actually sit down on a solid surface before getting into the tub, which is a good option for those with lower extremity weakness or quad weakness. You can sit outside the tub and then bring your legs into the tub by using your arms.  Most tub benches can swivel to help shift you into the tub. Some of the transfer benches also have a side bar and can alternate to let you in the left or right side.

An over the toilet commode can be used on the toilet if the toilet seat is too low and you have difficulty descending. The commode would be a raised surface over the toilet. Another way it can be useful is in the bathtub; the bucket can be removed and the frame can go into the shower. This way, you can take a shower while sitting down, conserving energy. Commodes come in different sizes, but a standard size will work in most showers.

It can take a great deal of energy to get into the bathtub, and standing in hot water can sap your energy even more. Using the tub grab bar, transfer bench, or sitting while showering can help to conserve energy that you can use for activities you choose later in the day.

For days when you do not have the energy to take a traditional bath, suggestions include:

  • No-Rinse Shampoo and Body Bath. If you are truly conserving energy for the day and are not able to go through the entire bathing ritual, you donít even need water to feel clean with this product. It is carried at various drugstores, and even the astronauts use it to bathe when theyíre in space.
  • No-Rinse Bathing Wipes. These clean, deodorizing wipes are a good option on a day when youíre feeling weaker than usual, when your home health aid canít come, or when you have company. It gives you more independence when you can feel clean and fresh and not have to rely on assistance from others.

Task modification encourages you to use your body in different ways so you can be more independent when active.

Some other recommendations to help conserve energy when bathing include:

  • Sports towels. They allow a quick dry off. Large towels tend to get very heavy after you dry off because they trap the water, but sports towels are quick-absorbing and lightweight.
  • Baby washcloth. This is another lightweight option for drying. Itís small and usually soft, but can dry you off easily.


Modified Sleeping

For those with myositis, bed mobility, such as getting out of bed, may be a challenge. Others may have difficulty breathing when in bed. A pillow can be too soft, so Ms. Marcus recommended a firm wedge that will bring the trunk of the body a little higher and keep the head elevated. The elevation can also help ease breathing. Similar to the way another person would assist you getting out of bed by coming from behind the shoulders to pull you up, the wedge helps you because it elevates you halfway up. One group member said she has had trouble turning in bed, so she bought a satin nightgown, which helped her to move more easily.

Another way to modify your bed is to install a bedrail. Rather than using the soft end of the bed to push up against, the bed rail is firm. It is usually anchored underneath the bed. Simple devices like a leg lifter can also make it easier to get out of bed.


Modified Dress

Ms. Marcus talked with group members about their choices when it comes to the struggle of dressing each day. She suggested sitting down as much as possible or using a dressing stick. Another useful tool is a sock aid. Several group members commented that they used a sock aid and found it very helpful. One group member had a good experience with a soft brand while another group member preferred using a harder aid. 

For those with shoulder pain or range of motion problems, Ms. Marcus suggested wearing poncho style shirts and shirts with buttons in the front. The poncho style shirts tend to have wide shoulders, which makes it easier to put your arms through. Shirts that button in front are better than those that pull over the head. Also, for those with fine motor or dexterity problems, she recommended buying shoes with Velcro straps. Another clothing suggestion is a photographerís vest with many pockets. The pockets can hold small items, such as keys, cell phones, or wallets. Pockets in the front allow for easier access and help to avoid unnecessary shoulder rotation. Your clothing choices can make a big difference in dressing without assistance from others.

Ms. Marcus recommended a backpack with compartments all along the inside to distribute weight more evenly. Also look for compartments with small openings so that itís easier to reach into your pocket without jamming your hand inside. She also mentioned that leather is heavier than nylon. Nylon can also be easier to clean.


Modified Sitting

Ms. Marcus then asked if any of the members had experience with modified sitting devices. A group member mentioned that she has a hip chair at home. For those with lower extremity weakness, rather than relying on leg strength to get up or down, a hip chair or even a barstool can be useful. One group member talked about her desire to find a bar stool with wheels that she can use in the kitchen to cook. She hasnít had luck so far.

Another good option to help with getting in and out of a chair is a chair lift. It is spring-loaded and often battery operated. It can be used to transform a recliner, chair, or sofa into a lift chair. With this accessory, you donít have to use arm strength to get out of a chair. Ms. Marcus advised group members to be careful when they order a chair lift because some of them have weight guidelines. You would want to make sure you get the correct size for your frame.


Miscellaneous Modifications

Anything that requires a switch can be adapted with a foot switch. The foot switch allows you to use stronger muscles of the upper extremity or the feet to complete a task, such as turning off the lights.

Ms. Marcus stressed that there are often various ways to modify and not always one right way to do it. She suggested finding something that you want to do better and figuring out a way to accomplish it with less strain. For example, opening jars can put enormous stress on your fingertips, forearms, one hand, or both hands. An electric jar opener allows you to accomplish the same task by just pressing a button with one fingertip. This modification can also help to conserve energy.

When completing these activities of daily living, Ms. Marcus encouraged the group to consider various ways to modify their activities. By using assisted technology like spring-loaded tools, the amount of stress put on hand joints is decreased. She also talked about the benefits of electric products, such as an electric jar opener. Another modification she suggested is simply sitting rather than standing to complete a task safely when possible, or consider using a lighter tool. Ms. Marcus gave group members many wonderful resources for modifying their activities of self-care. Many of the products mentioned by Ms. Marcus can be found at medical supply stores or online.

Read ďTask Modification at Home for those with MyositisĒ Ė Part II



Myositis Support Group at HSS
Learn more about the Myositis Support Group, a free support and education group held monthly at Hospital for Special Surgery.

Summary prepared by: Angela Hunter, LMSW, Myositis Support Group Coordinator

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