Self-Care Task Modification when Living with Myositis (Part II: Household 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
Modified Environment
Modified Cooking
Modified Cleaning
Modified Work Station
Home Improvements
Modified Leisure Activities
Modified Driving


Introduction

At our April meeting, we were pleased to welcome back Bethel Marcus, OTR/L, CHT for Part II of her presentation on task modification. This month’s presentation focused on modifying your home environment as well as making modifications when cooking and cleaning. Ms. Marcus is an Occupational Therapist and Certified Hand Therapist with 11 years working in this field and has experience working with myositis patients. A goal for her presentation was for those with myositis to regain or maintain new habits for modifying to promote independence.

Ms. Marcus explained how making changes to the way you perform activities could help reduce pain, fatigue, and inflammation. Task modification can help you conserve energy and maximize your functional abilities. By conserving energy when completing daily chores, you can save energy for the leisure activities you enjoy. Conserving energy can also enable you to complete a necessary activity in the future that requires greater strength and cannot be modified. Ms. Marcus repeated the encouraging words, “Modify and use, not use and abuse.” It may be helpful to practice making changes to your home while performing an activity so that modifications become easy and familiar.
 
Ms. Marcus also encouraged the group to consider the future benefits that modifications can bring. The saying, “an ounce of prevention is worth a pound of cure” reflects this thought. Along similar lines, she offered another adage: “if you use your body safely even 10 times per day, you avoid abusing your body 10 times per day.” By making healthy changes now, you can prevent injury later. Ms. Marcus offers some general suggestions for modifications; however, please be sure to consult your physician about the best way for you to make changes that best meet your personal needs and physical abilities.


Modified Environment

Many individuals with myositis spend much of their day at home, especially those who have a flare, or those who have stopped working or are retired. It’s important to keep reaching to a minimum to avoid straining muscles. Rather than storing items you use regularly high on a shelf or low in the back of the cabinet, place them within reach. When carrying items, it’s best to carry them close to the body and to position your body to have them as close as possible. Additionally, when pushing a cart or a walker, bring it close to you and keep it close while you push. Also, try not to push with an arched body or with your lower back; rather, keep your elbows tucked inside and use your entire body to throw your weight into it. The intention is to use larger joints and to reduce the amount of straining.
 
Another environmental modification is to keep your environment free of clutter. The arrangement of objects in your environment can encourage the healthy use of your body. For example, if you use adaptive equipment, it needs to be in a place where you can find it. If it is covered by clutter in a drawer, then you won’t be as likely to use it. You will also be expending energy unnecessarily while digging through the drawer. Lastly, it’s best to be able to see what you need. If you store items in plastic bins, try to use clear plastic instead of colored plastic. If you can see what you need within the bin, you don’t have to dig through, and it will help to keep bins more organized and clean.

Another way to prevent a modification from being effective is if you keep it high on the shelf or have to move other equipment out of the way to get to it. Rather than helping to conserve energy or preserve the joints in your hands, you are using extra energy and working your body if you are searching too long for the electric can opener, for example. A good assistive device placed in a poor environment can cause more stress than usefulness.


Modified Cooking

Ms. Marcus provided the group with useful suggestions and techniques for cooking. For help with cutting, she gave examples of how to choose items used to cut foods that would cause less stress on the hands. The easiest modification would be to buy pre-cut vegetables, though they can also be more expensive. Another useful tool is the “kitchen mandolin”, which allows you to use your whole hand to cut foods. It also allows you to use your elbow range of motion rather than your wrist. Similarly, an angled knife is a good way to ease cutting since you hold it in your whole hand and cut with a rocking motion, which allows you to use your shoulder and elbow motion rather than fine motor function. It also eases shoulder pressure and allows for an easier grip.

Other devices, such as a food processor, built up peeler, food chopper, and kitchen scissors are also ways to modify cutting. A group member mentioned that some devices, such as a food processor, could be too heavy and difficult to clean. Ms. Marcus also talked about the benefits of using sharper knives and other cutting utensils to help preserve small joints in the hand and to encourage good body mechanics. Using dull knives or scissors requires one to unnecessarily use a lot of bodywork. It may be helpful to experiment with different cutting utensils or to have some pre-cut vegetables in the freezer for days when you are having a more difficult time with mobility.
 
Another way to modify and conserve energy is to sit down while performing the task. A tall stool may be helpful when working in the kitchen.


Kitchen Utensils

Ms. Marcus talked about how the kettle tipper and pot tipper are a helpful ways to change the way you work on the stove. The kettle tipper allows you to pour with one hand without feeling the weight of the kettle. With the pot tipper, the pot sits in a cradle and you can pour one-handed. When it sits on the stove it allows for one-handed mixing without shifting the pot. Using a lid drainer makes it even easier, as you can pour right from the tipper.

Another gadget is the spaghetti bucket strainer. It fits inside a pot; when the pasta is finished, you just lift the bucket out and the spaghetti drains. You can buy one that is made of mesh so it is lightweight. To drain the water out of the pot, one group member suggested using a measuring cup to remove water a few small cups at a time rather than trying to carry a heavy pot. Other ways to make straining pasta easier is to use a large slotted spoon to lift the pasta out of the pot. Ms. Marcus suggested buying bowtie or spiral pasta that is easier to keep on a spoon, requiring less bodywork and helping to conserve energy.

Also, look for large handled utensils. The large handle allows for a larger grip, and less strength is needed to hold onto the utensil.

When working in the kitchen, non-skid surfaces can be helpful. Ms. Marcus suggested using utensils with rubber handles to reduce slippage. One brand that makes rubber tipped utensils is OXO, with their Good Grips line. Counters can become slippery with water or sugar if baking, and since plastic can be slippery, a non-skid surface on the bottom of a bowl can prevent it from sliding when stirring or using a mixer. She also suggested that rather than holding a bowl in your hand and straining your wrist while stirring, you can use a non-skid bowl. It will allow you to relax your hand. Or, use the corners of the sink to lean the bowl on, and the sink will keep the bowl from slipping.


Slippery Surfaces

Group members shared their ideas for kitchen modifications with Ms. Marcus and the group. A group member explained how she cuts squares out of material typically used under floor rugs to keep them from slipping. She uses the material under her bowls and plates when cooking, and she also uses it to keep her tablecloths from sliding off the table. Another group member mentioned how she uses the same material in her cabinets to keep the dishes from sliding out, and a third member stated that she uses waxed paper to cover the counter when cooking. It allows for easy cleanup because it catches all the crumbs and protects the counter from spills. It also reduces the number of dishes used to cook because some foods can be prepared directly on the waxed paper. When done preparing the food, waxed paper can be easily rolled up and thrown away.


Reducing Clutter

 
As mentioned above, Ms. Marcus talked about the importance of avoiding unnecessary strain when cooking, including the related importance of keeping the counters clutter-free. The less you have to move, the more space you’ll have to work with. 

One way to reduce clutter is by monitoring and cleaning up your trash as you go. A group member shared how her hand sometimes shakes when she is measuring flour or sugar, so she found it easiest to perform the task standing over the sink. Later, she used the same modification to reduce cleanup by peeling juicy fruit, like a pineapple, over the sink.  


Microwaving

Another idea for modified cooking that a group member shared is using the microwave to make eggs. A group member said she finds it easier to cook an egg for a few seconds in the microwave. It saves time and conserves energy because there is no greasy stove or pan to clean up. Ms. Marcus told the group that she puts eggs and a few veggies in a small dish that is designed to make a quick omelet in the microwave.


Modified Cleaning

Ms. Marcus presented ideas for modified cleaning to the group. She suggested using a long handled mop/broom/duster with a pivot end that allows you to access hard-to-reach places, such as under the couch or behind a shelf. The group discussed one product called the “Swiffer”. It eliminates the need for you to get down on your hands and knees to scrub the floor. The long handle allows for further modification since you can perform the activity while sitting down, thus conserving energy. Some companies also make a version that is wet, for use in the kitchen or bathroom. A group member said she uses a product by “Mr. Clean” that has a long handle and pivoting head to clean her shower.


Push Cart

Ms. Marcus next mentioned the benefits of using a rolling cart or trolley when cleaning. It is most helpful if the cart is located in an accessible location in the house or apartment. The cart can allow for easier setup and cleanup. When setting the table, the cart can be used to stack dishes on, allowing all setting pieces to be brought to the table in one trip. When the meal is finished, the dishes can again be stacked on the cart and brought to the sink at once. It prevents you from loading up your arms with heavy dishes and conserves energy by cutting down on the number of trips between the table and the cabinet. When using the cart, using good body mechanics is essential. Pushing with a tight stomach, with the cart close to the body, keeps you from straining. The cart can also be used for picking things up around the house. Another useful tool for this purpose is a long handled “reacher”, enabling you to pick up items off the floor without the strain of bending over.


Spray Pumps

At a previous meeting, a group member expressed her frustration about using small, handheld spray pumps. Ms. Marcus talked about the difference between using one finger spray bottle and a multiple finger spray bottle. You can modify cleaning products by using a spray pump that fits two fingers or more. A larger spray pump allows for additional support, with less pressure needed to operate it.

Ms. Marcus also talked about how you can even use a spray bottle to water the plants. Rather than carrying a watering can and straining to reach a hanging plant, you could just spray the water into the container.

You can also choose the size of the bottle and select smaller bottles that might be lighter to carry. Most bottles can be modified. If you have a special product that only comes with a small spray top, consider inserting a clean larger spray pump into the bottle to make it easier to use. Be sure to save bottles you like, as they can be cleaned and refilled with cleaning products, perfumes, body sprays, or just water. Sometimes it saves money to get a larger bottle of a product but then have one small one that is easier to carry around that you continue to fill up from the larger bottle. Ms. Marcus reminded the group that when choosing spray bottles, one finger spray pumps can put a lot of strain on your hand, while a spray pump that allows you to use multiple fingers will give you good joint protection.


Cleaning Mitts

Ms. Marcus mentioned how a bath mitt that is typically used for washing the body can be used to clean any surface. Using a bath mitt when bathing is already a modification, so Ms. Marcus referred to using the bath mitt as a household cleaning tool as “modifying a modification.” The idea is that after spraying a surface with a cleaning solution, the bath mitt allows you to use your elbow and your shoulder when cleaning, rather than your hands and fingers. This modification can be helpful if you need to clean and are feeling weakness in your hands, or if your fingers are hurting. You can just slide your hand into the mitt and your shoulder and elbow do the work. Another similar cleaning item that can be helpful is the “loofah” sponge. The loofah is firm and has a strap that can go over your hand. Although it is typically used to wash the body, it can certainly be helpful when washing a counter or table. 


Vacuuming

Finding a vacuum that is lightweight is important. Ms. Marcus suggested looking for bagless vacuums because they have the potential to be lighter. They may be easier to clean as well because you do not have to change the bag. She also suggested finding a vacuum with a quick cord release so you do not have to spend additional time and energy wrapping the cord around the vacuum. An upright vacuum can also help to conserve energy, preventing you from straining by leaning over and reaching under furniture.


Closet Organization

Keeping your closets neat and your clothes accessible can be difficult when certain kinds of hangers are painful or difficult to open and close. Ms. Marcus suggested using hangers with multiple slots from which to hang your pants. The pants just slide on and no thumb pressure is required. With multiple slots on the hanger, it can store a number of pairs of pants in a reduced amount of space, therefore leaving more room for other items. It might also be helpful to look for a hanger that allows you to use your whole hand to open and close it rather than forcing you to exert thumb pressure. A plastic hanger that stays open to allow time to arrange pants or shirts is most helpful. Another way to keep your closets clean is to use clear plastic bins that you can see through rather than bins that are dark colored. Clear plastic eliminates the need to dig through the bin to find what you need. It can also help to conserve energy if you can see what you are looking for right away or if you know from a quick glance that the item isn’t in the bin. Clear bins come in many different sizes and shapes for all areas of your house, including the closet, kitchen, or under the bed. You can even buy clear plastic shoeboxes so you don’t have to search through many boxes to find the pair of shoes you want to wear. 


Modified Work Station

If using a computer, the fewer cords that are in the way, the better. Also, it is helpful to keep clutter away from your workstation. It can be helpful to use a hands-free headset for phone calls. The monitor should be at comfortable viewing distance, i.e., eye level or slightly lower to avoid straining your eyes. It is important to have proper back support and to sit at a 90-degree angle. It is very fatiguing on your hands to have your wrists bent, so it’s best to keep your arms in a neutral position.

Ms. Marcus talked about the importance of changing positions. For example, if you are working at the computer, write down the time you begin. As soon as you start to feel that first sign of discomfort and you begin to move and shift, look at the clock again. If it was 20 minutes, then subtract ten minutes off that time, meaning you should stop every 10 minutes. It’s your body’s way of telling you it needs a break. You can stretch for a few minutes or just change positions and stand up. You could also do some knee bends or side bends. By opening up, you can get your circulation going again.


Home Improvements

Ms. Marcus mentioned to the group that if possible, it could be helpful to make home improvements. She suggested installing lever arms for faucets. They allow you to push the faucet on and off rather than grabbing and twisting, which can stress your fingers. Another example of a helpful home improvement is a doorknob extender, which makes it easier to open and close the door without straining so much.


Modified Leisure Activities

Many people have a number of different remote controls for the VCR, DVD player, stereo, and television. Ms. Marcus suggested buying one “universal” remote control that can be used for all devices. She mentioned that when you are finally comfortable on the couch, you shouldn’t have to get up to search for the right remote. She also gave suggestions for hobbies, such as playing cards, suggesting using a cardholder, especially for those individuals having problems with fine motor control or dexterity.

Ms. Marcus also suggested that group members get into the habit of changing positions regularly when completing an activity. She advised not to get stuck in one position. For those who want to write, there are writing tools that are specifically designed to ease stress on the hands. 


Modified Driving

Ms. Marcus noted that she worked with a patient with inclusion body myositis who turned his car in for a Jeep because he couldn’t lower himself into his car anymore. She suggested a handbar car aid to support you while getting in and out of your car. It attaches in the space where the car door latches. A group member asked if it could be used quickly, e.g., to get in and out of a taxi. Ms. Marcus said it can be used quickly and is capable of being attached to either side of the car. It is usually lightweight and can easily fit into a purse.

When making changes to your home and activities of daily living, Ms. Marcus suggests that you might need to experiment and try various modifications to find one that works best. It can also be helpful to listen to suggestions from others experiencing similar physical limitations. However, what might work for a friend, mother, brother, or neighbor might not work for you. Keep in mind that some higher-level adaptive equipment may require training by a professional therapist. Ms. Marcus encouraged the group to be safe and appropriate for their level of mobility when making modifications. 

Read “Self-Care Task Modification when Living with Myositis” – Part I



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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