Products and ideas to help make living with MHE a little easier…
Reprinted from The MHE Coalition Newsletter No. 17 December 2004
Susan Wynn
Assistive devices are nothing new. They are used by the elderly, by people of all ages with arthritis, by joint-replacement patients during recovery. According to The New York Arthritis Reporter, “These tools are not only helpful to get a certain job done, they are also essential to preserving the integrity of joints already compromised….Another advantage they offer is the ability to maintain the user’s independence in performing everyday activities, from personal hygiene to household chores and work-related duties.” Some of these devices can be very beneficial to MHE patients.
All of the items described in the following sections can be found through the sources mentioned throughout and in the resource section. These catalogs and websites contain many additional products and ideas, and are worth looking through for suggestions to individual problems, as well as to compare similar items and prices.
DRESSING AND GROOMING
Challenges: A person may have trouble putting on shoes or socks, or cutting toe nails because of short or bowed forearms, or because hip or leg exostoses make bending difficult. A person with limited range of motion in shoulders may have difficulty brushing or blow drying hair. Exostoses in fingers and hands can affect one’s ability to button or tie.
Solutions: There are many assistive devices available to help with these difficulties. There are several varieties of sock aids available for those who either cannot reach their feet or who have weak grasps. As a teenager looking for independence, Nicole recently began using the Sock-Assist with good results. Nicole says it takes a little time to get the socks on, but it does work. There is also a Pantyhose Aid available. Extra long shoehorns eliminate the need to bend over when putting on shoes, and a Shoe Remover is available to help take off shoes, also without bending over. For those who have difficulty tying shoes, slip on shoes are wonderful, but if you want to wear shoes that tie, shoelaces, such as Coilers, are available with coils that never need tying, or there are deluxe elastic shoelaces that allow shoes to be slipped on and off without tying and untying. DressEZ makes a combination Long Handle Shoehorn and Dressing Aid. For those who have trouble reaching, dressing sticks are available, and for those who have trouble with their hands, Zip Grip snaps onto zippers to extend pull tabs, and Good Grips makes a button hook.
Long handle toenail scissors help those with limited reach, and there is a universal extension holder available that you can attach a razor to for shaving legs. There are also long handle brushes, combs, back scrubbers and sponges to help those with limited shoulder ROM. Nail Clipper Boards and nail brushes are available on bases with suction cups to attach to sink, making their use much easier for those with hand problems. A hairdryer holder makes styling hair easier. Also important are items that address safety concerns, such as bathtub safety rails, bath or shower benches/seats, and grab bars.
MOBILITY
Challenges: Mobility issues can fall into two categories: dealing with mobility problems following surgery, and dealing with problems caused by exostoses, chronic pain and/or fatigue, or limb length discrepancies, including inability to walk for long distances or stand for long periods.
Solutions: For postoperative patients, there are different solutions available depending upon the type of surgery and the patient’s ability (or inability) to walk. For some, a wheelchair will be necessary, while others may use walkers or crutches while they are non-weight bearing or partial weight bearing. It is a good idea to have a preoperative physical therapy session to get familiar with the type of mobility aids you will be using following surgery. It is recommended that patients with exostoses under their arms try crutches out before surgery to see if they are a comfortable option. If not, arrangements should be made for the patient to use a walker.
For those suffering with chronic and severe fatigue and/or pain, wheelchairs may be necessary where prolonged periods of walking or standing will be taking place. For many, canes can provide sufficient support during mobility. There are many different types of canes which provide specific solutions. For instance, the Sport Seat (www.walkingcanedepot.com/SportSeat/SportSeat.asp) converts from a walking stick to a seat, which can be extremely helpful if legs are giving out and there isn’t a bench in sight. Folding canes are available, which are lightweight and easy to store. Nicole keeps hers in her backpack in case she has a problem at school and needs help getting around. There is a product called “Portable EZ-Step” (www.lifewithease.com/ezstep.html) that claims to reduce pain of stair climbing and makes stairways easier to go up and down. If anyone tries this product, we’d be interested in hearing your opinion.
COOKING, CLEANING, AND EVERYDAY CHORES
Challenges: The combination of pain and fatigue, inability to bend down or reach up, weakness or pain in hands or wrists, can make cooking and cleaning difficult.
Solutions: The catalogues and web sites in the resource section have large selections of utensils that make kitchen work easier for those with hand and wrist problems. Good Grips makes a wide selection of products that are easy on the hands, from an ergonomic, natural grip bread knife to bottle and can openers, vegetable peelers, and scissors. Cutting boards, pan holders, and a “spreadboard” bread holder are available to allow for one-handed use without danger of things sliding away from you while you’re cutting, stirring or making sandwiches. There are many different options for opening jars, from the under-cabinet openers recommended by Audrey, to electric jar openers, and there are devices to help with pull-tabs.
Just as there are products to help with grooming, there are products to help people with difficulty bending clean their homes. Brooms and dustpans and sponges are all available with long handles. Grabbers are an extremely helpful tool for picking things up off the floor or reaching things high up on shelves. There are several brands available, but Alida swears by the Golder Retriever Reacher (available at www.badback.com as well as other sites). The Roomba and other robotic vacuums can be a big help for someone who has difficulty managing regular vacuuming.
Other aspects of day-to-day life can be problematic when exostoses affect fingers and hands. Products such as grips for keys and for turning small handles, as well as handle door knob adaptors can help.
GARDENING
Challenges: Pain and fatigue, difficulty bending and kneeling, reaching, and difficulty using regular gardening tools due to hand pain, mobility and rotation.
Solutions: Catalogs, such as Life with Ease (www.lifewithease.com) offer a wide range of ergonomically designed gardening tools to help prevent hand and wrist injury, available with regular and long handles. Special rakes, shovels, pruners, hoes and other tools are all available. There is also an arm support with add-on handles that allows you to use regular tools and appliances with greater ease. Garden scoots, kneeler-stool combinations, and a lightweight foldaway wheelbarrow are all useful.
SITTING
Challenges: Exostoses in the hip, pelvis and femur can affect ability to sit comfortably. Hard surfaces can put pressure on exostoses, causing pain. It can be difficult, if not impossible, to get down and sit on the floor, and difficult to get back up.
Solutions: There are several cushions on the market which can make sitting much more comfortable. The Therapy Shoppe Catalog (www.TherapyShoppe.com) has several available. Julie’s five-year-old son uses the “Disc’O Sit”, and Nicole, a high school sophomore, uses the Fit-sit Cushion. Not only do these cushions relieve pressure on exostoses, but they also address fidgeting and fatigue issues. These cushions can be used on the floor as well as on chairs. If you need help getting out of your chair, there is a self-powered lifting cushion to provides a boost, and there are chairs that contain actual lifts to help lower you down, recline, sit up and then rise to almost standing position (www.Dynamic-Living.com).
DRIVING
Challenges: Difficulty getting in and out of the car; difficulty pressing on gas and accelerator. It can be difficult to open the gas cap.
Solutions: Nathalie is applying for funding to have an accelerator placed on the steering wheel, as driving is painful for her. She’ll let us know how this goes! There is a swivel seat to help you sit and swivel your legs into and out of a car, and there are hand bars that are secured to the frame of the car door that offer stability when getting in and out of a car. A Universal Grip can be used to help open the gas cap.
SLEEPING
Challenges: As with sitting, lying down puts painful pressure on exostoses. For many with MHE, a good night’s sleep is impossible. It can also be difficult getting out of bed.
Solutions: Fortunately, there are many new mattress options that offer some relief. Chris uses a sleep number bed (an air mattress that you can control the firmness of), with a Tempur-pedic mattress topper. (www.tempurpedic.com). Nicole uses the Versailles memory foam mattress set and pillow from Dormia (www.dormia.com), which works better than anything else she has ever tried. Christina recommends the True Sleeper mattress topper, which is more economical than Tempurpedic and Dormia (www.thane.com. Search for True Sleeper). In Karla’s house, three family members with MHE use three different solutions: One uses a water bed because of bowing and nerve damage to legs, one uses a water bed with lots of pillows for legs and back, and one uses an inexpensive memory foam mattress topper from Target (www.target.com. Search for Memory foam mattress topper). There are many different versions of the memory foam mattress toppers and mattress sets available, in many different price ranges. Most everyone we asked does use a lot of pillows to cushion bumpy bones somewhere on their body, no matter what type of mattress they use.
Julie’s son uses a down comforter with fleece on one side for extra softness and warmth without extra bulk or weight, which is also an important consideration. Julie’s friend makes duvet covers for her children out of sheets, thereby eliminating the sheet part of making the bed. Since the cover is sheets, they can sleep under one piece without getting wrapped up in extra layers of cover and weight, the covers can easily be removed and washed, and it makes it easier for kids to make their beds. Deena recommends body pillows from Gaiam – A Lifestyle Company (www.gaiam.com). The pillows are in wholly organic cotton covers that feel very good. Also available are cushions for lumbar support, and gel wraps with cotton covers for pain relief and neck support. For anyone who has difficulty getting out of bed, there are various types of bed pull-ups, bed canes, and handle systems to help make getting up easier. There is also a leg lifter to help raise or lower legs without bending over.
WRITING, KEYBOARDING
Challenges: Hand and wrist pain makes writing painful and difficult.
Solutions: For those who have an extremely difficult time keyboarding, Nathalie recommends a computer program that allows you to dictate to your computer, “Dragon Naturally Speaking.” The latest version is supposed to be much better than previous versions. While Nathalie says it does take time to learn the commands of how to use the program, it provides the wonderful opportunity of being able to work without typing. For those who have pain when writing, there are many pens and pencils now available on the market designed to be more comfortable to hold. There are also grips available to use with regular pens and pencils. Many students use an Alphasmart keyboard, an inexpensive alternative to a laptop computer (www.alphasmart.com). New technology provides wrist and hand rests for computer users, and better mouse design. (www.quillmouse.com/products/). There are many products including braces, heat and ice packs that can help during painful flare-ups.
There are many other products, too numerous to list here, that make life for those with MHE and other musculoskeletal diseases easier and more productive. If you have recommendations for products that help make your life easier, please let us know. The MHE Coalition does not endorse any of these products. As our disclaimer states, while many find the information and experiences that we share helpful, they are in no way a substitute for professional medical care. We do not, as an organization, support or endorse any particular treatment, therapy or medication. However, we hope that these ideas will encourage you to investigate the many products that are available.
Resources: The products listed above are available from a variety of sources, and it is a good idea to shop around and compare items and prices.
Dynamic Living, Inc., 1-888-940-0605, www.dynamic-living.com
428 Hayden Station Road, Windsor, CT 06095 (print catalog available)
Functional Solutions, 1-800-235-7054, www.BeAbleToDo.com
North Coast Medical, Inc., 18305 Sutter Boulevard, Morgan Hill, CA 95037-2845 (print catalog available)
Life with Ease, 1-800-966-5119, www.lifewithease.com
P.O. Box 302, 435 Rt. 103, Newbury, NH 03255 (print catalog available)
The Therapy Shoppe, 1-800-261-5590, www.TherapyShoppe.com
P.O. Box 8875, Grand Rapids, MI 49518 (print catalog available)
Alphasmart, www.alphasmart.com
The Arthritis Foundation, www.arthritis.org, Product and Services Directory
Dormia, www.dormia.com
Gaiam, www.gaiam.com
The Golden Retriever Reacher, 1-800-745-9558, www.badback.com
Pain Reliever.com, www.painreliever.com
Tempur-pedic, www.tempurpedic.com
Walking Cane Depot, 1-888-399-4870, www.walkingcanedepot.com
The Wright Stuff, Inc., Athritis Supplies, www.arthritissupplies.com
Many thanks to all those members of the MHE Yahoo Online Support Group
who shared their product recommendations and ideas.