Symptom Management

A common response to a diagnosis of multiple sclerosis is the question, “Will I  need to be in a wheelchair?” The answer is very often “no.” Studies have shown that, absent of any treatment, only about one-third of people with MS require a wheelchair or mobility aid after 20 years with MS.
 
However, for a certain amount of the MS population, a wheelchair is necessary for mobility. For some it is temporary, for others it is more long-term.
 
But “wheelchair” doesn’t have to be a dirty word. Indeed, like any other mobility aid, it can be the source of continuing independence. The matters that must be addressed – aside from the cost – are fitting, safety, and accessorizing.
 
Fitting
 
When it comes to fitting, there are a number of considerations that must be taken into account, such as posture, size, and weight.
 
Posture is very important for both comfort and proper measurement. If your posture is poor, it will result in discomfort. It may also put you at risk for pressure ulcers, pain, soreness, muscle imbalances and contractures.
 
Measurements must be made to determine the appropriate size. To ensure a proper, comfortable fit for the wheelchair, you will need to determine seat width, depth, and height; backrest width and height; and the positioning of the armrests. The seat should be a little bit wider than your widest point, should end 1 to 2 inches before the back of your knees, and there should be a few inches from the wheelchair’s footplates to the floor. To provide maximum support, the backrest should be slightly wider than your torso, and, if you have trouble sitting upright, the backrest should be higher than usual. The armrests should allow you to comfortably rest your forearm and can either be desk- or full-length. Full-length would provide you needed support to push yourself up to a standing position. Desk-length arms are shorter and allow you to get closer to the edge of a table.
 
The weight of the wheelchair must also be taken into account. For manual wheelchairs, a heavier chair means exerting more force to move, which might be a problem if muscle weakness and fatigue are common symptoms for you. There can be as much as a 15 pound difference between a standard and lightweight manual wheelchair. A steel-framed chair can weigh up to 50 pounds. A lightweight chair typically weighs between 28 and 36 pounds and can be more easily stored in a vehicle trunk.
 
For power wheelchairs, additional factors may come into play, such as the type of vehicle necessary to transport such a chair, the battery type and life, and the features.
 
Safety
 
Once you have been fitted for your wheelchair, the concern turns to safety. Two central issues are stability and maintenance. Stability includes your center of gravity, movement, and surface conditions that contribute to tipping and falling. Maintenance is the ongoing process of ensuring your wheelchair continues operating at peak performance.
 
Stability begins with being mindful of your center of gravity. Whether sitting or traveling, being properly positioned is crucial to wheelchair safety. And your center of gravity will change as a consequence of bending, reaching, and getting in and out of the chair itself.
 
When bending (either sideways or forward), reaching, or leaning, it is best to be as close as possible to the desired object. If you have to reach backwards, only reach as far as your arm will extend. Do not bend down between your knees or move forward in your seat to pick something up. When reaching, bending, or stretching, use your brakes or wheel locks to remain in a secure, well-balanced position. Finally, rehearse your movements in the presence of someone – whether a caregiver, friend, or loved one – so you will have a better understanding of your ability to move.
 
Outdoor surface conditions can also contribute to tipping and falling. Two of the main contributors are wet or sandy surfaces. Even a small amount of sand on a paved surface can be enough to unbalance a wheelchair, making it spin and tip over. Wet surfaces present the same danger. If you are  unable to avoid traveling in the rain, be sure to move at a slow and cautious pace. Before moving up or down a ramp, inspect it first, or have someone inspect it for you. Avoid curbs, steep inclines, or any obstacle that presents a risk to tipping the chair over. Only navigate these with assistance. Whether you are in a manual or electric wheelchair, you can also prevent the danger of tipping over by being careful not to put heavy loads on the back of the wheelchair.
 
Maintenance is an essential part of both general wheelchair safety and extending the chair’s operational life. If the quality of your chair declines, it can lead to joint and posture problems, and even spinal deformities. Become familiar with the owner’s manual and the conditions of the warranty. And cultivate a good relationship with your wheelchair servicer.
 
While maintenance is recommended annually, routine preventative care is a necessity. Routine care includes keeping the wheelchair clean, regularly inspecting the tires for air pressure and wear, tightening screws, and checking for worn-out positioning equipment, pads, and cushions. The front wheels (casters) should be regularly checked, and brakes should be tested to make sure they work properly.
 
There are additional concerns that come with electric wheelchairs. The power should be turned off when getting in and out, and when the chair is not in use. The speed of the chair should be set to a speed the user can safely handle, especially when going in reverse. Make sure the battery is always charged. If it is a water battery, regular inspections are necessary to make sure it is full. Finally, do not let children ride on the battery housing.

 Accessorizing
 
After you have covered the safety issues that go with having a wheelchair, there comes the last consideration: accessories. Some of the accessories will be absolutely necessary while others are simply nice to have. Then, there are those that are entirely personal.

Necessary accessories include a card or sticker listing important information and phone numbers in the event of an emergency. The information should include your name, address, and phone number. Also include your doctor’s name and phone number, (and other emergency contacts). Include the make and model of your wheelchair, and the number of the manufacturer, along with the name and number of the local provider who services your chair. Lastly, list the number of the local public paratransit or wheelchair transport service.

The other necessity is a tool kit for maintenance and emergencies. The tool kit should be attached to your chair in a pouch or box. It should contain, at a minimum, a Phillips and flat-head screwdriver, an Allen wrench set, a crescent wrench, and a tire repair kit.
 
“Nice to have” accessories make you more visible to others. These include the use of flags and decals for greater visibility during the day. At night, headlights and tail lights increase safety. Mirrors help users to keep track of their surroundings without having to put their center of gravity at risk.
 
Personal accessories are those that customize and lend a sense of personal style to your wheelchair. These can include custom bags, drink cup holders, trays, tablet or smartphone holders, weather canopies, and seat cushion covers. Spoke guards are decorative items on the wheels that can also provide a splash of color to your chair. They are available in a variety of styles that can suit many tastes.
 
A wheelchair is a personal mobility aid that can help you stay active and independent. While they come in many shapes and sizes, they all need to be properly fitted to the person using them. Become versed in safety and maintenance issues; remember to find some accessories for the chair, either practical ones or fun add-ons. Following all of these steps will ensure that you stay on the go long after you have your chair.