Occupational therapy evaluates how a person with ALS performs daily functional tasks that include personal care, mobility and work activities. Assessment is made through interview and functional evaluation in the ALS Clinic. Recommendations for assistive devices, durable medical equipment (wheelchairs, hospital beds, bath chairs, etc), and home or outpatient therapies are made. The therapist provides instruction in body mechanics for the patient and caregiver gives instruction in energy conservation techniques and provides exercise and range of motion guidelines.
You can schedule an appointment for physical and occupational therapy through the Center for Rehabilitation Services. A site locator is found on their website. It is best to go to a site that has therapists from the Neurological therapy group.
What devices are useful with hand and arm weakness? Wrist and hand muscles may become weak affecting grasp for eating, dressing, grooming and work activities. There are many useful devices and "gadgets" on the market. Assessment of your specific need will help in selection of the appropriate items. Hand devices are usually not covered by insurance. You must purchase them on your own, but check with the occupational therapist about sources and prices, and whether these devices will help you or a waste of money.
- Built-up handles on eating utensils (lightweight)
- Foam tubing, can be used on heavy-duty plastic eating utensils (picnic ware)
- Large handled cup suitable for hot and cold liquids (all four fingers fit through the handle and grasp does not need to be so strong)
- Offset spoon or fork (angled right or left)
- Plate-guard (clear plastic, clip-on)
- Octopus suction device (non-slip disc) or Dycem
- Long straws (rigid or flexible)
- Sports drink container
- Food blender
- Velcro closures for clothing and shoes
- Knit shirts, pull-on pants, fewer closures
- Elastic thread for cuff buttons, elastic cufflinks
- Large-handled buttonhookStretchy shoelaces
- Long-handled shoehorn
Activities of Daily Living
- Baby Wipes for toileting
- Toilet attachments for cleansing, such as Lubidet
- Foam tubing on toothbrush
- Disposable Dentips (mouth cleaning)
- Electric toothbrush with rotary brush, plaque remover (Braun, Colgate, Sonicare)
- Flosser (Waterpik)
- Hand-held shower hose
- Plunger soap dispenser
- Long-handled sponge
- Wall-mount hair dryer
- Foam tubing on comb/brush
- Large-handled, lightweight comb/brush
- Long-handled comb/brush
- Nailbrush with suction cups
- Nail clippers on stabilizing platform/board
- Foam tubing on razor
- Electric shaver
- Key holder
- Door handle levers
- Touch light switches
- Offset hinges for doors (widens doorway without reconstruction)
Mobile Arm Supports (MAS)
MAS can be attached to an adjustable-height table on casters for use anywhere in the home. They allow horizontal and vertical motion of the arms so you can reach your plate and your mouth. They also work well over the computer keyboard.
Table-mount clamps are used to attach the MAS to a table or computer desk; supinator attachment allows some rocking motion of the forearm trough; T-bar attachment can be attached to support a weak wrist. What medical equipment and devices will help with leg weakness? There are many devices, braces and durable medical equipment available to assist you if you develop hip, knee or ankle weakness. Proper evaluation of the extent of your weakness and endurance is necessary before any recommendations for equipment are made. You must check with your insurance company or Medicare regarding what they will cover and what preferred providers or vendors they use. You will need a prescription (RX) and a letter of medical necessity (LMN) that can be written by the therapist or your physician, but must be signed by the physician.
- Straight cane is needed for balance and stability. Even if you think you don't need it, other people are less likely to bump into you.
- Forearm crutches act like two canes by giving two-sided support.
- Quad canes are NOT recommended. Patients trip over them. Use a walker instead.
- A strong arm cane can also provide more support for weak hands.
- Standard walker, lightweight, folding type can be transported in the car.
- Rollator walker with wheels, brakes, seat and basket (swivel wheels are needed for easier turning) give a smooth, steady gait for persons with weakness and/or stiffness. Handgrip strength must be assessed for brake control.
- Ankle-foot orthosis (AFO) used to be called a short leg brace. It fits inside your shoe, and usually should be custom molded to your leg. It may need an articulating ankle to allow movement at the ankle joint or "floor reaction" to help lock the knee joint. Which brace is medically indicated must be evaluated by your physician, physical therapist, and orthotist.
- Gait should be evaluated by a physical therapist in an outpatient clinic to test stability and safety using the appropriate walking aide.
- Mobile walkers: Invacare Rollator, Dolomite walker, or Cruiser. These have a seat and carrying basket. Good choice for people with severely limited hand strength, or moderate to severe leg muscle stiffness. It has a push bar (for weak hand grasp) and hand brakes, and locks when you release the push bar/hand brakes. It folds for transporting in the car. To obtain one, you need a prescription, and a supplier (accepted by your insurance).
- Other rolling walkers are available. Considerations include: overall stability for your height (three-wheeled walkers are not as stable), adjustability of the height of the hand grips, hand brake system, ease of operation and stability, ease of turning the walker, folding feature for easy transport in the car, seat and basket options. Standard folding walkers can be adapted with front casters either 5" non-swivel casters, 3" swivel casters, and back gliders.
- Platform Walker: These walkers add a forearm support for patients who have grip weakness and cannot safely use a rolling walker. They are also bulkier. The forearm platform may also be added to a standard walker.
- Gait belt is used around the person's waist to give assist to stand or sit. Some belts have buckle closures, some have Velcro and some have handles. Check with your clinic occupational therapist or physical therapist for appropriate style and training.
- Transfer boards are used between a wheelchair and bed or car seat.
- BeasyTrans is a sliding transfer board (sliding disc on a transfer board), available from www.beasyboard.com. The toll-free phone number is 877-992-3279 or fax 651-674-0226. This board is also available from a number of sources found on a web search.
- Mechanical patient lift (manufacturer Rand Scot Inc. 800/467-7967). This lift tilts the person forward to make dressing and toileting easier when the person cannot stand. Call for a demonstration to make sure you are comfortable in it and your caregiver can operate it.
- Hydraulic patient lifters (Hoyer, Invacare, etc) are used with a separating sling (Transaid 309 or HD309, or Hoyer model). This type of lift supports the person in a seated position. The separating sling can be placed under someone sitting or lying down without physically lifting him; it also can be removed without lifting the person.
- Power patient lifters (same as above) are used with a battery power source attached to the lift.
- Ceiling track patient lifters use electric power.
- Seat-lift recliner chairs – this chair is needed for assist to a standing position; for changing position to make you more comfortable in sitting or reclined position; for raising your legs and feet to reduce or avoid swelling; to support your head and neck in a reclined, comfortable position.
Lower Extremity Edema (Swelling)
- TED hose are used to reduce mild swelling in feet, ankles, and legs; to promote circulation; to reduce risk of blood clots (available by prescription at your pharmacy).
- Hospital Beds
- All require a prescription and a letter of medical necessity from your physician.
- Manual frame mattress height can be set at low or high position; manual crank for head and foot changes of position.
- Semi-electric frame height is set at a low or high position, power switch for raising head and foot positions.
- Full electric frame power switch for adjusting the bed frame height to transfer from the wheelchair or stand at bedside, as well as, adjusting head and foot positions.
- Side rails—full-length or half-length (easier to transfer from bed); side rails give you leverage to turn yourself from side to side if this is difficult.
Pressure-Relief Pads or Mattresses
- Egg-crate foam is used under the sheet; does not give sufficient pressure relief for long-term use.
- Sheepskin (artificial) is used under the sheet or can be used on top of the sheet; allows more air circulation, more buoyant than egg-crate foam; washable.
- Alternating pressure mattress is used under the sheet, works with an electric compressor to raise and lower pockets of air under the body areas (needs a prescription and letter of medical -necessity).
- Roho mattress—sectional or full bed, low-profile or high profile air mattress (needs a prescription and letter of medical necessity).
- Gel-foam mattress or Temperfoam mattress—maximum pressure relief, heavy once in place (needs a prescription and letter of medical necessity).
- Low air-loss mattress—moves air from one side of the mattress to the other to reduce pressure under the shoulders, hips, knees and ankles. Can be rented from a durable medical equipment company, about $700/month, purchase price $12,000 (needs a prescription and letter of medical necessity).
- Shower commode on wheels with padded seat and back, floor brakes or wheel locks, padded arm troughs can be ordered. Some have tilt seats with headrests, reclining backs or straight backs. Can be used bedside, over the toilet and in shower stalls.
- Padded bath bench are used over the side of the tub. The tub cannot have sliding glass doors; the bench cannot be used with the vanity next to the tub (not enough leg room to turn while sitting). (Sammons/Preston catalog)
- Tub seat is a small seat used inside the tub; it can be used with glass sliding doors; it must be placed in the tub after the patient steps over the side of the tub; it can only be used if the person can step into the tub area.
- High-back resin deck chairs with arms can be used in the shower stall if the stall is large enough; very lightweight.
- Walker (standard, no wheels) can be used in the shower stall for stability.
- Bar stool—a simple wooden bar stool can be placed in the shower stall to provide a high seat, easier from which to stand.
- Hand-held shower hose can be attached to a showerhead or faucet to allow water spray from proper height.
- Soap dispensers can be suctioned to tiled wall for shampoo, conditioner, soap; no bottles or caps to turn or drop. (Bed, Bath and Beyond)
- Long-handled scrubbers for the feet. (Sammons/Preston catalog)
- Long foam-handled razors for better grip and length.
- Grab bars securely fastened in the shower wall at the appropriate height can provide a "shelf" for weak arms to rest on while washing your hair, shaving, washing your face.
Sammons/Preston Inc., 800/323-5547, fax: 800/547-4333 (http://www.pattersonmedical.com/)
Smith-Nephew Rehabilitation Products, 800/558-8633 (www.smith-nephew.com)
Durable Medical Equipment (DME) Suppliers/Pittsburgh Area: Blackburns Physician Pharmacy, 800/472-2440; UPMC Home Care 888/860-2273.
Neck Supports—used to support, protect and rest weak neck muscles
- Buddy Pillow—buckwheat travel pillow with fleece cover supports the neck in bed, in the recliner chair, in the car, or on the plane.
- Soft cervical collar—simple, inexpensive, initial orthotic, can be purchased at Eckerd, CVS Pharmacy, NOT covered by insurance, may restrict swallowing if too snug.
- Headmaster collar—wire-foam collar with padded tubular frame, chin support, more open areas around the throat and neck; needs a prescription from your doctor and a fitting by an orthotist.
Selection of a Wheelchair
We suggest that patients be evaluated at the Center for Assistive Technology (CAT) in order to get a wheelchair best suited to their needs. Selection of the appropriate wheelchair depends on short-term and long-term needs and the following:
- Your insurance coverage (check for inclusion of DME [durable medical equipment] in your policy or from your insurance case manager). Usually only one wheelchair will be purchased. Your insurance usually will only pay for one. Therefore if you need a power wheelchair, you should purchase a manual chair on your own. A manual wheelchair is needed for transportation and safety (priced between $500 and $2000). A power wheelchair is needed for independence and weight-shifting (priced between $6000 and $25,000).
- Your age and the age, health, and strength of your caregiver (who may have to place a manual wheelchair in the car).
- Type of car and trunk space/hatch back/minivan/full-size van/garage and driveway space.
- Entrance/exit to your home (placement of outside steps, inside steps, railings, deck, outside porch, enclosed porch) and possible need for wood/metal ramp or porch lift.
- Door widths on the front and back doors, and interior doors, especially the bedroom and bathroom.
- Hall widths and turning space into bedroom or bathroom.
- Lightweight manual wheelchair used for transportation to and from car, should not be used for sitting in a wheelchair for a long period of time, must have a pressure-relief cushion, detachable armrests, swing-away footrests; some have four small wheels, some have quick release large back wheels, both are easier to place in car. Examples: E & J Companion, Invacare Patriot, Quickie 2.
- Power wheelchair used for independent mobility and for independent weight-shifting to decrease risk of pressure sores.
- Tilt-in-Space—seated position can be tilted backwards to relieve pressure on seat or low back, requires special electronics to move chair forward and change seat position; usually needs standard footrests.
- Tilt and recline system—seated position can be tilted backwards, back angle can be reclined, may need elevating leg rests in reclined position.
- Adjustable height of seated position—allows seated position to raise and lower from wheelchair base.
- Seating features include molded back inserts, tall back inserts, custom contoured back inserts, lateral supports for weak trunk muscles, headrests, molded seat inserts, custom contoured seat inserts, various pressure-relief cushion fillers (air, gel, gelfoam, foam) adjustable height armrests, desk-length armrests, full-length armrests, regular arm pads, trough arm pads with hand supports, swing-away footrests, heel loops, elevating leg rests, angle-adjustable footrests.
- Electronic environmental control devices, used to turn on lights, access TV, VCR, stereo/CD, computer and telephone.
- Motorized scooters or carts (known as power operated vehicles for Medicare coverage) usually are not recommended for persons with ALS because they do not provide adequate back support, head support, or arm support.
Wheelchair distributors certified by CAT are:
Blackburn’s Physicians Pharmacy
Klingensmith Health Care
The Center for Assistive Technology evaluates patients for appropriate wheelchairs. Please feel free to contact Mark Schmeler at 412/647-1310.
Each person with ALS and his/her family have a different course of progression, a different lifestyle, different resources and different family commitments. Decisions about home modifications to ease care and mobility problems are made with careful consideration of short-term and long-term needs.
A platform area for the wheelchair is needed for safety and stability inside and outside the entrance doorway. This platform must be at the same level as the doorsill. At least a 36" x 36" platform will allow the wheelchair to safely sit outside the door before going up or down the ramp. A handrail or wheel rail should be attached along the sides of the ramp. Ramps can be constructed from deck wood (outside home) or plywood (inside the garage or home). The maximum grade for indoor ramps is 12 inches of ramp for every 1 inch of rise or a 1: 12 ratio. Sometimes a sharper rise is needed because of a smaller area. Remember who is pushing up on down the ramp and the strength that is needed to control the wheelchair. Outside ramps should use 1:20 inch standard (a generous, long ramp). Walkways along the side for the house may allow space for such a long ramp. A "Z"-shaped ramp is necessary when short front- or backyards do not provide length for a safe, long incline. A five-foot area at the bottom of the ramp is recommended for stopping and turning the wheelchair. Local building ordinances must be taken into account. Portable, folding aluminum ramps are commercially available. These can be taken in the car or van for use when you go to a place where there is no ramp, or one to two steps.
"How to Build Ramps for Home Accessibility"—www.mcil-mn.org or purchased for $15 from the Metropolitan Center for Independent Living 1600 University Ave. West, Suite 16, St. Paul, MN 55104-3825, 651/646-8342, companion video $20.
- DME Access, 630/892-7400—for homes, constructs new ramps, wood or metal.
- HandiRamps, Inc., 800/876-7267, www.handiramp.com — for homes and businesses constructs aluminum and galvanized steel ramps and concrete decks.
- Sammons/Preston Inc., 800/323-5547, fax: 800/547-4333 (http://www.pattersonmedical.com/)
Porch lifts can be placed at doorways inside or outside the home depending on placement of stairs and space for the lift itself. Porch lifts can be placed inside bi-level and tri-level homes and allow use of two levels without major renovation to the home. Assessment by the installer must be made.
- Cheney Lifts, 888/228-4543.
Stair lifts can be rented or purchased. Straight stairs and curved stairs can be fitted with the appropriate models. Costs depend on length and curve of the track. Sitting balance and neck weakness must be considered. Insurance does not cover stair lifts.
- Lanza, 412/344-4000.
Ceiling Patient Lifts
Ceiling lifts can be installed over the bed, in the bathroom, or at the top and bottom of stairs to meet individual needs.
- SureHands Lift Systems, 800/724-5305, www.surehands.com
- Barrier Free Lifts, 800/582-8732, www.horcher.com
Entrance and Exit
Easy access for walking or using a wheelchair must be considered. Keep an open mind and look at all the options. Platforms or decks outside the front and back or inside garage doors must meet the threshold. There must be sufficient turning area for a wheelchair.
Door width and halls—at least 32" doorway width is needed with a door that swings inward. Offset door hinges can replace regular door hinges if there is enough room to set the door behind the doorjamb. This will give you approximately 1.5 to 2 inches increased clearance depending on the width of the door itself. Bathroom doors need at least a 24-25"clearance. Wheelchairs are too wide to go through most bathroom doors. A rolling shower commode chair is needed. It can be used over the toilet or in the shower and is usually 21-22" wide; it goes through most bathroom doors easily.
Bathrooms—Shower stalls are easier to negotiate than bathtubs. Remodeling is very expensive, but a tiled floor with a recessed drain allows a shower commode easy access for patient and caregiver. An oblong shower stall can be modified with a wood deck and removable ramp; glass doors must be removed and replaced with an expandable curtain rod and shower curtain. Place the curtain rod inside the shower area to prevent the water from dripping outside the shower stall.
Tri-level, bi-level, and two-story homes with turning stairways are the most difficult challenges.
Solutions depend on family resources. Stair lifts are an alternative for those unable or unwilling to move. Companies now rent stair lifts. A decision to move the person with ALS to the most accessible level of the home with changes for toileting and bathing needs may be the most feasible solution in the long run.
Check with companies that use ADA (American Disability Act) guidelines that modify homes in your area.
All orthotics (splints and braces) require a prescription from your physician. The company you wish to use must be listed by your insurance company (in its network). Contact your insurance company before making an appointment. Insurance may not cover shoes, or shoe inserts depending on the specific diagnosis.
Lower Extremity Orthotics
- KAFO—A knee-ankle-foot orthotic (long leg brace) is not useful with persons with ALS due to inability to assume a standing position with the knee in a locked position.
- AFO—An ankle-foot orthosis (short leg brace) is used to stabilize weak ankle muscles (drop foot) and weak knee extension; a floor reaction AFO; e.g. ToeOFF (carbon fiber) can be used to assist plantar flexion and knee extension; an AFO with articulating ankle joints allows movement at the ankle to accommodate stair climbing.
Upper Extremity Orthotics
- WHO—A wrist-hand orthotic (a forearm or resting handsplint) is used to support weak wrist and hand muscles during the day or at night. Splints should be as lightweight as possible. Most splints can be preformed but some must be custom made. Your occupational therapist will choose the appropriate splint depending on how much muscle weakness or stiffness is present. Wearing a splint on each hand while you sleep is usually not advisable, since one hand needs to be free. Alternate wearing splints each night or day. Examples: Futuro wrist brace (in Eckerd, or CVS) or Sammons/Preston wrist brace; Neutral position WHO (Sammons/Preston) or TheraPlus hand positioners (Sammons/Preston).
- FHO—A thumb-wrist support or wrap is a functional hand orthosis that supports the thumb and index finger to improve fine coordination. It does not place the thumb and index finger in pinch position and it does not make the hand stronger. It is usually made from neoprene or very lightweight splinting material. Examples: Neoprene thumb/wrist support or wrist/thumb wrap (Sammons/Preston).
Delatorre Orthotics and Prosthetics, 412-921-3004
Hanger Prosthetics & Orthotics Inc., 412-431-3553
The Role of Physical Activity
Physical effects-joint mobility, weight bearing, circulation, cardiac health Respiratory function, digestive function
Emotional effects—well-being, endorphin release, sense of accomplishment, self-satisfaction
Weakness and atrophy occur due to motor unit degeneration AND disuse
Important to maximize use of non-involved muscles
Important to maintain fitness and endurance for as long as possible
Important to preserve the muscles once they are affected by ALS
Types of Physical Activity
1. Aerobic and endurance activities
Mode: Walking; recumbent or all-extremity cycling; swimming; activities of daily living (ADLs)
Goal: Maintain work capacity
Intensity: Light to moderate; expect workloads to decrease with time
Frequency: Daily as able
Duration: As long as practical without excessive fatigue
2. Strengthening Activities
Mode: Light weights; gravity; ADLs
Goal: Maintain strength of extremities, trunk, muscles of respiration
Intensity: One set of eight to twelve repetitions, light weights or no resistance
Frequency: Three to four
times per week. Stop once weakness occurs (at onset of clinical weakness, 50% of motor neurons have died).
3. Flexibility activities
Mode: Stretching: active, Assistive or passive range of motion exercises
Goal: Increase or maintain joint range of motion
Intensity: To tolerance, rest as needed
Frequency: Once or twice daily
Duration: Until all joints are ranged
Physical Activity Recommendations as ALS Progresses
- Ambulatory, no problem with ADLs mild localized weakness. Maintain usual activities, moderate endurance activities, and avoid excessive fatigue. Light/Moderate strengthening for uninvolved muscles only.
- Ambulatory, moderate weakness in select muscle groups, use of assistive device(s). Maintain as many activities as possible, take breaks, and avoid excessive fatigue. ADLs are used to maintain strength and endurance.
- Non-ambulatory, some functional arm strength, adaptive equipment. Maintain activities as able, take breaks, and avoid excessive fatigue. ADLs to maintain strength/independence, prioritize.
- Non-ambulatory, severe weakness in arms and legs, mostly dependent. Any movement is exercise, avoid excessive fatigue.
- Dependent, severe weakness all muscles, maximal assistance needed. Any movement is exercise, avoid fatigue.
Factors to Consider When Prescribing Exercises for Persons with ALS
- Use short-term goals that can be modified frequently.
- Eventually, all exercise goals will have to be modified as function declines.
- Consider short bouts of therapy; possibly two to three visits, three or four times per year.
- Detailed evaluation of muscle strength and tone important at each re-evaluation.
- Adapted or support equipment may be necessary because of weakness and poor balance.
- Encourage rest breaks as needed; energy conservation.
- Because of the progressive nature of ALS, some persons may have little motivation to exercise.
- Stress that by doing their own ADLs, persons with ALS are exercising.
- Activity improves digestion and gastric motility, quality of sleep, joint stiffness, and psychological state.
Energy Conservation Guide
No one changes the way he performs a task unless he absolutely cannot do it the way he has been performing it. The change also depends on how easy it is to accomplish the task when performing the new method. It has to be easier the first or second time he attempts it.
- Consider what routines are necessary. Decide what you can do, what someone else can do, and what can be eliminated from the routine. Examples: dressing, grooming, time for shower or bath.
- Consider timing or scheduling of activities. Your time and schedule, as well as your caregiver's time and schedule are equally important. Plan activity and rest periods; pace yourselves.
- Consider the best use of your energy. When you climb a mountain, you also have to have enough energy to return to base camp. Use assistive devices to help reduce fatigue and frustration. Examples: walkers with wheels, wheelchairs for distance (shopping), handicapped parking cards.
- Eat high-energy foods in small amounts every two to three hours since muscles become fatigued more readily.
- Place frequently used items in the most convenient place. Place heavier items on the lowest level that is accessible to you. This applies to the bathroom, kitchen, and office.
- Purchase "gadgets" or other energy-saving devices after recommendation from someone who is knowledgeable about their actual success rates. Otherwise, you have wasted time and money. Good information can be found at support groups. But please keep in mind—not all suggestions at support groups will fit your specific problem or situation. Check with your ALS clinic staff. They usually have heard all the comments or complaints about certain items or resources. Your occupational therapist can help sort the good advice and apply specific recommendations or techniques to you.