ALS From Both Sides, ALS Patient Care
ALS From Both Sides
Care of an ALS Patient
By Diane Huberty, Retired RN, Certified Neuro Nurse
...and ALS Patient


Putting aside the unanswered questions of  "Use it or lose it" versus "Exercise hastens progression", there comes a point when refusing a wheelchair is not only impractical but unsafe and self-defeating. Using a wheelchair doesn't mean giving up walking completely and it doesn't mean giving in to the disease. Letting the disease limit your life too much, too soon, and cause dangerous falls is giving in to ALS! If your subconscious is fighting a wheelchair because it is giving in to ALS, your subconscious is dead wrong. It isn't fighting the disease, it is trying to wish it away. Fighting ALS is all about finding solutions, not letting the disease rob you of things you could still do. We often hear the phrase "confined to a wheelchair." That is so wrong! It should be "freed by a wheelchair". Freed to move around independently, freed from exhaustion, freed from being homebound and isolated, freed from broken bones that will plague you forever, free from falls that can kill you, free to add normalcy to your life!

The trick is to recognize the point at which you begin narrowing your life and risking severe injury. That moment isn't as clear-cut as it sounds because we all tend to not want to recognize what is going on. Here is my list of subtle hints that it is time for a wheelchair:

Many people resist going to wheelchair use for a variety of reasons; it is embarrassing to be seen in one, it is giving in to ALS, their legs will lose whatever strength they have left. News Flash: You won't look half as pathetic in a wheelchair as you will sprawled on the floor after a fall, so get over it, suck it up, etc. Using a wheelchair gives you the mobility ALS is trying to rob you of so it is definitely not giving in, it is fighting back. Your legs may lose some strength, but they will lose it anyway when (that is when not if) you are laid up after a fall. Broken bones, concussions, sprains and torn ligaments on top of ALS weakness are very disabling, and ALS people rarely get back to where they were before the injury.

Manual Chairs

Your first wheelchair will probably be a manual chair. A manual chair is convenient to take along on any outing whether you end up using it or not. Although insurance will pay for a new chair, used chairs are easily found at garage sales or Craig's List. There are two things to check before buying used: Make certain the brakes work and the tires are not worn and loose on the rims. If you find a standard manual chair hurts your butt, cut a piece of 1/2 inch plywood to fit in the seat and top that with a high-quality pressure relief cushion such as a ROHO air cushion or a gel cushion.


What about a Scooter? A scooter is a temporary solution but it gives more independence than a manual chair that you most likely can't use by yourself. It is nice to have if you can afford one. The length of time you can use a scooter limited by the need to lift your arms to reach the driving controls on the tiller, and the lack of good side support when trunk muscles weaken. Considering the short time it will work for you, a good used scooter, often a barely used one, is much less expensive. A scooter salesman will gladly encourage you to buy, telling you that he will file for Medicare/insurance and the scooter will cost you little or nothing. That is true, but doesn't take into consideration that you will graduate to needing a power chair. Medicare/insurance will look twice at a claim for a power chair if you filed for a scooter in the last couple of years. They probably will pay for it but the claim process may be drawn out with denials and more paperwork.

Power wheelchairs

So we arrive at the pretty much inevitable power wheelchair. Many people use a recliner for comfortable seating during the day but a correctly fitted and equipped power chair is just as comfortable, provides better postural support, protection from pressure sores, helps to minimize foot and leg swelling, and is much more versatile.

Used power chairs are fairly easy to find and even newer, barely used chairs with all the necessary features are often about a tenth the price of a new one. Why? Because Medicare/insurance pay about 80% of the cost of a power chair. Properly out fitted for an ALS user, power chair costs an average of $27,000 so it costs the user about $2,100. When the user dies the family doesn't have to get a lot for the chair to cover what was spent on it. Putting a high price on even a top of the line, barely used chair means it is unlikely to sell.

So why not buy a good used chair? If you are not eligible for Medicare or Medicaid nor have other insurance, a used chair can be a good, affordable option, but you need to buy carefully. You must be able to sit in the chair before you buy. Ideally, before you buy a used chair, you would have an occupational therapist or wheelchair seating specialist evaluate the chair with respect to the ability to adjust the fit and add features you will need. If you have Medicare/insurance they will not pay anything toward a used chair. And if you are insured, your copay on a new chair will generally be even less than the cost of a good used chair.

Aside from cost, a new chair will be built specifically to fit you, built with all the features you need, built with adaptability for your future needs. A used chair may need adjustments and parts to fit you and that can get very expensive, especially if it wasn't a close fit to start with. You may be able to get a used power chair from the MDA Loan Closet. Type of chair and size is limited and it may take quite a while to get a suitable chair but it will be free and yours to use until you no longer need it.

The first step in buying a new chair is to find out what DME providers are covered by your Medicare/insurance policy, especially if your policy requires you to go to doctors and other providers in their network. There are not that many providers in most areas and you will want to have one within reasonable driving distance if possible. It is frustrating to have to spend hours on the road just to have an adjustment made to your chair. Some providers are good about sending someone to your house but others have such big areas to cover they can only do that if your chair problem or your condition makes it too hard for you to go to them.

It cannot be emphasized enough: Don't buy a power chair on your own. Buying without qualified help can result in a chair that doesn't fit your body and is uncomfortable, not adjustable enough to make it work for you, and not adaptable for future needs.

It is important to go through a physical therapist familiar with ALS. The therapist will know the paperwork, physicians orders, and the insurance justification needed to get all the parts and add-ons that will make the chair adaptable for you well down the road. Hopefully, the therapist will work with a certified wheelchair specialist, not just a salesman. That specialist is the one who will order, assemble the chair, and do any tweaking or changing out of equipment to make it the best chair for you.

Begin by calling the local MDA office to get a clinic appointment to be evaluated for a power chair. The cost of a clinic visit is billed to your insurance and any amount not paid (or if you don't have insurance) will be absorbed by the MDA. At the clinic visit, you will see a therapist who will take you through the process of getting your chair. The therapist and usually a wheelchair specialist will evaluate not only your current strength but also your future needs based on typical ALS progression. You will be measured to get the right backrest and seat size, need for additional options such as tilt and recline, headrest, etc. will be considered, and a recommendation for the type and brand of chair made.

Important Power Chair Features and Considerations
  1. Tilt, Recline, Leg Lifts
    Tilt and recline and power leg lifts are features you will need. Tilt angles the chair backward for periods of pressure relief and also makes it much easier to get you scooted back in the chair so you are seated comfortably. Recline lowers the backrest and when used with the leg lifts can let you lie back in your chair with your feet up. Recline won't get you flat but when used with tilt it may. Standard power leg lifts are fine for adjusting your legs while sitting up, but when you lie back in your chair and raise the footrests, the footrests are suddenly too short! Your knees have to bend or you need a big pillow to get your heels above the footrests. Very inconvenient and hard to get comfortable! The solution is to order "articulating" leg rests. These lengthen as they lift so that your legs aren't scrunched even with the legs all the way up. Comfortable for elevating your feet to reduce swelling or just catching a nap! All this is necessary for comfort, preventing pressure sores, naps, dentist visits, and any woozy spells if you are prone to fainting.
  2. A foam cushion just isn't good enough for a full-time wheelchair user and neither is the seating that is standard on some chairs. The best options are a ROHO air cushion or a gel cushion. Most people prefer the ROHO. It is expensive, about $360 on the SpinLife website, and is covered by insurance and Medicare. The people where you got the chair should be able to help you with the paperwork. You will want the 4-inch thick High Profile Cushion. It comes in many sizes to fit your chair and you need the largest size that fits in your chair. Any seat cushion on your chair needs to be removed so that the ROHO sits on the flat metal base of the seat. The ROHO comes with a hand pump and patch kit New cushions have Smart Check for determining the proper inflation for a specific user. It is essentially a glorified tire pressure gauge but it something users have wanted for years! It saves a lot of the trial and error adjustments of older cushions. I find it odd that with it they are now recommending daily checks of your pressure setting. Odd because once I find the right inflation amount with my old cushion, I don't need to adjust it unless I have had to patch a leak (an extremely rare event).
    For anyone without the Smart Check, here is how to set up a ROHO air cushion. I suggest pumping the cushion up fairly full, then leaving the valve open for about 15 minutes. It won't deflate completely, just remove excess air. Then get into your chair and sit on it. It will still feel rock hard and need to be deflated more! You are not supposed to sit ON the cushion, but rather to sink down and sit IN it. Have a helper put their hand, palm down, under the bones of your butt to help check the inflation. They should be able to wiggle their fingers just a little without feeling them bottom out on the metal of the seat pan. You will have to open the valve while you are sitting on the ROHO to force more air out—and you will probably be surprised at how much air has to be pushed out before the cushion is comfortable. If you find you have let out too much air and are bottoming out, just use the pump to add more. That can be done even while you are sitting on the cushion. It will probably take a couple of tries to get it inflated/deflated to where it is comfortable, but once you do it won't need adjusting for months. All this fussing around to get the pressure right is necessary and well worth the effort!
  3. Attendant Controls
    Attendant controls allow someone else to drive the chair and are very helpful. Attendant controls are usually mounted on the back of the chair. That means an attendant cannot hold a door open while driving you through. Backing through does help but the door is going to be closing before you are all the way through. Simple solution: Buy a rubber door stop and keep it on your chair.
  4. Total Chair Width
    offset hinges The width of the chair is so important when it comes to getting through doorways. The chair itself may not be a problem, but contoured armrests, padded elbow stops, leg rests and many other add-ons can add inches to the width. The width of the chair is determined by your size, but the choice of the brand and how accessories do make a difference. Measure your door frames and determine what if any modifications can be done to narrow doors. (Off set hinges add about 2 inches of door frame space!) The space at the approach to the door is as important as the width of the door. If you don't hit the threshold dead straight on, the chair will turn in the doorway.
  5. headrest
    At some point, you will need a headrest. Most chairs accept any type or brand of headrest so this isn't a concern in selecting a chair.
  6. Joystick
    Most of us start with a standard joystick but may need something different later on. The electronics for your chair should accept other driving control systems.
  7. Tires
    Solid tires are rubber and/foam filled. They are the least expensive, long lasting, cannot go flat, and maintenance free. They do not cushion bumps so give a rougher ride outdoors but allow the chair to roll and turn easily. Pneumatic tires are air filled so absorb bumps better for a softer ride. They can be punctured and require regular maintenance. Semi solid tires are air and foam tires with solid inserts to prevent punctures. They provide medium cushioning and require some maintenance and replacement. Most of us will do fine on solid tires as long as we can avoid cobble stones!
  8. Space for Bi-level or Invasive Ventilator
    Consider is how a Bi-level Ventilator or vent can be mounted on the chair in the future. If the chair already has the mechanics for reclining taking up space on the back of the seat, adding Bi-level or Invasive Ventilatorwill make the chair considerably longer and less able to maneuver in tight spots.
  9. Elevated Seat Lift
    A power lift seat will not be covered by Medicare and costs about $1,000. It is nice to be able to rise up to have face to face conversation with people who are standing or seeing around in a crowd which are usually infrequent situations. A standing chair would also make it possible to attend concerts and events where everyone stands up in front of you. ("Bruce! Bruce!") I don't think insurance will see that as a medical necessity though! The other two reasons to have the elevated seat are of fairly short term use for typical ALS progression. The elevation option makes standing transfers easier for patients and caregivers, but standing transfers won't work when leg strength is lost. The other reason for an elevating seat is to be able to reach things on higher shelves or work at the kitchen counter top. If you love to cook and still have strong arms, it may be worth the cost to you but when arm weakness develops, you won't be reaching for stuff anyway.
  10. Standing Chair
    Medicare/insurance is very unlikely to pay for it. Being able to stand for the purpose of weight bearing would be great for the medical purpose of slowing the development of osteoporosis.
  11. When ALS is progressing rapidly, the money spent on this feature may be better spent on an overhead lift system. The big decision with a power chair is the type of drive; rear, mid, or front wheel drive. There are pros and cons to each type of drive. Ideally, you would have the opportunity to try each type in your home and outdoors on the terrain you are likely to encounter. That is a joke. Few vendors have a demo chair of each type for you to try. Most will be more likely to have one or no demo chairs. There are some differences between drives that can help determine what should work best for you.
    1. rear wheel drive A rear wheel drive is very good for outdoor use off sidewalks. The push provided by the rear wheel drive can get it up and over most smaller obstacles allowing it to travel well over grass, snow, rough ground and trails as well as up driveway curbs. It handles higher speed smoothly, making it the best choice if you want a chair that will travel any distance efficiently and quickly. Indoors, a rear wheel drive has a somewhat larger turning radius but works well. It moves smoothly without the lurching that is synonymous with mid-wheel drive. It steers intuitively making it easy for any caregiver or friend to drive using an attendant control joystick mounted on the back of the seat.
    2. Front wheel drive Front wheel drive is not as common. It is the best for climbing over obstacles as high as two inches or more such as curbs and does so without taking the bump at high speed. It can handle snow, gravel, and rough terrain but tends to fish tail at higher speeds so has lower speed built in.
    3. mid-wheel drive The drive most often recommended for those whose main use will be indoors is the mid-wheel drive. It has the smallest turning radius so it can turn in an area slightly larger than the chair itself. Outdoors a mid-wheel drive chair can get hung up on uneven, soft, or snow covered ground or on badly cracked sidewalks or streets. If the front or rear casters are on top of a high spot it can leave the chair resting on the other set of casters with the drive wheels off the ground and spinning uselessly. Climbing any curb cut out that is not fairly level and gradual can cause this and require a ramp. Driveway curbs fit this category but unlike sidewalk curb cuts, are wide enough to be climbed by driving up at an angle. Advancements in mid-wheel caster design are resolving these problems very impressively.

A problem with mid-wheel drive that never seems to be mentioned by the manufacturers but does come up in discussions by mid-wheel drive owners is called Caster Jerk. This is not the typical flutter of any caster. It is a jerk or lurch to the side. The leg rests and foot plates bash walls, scratch furniture, and inflict great pain on any ankles that get in the way!
Any wheelchair has some caster jerking as the casters swivel 180 degrees from forward to backward. There is resistance to the swivel until it reaches 90 degrees and then it finishes the swivel quickly causing a little jerk in direction. The movement is slight and soon ignored.
With a mid-wheel drive, however, there are four casters attempting to change direction 180 degrees. The jerk is accentuated and can be a problematic lurch to the side. This is minor and easily accommodated to in average size rooms where the casters have enough distance to travel to move more smoothly through the swivel. This can be adjusted with steering control settings or may require moving the entire seat on the base. It cannot be eliminated entirely.
In small spaces, it becomes a significant problem if it is necessary to back up, turn, and pull forward again to position the chair correctly. When there isn't enough space/distance for the casters to swivel smoothly, they jerk the chair quite powerfully to one side. The jerk occurs even after the joystick is released and even if you attempt to steer to the opposite side. Perhaps the most frustrating aspect of caster jerk is that once you are in a tight space you can't adjust the position of the chair without repeated jerks. Times when you are likely to encounter jerking include maneuvering in a small bathroom to position the chair accurately beside the toilet or at the sink, at a computer desk where you need to be centered and straight on, in a van where you need to face forward in alignment with the tie downs, in doctors and dentists exam rooms, restaurants and buildings with small entries.
The jerking problem is one that most users become accustomed to, and they love their mid-wheelchairs, but will admit jerking does occur and is annoying. People for whom the mid-wheel drive is their first chair accept the problem as part of wheelchair life. Switching from rear wheel to mid-wheel is more difficult. The jerking is more obvious and can make rooms and spaces designed for a rear wheel drive very difficult in a mid-wheel drive.
For people who can drive themselves, a mid-wheel works well, but when they deteriorate and an attendant must drive, it can be problematic. Each caregiver must work with the chair often enough to overcome the learning curve for basic driving and, depending on the home layout, for tight spaces.

Selecting a Vendor

You probably won't have too many choices about which vendor (durable medical equipment provider) you get the chair through, but consider the distance you have to travel to have it worked on. Having to travel hours just to have a speed setting changed is annoying. Not all vendors service all brands.


Once all this is decided the paperwork begins.

Because of this process, the traveling paperwork can get stalled anywhere along the way. Be a pest and call the therapist in a couple of weeks to find out how far the paperwork has gotten and continue to check on it until it has been sent to the insurance company. The chair won't be ordered from the manufacturer until Medicare/insurance approval is received by the vendor, so once you are told that the paperwork has gone to Medicare/insurance, call the equipment provider every month to track progress. Expect a minimum of three months and more likely at least six months to get the chair approved, built, delivered, and final adjustments made.

Hopefully you will be able to get a van to transport you in your wheelchair. Ideally, you will be able to try the two out together but that isn't usually the case. If you are tall or require an extra wide chair, standard van interior space and headroom may not match the chair's requirements, so don't rush to buy a van until you have the chair to try in it.

The chair will need to be fastened down inside the van. One thing to consider is where the tie downs attach to the chair. Some chairs have the tie down spots up on the seating section of the chair. This might have some safety advantage in an accident but it does require re-doing tie downs if you want to tilt or recline the chair while out and about. Tie downs on the base of the chair don't affect seating position changes.

When your chair arrives expect to spend several hours with the specialist getting it set up, fitted to you, and controller speeds adjusted. Bring along someone who will be your designated mechanic for any adjustments you don't want to come back into the shop for—like fixing a skewed footrest after plowing into a wall. (A dry wall handyman is nice to have too!)

Never, ever sign anything to say you accept the chair until you have taken it home and tested it there in every room where you can anticipate ever using it. Test it on your wheelchair ramp, on grass, gravel, and slopes. Drive it into a van and make certain you can turn to face the front. Test it in restaurant entries and dentist and doctors rooms. Remember that there will be a day when you won't be able to get out of that chair to walk, hobble, or be hauled around an obstacle. Only sign for it when you are satisfied that it can get you where you want to go.

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