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!
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.
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 power wheelchair:
- When you limit your fluid intake because walking to the bathroom is so tiring and risky.
- When you pay outrageous prices for groceries at the Quick Mart because a trip through a real grocery store is so tiring you can barely make it back to your car.
- When you have to use the curb cut-outs anyway because a curb is a risky climb.
- When you regularly say you will just wait in the car or stay home because you know your family will have more fun if you are not along to slow them down or limit where they can go.
- The obvious: When you fall down even while wearing the ankle-foot orthosis (brace) made to keep you from tripping. If you fall while using a walker, it is a Red Alert to get a chair NOW. Get a wheelchair after the FIRST fall, not after the one that finally sends you to the ER! !
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 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 isn't true with Medicare. They have clamped down on approving scooters because they were being sold to people who didn't need them or actually needed a power wheelchair or would soon. The current rules say that you qualify for a scooter only if you can't perform activities of daily living like bathing, dressing, getting in or out of a bed or chair, or using the bathroom with the help of a cane, walker or manual wheelchair. If the reason stated for wanting a scooter is for use outside the home it will be denied as not medically necessary. 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.
All that said, a scooter is great for ALS patients with leg weakness rather than arm and trunk weakness. It may not work for more than a year or less but, if you can afford to buy a new or used one by yourself rather than through insurance, it is worth it if your progression is slow.
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 and knows the paperwork, physicians orders, and the insurance justification needed to get all the parts and add-ons. Hopefully, the therapist will work with a certified wheelchair specialist, not just a salesman.
Getting a power wheelchair that fits you, is adaptable to changes and add-ons in the future, and submitting paperwork that will get it covered by insurance/Medicare will take about four months so starting early is important. You can get a loaner chair from the MDA, ALSA or other equipment loan closets if you need it sooner but it is unlikely to get one that fits you. Loaners should be considered as temporary until you can get the paperwork and funding for your own chair.
Used Power Wheelchairs
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 used chair? If you are not eligible for Medicare or Medicaid nor have other insurance, a used chair can be an 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 process of getting a power wheelchair covered by insurance/Medicare begins with Paperwork. Lots of really nit-picky paperwork. The good news is that you are completely unqualified to fill out the paperwork! Get experienced help and get it done correctly to avoid denials that will take months to work out. If you have an MDA or ALSA Clinic in your area, they have the staff to do all the paperwork for you, do it correctly, and get the right chair for you with minimal delays in an already lengthy process. Just look in the phonebook or online and call them and tell them you have ALS and need a power wheelchair. If you don't have access to a clinic, inquire at nearby hospitals for a Physical Therapist experienced in getting power wheelchairs approved.
- A diagnosis of ALS isn't sufficient to get insurance coverage for a power chair, though it may grease the wheels a bit. You will need to show that you have progressed to needing a power chair. Medicare especially wants a paper trail of documentation in your medical record that your ability to walk is decreasing over time. Doctor's notes about progression from AFO's (ankle/foot orthotics for footdrop) to walker, decreasing distance walked before losing strength or breathing ability, balance problems, and falls will make getting approval easier.
- A face to face evaluation with a physician is required. This cannot be with a nurse or therapist. The more specific the evaluation and his notes are, the better, especially if you don't have a paper trail. The doctor will not write the order for the chair at this point. Instead, it will be an order to have a wheelchair evaluation by a Physical Therapist to determine the type of chair and equipment on it you need.
- When you see the physical therapist there may be a wheelchair seating specialist present as well. If you go through the MDA or ALSA Clinic, this more likely. The evaluation will include measuring you to get the chair custom made to fit you, arm and trunk strength and other things you never considered. The opportunity to test drive a number of chairs, brands, and drive types is generally limited. Ideally, there will be a home visit as well to see the space you have, doorway widths, obstacles, etc.
- The therapist will also help you check to see what wheelchair sales company your insurance/Medicare requires you to get your chair through. For Medicare, this has to be a Medicare DME (Durable Medical Equipment) provider. 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.
- If someone from the vendor (the company you will be buying the chair through) isn't at the Physical Therapists evaluation, you will need to meet with them to go over the evaluation, make their suggestions, and decide what brand(s) of chair to recommend. You can have any brand that has the features you need now and in the future. The only option you are informed enough to make on your own is the color. That is pretty much the color of the fenders since the rest will be black!
- With input from the vendor, the therapist will complete the forms to justify your need for a power chair and all the add-ons (tilt, recline, etc.) Knowing the right codes and buzz words to use is critical in the process of getting your chair. Errors or omissions will delay insurance approval by a couple of months.
- Is that the end of the paperwork? No, the paperwork now hits the road, traveling around to get signatures and approval. Next, the paperwork must be signed off on by the durable medical equipment provider (vendor) who will order the chair from the manufacturer.
- The order won't be sent, however, until a physician also signs the papers. Then they go back to the therapist or vendor to be sent to Medicare/insurance company.
- The chair won't be ordered from the manufacturer until Medicare/insurance approval is received by the vendor.
- 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. Then turn your pestiness on the vendor to find out if the order has been approved by your insurance/Medicare. The approval time can take a month or more. Any mistakes in the paperwork or missing signatures will delay things more. Once you are told that the approval has been received, you are close to getting your chair. Because each chair has to custom assembled for size and add-ons, manufacturers don't have a stockpile of fully assembled chairs for quick delivery. Even so, assembling your chair takes a fraction of the time spent on the paperwork!
- 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.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.
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!
- 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. If the chair has a seat cushion, it should be removable in order to use a good quality pressure relief cushion. Every ALS patient's chair should have a pressure relief cushion when they get their chair. If it isn't automatically included in parts list for the chair, your therapist/vendor is not qualified to deal with ALS patients. The best options are a ROHO air cushion or a gel cushion. It is covered by insurance and Medicare.
- Total Chair Width
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 at least an inch 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.
- Space for a Ventilator
Consider how a Bi-PAP, Trilogy or other 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 this equipment, especially if it has to be inside a metal carrier or on a shelf attachment, will make the chair considerably , longer and less able to maneuver in tight spots.
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.
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 cobblestones!
- Elevated Seat Lift
A power lift seat will not be covered by Medicare and costs about $2,000. 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.
- 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. When ALS is progressing rapidly, the money spent on elevation or standing features may be better spent on an overhead lift system.
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.
- Attendant Controls
Attendant controls allow someone else to drive the chair and can be added later on. Controllers are available that can be switched back and forth between rider or attendant to drive. Attendant controls are usually mounted on the back of the chair. Your existing joystick can be moved to the back by your wheelchair provider to save money. That means an attendant cannot hold a door open while driving you through. Simple solution: Buy a rubber doorstop and keep it on your chair. Attendant controls require more practice than a joystick on the armrest
- Rear, Mid, or Front Wheel Drive
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.
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.
- A rear wheel drive is 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 lawns, light 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 and turns corners intuitively making it easy to drive.
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 leg rests and foot plates bash walls, scratch furniture, and inflict great pain on any ankles that get in the way! 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.
If the jerking problem isn't severe, 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.
- 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.
- 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.