A significant challenge in living with ALS is the need to continuously adapt as the level of disability increases. ALS is different from other disabilities in this respect: someone with a spinal cord injury usually makes a few major adaptations over a short period and learn to embrace the "new normal".
Planning ahead is essential with ALS. Acquiring necessary adaptive equipment (and in some cases, the skills to use it) takes time. It is far better to receive a needed piece of equipment too early, than too late.
Planning for paralysis is a frequently used term; it refers to making larger decisions which are compatible with later stages of ALS when needs will be at their highest.
Some patients may end up needing to move to a different home in order to have suitable living arrangements. Since moving is a large undertaking, it makes sense to do it only once. As such, the new home should be suited to the later stages of living with ALS, as opposed to present-day needs, or what is perceived to be just around the corner. Otherwise, the patient may need to move again, and it could be at a point in their disease progression where doing so would be stressful and difficult.
"Plan for paralysis"
Significant adaptations or purchases should be made with later-stage disease progression needs in mind.
Part of adjusting to changing levels of ability involves making adaptations that may carry some degree of risk. While it is fully within the patient’s right to take such risks, it remains important to be realistic about their capabilities in order to prevent injury or other problems.
Tasks that have become significantly difficult to perform independently should be discontinued before they lead to an accident or injury, especially if significant adaptations have already been made.
I was gradually having a harder and harder time standing up and out of my bed. We had put the bed on top of deck blocks to help raise it, to make it easier for me to stand. This worked for a few months and didn't cost much money to do.
However, as time progressed, I was having greater and greater difficulty standing up from the bed. The mattress was soft, so when I pushed my hands down into it to help stand, I wouldn't get much force out of it.
One morning, seemingly out of nowhere, I could not summon the strength to stand up from the bed. I was stuck there, sitting up at the side of the bed, waiting for someone to come home so I could ask for help.
Fortunately, someone came by only a few minutes later. If it weren't for that, I would've spent all day there.
– Man diagnosed with ALS at age 38
Independence is fundamentally linked to a sense of dignity. Most people prefer to carry out daily tasks such as eating, bathing, and toileting without assistance.
One way to preserve dignity while coping with the loss of independence is to make the decision to accept help on one's own terms and timing. Choosing to seek assistance proactively can provide a sense of control, rather than waiting until a sudden decline forces a reactive adjustment. This intentional approach helps individuals maintain agency, even as their abilities change.
It can be possible to reduce the number of adaptations for intermediate stages of disability, by skipping ahead to more versatile equipment and techniques. Doing so can save money and mental burden, as there would be fewer adaptations to make and less equipment to buy. This principle is in line with the concept of planning for paralysis.
Using toileting as an example, consider the following stages of adaptation:
In this case, the wheeled commode, which will be needed eventually, can actually be used to cover all of these stages. Most models come with adjustable arms, and an adjustable height to suit the needs of the patient.
Eating is a significant part of the human experience, and is a fundamental component of culture. Since the risk of injury is minimal, it often makes sense to continue eating independently, using any reasonable adaptation, until it is no longer feasible. Such adaptations may be as follows:
Since independent eating has a strong connection to dignity for most people, investment in this area may be worthwhile. More expensive equipment, such as a robotic feeding machine may be rented since it is known it will likely not be used long-term.
Intermediate adaptations and equipment purchases can be skipped when doing so will save money or effort.