Some tips to stay mobile
For ALS patients excercises have the goal to maintain strength or reinforce muscles which aren’t affected and to maintain the flexibility of affected muscles. It’s important to realize excercises won’t strengthen the muscles that are already weakened by ALS. Once the motoric neurons which control a certain muscle have degenerated, they can’t regenerate by excercises or anything else. The right excercise schedule can however reduce the stiffness of joints and muscles to a minimum.
A patient with ALS has to submit every affected joint to a series of movement amplitude excercises to avoid stiffness every day. Excercises can keep the body as flexible as possible and keep the joints mobile.
Movement amplitude excercises are usually executed systematically: the joints of a member are excercised in a certain order before the next member has its turn and so on.
It’s very important every ALS patient needs an excercise program that is adapted to his or her individual needs and possibilities.
Moderation during excercising
All excercises need to be performed with moderation. Exhaustion and pain can always be avoided and, when prevalent, can be mentioned to the therapist so necessary adaptations can be made.
Recreational excercises
When one has fun walking, cycling on the hometrainer or swimming, this should continue as long as it’s safe to do so.
Active, active supported and passive excercises
An “active” excercise is an excercise one performs all by himself without any help. The muscles are capable of performing the entire excercise. However, not every ALS patient can maintain a full program of active excercises.
Muscles that can only move a joint partially are excercised through “active supported” activity. A helper can help the muscle throughout the movement or he can show a way to still get the movement reach on own support.
“Passive” excercises are executed fully by a helper when certain muscles aren’t capable of making any movement anymore whatsoever. The helper moves the joints through their movement reach by manipulating the members. Passive excercises make the joints work, but not the muscles. Help from a therapist can be useful here as well.
Some excercising tips
- Excercises should be performed daily and routinely. The excercise routine can be split up to avoid exhaustion.
- Excercises have to be performed actively as much as possible. In a later stage it could be necessary to switch to active supported or passive excercises. The therapist can help to register the right excercising limits.
- When the day will be a busy one, the therapist can say which excercises are important now.
- Some excercises can be performed sitting or laying. Passive excercises are usually performed laying. The therapist can advise which excercise positions are best here as well.
- Each excercise that causes pain or exhaustion has to be interrupted immeadiately.
Attitude with ALS
When the muscles that are responsible for the attitude weaken, inconveniences can occur in the lower back, neck and shoulder region. Special pillows, seatbacks, lumbal (lower back) and cervical (neck) support roles are available to maintain a correct sitting attitude. It can be necessary the ALS patients leans back a little when sitting back or wears a collar to maintain the right attitude. The therapist can help here as well when choosing the right tools.
Tools for doing hard excercises
Adapted tools
A lot of people with ALS have trouble with grabbing and manipulating objects. It’s often possible to adapt daily tools or to replace them by specially designed versions to compensate for the muscle weakness in fingers, hands and wrists. For instance, cutlery with extra thick grips can facilitate eating a lot. There’s cutlery with thick, long grips that compensates a limited shoulder movement to a certain extent.
There are cups with big ears ALS patients can put al their fingers trough, which diminishes the danger of spilling. An edge on a plate can give a little vertical barrier to a plate so the food can be shoved on a spoon or a fork more easily. The grabbing and turning of a door knob is a double movement which can deliver problems. This can be improved with a doorknob lengthener by which the door can be opened by pressing this lever down or pulling it up. A thick wooden or plastic grip that’s attached to the doorkey can help with turning the key in the lock. Thick pens or pencils can be held more easily than the usual thin ones; a writing aid exists out of a little block in which the pen or pencil can be pinned.
Ziplines of clothing can be difficult to operate sometimes when hands and fingers are weak. There are helping tools for buttoning. Velcro is a popular replacement for both buttons and zips. Best of all are pullovers and pants or skirts with an elastic band, which don’t have any ziplines at all.
Adaptations to radio, light and television switches give an ALS patient the possibility to turn those things on and off with the palm of the hand, a motion with the head or even by blowing. Handsfree phones are convenient as well.
It’s important to talk over every tool with the ergotherapist before making a purchase so disappointments and costly mistakes can be avoided.
Ortheses
These are tools that can be attached to the body. They keep the joints in a certain position when the muscles aren’t able to do this anymore.
Ortheses are usually prescribed by a doctor and the therapist will make the necessary adaptions and teach the right usage of them.
The “Universal holder” is probably the most familiar orthesis. It’s being attached to the hand with duct tape, making it possible to hold cutlery, a brush and other small objects. A thumb splint helps to press the fingers and the thumb apart from eachother and can improve a weakened grip this way. A longer splint can stabilize and keep thumb and fingers apart too, so the object can be grabbed and held more easily.
A lot of people with ALS have to deal with “dropped foot”, causing them to trip. The solution can be a simple anklefoot splint made out of plastic that doesn’t stand out beneath long pants. They are being prescribed by a doctor.
Canes and walking frames
There are different types of canes on the market, with single or multiple support points, for ALS patients with one weak leg. By relieving the weakened side somewhat, a cane can help prevent falling. The choice of a cane needs to be made after consulting the doctor and the physical therapist. When someone is weak in both legs but still has enough strength in the upper body, a walking frame (rollator) is probably advised. This spreads the bodyweight over a large surface, which insures the user of great stability.
Wheelchairs
At some point a lot of people with ALS will need a wheelchair. Some will only use it for long trips out of the house, others will only use it for certain activities and even others will spend the major part of the day in a wheelchair.
The decision to have a wheelchair always happens after consulting a doctor. A wheelchair should be seen as an opportunity to enlarge the independence, to get everywhere and mostly to save up on energy.
Wheelchairs exist in all sizes and models. It has to be a good fit and be adapted to the lifestyle of the ALS patient.
There are manual and electric wheelchairs, chairs with removable arms or lappieces and wheelchairs which can be folded to be put in a trunk. It is of outmost importance to choose the right chair. Many factors need to be considered: the physical condition now and in the future, the financial situation and the possible financial support, the amount of help by family and friends. A wheelchair is an important purchase, which can improve the life of an ALS patient now and in the future: that’s why it has to be picked carefully.
Wheelchair user need driving lanes causing the existence of bumps in the house. It can also be necessary to move furniture.
To get from the wheelchair in bath, bed, car or the toilet and the other way around, help of other people is always needed. Those moves have to happen carefully, avoiding the patient to fall. The therapist can help training the right moving methods.
When getting in and out of the wheelchair it is of great importance the breaks are on and the feet supports are out of the way.
Patient lifts
These are devices to move people with ALS from the wheelchair to bed, toilet or bath. They are useful when the patient is heavy or the helper isn’t that strong. The lift lifts the patient in a lifting noose so the helper can move him or her.
How to cope with problems?
Falling
When falling occurs, first of all someone with ALS should be put up straight. The help that’s necessary will depend on the degree of muscle weakness. Some only need a little help to stand straight. Others have to be lifted from behind until they can press with their feet against the floor. Even others will need two people to put them back on a chair or in a wheelchair. It’s important that helpers don’t overtaxate themselves but make the ALS patient comfortable until sufficient help is available.
Muscle cramps
Such cramps aren’t unusual with people with ALS. They can be lightened somewhat by keeping the struck muscle warm or by stretching or let them be stretched until the pain is softened. Serious and frequent cramps need to be talked over with the doctor, so the appropiate cure can be prescribed.
Joint and muscle pains
The earlier described movement amplitude excercises were developed in prevention of the joint pain that comes from stiffness caused by lack of excercise. Careful attention for the excercise program, albeit active or passive, will eliminate a lot of potential joint pains. Weakened arms without support can lead to pain in the shoulder joint. So it’s useful to support weakened arms on pillows, arm supports or on the table. A shoulder carrying bandage will also give the arm some support and diminish the shoulder taxation when walking. Hip pain can come from sitting over prolonged periods of time in a worn out seat or chair. A solid sitting position on the usual chair or wheelchair will lighten the taxation of the hip joint. It is of very great importance to change the attitude of someone with ALS multiple times a day and night. Some people with ALS improve their sleeping comfort with sheepfur, a foam mat by using egg carton, a satin sheet or a vibrating air matress.
