Physiotherapy and physical therapy for pALS

The beginning

Before they are diagnosed with ALS, patients are often in therapy with a physiotherapist because of neck, shoulder or lower back complaints, complaints of hip and leg muscles or a loss of power in the arms.

In the first place, the body reacts positively to the massages, the exercises and the physiotherapeutic applications such as heat or diadynamic power. However, after a few treatments, the impact is less than hoped for and the patient is sent to a neurologist.

The first phase

When finally a diagnosis is set, the therapist has to start over with physiotherapeutic treatment. He/she tells the pALS about the new start.

It’s important to communicate about the development that can be expected, both with the patient and with the team of therapists. Building up experience, exchanging data and approaching the patient and his/her environment with clear language, are some of the advantages of such a team.

The role of physiotherapy changes drastically. The first concern is to maintain the existing muscle power of the patient in order to remain ambulatory as long as possible.

The frequency of the treatments is related to the physical capacity of the patient, usually two or three times a week. As it’s important to dose the effort and to incorporate breaks, each session takes about an hour.

The location of the treatment depends on the possibilities of the patient. If the therapy in a rehabilitation centre causes more troubles then advantages, there has to be switched to a treatment at home.

In this phase, the therapy consists of maintaining the existing muscle power using certain movements. The breaks are moments where the limits of the patient’s ability are brought up. It’s important to share these limits with the physiotherapist, so he/she can respond to it, respecting the mutual agreements of the ALS team.

Deterioration of the muscle power

First aid tools and support

In course of time, the muscle power deteriorates. The walking pattern, the posture while sitting and the execution of the activities of the upper limbs will make that clear.

When the walking pattern deteriorates (quickly tired, a sticking foot, less stable walking, etc.), the physiotherapist discusses and advises walking tools such as walking-canes, crutches and rollators.

When the sitting posture deteriorates, the patient learns how to adjust his chair: the angle of inclination of the seat and the back, the height, etc. At this moment, speech therapy can be offered to the patient.

When the loss of power occurs in the upper limbs, the patient will be told to push objects instead of lifting them. In this phase, ergotherapy will be discussed.

The use of aid tools will be discussed after the wheelchair phase.

Active exercises

After a lot of research, there is still no prove that active exercises change the course of the disease. When the patient loses another function group – when the foot and the ankle get weak, for example, making it impossible to walk normally – a strict exercise regime is even less efficient...

The patient decides if he/she wants to follow a strict exercise program or not. If the patient likes the exercises and they make him/her feeling better, a strict program is acceptable, as long as it happens in a safe way and doesn’t cause joint pain. Even if the patient likes exercising, he/she better splits his/her energy between the exercises and other things he/she likes to do.

If the patient prefers not to do the exercises, he/she cannot be forced. The decision lies with the patient and not the physiotherapist.

The wheelchair phase

Despite aid tools and health care, the moment where the patient won’t succeed to remain ambulatory and self-sufficient, will eventually come. The wheelchair phase begins.

In this transitional phase, the patient tries to use the remaining muscle power to do daily activities which otherwise would be done with his/her partner or social worker, such as the transfer from wheelchair to bed or toilet. This means the patient has to save his strength by spreading the moments that require strength. His/her partner and family are taught in advance about the lifting and moving of the patient. The objective is double: preventing back complaints and providing aid.

Joint pains and passive exercises

Passive exercises are different; they are used when paralysis has already occurred, with hardness and stiffness in the muscles and the joints. An every day program to move the joints and stretch the muscles, can increase the patients comfort and maintain movement ability in the joints. This promotes sitting and hygiene and is necessary to avoid joint pains.

Let’s focus on joint pain. The three most affected joints are the shoulders, neck and lower back, in this order. Our joints need the support of our muscles in order to remain in the right position.

The shoulder is the most interesting example, because the shoulder muscles keep the head of the arm in the shoulder cavity. When the muscle weakens, the joint sinks in and causes a cavity on top of the shoulder, or the joint can be overstretched. Then scar tissue appears, muscles harden and the joint stiffens.

Every physiotherapist has the necessary experience to do something about it using joint mobilisation. This includes the stretching of the soft tissue to break down the scar tissue and electrotherapy. Doctors can treat the patient with a variety of possibilities, going from anti-inflammatory agents to cortisone injections. Usually the patient won’t be operated.

This treatment, including immobilisation, stretching and electrotherapy of the neck, can be applied to neck pain.

Be careful with a neck brace, it can hinder the ability to swallow.

A lot can be done to prevent joint pain. The physiotherapist will be considerate in his treatment and carefully move the pALS.

The same thing applies to other social workers. When someone needs help to get up or to change position in bed, be careful and never pull at the arms.

The patient must try to hold the back and the neck as straight as possible when he/she changes position. When lying in bed or sitting in a chair, make sure the patient is not turned or stretched. When getting dressed, the patient may never force a joint into an unnatural position. Pain is a helpful signal and has to be taken into consideration. The inconvenience with muscle and skeleton problems comes from the way of moving. Very often, the hardness of the muscles causes inconvenience; this can be relieved with physiotherapy, by moving and stretching, but also with medicines. The prescription must happen in consultation between physiotherapist and doctor.

When the joints remain in a certain position for too long, this causes inconvenience. Pressure on the skin can also give you the feeling to be stuck.

More about aid tools

Most physiotherapists devote a lot of time to the search of appropriate aid tools. Usually, this happens in consultation with the ergotherapist. The tools have to be at the patients disposal as quick as possible: if you have walking problems and you need something to remain stable, it’s best to have access to the appropriate aid tool immediately. The physiotherapist can make an aid tool plan in advance.

Usually, the first aid tools help the patient with his walking problems. This can go from a simple ankle splint, crutches to a rollator or a complex wheelchair.

The physiotherapist and the ergotherapist talk with the ALS patient and the care providers about these aid tools to find out what the patients needs are and what his/her lifestyle is, in order to find the most suitable solution.

When choosing a wheelchair, it’s important to be able to adjust the right sitting posture: the length of the chair can be adjusted to the length of the legs, the backrest can be set in the right position in order to uphold the spinal column, and the patient can take a good ‘swallow and communicate’ position.

Pressure pads are necessary. When the patient sits down for a long time, the skin can use some relaxing.

A mobile bed with adjustable height is important for the social worker. You can choose a bed of which the back can simply move by pressing a button. Why waste the patients energy with something that can be easily solved? Why would he let other people help him when he can help himself?

Tools as sliding sheets and bed sticks should be demonstrated and tested.

When buying a couch, you should pay attention to its height: it’s difficult to get up from a low couch when you have muscle weakness or balance problems.

You should pay attention to the backrest of a chair. You can do all the necessary things to protect your joints, but only by sitting in your chair for a few hours when resting or watching TV, you can develop a painful back.

A lot of different hoists are available. Hoists are used when a patient becomes unable to carry his own weight. It’s difficult for the health provider to lift the patient, and it’s uncomfortable for the patient himself. The risk of joint damage increases, just as the risk of shoulder injuries and the stretching of the back. The ergotherapist and the physiotherapist will help you to choose the hoist with which you feel comfortable and safe. They can show you how to use it.

The bed phase

In this phase, the patient needs more and more bed rest. The therapy will help the patient to get in and out the bed independently and learn the patient how to prevent bedsores. The bed and the environment may need some changes and the hoisting activities of the partner have to be exercised and controlled.

The respiration

For patients with respiratory problems, the use of oxygen supply during the night has to be considered. For the patient, this is a difficult decision: on the one hand, he fears to become dependent of the oxygen tank and feels the end approaching; on the other hand, there is the suffocation fear that strikes at lonely moments at night. The doctor can help the patient with his choice.

In this stage, exercising is less important; above all, the physiotherapist will listen and empathise with the patient. Moving in a passive way (the physiotherapist escorts the movement) can have a soothing effect and help to stimulate the circulation.

Techniques to control the breathing by using the thorax, can be very helpful. These exercises are optional. If the patient has problems keeping his throat clear, or when some slime is stuck in his throat, the patient can panic. It can be useful to apply a slow, relieving breathing technique that the patient has learned at a moment he was calm. It’s important that the environment also knows how to use this technique.

When the patient has a panic attack, the physiotherapist will try to calm you: “You tell me you can’t breathe, but you are talking, which means you can breathe, because you can’t speak without breathing. Let’s slow down your respiration. Inhale on one and two, and then breathe out. Count slowly, put your hands on your shoulders, relax your shoulders and inhale deeply.” This things are really useful. It’s important for the social worker to know these techniques to be able to interfere and stop the panic attack.

Often, the disability to clear your throat gives some problems. Coughing is a mechanical process: you inhale deeply, then you breathe out in an explosive way, using all your muscles. It’s the explosive pressure that is difficult for ALS patients because the muscles of the midriff can’t contract properly. This can be difficult when the patient wants to clear his throat. But the patients’ environment can offer some help with this by placing the hand on the V under your patients’ ribs and push, this helps to clear the throat.

Pulmonary aspiration and inflammation also occur: you choke when something gets stuck in the windpipe, this can cause infections.

The physiotherapist uses standard techniques from the physiotherapy: laying down on one side, inhaling deeply, vibration, assisted coughing and sometimes tapping. There’s nothing magical about physiotherapy, you only have to think about doing it.

The closure

When the battle is fought, the “trailers” should support each other, a task often neglected because of the workload and other excuses. However, this is a point that should get a lot more attention within ALS teams. The practitioners notice a lot of appreciation from the trailers. And for the trailers, the interest after such a hectic period, helps to settle them down.