As a caregiver, there are steps you can take to make your client’s life more comfortable and manageable.
Spasticity is a reality in the lives of more than two thirds of people with spinal cord injuries (SCI), and is more common when neck and upper chest-level injuries have occurred. Think of it like this: the spinal cord nerves are like a bundle of telephone cables that communicate messages between the body and the brain. Some of the nerves take messages from the body to the brain and other nerves take messages in reverse. When we want to move, the brain sends a message down the spinal cord telling the muscles what to do. If the spinal cord is damaged, these messages cannot be sent.
So if the brain can no longer communicate with the muscles, what do they do? Like naughty children, they do what they like.
They can cause a general stiffening of the entire body or, if some muscles are stronger than others, they can pull the body into abnormal positions. Without the brain’s guidance, muscles sometimes start contracting and relaxing rapidly, causing an arm or a leg to shake uncontrollably. (We call this clonus.) Or muscle bundles gradually become tighter and tighter until they are too tight to contract any further. Then the muscles let go with force, causing an intense jerking movement (known as myoclonic jerks).
Spasticity is, clearly, not a pleasant thing to endure. But as persons with spasticity and their caregivers start to understand it, they get to know what causes these spasms as well as how to manage them. And in many cases they can reach a modus vivendi that can make life relatively comfortable.
I discussed this with Riona Rajkaran, a physiotherapist at the Spinal Unit at the Netcare Rehabilitation Hospital, who had some very useful tips on how to manage these spasms, so that the spasticity becomes more bearable. There are even ways in which we can make spasticity work in our favour.
First, you need to understand how much tone is normal for your client (the person you are caring for) and investigate possible triggers when there is an increase in the amount of tone. The things that trigger spasms, clonus or myoclonic jerks can be as simple as moving a limb or stretching a muscle or just being in the same position for a long time. But these spasms are often also a sign of something amiss in your body – a bedsore, an ingrown toenail, clothes that are too tight, and so on. In the absence of pain sensation (which is often the case in SCI) spasms or jerks may be set off by contact with something very hot or cold – acting in a protective manner. You should also check when last the bladder was emptied or if there is a need for a bowel motion, since a full bladder or constipation can also trigger spasms or jerks.
What else can you as caregiver do to help make life more bearable for your client? In general, you should not try to break a spasm. If possible, allow it to pass before trying to move your client. The way to break a spasm may be as simple as just moving the limb gently and slowly into a more comfortable position. This helps especially for clonus and for ongoing myoclonic jerks. For sustained spasms, gentle but firm pressure on the area in spasm together with a gentle, slow, sustained pulling of the limb or trunk away from the direction of the spasm will often break it. But do not use rapid, jerking, pulling or pushing actions, which could easily trigger further spasm.
During the day your client will most likely be in a wheelchair. Discomfort or any other trigger may cause spasms that can either pull the trunk forward, even to the point that they fall out of the chair, or it can pull on the back muscles, causing the shoulders to arch backward and the pelvis to slide forward. In both instances, gently but firmly push your client’s trunk in the opposite direction to help break the spasm. It may be necessary to strap the ankles, thighs and trunk of your client to the chair – but don’t do this while they are spasming.
If your client tends to get frequent and severe myoclonic jerks while seated in the wheelchair, further investigation is advised. Are the spasms caused by poor positioning in the wheelchair? If so, a seating assessment and adjustments need to be carried out by an experienced therapist.
Clonus is easier to manage; simply stroking the affected leg or arm with gentle but firm pressure while at the same time moving the limb into a different position will usually do the trick.
When transferring your client from the chair to bed or commode etc, be very mindful of spasms or clonus. Try to avoid moving them into a position that triggers spasms or clonus; but if this happens, get your client relaxed and comfortable before doing the transfer.
At night the best sleeping position is on the tummy. For people who are not used to this position, it is uncomfortable at first, but not only is it the best position to prevent bedsores, it is also the position that best relieves spasms. Try to aim for at least four hours a night on the tummy. In other sleeping positions the trick is to get the entire body into a comfortable, supported position that will allow your client to be the most relaxed without needing any effort to stay in that position. This includes careful positioning of the head and neck. As always, special care must be taken to ensure that potential pressure points are positioned in a way that prevents pressure sores. Make use of supports such as pillows at the back to prevent the person from rolling out of position.
Last thing at night and first thing in the morning are good opportunities to go through the range of passive movements of all the limbs to prevent the muscles from contracting.
The secret of good management of spasticity is to get to know what triggers spasms and how best to relieve them. I hope that these general guidelines will help caregivers a better understanding of what you are dealing with and how to help your clients to cope.
Ida’s Corner is a regular column by George Louw, who qualified as a medical doctor, but, due to a progressing spastic paralysis, he chose a career in health administration. The column is named after Ida Hlongwa, who worked as caregiver for Ari Seirlis for 20 years. Her charm, smile, commitment, quality care and sacrifice set the bar incredibly high for the caregiving fraternity.