Hockey, powerchair football, swimming and freediving. What do these sports have in common? They can be practiced by people with spinal muscular atrophy (SMA), a rare genetic disease that mainly affects children, causing the progressive loss of motor skills and making daily gestures difficult, such as sitting and standing, and, in severe cases, swallow and breathe. Because, with the necessary precautions and perhaps with the help of some devices, even with SMA it is possible to play sports, especially in the less severe forms of the disease that allow you to remain seated or walk. With all the resulting benefits: moving helps in social relationships, improves the impact of therapies and allows you to intervene on complications such as scoliosis and joint contractures. This and the new therapeutic approaches will be discussed in the next appointment with SMAspace (the cycle of meetings created by the Rare Diseases Observatory and SMA Families), scheduled for Saturday 2 July starting at 11.30 at the Congress Center of the Santa Lucia Foundation in Rome. .
Each type of SMA has its own sport
The type of SMA they suffer from decides which sport is most suitable for each patient. “SMAs 1, 2 and 3 have the particularity of having the same genetic expression but totally different clinical manifestations, almost as if they were three different diseases”, explains a Salute Nicola Forcinatherapist of the neuro and psychomotricity of the developmental age of the NeMo Clinical Center in Rome, who will take part in the SMAspace meeting: “Even within the same subgroup there can be great differences in the way in which the disease develops and, consequently , in the patient’s approach to sporting activity “.
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In general, for those suffering from SMA 2 and therefore able to maintain an autonomous sitting position in a wheelchair, the most suitable sports are freediving, hockey and powerchair football, football on an electronic wheelchair with foot protectors, in where two teams made up of 4 players attack, defend and kick a ball to score the most goals. For patients with milder forms of SMA 3, who stand and walk often, swimming is the most suitable sporting practice.
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What about SMA 1, the most severe form affecting about half of patients? “For them it is still very difficult to approach sport – continues Forcina – But in recent years, the advent of new therapies has radically changed the natural history of this disease. Today we have some patients who with SMA 1 reach the sitting position, an unthinkable result until recently, which significantly changes their expectation and quality of life. In a few years, perhaps, you will even be able to see them swimming. It is also a great bet for us clinicians “.
Stretching suitable for all SMAs
Whatever the type of spinal muscular atrophy, certainly doing stretching exercises with the help of a physical therapist or caregiver is the best way to prevent joints from becoming completely stiff. “Stretching can and must be done in all forms of the disease, because it helps to reduce joint retractions due to atrophy from not using the muscle, and therefore – underlines the expert – to promote joint functionality. Also in this case, the different motor and respiratory abilities of the patients must be taken into account in the choice of exercises. In SMA 1, for example, the movements pay close attention to the respiratory muscles, in type 2 to the four joint districts, especially the motor function of the arms and hands, which are essential for driving the wheelchair with the joystick. And finally in the forms 3 to the lower limbs, especially to the ankle joint, that of the ankle that allows you to walk correctly. The recommended weekly frequency in performing these exercises ranges from two to five times, depending on the form of the disease “.
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Then there is also a whole series of active and passive exercises that aim to stimulate the neuropsychomotor growth of patients. For example: supine movements to aid active limb mobility in SMA 1 patients; exercises with special braces to promote a static upright position in those suffering from SMA 2; sensory and coordination activities of the two sides, that is, of the right and left side of the body, in those who live with SMA 3.
Few virtuous regions
Often, for patients, the real limitation in playing sports is where they live. “Almost all young people have a passion for sport and would like to play hockey or wheelchair football, but in many regions it is not possible – explains Forcina – Among the most virtuous, there are Lazio, which has several hockey teams and football, Lombardy and recently also Puglia. And where there are no possibilities of this type, some young people, supported by their families, try to create them by making contact with local sports associations ”. Usually, you start playing from 12 or 13 years and, if the conditions of the disease allow it, you continue without age limits. Teams are not only made up of people living with SMA, but also wheelchair users with other disabilities, such as cerebral palsy or muscular dystrophy.
The appointment with SMAspace and with the quadrangular of powerchair football
Families and caregivers will be able to share their experiences, ask questions and clarify doubts at the next SMAspace. Together with Nicola Forcina, there will also be Beatrice Berti, child neuropsychiatrist of the NeMo Clinical Center in Rome. It will also be an opportunity to attend the #SMAspaceCup, a quadrangular mini tournament of powerchair football that will see the OltreSport teams of Bari, ASD Liberi di Sognare of Naples, Thunder of Rome and Black Lions of Venice compete in three 40-minute matches. The event can be followed in person by sending an accreditation request to accrediti@ Osservatoriomalattierare.it or remotely by connecting here.