Eight-year-old Aleksander has been rehabilitated all his life. He suffers from spinal muscular atrophy, so he truly needs physiotherapy. But at the same time, due to his disease, his parents haven’t decided to return to rehabilitation yet – as his, mother Wirginia Puchalska, tells us.
Before the coronavirus outbreak, we drove Aleksander for physiotherapy sessions 4-5 times a week. In March, we were stuck at home. At first we only performed the exercises that physiotherapists have taught us during all these years. Then we started online physiotherapy consultations – which we are still attending twice a week. Furthermore, we practice with our son for one hour, pionize him and massage every day. But we do miss normal meetings with physiotherapists. I am not sure if I am doing everything correctly or if it is just my impression that I am. I haven’t noticed any deterioration in my son’s functionality but this can be thoroughly evaluated only when all of this ends and he can be seen by a physiotherapist.
We think it is still too early for Aleksander to return to stationary rehabilitation, as the risk is too high. We fear that his respiratory muscles would not manage this disease. Even the smallest infections are much more serious for him. He is not strong enough to blow his nose or expectorate the phlegm. We need to use cough assistant to help him clean his airways. And we exercise his respiratory muscles every day, stimulating his chest to decompress and lungs to expand, which altogether makes breathing easier for him.
We are up to date with all information regarding the progression of pandemic and current threats. To be frank, we have no idea when we should return to physiotherapy. When asked, doctors are unable to give me a precise answer. It certainly needs to be done, since my son requires professional rehabilitation. But when – I really don’t know.