The spouse of a patient with a rare degenerative disease fears the effects of a second confinement on the health of his wife who will not be able to receive her physiotherapy treatments.
“When she was doing physio, the disease seemed more stable. We didn’t see any improvements, but at least it wasn’t getting too much worse. But since [le confinement], we see that she loses some, ”drops Normand Gagné, speaking of his wife Micheline Robillard, who suffers from progressive supranuclear palsy (PSP).
Ms. Robillard is far from the only one in this situation, so much so that the CHUM, which has a research center on PSP, decided to organize an online event at the end of October to teach patients and their loved ones a program. home exercises.
“Patients have experienced an increase in their anxiety, symptoms of depression, since they had less contact. […] Physiotherapists play an extremely important role, since there is still no treatment, ”explains CHUM neurologist Antoine Duquette.
An initiative that will help the caregiver and his wife, both aged 63. She began to experience the first symptoms of this disease, which only affects around 500 Quebecers.
“Over the past few months, Mimi has started to have more difficulty using her hands to eat. There were also worsening of the balance. She has a lot of trouble with her eye movements, ”summarizes her husband.
Since she is among those at risk of developing complications from COVID-19, the couple decided it was best to confine themselves and cut virtually all physical contact with others.
“She also has a higher risk factor for pneumonia, which is linked to the virus. We cannot take a risk, argues Mr. Gagné, specifying that it could be fatal for his wife. It makes me super vigilant. “
For the two lovers for nearly 40 years, one of the biggest “sacrifices” has been hardly ever seeing their three children and their granddaughter born less than a year ago.
“Since March, we’ve seen them four or five times, and it was with two compulsory meters, the mask, and all that. Making decisions like that is difficult, it breaks your heart, ”admits Normand Gagné, who expects the next few weeks between now and Christmas to be difficult on morale, with the arrival of the fall weather.
” Day by day “
“Right now it’s okay, but I’m not telling you it’s going to be the same in two weeks.” I take it day by day, ”argues the caregiver, saying he wants to“ do everything ”so that his wife has the best possible quality of life despite the second confinement.
“She told me she wanted to stay with us until the very end. […] We still hope that a treatment will be developed by then, ”says Gagné.
However, if the pandemic has had adverse effects on patients with PSP, it will also have had an impact on research to better understand this disease, which is similar to a mix between Alzheimer’s and Parkinson’s, lamented Dr. Duquette.