Patrick was eight years old when he was diagnosed with Friedreich's ataxia (see box). This incurable genetic disorder causes, among other things, a decline in motor skills. Speech and swallowing difficulties are also common. "Even in kindergarten, my teachers noticed that I couldn't move as well as my classmates and walked unsteadily. But that wasn't all: I also had difficulties with fine motor skills – for example, with drawing, cutting, and later, writing." Despite this, Patrick attended a mainstream school for the first few years. Unfortunately, his condition worsened: Patrick's ability to walk deteriorated, and he soon became wheelchair-bound. He also suffered from spasticity, which made his movements uncontrollable. From the fifth grade onward, he lived during the week in a residential school for children with physical disabilities, where he received specialized support such as physiotherapy, occupational therapy, and speech therapy.
Apprenticeship completion with the help of cannabis
After finishing secondary school, Patrick began an apprenticeship as a media technician, which he thoroughly enjoyed. But due to his illness, the apprenticeship was a major challenge: "Friedreich's ataxia drains me; it robs me of a lot of energy. You can imagine it's similar to a healthy person who's been hit with a really bad case of the flu. Your batteries are empty, you feel weak—it's a constant state." And the worst part is: there are no approved medications for Patrick's condition. Fellow apprentices suggested he try cannabis. "I told myself: what do I have to lose?" And indeed, after a few attempts, Patrick noticed his condition improving. Mentally, but especially physically: he could control his movements better, was less restless, and his spasticity decreased. His scoliosis—a lateral curvature of the spine from its longitudinal axis—also improved, because he had more energy to stand upright. Because of these positive effects, he increased his consumption. About a year after his first attempt, he was smoking cannabis daily. “After my second year of apprenticeship, I was close to quitting. Cannabis use gave me the energy I needed to persevere. In the end, I successfully completed my apprenticeship,” to control the amount more precisely and eliminates the need for tobacco.
Life is impossible without cannabis
When Patrick had to be admitted to Inselspital Bern for a few days due to a vitamin B3 (niacin) overdose, the doctors ordered him to stop using cannabis. This had devastating effects: "After just a few hours without cannabis, my spasticity increased again, while my energy level plummeted." After his hospital stay, he initially used CBD products, which at least allowed him to feel his feet again – they had been numb as a result of the vitamin overdose.
At least one positive aspect of his hospital stay came out of it: Patrick confided in his case manager at Inselspital that he was self-medicating with cannabis. She then recommended the Association . Since then, Patrick has attended several patient meetings in Bern – and he also appreciates the online patient meetings . "It's very complicated for me to get to Bern. I have to register myself, my wheelchair, and my Swiss-Trac® – my electric wheelchair traction device – with the public transport company by phone, and then the Swiss Federal Railways (SBB) arranges for an employee to pick me up and accompany me at Bern station. It takes a lot of energy every time. It's great that the online patient meetings have been available since the coronavirus pandemic." Patrick values the exchange with people who, like him, are using cannabis for self-medication. And it does him good to know that he's not alone with his problems. He has a specific demand for politicians: "Cannabis use should finally be legalized for patients like me." It's incredibly exhausting to have to fight against prejudice every time and explain why I use cannabis for therapy. If I had a doctor's prescription, the acceptance would be greater from the start.
A vivid dream
Due to his illness, Patrick can no longer work, and since he lives alone, he also relies on daily support from home care services. When he feels well enough, Patrick enjoys photographing people, animals, and plants, as well as architecture. His dream is to one day exhibit his pictures in a gallery. He also longs for more social contact, as his illness is increasingly isolating him. "It would be wonderful to get my high school diploma and go to university. Who knows, maybe cannabis will give me the necessary motivation? Without it, that's for sure, it won't be possible."
Get to know Patrick better on his website: bachpat
