Patrick was eight years old when he was diagnosed with Friedreich's ataxia (see box). An incurable genetic defect that, among other things, causes those affected to lose their motor skills. Difficulties speaking and swallowing are also common. «Even in kindergarten, my teachers noticed that I couldn't move as well as my classmates and that I walked unsteadily. But that's not all: I also had difficulties with fine motor skills - for example when painting, cutting and later writing." Nevertheless, Patrick attends a regular school for the first few years of school. Unfortunately, his condition worsens: Patrick's ability to walk becomes increasingly difficult and he soon has to rely on a wheelchair. And he is plagued by spasticity that makes his movements uncontrollable. From the 5th grade onwards he lives during the week in a school home for physically impaired children, where he receives special support such as physiotherapy, occupational therapy and speech therapy.
Apprenticeship completion using cannabis
After completing secondary school, Patrick begins training as a media specialist, which he really enjoys. But because of his illness, teaching is a big challenge: “Friedreich’s ataxia drains me, it robs me of a lot of strength. You can imagine this in a similar way to a healthy person who has a really bad case of the flu. The batteries are empty, you feel weak – a constant state.” And the bad thing is: There are no approved medications for Patrick's illness. Fellow learners gave him the tip to try cannabis. “I said to myself: What do I have to lose?” And after a few attempts, Patrick actually notices how his condition is improving. Mentally, but above all physically: he can control his movements better, is less erratic, and his spasticity is decreasing. And his scoliosis on his back – a sideways deviation of the spine from the longitudinal axis – is also improving because he has more energy to keep himself upright. Due to these positive effects, it increases consumption. About a year after his first attempt, he smokes cannabis every day. «After the second year of training, I was about to stop training. Cannabis use gave me the energy I needed to persevere. “I finally completed my apprenticeship successfully ,” remembers Patrick. Today he vaporizes his cannabis - especially because he dose and no tobacco is necessary.
No life is possible without cannabis
When Patrick has to go to the Inselspital Bern for a few days because of an overdose of vitamin B3 (niacin), the doctors order him to stop using cannabis. With devastating effects: “After just a few hours without cannabis, my spasticity increased again, while my energy level fell.” After his hospital stay, he first started taking CBD products, which at least enabled him to feel his feet again - which had been numb as a result of the vitamin overdose.
There is at least one good thing about his hospital stay: Patrick confides in his “case manager” at the Inselspital that he is treating himself with cannabis. She then recommends the Association MEDCAN to him. patient meetings in Bern a few times he also appreciates the online patient meetings «It is very complicated for me to come to Bern. I have to register myself, my wheelchair and my Swiss-Trac® – my electric wheelchair traction device – with public transport by telephone and the SBB then ensures that an employee picks me up and accompanies me at Bern train station. That costs me energy every time. It's nice that online patient meetings have existed since the Corona epidemic." Patrick values the exchange with people who, like himself, treat themselves with cannabis. And it's good for him to know that he's not alone with his problems. He has a specific demand for politicians: “Cannabis consumption should finally become legal for sick people like me. It's incredibly stressful to have to fight against prejudices every time and explain why I'm treating myself with cannabis. If I had a doctor's prescription, acceptance would be greater right from the start."
A vivid dream
Due to his illness, Patrick can no longer work and since he lives alone, he is also dependent on Spitex's daily support. When he feels fit enough, Patrick enjoys photographing people, animals and plants, but also architecture. His dream is to one day be able to exhibit his pictures in a gallery. And he would like to have more social contacts because the illness is increasingly isolating him. “It would be nice to graduate and study. Who knows, maybe cannabis will give me the drive I need? Without it, and that’s for sure, it won’t work.”
Get to know Patrick better on his website: bachpat
