Angelique (51) has two injections of the Moderna vaccine in her body. In a few days she will be optimally protected against the corona virus. Yet normal life does not return to her.
“I’ve declared cuddling unnecessary,” she says on the phone. “I will soon be 94 percent protected, but I can still get it. It remains exciting. What will the virus do to me after vaccination, no one knows. I think I only need one push and then it’s done.”
Breathing is so difficult
Angelique has ALS, a disease that rapidly weakens her muscles, eventually causing her to be unable to breathe on her own and to die. Because of these respiratory problems, corona is seen as a danger and patients with ALS develop priority in vaccination (just like other people at medical risk).
“I talk to a lot of fellow sufferers, everyone remains fairly cautious now. In case of complaints, visitors stay away. Pub open again? I will not go beyond the terrace.”
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What is true: being vaccinated gives peace of mind, Angelique notes. Especially for her children. “They almost celebrated the fact that I got my first vaccination. Because they also hold back, they stay inside.”
On Thursday the family goes out to eat on the terrace. Saturday they go to friends. Life is going to be a bit more fun and easier. “But I’m still very careful.”
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Hanno Bos (47) already knows exactly what he will be doing on May 24, the day he is finally allowed out of quarantine after a year of sitting at home: having a party in the backyard.
Last Monday he received his second injection of Moderna. As an ALS patient, he had to go to UMC Utrecht especially for this. In his case, a car journey of more than two hours, but he would have liked to do that.
“Finally a light at the end of the tunnel,” Hanno writes in an email. He has been communicating with an eye computer for a year now. Talking and calling has become too hard.
Quar-out-aine-borrel
Fourteen days after his second injection, so May 24, the protection is optimal. Hence the ‘quar-out-aine drink’ in his large garden. With his six ‘PGB’ers’ (the people he hires to take care of him), their partners and children. “Unfortunately still safe at a meter and a half, because not everyone has been vaccinated yet.”
Back to the old normal, that will not go for Hanno either. He now lives with ALS for 6.5 years, on average people live three to five years after their diagnosis. “Because of the physical deterioration, the contrast with how I have lived in quarantine will not be very great. Anyway, no more busy parties, concerts, festivals and terraces for me. I do plan more cozy coffee dates at home with friends, family and acquaintances.”
Completely dependent
Hanno has been deteriorating rapidly for two weeks, he writes. Breathing becomes more and more difficult. He expects to soon receive a tracheostomy, a tube in his neck to connect a ventilator. “In addition, I am completely paralyzed and dependent on my dear wife, my carers, nurses and my eye computer.”
He looks forward to the 24th, when hugs from his loved ones “are almost unlimited welcome again,” Hanno writes. The next week his wife, son and dog will have the exclusive right for a while.
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No time to lose
Gorrit-Jan Blonk, director of the ALS Netherlands Foundation, sees that ALS patients assess the risk of corona after vaccination very differently. “When there was no vaccination, hardly anyone came out to protect themselves. But after two injections, everyone makes their own choice.”
He notices that there are roughly three views. “There are people with ALS who say ‘I still don’t trust it’ and stay in. A second group is cautious and, for example, only wants people around them who have been vaccinated. And the last group says, ‘Listen, I already have so little time with my loved ones, I’m just going to do things now. “No time to waste, then just a little risk, they think.”
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