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A LEMS patient perspective from Sweden
Happy Monday everyone. I know it feels like March has had 67 days; but please know we are all in this together. A LEMS patient from Sweden, who observes our patient forums, asked me to share his view of COVID-19. The last one was very hopeful and please remember- if your LEMS is diagnosed and managed with your treatments and meds, it puts you in the best possible scenario if you are to contract COVID-19.
1) Off course the normal precautions, like washing hands etc.
2) Self isolation:
We (my wife and me) are in self-elected home isolation for 3 weeks now, we go out to remote area’s for some exercise and relaxation, but do NOT go shopping, meet no friends, family etc.; no-one enters our house, not even our son, who does the necessary shopping. Suddenly that garden-thing, toy, tool, trousers, they all can wait!I realize this may not be possible for every-one, we are blessed we can!
3) Vitamin D3:
I take a 50 mu gram daily doses of Vit. D3, it is supposed to improve your natural resistance. Not sure if there is scientific proof for that.4) Exercise:
I avoid stress, and do go for a walk, a couple of times a week, as said, not close to others, in remote, very quiet area’s, and not in the weekends.5) Minimum distance / social contacts:
If we encounter others during our hikes, we keep 3 m (which is approximately 3 yards) distance, minimum.
Guidance over here is 1.5 m (1.5 yard) distance, but I feel wind can spread droplets much further/faster. Better safe than sorry.No contacts with others (outside your house hold), also not with healthy people.
6) Work:
I am aware I’m privileged to be able to do some work, and even more, can do this from home.
I saw a question from Ashley about working and a MD:
Our neurologist does not recommend those working in health care etc. to have patient contacts, also patients that are supposed not to be infected. It is recommended to discuss other (temporary) work, or even better: stay home)
7) Extra risk:
There is basically no extra risk for getting infected with the virus when having a MD, but consequences can be higher, especially for those that additionally have a lung (or related parts) condition or a condition with the hart.
People using AI -suppressors should keep using these, but when infection is suspected, immediately consult your neurologist for advice.
8) Experience from others with LEMS:
I am aware of one other person with LEMS who has had the virus, after approximately 1 week she was feeling better, so I see this as “good news”. She was not hospitalized. -
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