I was wondering how our community is coping with the Coronavirus pandemic.  For my part, I've taken the matter very seriously because of my age -- definitely past 65 years old, so naturally vulnerable -- and also because if an "ordinary" flu virus (Influenza A) was able to trigger an episode of SCLS after my being episode-free for over a decade (see https://rareshare.org/topics/1967), then I'm pretty sure that the Coronavirus would trigger another one and, who knows, it might be the "Episode to End All Episodes"!

Therefore, my wife and I took the decision to isolate ourselves in our apartment twelve days ago, when most people weren't self-isolating themselves, such that we have not seen in-person any friends or family members throughout this period.  We stay in touch with them via telephone, FaceTime, Skype or email, though our grown children have just now gifted us one of the brand-new Portal TV devices (see https://portal.facebook.com/products/portal-tv/) which should allow for better communication with them and our grandchildren once the device arrives and is installed in our place and theirs.

We exercise at home in a stationary bike and usually go out for a walk in the neighborhood or a park early in the morning or late in the evening, when there are no crowds and we can keep our social distance from other people.  My wife also goes during non-busy hours to a supermarket once every 5-7 days to load up on fresh and frozen food, and she wears a mask and keeps her distance from everybody she encounters.

My wife is retired but I'm still working, though I am very lucky to have been able to perform my job remotely from my desk at home, so unlike many other people who work in small retail shops, restaurants, bars, hotels, cinemas, theaters, gyms, the travel industry, and all kinds of in-person services, I am still getting paid and keeping my medical-insurance benefits.  My heart goes out to all those who cannot do their jobs remotely or will be losing their employment or businesses.

My family's main concern is what will happen in a couple of weeks when I have to go to the hospital's Infusion Center to get my monthly IVIG treatment.  Chances are, the hospital will be full with diagnosed and undiagnosed Coronavirus patients and medical personnel.  I'll be wearing a mask and I hope that the infusion receptionists, nurses and auxiliary personnel will also be wearing their masks, but as you all know, it's impossible to have an IV put in and to have one's vitals measured (again and again) while maintaining the recommended social distancing of at least 3 feet (one meter).  Therefore, that routine appointment is going to become quite a risky, fearsome adventure.

The thought that, in a best-case scenario, we will have to remain socially isolated for a couple of months is starting to weigh on us.  But then, at least my wife and I have each other -- for better and for worse!  ;-)   My heart goes out to those who are self-isolating alone.

How are you all coping with the Coronavirus threat?

Took the decision to stop working in school on Tuesday as was just feeling too vunerable.  School in UK are closing at the end of this week anyway.I will avoid all contact with people outside my home.  Will go to my allotment, go cycling and for walks but will ensure to stay well away from anybody else.  As I live in a fairly rural setting this should not be difficult.

The way this virus has been handled by our government in UK infuriates me.  All school exams have suddenly been cancelled which affect both of my older sons whilst we have been too slow acting to stop the virus spreading.  

As for the Chinese government well words fail me.

Hello from our farm in rural Canada. Glad to have the space as we socially distance ourselves from the world to try and stay healthy.  It is team effort, a conscious decision by everyone here to make the decision to stay home I am finding as we are now at 6 of us back home. Sometimes I feel like I am trying to herd cats!  Our two youngest children have had their universities closed and have been sent home to finish the school year. They are in social withdrawal already. We have had to have some tough conversations about what we all need to do keep me healthy, which I do feel bad about. I don't want to be paranoid nor live in fear yet I'm not sure how my body will deal with this virus when a simple flu bug can put me into a swelling episode. The reality of living with a sick parent has hit home again for our children in a big way but we are trying to make the best of it. We are trying to plan some fun activities to make the time pass... like Pizza Night on Saturday nights and I am signing up for an online Yoga class that hopefully a few of the kids will join me in doing.  In this time of uncertainty I am taking the time to pause and reflect on the challenges we have faced in the past and how we have survived them together as a family and we'll get through this too. We will keep our faith, our love, our sense of humour... and the odd happy hour to lighten the load. Praying that everyone is staying healthy... Let's keep in touch!!

I had my treatment Monday and Tuesday of this week in Tampa. The reception staff was glove,mask and gowned. They checked that everyone was to be there walking in the door. Not allowing any visitors, just patients. I have a port so my nurse had to get near me for that. Thankfully gloves and masked. I did request to take my own vitals (we all have our own cuffs) and was allowed to do so. This was one less interaction with staff each hour. My infusions take 10hrs each day due to how slow they have to run it. 

I have twin 14 yr old sons that I homeschool that have been keeping me company during this quarantine time. It has actually been nice not to have to go anywhere and just HAVE TO relax. 

I go to treatment every other week so we shall see what comes in a week and a half!

Shannon 

Hi All. May wife and I have self isolated. We are extremely lucky in Australia as we have an very good universal health care system which removes many of the worries that people from other countries can face. My wife and I are also very fortunate to have a holiday house in the Snowy Mountains which are located about 6 hours drive south of Sydney and 2 hours south of Canberra. We have isolated from all friends and family which is already very hard to contemplate but compared to facing a world war for example  is trivial.

Internet, facebook etc makes things so much easier. My wife, an retired early childhood educator, is already assisting one or our family groups with morning book readings along with the other grandparents on alternative days.

I have tried to attach a photo taken from our deck but I dont appear to have the IT skills as yet.

Hi everybody 

as you wrote before in our experience her in Italy  this Coronavirus is very fast to expand at 15/02/2020 we had 3 persons now we hav right now 41000 persons also in the rest of Europe so i

i recommend to stell at home this is the only way to be safety for you and the other 

i stell ok every thing is going well I get my ivig dose at Monday and Tuesday 

hoping the best for all of us 

God bless us 

Hello everyone, we have all been stationed since Monday night, where I made all the arrangements to be able to stay 30 days at home without going crazy due to lack of tools.  My wife, a doctor, makes teleconsultations and sells only on Fridays for patients who need a checkup.  I have a huge park that allows me to avoid confinement.  My economy depends on commerce, for what I must handle is stress of knowing how to pay without activity and for how long.  I live in a poor country, so any government help is unthinkable.  I don't see anyone other than my children and my wife, I try to think that this is an unexpected war, where the only important thing is to be alive when the war ends.