Coronavirus and self isolation: Hi everyone, I... - Ataxia UK

Ataxia UK
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Coronavirus and self isolation


Hi everyone,

I have FA and although have no particular problems (such as diabetes) I am wondering if I should be self-isolating or at least limiting social contact as much as possible. My main problems are with coordination.

I am a teacher and work in schools 2 days a week. I have my heart monitored yearly and have slight arrhythmia. I am in my 50s and wondering if I should be keeping away from work for now. What do you think?


17 Replies

Hi dansybelle

Here is the statement from Ataxia UK-

Ataxia UK Guidance

What is coronavirus?

A coronavirus is a type of virus. As a group, coronaviruses are common across the world. Typical symptoms of coronavirus include fever and a cough that may progress to a severe pneumonia causing shortness of breath and breathing difficulties. Generally, coronavirus can cause more severe symptoms in people with weakened immune systems, older people, and those with long-term conditions like diabetes, cancer and chronic lung disease.

How will this affect someone who has ataxia?

In general, having an ataxia (except Ataxia Telangiectasia – AT) does not mean people have a weakened immune system, and therefore having ataxia does not render you more likely to catching coronavirus. This may differ for people who are taking immunosuppressants or if people have associated health problems so if you are at all concerned contact your doctor or ring 111 for advice. Having a long-term neurological condition does mean that people with ataxia find having an infection tends to affect them more than people without ataxia, and it takes longer to recover. People with ataxia and their families will therefore be keen to reduce the risk of catching coronavirus.

Please follow the advice from Public Health England to:

Cover your mouth and nose with a tissue or your sleeve (not your hands) when you cough or sneeze

Put used tissues in the bin immediately.

Wash your hands with soap and warm water often – use hand sanitiser gel if soap and water are not available.

Try to avoid close contact with people who are unwell.

Do not touch your eyes, nose or mouth if your hands are not clean.

The full NHS England advice is here and it includes information on whether using a face mask is needed. More advice on face masks can be found on the World Health Organisation website.

In the preparation of this guidance we have consulted both of the lead neurologists at the London UCL/UCLH and Sheffield Ataxia Centres.

It may be that the government introduces controls on large gatherings and we ourselves are aware that we may, with regret, need to cancel some events such as the Scottish Conference in June. Please keep an eye on our website and e-newsletters.

There was a COBRA meeting in Downing Street this afternoon. Unless you have symptoms of COVID-19 the national recommendation is that it is not necessary to self-isolate at the moment. Of course this may change in the future. What is important is that you remain vigilant with the 'dos and donts' above.

From a personal point of view as someone with ataxia I wouldn't self-isolate at the moment, but continue with great care the measures above. It will probably be the case I will have to self-isolate at some point which will be very hard (and boring!) to do-I would rather wait until the evidence is such that I have to. I am keeping a close eye on the Public Health England/NHS England websites.

Best wishes


in reply to HarryB

Thanks Harriet, I saw that on the ataxia Uk website. I guess I’m worried because I am potentially sharing germs with about 1500 children each week. They are of course quite charming but not famed for personal hygiene! I’ve contacted my HR and will wait and see.

in reply to HarryB

Hi Harriet, I am due to go to London theatre next week, Les Mis, booked last October. I am anxious whether I should go due to Corona virus, If I decide to go I cannot see that I would enjoy due to worrying. Any advise please?

in reply to Pussycat1

HI Pussycat1

I am sorry for my delay in replying. I completely sympathise with how you must be feeling. Les Mis is my absolute favourite musical and if I had booked tickets for it in London and I was told not to go for whatever reason I would be extremely disappointed.

Recommendations are changing so much and so quickly at the moment.

Unfortunately it might be that the performance is cancelled, in which case the decision would taken be out of your hands.

As you know mass gatherings have not been banned yet in the UK. We know this will come at some point. However plenty of other functions/meetings, some very high profile, have been cancelled or postponed.

There may be people who have the virus but are asymptomatic.

Sitting in a theatre you would be in very close proximity to others.

People over 70 and I think younger people with certain health conditions, although there hasn't been any strict definition for what these are, will be asked to self-isolate at some point for an extended period to protect themselves.

Looking after your own health and that of others is paramount.

Taking all the above into consideration, again I can only give you my personal view, I would not go. As much as I love Les Mis I wouldn't want to compromise my health and that of others for days and months to come for the sake of one evening out.

I am sorry not to be more positive.


in reply to HarryB

Many thanks, decided not to go as not worth the risk. If mass gatherings are stopped, I may get opportunity to rebook in the future without further cost, (tickets are not cheap) but knowing my luck this won't happen until after Wednesday performance. Thank you for taking the time to reply, take care and keep safe.

in reply to Pussycat1

You too.


PS. I do hope you get the opportunity to rebook.

Dont go

Thank you, had made a decision not to go and theatres in London are now closed anyway so maybe chance of a refund!

Am sure you will get a refund, hope you do.

I have friends and family who in my opinion are over reacting. Personally I think the precautions taken by my husband and myself not to catch any germs are sufficient. ~We are both nearly 80 and although vulnerable dont wish to live our life in isolation. I respect others opinion but that is mine and thankfully also my husbands.

Yes, common sense should be enough. Both my husband and I avoid GP waiting rooms as much as we can.

I wear gloves until I sit in surgery and use my walker rather than a chair. We have most of our shopping and prescriptions delivered.

Hello to all! In regards to the Coronavirus it is most important now to avoid all social contact. You may not have it but you will never know who may until it is too late. I have Ataxia from a blood clot to my spine 5 years ago from frequent long distance air travel I am 58 years old and have lost most of the use of both legs. In a way I am very fortunate now to have Ataxia. I am from The United States originally but have resided in South East Asia for the past 20 years. Being so near to the Coronavirus epicenter we have had to deal with this since mid January. I am fortunate that I have created a hospital room atmosphere in my home. Why go to the hospital when I can bring the hospital to me? I have self quarantined for the past 2 months my only contacts being my caregiver and family members. It deeply saddens and worries me to see the reaction to the virus in our so called 1st world countries. Good god do not come into contact with others, children especially for a few months until there is a better scientific grasp on all this. A few months of social distancing or isolation is a very small price to pay for your own safety as well as the safety of others. If you can’t do it for yourself please think of others. It is now known that the virus thrives in Latitudes between 30-50 degrees north or south of the equator with cool temperatures and low humidity. I put little faith in any government but do put a lot of faith in proven science. Washing your hands and practicing good hygiene and social distancing or isolation is the only defense. I watch in horror the news from around the world of so called civilized countries with their heads in the sand in regards to testing. The Taiwanese seem to have figured out the best how to combat this and no I do not reside in Taiwan. Please stay safe and healthy and think of others and not just your own temporary inconveniences. I can’t believe that on this late date the Western countries have not shut their schools and most businesses as we have here since mid January. I see what has happened in Italy and it is only a matter of time before other countries with suffer the same fate. Stay safe all, practice good hygiene, common sense and most of all think of others and avoid all unnecessary contact with others. The individual inconvenience will be worth it in the long run and hopefully this will pass before the beginning of 2021.

Peace & Love to All!

Dansybelle, I live in Indiana in the U.S., and your question is one that I have heard several people here ask during the past week. It appears to me that the biggest differences between the Covid-19 situation here, and what you have in the UK, is, first, that you seem to be maybe a week, or two, ahead of most places here in the spread of the virus. But, I think that you have had a lot more testing for the virus there than has happened here. So, although you are probably more likely, in the UK, to come into a place where there is someone who has been infected by the virus, you have a better idea, than we have here, of where, and with what groups of people, the highest number of Covid-19 cases have been positively identified. So, you are able to make a more educated decision about the type of risk of infection that you would be accepting should you decide to go out. Here, no one is being tested unless they have recently been in contact with someone who has been diagnosed with Covid-19, or if you are having strong symptoms associated with the virus. In other words, people here do not know for sure how many people in any certain area might have the virus. Because of those circumstances, people here are just being advised to wash their hands often, not to touch their faces, and to limit, as much as possible, contact with other people. So, I think that you should try to determine how the virus might have spread into the area that you would be going, then decide if those risks would be worth taking for you.


Well as I live in France and we are now in lockdown. Except for the local elections which are today which is contrary to the all the government advice - pretty stupid. No doubt there will be a low turnout of voters.

I'm respecting the advice of isolation, if not for me, then for others.

The problem is how many people do and will be needing intensive care. Each country only has so many ICU s.

Think not just of ourselves but of others too.

Take care


Well, we’re in the UK, and self isolating because my kids developed temperatures last week and over the weekend (we’ve all been coughing for months, nothing new there!). I quite agree wobblywobbly, we’re following the guidance for the sake of those who would be badly affected by the virus. Me and got kids will be miserable but ok. That is, if being cooped up with them any longer doesn’t send me over the edge!?!

I think this includes ataxia under neurological conditions like MS?!?

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