Face coverings. Message from Sue Millman, CEO o... - Ataxia UK

Ataxia UK

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Face coverings. Message from Sue Millman, CEO of Ataxia UK


Dear all

Please see the below message from Sue.

‘Face coverings will be mandatory in shops from 24th July. As an ataxia patient, how do you feel about this? Will this have a negative impact on you leaving the house? We encourage you to write to Sue Millman, our CEO, smillman@ataxia.org.uk with details of how and why this will impact you negatively. It’s important for us to collect evidence from our Friends so that we can ensure that if necessary ataxia is added to the exception list of this new regulation. We want you to feel safe and confident enough to leave your house after being in lockdown for a very long time.’

Best wishes


13 Replies

🙂 I’ve worn a face mask for supermarket shopping. Although I have no objection due to the present circumstances, I have found myself becoming hot very quickly. Breathing is difficult, and this can cause a certain amount of panic to set in. I just want to tear the thing off. No doubt I’ll not be spending much time in shops, or any other confined areas.

I have idiopathic C/A with mild brain atrophy & have to admit if I’m out alone I really do struggle. Walking with 2 sticks & Having to keep my eyes on the floor constantly to see where I’m going is proving harder than sounding, I constantly need to concentrate on every step I take & If I take my eyes of the floor to even glance up my balance has gone & im on the floor, I have double vision so trying to see over the mask has resulting in me not wearing my glasses as they steam up! It seems there’s no winning whichever way! As an ex nurse of 25+ years before I had to leave my job I was used to wearing masks but not now.

I am disabled, wear spectacles, use and electric wheelchair, cant walk a straight line, and fall down if I try.... I havent been out for four months, but have a face shield to wear when I do.... I will post a photo on the Ataxia community for you to ser, I can breathe while wearing it, and my spectacles dont mist up. 😀🌈👍

Yes I’ve seen the shields & there’s no way I’d be able to wear one due to being claustrophobic. I’ve been shielding since the last week of February & ventured out for the first time last Friday which I wore the mask for , but had to return back home after 1/2 hour. I’ve also got 2 different walkers with wheels, a wheelchair & a mobility scooter, but due to my house, land garden being bought & private & on such a High slope its impossible to get it down unless someone carry’s it up & down for me, but my husband still works full time so isn’t at home through most of the day. I’d personally prefer to not have to wear one, being a fully qualified experienced nurse I’m aware of the dangers etc & think it should be down to each individual if they wish to wear one. At present in still listening to medical advice from who & sage etc & they are still saying masks are really if not benefit or protection unless in a hospital setting.

Consideration needs to be given to the patients who suffer with speech deterioration, it is difficult to understand them at the best of times and sometimes imperative to see their lips forming the words.

Also, what about people who work in shops and are hard of hearing?

I am deaf also?

I know that our friends with hearing difficulties benefit from seeing lips, with a face covering that makes it extremely difficult for them to communicate, then people (trying to be helpful) take tge mask down, move in closer and shout! Which then endangers them much more than to begin with...

I believe there is research that indicates oxygen levels are reduced within minutes of wearing a mask. Also breathing in our own carbon dioxide instead of oxygen is not good long-term.

The masks hubby bought from Boots are made in China !!

Why now when the 'virus' is on the way out ?

Disposal of masks and gloves is proving a global issue - sigh !

Excellent idea to have Ataxia added to the list - good to see such positive action. Hope it works 🌻

Legs-alive in reply to Marz

Not forgetting that the scientific advisors from who, sage etc are STILL saying masks are of no benefit & protection to the public & they’re still advising to be used in only hospital settings where the benefits of protection work, I do believe our PM, Mr Johnson has made this decision in the hope of making more people feel it’s safe to go out & into the shops if everyone is wearing masks, unfortunately I also believe that this decision is working against what he’s hoping for & more ppl will be stopping in for longer

We have just received this from Ryan’s special needs school:


Litty in reply to majajefferies

Spot on x

I live in the USA and many states in our country are not doing so well (Covid cases keep increasing and people continue to die). Therefore, I ALWAYS wear a mask when out and about, as I don't want to endanger anyone else in case I'm asymptomatic (I have not been tested thus far). Yes, they're hot and uncomfortable and it can be difficult to breathe, etc., but protecting others is more important to me! Although it hasn't been proven, I think a mask also protects me a bit too! I've had ataxia 20+ years due to Niemann Pick C disease. If I couldn't tolerate wearing a mask, I wouldn't ever leave me home! In my humble opinion, if everyone would just wear a mask in our country (when they leave their home), we'd see cases begin to drop quickly, but many people won't, as they say it infringes on their personal freedom! Just MY opinion..., ;o)

I remember seeing this post but not having had experience of wearing a mask I didn’t feel I could comment. Forgot this was here,sorry, and just posted this healthunlocked.com/ataxia-u... x

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