COVID vaccine

[Libra7]

Is anyone wondering if the COVID vaccine might have an adverse effect on those suffering with a neurological condition and specifically those with ataxia? If getting COVID itself could worsen the condition we obviously need to shield as much as possible but I would be interested to hear if there have been any trials of the vaccine on ataxia sufferers .

[Butcherpete]

I feel that with all the doctors and research etc, that gone into this, it can make some of us no worse than what we have. There has been a lot of "scaremongering" by people, groups, forums and the like. The bottom line is to take it. And notice there has been no cause for concern, as Ataxia UK has not mentioned it really or got involved with a debate

[dansybelle]

This is a good article which allays fears about the vaccine being rushed. I would be surprised if every drug or vaccine was trialed with sufferers of every disease. I’ll be taking it because FA affects the heart and so does Covid. theconversation.com/less-th...

[Jenandbeth]

I am thinking that not having a vaccine is having an adverse effect on Beth. Her mobility deteriorated so much during 12 week lockdown when she could only walk round the house. She has had NO day service provision or respite since start of March, so little opportunity to socialise. She needs to get back to her hydro and her physio and the longer she doesn't use her full mobility the more she risks losing it. It's a balancing act of weighing up the potential side effects against the potential benefits and with the info I have to hand, the benefits win. Beth has been so patient with shielding BUT it's not a long term option, there is soooooo much more to life than just being alive and I want her to get that fullness of life back x

[Arlo20 in reply to Jenandbeth]

I feel for your Beth,i feel people with disabilities have been let down i know i have gp won't see anyone face to face physio has stopped still waiting for a flu jab although classed as extremely vulnerable.It irritates me that at sporting events they have doctors physios ambulances they travel the world to play games,yet people with needs to help get a half decent life through no fault of their own don't seem to matter.I hope you and Beth can still have a good xmas and the new year is brighter.

[jomo50 in reply to Arlo20]

Hi Arlo, I had my flu jab about 6 eeks ago. As well as the doctors you can get it at your local chemist. So, what are you waiting for?

[Arlo20 in reply to jomo50]

I am house bound so that's not an option,i have district nurse come and do my bloods for warfarin,but doctors surgery have to use their nurse for flu jab crazy system

[jomo50 in reply to Arlo20]

Hi Arlo, I did not realise your situation. I too have my bloods done every month but by the nurse at my G.P.s. Could you not mention this to your district nurse or maybe the vaccine has to be kept refrigerated. Or maybe the the nurse from your local G.P.s might be able to call out to your house. I hope somehow you manage to get it.

[Arlo20 in reply to jomo50]

I have to call OT for bloods as warfarin varies but they said gp surgery has to do flu jab crazy nhs system

[jomo50 in reply to Arlo20]

Sorry to hear this Arlo but I have nothing but oraise for the N.H.S.

[Arlo20 in reply to jomo50]

I think you misunderstand me i am not knocking the nhs just the waa its run seems silly to me that a district nurse can come and do my blood for warfarin but a different one for a flu jab all part of nhs, better use of resourses for one nurse to do it

[jomo50 in reply to jomo50]

Agree.

[Hidden in reply to Jenandbeth]

Hi Jennie and Beth

Hope you are both well.

I’ve just read your profile for the first time and let me tell you you are inspiration to us all.

Life has dealt you a few bad cards but you have a fantastic outlook and attitude and I hope you don’t mind me saying you look so young.

I have a good friend who lost one and a half legs and part of his left arm in the first Gulf war, d he keeps me on the straight and narrow when I’m feeling sorry for myself, he was only in his twenties married with a young daughter, he helps me in the normal Soldier like manner.

You have a lot of inner strength properly more than you think.

I will hostilely read your profile when I slip into my sometimes dark hole as this will help to drag me out as well as my robotic friend of course.

You both say safe and happy my friends.

Who Cares Wins.

[Jenandbeth in reply to Hidden]

Thanks for support, I'm a work in progress like everyone else and it's perhaps because I've gone to some depths that I work so hard at staying afloat. If it helps you stay afloat that's great. It's like a buoyancy aid we can pass on, cos I sure as hell wouldn't be as strong without the love and support of my people. I am also mindful that I only live ataxia second hand and it's maybe a bit like someone with an umbrella telling the person without what it's like to be dry 😉! That said, and in my defence caring for someone with ataxia, particularly when it requires a lot of care requires it's own strength and thanks for bigging me up, it helps! Your friend sounds phenomenal btw 😉

[Jenandbeth]

Thanks Arlo20, you too. You know if someone had told me what this year would have held I'd have thought we'd have fallen apart. We haven't. There have been moments but on the whole covid has shown me that we are more resilient than I believed possible and that brings strength and hope tho I wouldn't wish a repeat of this past year on anyone x

[Arlo20 in reply to Jenandbeth]

I was ok in the beginning but as mobility got worse had some really down days but got through them and can see light at the end of the tunnel now x

[Jenandbeth in reply to Arlo20]

Yes, I am a bit weird I think I went to worst case scenario at start and worked backwards so have got more resilient with time. The 12 week lockdown was most horrendous bit for me. We are all different, and need to be gentle with each other, take care x

[Arlo20 in reply to Jenandbeth]

Doubt your weird lol we are all different and deal with things in our own ways, soon be spring and lighter days seem better

[SueMillman Partner Ataxia UK]

We are having a meeting of our ataxia expert neurologists on Tuesday and hope to have some information regarding what is known regarding the vaccine, for people with ataxia on our website shortly - which we will also post here. Sue

[Libra7 in reply to SueMillman]

Thank you Sue. Will be most interested to hear what the experts think about the effect the vaccine might have on people with ataxia.

[Magic-Jayne in reply to SueMillman]

That's great Sue. Would be very interested in the comparison of the 3 vaccines on Ataxia. Would it also be possible to find out if any of the Covid vaccines contain aluminium as the adjuvant? Many thanks

[wobblybee in reply to Magic-Jayne]

I found this..

A full list of ingredients can be found here: assets.publishing.service.g...

[Magic-Jayne in reply to wobblybee]

That's great many thanks. Do you happen to have the ingredients list for the other 2 vaccines?

[wobblybee in reply to Magic-Jayne]

🙂 I came across that by chance on my Facebook feed, it had been posted by the NHS. I’ll pass on anything else that I see.

[Magic-Jayne in reply to wobblybee]

Thank you so much

[Libra7 in reply to wobblybee]

Thank you for the info Wobblybee. I have today been offered an appointment for the vaccine and though I have booked one for next Wednesday I subsequently received a news flash that indicated that a possible side effect might be a sudden drop in blood pressure. As I am allergic to morphine which affects me in this way and I am also allergic to shell fish I am now considering cancelling the appointment.

[wobblybee in reply to Libra7]

It needs careful thought doesn’t it, just today I read that two people had been ill after having the vaccine and they were both epi pen carriers 😶

[penelope2]

Hi all, I am waiting to see what Ataxia UK recommends re. The Covid vaccine.Another issue to think about for us ataxia sufferers is autoimmune ataxia because if you have this too then it could be contraindicated.

Hope that the findings and advice will address this too. My experience is that GPs are out of their depth here, that is when you are lucky enough to speak to them. I have asked my GP through econsult as you have to wait over an hour to even get through to the practice, then have to wait weeks for a phone consult only to be told she is not up to speed with the vaccine!!

Sorry about the rant, but I think doctors are hiding behind the "current situation".

Take care all.