Just a thought!

[paxo05]

Hi all,

Had a thought ( rare I know). Was watching the news the other day( not sure when) about symptoms left after covid.

They listed brain fog ,fatigue, co ordination problems and short term memory problems.

Not surprisingly it struck a chord. Then I began to wonder if Headway was,or could be involved in helping people come to terms with their symptoms.

Now they may already be doing so and if not should they be doing so. This is not a criticism but a question. There may be good reason why not.

Some may even say " but its Covid not a bi". But I feel it's not how you get the symtoms but how you deal with them.

When I first joined Headway the majority of people suffered their bi via a rta like myself or fall. Few from a stroke or aneurysm .

Know more and more are from aneurysms. I feel a bi is a bi. How it comes about is not the issue. The effects are to similar to separate them.

The more experiences of living and dealing with shared symtoms can only be good for the wider bi community.

Errr back to my original point.... I know this may mean a flood f Covid survivors on this forum but hey we all share the same symtoms.

Am I being to simplistic here if so tell me. I have no real answers just questions.

I feel the wealth of experience amongst us on this forum and Headway could be put to good use. It could be our way of helping in this pandemic.

Just a thought,

Pax

[Kirk5w7]

Hi PaxIve not looked to see if there is a post viral syndrome forum but thats what could work for them because thats what it is.

I had viral encephalitis which caused a BI and the effects overlap totally.

I find this forum matches my recovery very well, the problems i face are matched by so many.

J x

[paxo05 in reply to Kirk5w7]

Same here not really searched I just wondered if Headway had got involved or had people having had covid been steered towards Headway .

Its seems covid can give neurological symptoms which many bi sufferes are all to familiar with.

Although the bi club is not one that you may wish to join, I find it is a very supportive and inclusive one.

I think I was just willing to help in any small way. I have watched over the past year the dedication my wife and daughter have given working in healthcare. I feel any way in which anybody can help is surely a good thing.

[cat3]

Hi Pax. I've been thinking along the same lines since watching the case of Derek Draper and hearing his wife Kate Garraway saying 'His brain is no longer his friend'. And it seems Covid cases resulting in serious neurological issues are now becoming more & more recognized, although it's unclear whether due to infection or inflammation.

I'm sure that Headway welcomes anyone with brain injury regardless of the origin ; just sad knowing there's yet another 'route' to sustaining a BI. 😕

Hoe you're doing ok Pax and managing to swerve this dreaded virus. Cat x

[paxo05 in reply to cat3]

Hi Cat.

Yes managing to keep safe. Although my vaccination knocked me off my feet for a week. Bloody immune system.

Now you mention it that was the programme I had seen iton, presumed I had seen something on the news.

My wife said watching him was like when I was recovering initially

All I remember is feeling trapped in someone else's body because it wasnt doing what I thought I was telling it.

Hope you are well and ready the release date into a new normality

Pax x

[cat3 in reply to paxo05]

I remember that feeling, especially when I couldn't stand despite many attempts & great impressions of Bambi on ice ! It must've been hell for our loved ones seeing us so diminished. And my daughter was a bit tearful watching that same program ; she had witnessed me looking so pathetic and then her dad 6 months later from a catastrophic version of the same issue (died 2 years on sadly).

I'm ok thanks Pax ; not especially affected by lockdown - just missing visiting family. Sorry you had a bad reaction from the vaccine. Mine was fine apart from a few sniffles but not taking any liberties 'til after the booster...

Good to see you Pax. Take care.... x

[AndrewT]

Dear paxo05,

a good 'thought', For the Future.... Yes, some of the symptoms- of Long Covid do- appear anyway- to be Similar to those of a Brain Injury. Whether, or not, this IS actually The Case, or not, is for Another time.... when 'this' is All Over.

Forgive me BUT.... as we ALL Start to 'come out' of this, the LAST 'THING' anyone Needs... is 'Someone' comparing symptoms- of Different Conditions! Yes, you could be right...COULD. Think of it thus, without being 'unkind'..... there has been a Major Chemical Spill, in the centre of the Town, the Council- and Others- have come along with Specialist Equipment, Specific to the Task..... and there is you, with a Mop & Bucket, wanting to 'Help'. Once the 'Clean Up' has been completed.... your Contribution, will be Very Welcome Indeed- but NOT Until!

There WILL be 'Time', for ALL the 'Mops & Buckets', in the future, in fact they will be Actively encouraged.... just Not YET. Please Please, Don't think me 'unkind', your contribution WILL be a Valuable one Soon.... in a while.

AndrewT

[paxo05 in reply to AndrewT]

Your right. I was not thinking of it being the answer to a solution just a way a reassuring people. As of the chemical spill I would see our role of reassuring people it was being dealt with and Headway of directing people around and where to get help if affected.

Like I put it was a basic thought as until a covid specific help forum was up a and running was there any help we could offer.

[fifif in reply to AndrewT]

Yes, AndrewT, and Sospan, I think you make a good point. For example, it looks like CFS could be linked with 'long mono', (glandular fever). Given that many doctors do not even believe that CFS is real, it might muddy the waters. There will be more awareness and information in the future as we learn more about the effects of covid and 'long covid'.

[sospan]

The problem is that a lot of other injuries / diseases have overlapping symptoms with Head injuries: CFS, Diabetes, Dementia, sleep apnea, vitamin deficiencies etc.

You are correct through the was to cope with all the overlapping symptoms them is very similar.

The main question for me though is why do organisations like Headway, Mind, Scope need to exist and need to be funded by charitable donations and fund raising? For rare conditions where there may be low numbers, I could see the need for people to band together to support each other but not for relatively common and prevalent conditions.

[AndrewT in reply to sospan]

Do you 'Mind' if I PM you? I think you have rather the Wrong idea about Headway.

AndrewT

[paxo05 in reply to AndrewT]

If you meant can you pm me then yep fine. I was not saying Headway should take on the role of a help group for covid survivors mainly point people trying to get a grip on symptoms in the right direction.

I believe there will end up with a group specifically dealing in covid after effects.

[cat3 in reply to paxo05]

Pax .....AndrewT's mention of a PM was a response to Sospan... x

[paxo05 in reply to cat3]

Was thinking that but thought I'd check just in case. I dont always trust how I read things sometimes ( ok a lot of times ) i read it wrong.

Thank Cat x

[cat3 in reply to paxo05]

Ha ha - welcome to my world Pax (& those of many others here I expect). Hope you've got some of the sunshine we're having in NW today ! 🌞 x

[paxo05 in reply to cat3]

Finally I think the winds have eased and the sun has come out. Hoping it stays like this as I'm trying to put up a conservatory up. Working one half day then resting three to four days is making this a major job even without the bad weather. But it will be worth it when I'm sat sweltering in the summer heat.

As for understanding people I gave up years ago.

Hope you are enjoying the warm weather.

Pax x

[cat3 in reply to paxo05]

Good luck with the conservatory ; the forecast is pretty good for this week ! Take care Pax x

[Pairofboots]

Hi Pax, I guess I am thinking more along the lines with sospan, that there are overlaps. I do wonder why we need in 2021 so many charity's taking on statutory responsibility. We over the years moved from charity's supporting the state to the point where Nye Bevan's dream of cradle to grave care has been whittled away to the point that the state has abdicated its responsibility to the charity's. But then I believe in the society and state providing care for all, free at the point of need, need being the operative word.

[Painting-girl]

I suppose it would be the same for all the charities with experience of handling day to day fatigue - from brain cancer to CFS/ ME. They will all have valuable insights for new sufferers.

I like the idea, but I'm not sure how the mechanism of help could be put in place. From working as a volunteer in different charities years ago, the brief that each charity has, as part of their charter is pretty specific - and no-one working within the charity can go beyond that.

Perhaps something via health unblocked would be an option as a start?

Headway was originally started because brain injury survivors got a raw deal in terms of support. It's sad that forty years on that in some places that hasn't changed. Interesting article on the Headway site - I hadn't realised the full extent of what they offer -

headway.org.uk/about-headwa....