Happy Christmas

[Upland-goose]

Hi, my first post. Hope everyone’s having a great Christmas.

[HSE_Survivor]

Welcome to the group, and Merry Christmas! 😊🎄

[Upland-goose in reply to HSE_Survivor]

Thanks HSE

[HSE_Survivor in reply to Upland-goose]

I completely get your concerns about dementia . I have epilepsy now , and I know that seizures in the long term can cause further damage to the brain. . But the study I’ve forwarded below found that brain recovery is more common than decline after acute encephalitis. The conclusion is very positive as they found ‘further deterioration was uncommon’ . . Hopefully that means we are not more likely to get dementia just because we’ve had encephalitis.

jnnp.bmj.com/content/63/2/222

[Upland-goose in reply to HSE_Survivor]

Thanks HSE, sorry to hear that you developed epilepsy, that must be challenging to say the least, but the dementia news is encouraging.

I’ll have a look at the attached study when I get a moment, hopefully it will provide me with some further insights into our condition.

[Gandalf2]

Hi Upland, Merry Christmas, Happy New Year and welcome to the forum. I have Auto-immune encephalitis of fairly obscure origin (virus?) and Hashimoto's encephalopathy, possibly associated with a low thyroid condition. Plenty of meds and a relaxed pace of life seem to be the best option at the moment.

I live in the UK too so medical costs are taken care of. I'm 72 and the Enc started a couple of years ago - seizures, memory loss, cognitive decline etc. I'm sorry to hear you contracted HSE so early in life but you seem to have coped very well despite the ups and downs.

As regards dementia etc. I'm not sure what lies ahead my brain seems to be gaining ability, writing, reading, playing Scrabble etc. So maybe that may be the case for you too.

Exercise, maintaining interests where possible etc. all the obvious stuff helps a lot but motivation can be difficult. You should be entitled to lots of support via your GP and a social worker. We have a psychiatric, psychology, physio, counselling, dietary coming in short 6 week bursts as needed. A Blue Badge, Attendance Allowance and Carer's Support all help and can add up to a lot. I'm retired on a pension plus state pension. It would be very hard on a basic Disability Income.

Enc. is a bit of a prison I find and a living hell sometimes. But when the clouds part I'm pretty OK. My wife and I were married before it all started and without her I couldn't cope, memory loss being the greatest problem. I'm due in hospital for a small operation tomorrow - we'll see how that goes.

That seems to be about all I can manage at the moment. I have quite a few other posts they may be of interest.

Anyway, Best Wishes, Merry Christmas and a Happy New Year! G2

Baby donkey

[Upland-goose in reply to Gandalf2]

Hi Gandalf, apologies for not replying sooner, I had a long day at work and then came home to the obligatory chores.

As you say, it’s funny that I had it so young but that you contracted it so much later in life. I’m really not sure which I’d prefer. At least I’ve had plenty of time to develop my coping strategies I suppose, but you also seem to be doing remarkably well.

Anyway, thanks for your feedback. I’ve not seen a doctor regarding my Encephalitis, since I was discharged from hospital fifty years ago, but I’m planning on speaking to my doctor and asking for a referral to a neurologist. I’m really not sure what care I need or am entitled to, but I can at least get the ball rolling.

Good luck with the op tomorrow.

[Gandalf2 in reply to Upland-goose]

Hi Upland, thank you for your reply. I can't imagine how it must be to have had Enc at a young age. You must have a strong constitution.

I'm back home today as my op was cancelled due to my having another urinary tract infection. They say if the bacteria get in the bloodstream it can cause sepsis which is pretty serious. So they gave me some antibiotics and taxied me home.

I am in bed looking out of my window watching the aerobatics performed by birds with a distant prospect of Ilkley Moor on the horizon. No snow here at the moment so everything is still green, though the trees are bare.

I got very good care this time with friendly nurses and medics. I always take a blanket and a fleece dressing gown when in hospital as I find it cold on the ward. They will reschedule my op in the New Year so should have some good news then. Happy New Year G2.

Best Wishes, G2

[Wygella in reply to Gandalf2]

ooops. Replied too soon. Take care. Stay warm. I live in Lancashire so know your neck of the woods well. Beautiful there.

[Wygella in reply to Gandalf2]

Hope your op went well and you’re now recovering. I’ve had to have several on my eye so I know the stress doesn’t help us E people so I’m thinking of you.

[Gandalf2]

Thank you, the op has been postponed due to chest and UTI infection.

A little bit of NHS mismanagement at work.