idamax

hi my name is Ellen my husband was diagnosed encephalitis in October he’s 74 it’s like his life was taken away from him in seconds that morning he had mri scans lumber puncher and plasma exchange was hasn’t worked he can’t walk or sit up in bed or even get out of bed it’s taken his mobility way he’s personality has changed also confusion and hallucinations he spent 9 weeks on the Atkinson Morley brain hospital in St George’s hospital we are in London he now has carers to change pads has its now incontinant doctor said it could take 2 years for him to walk this disease is cruel and can’t take months or even yers to get back to some normality thanks for reading this post Ellen

[kitnkaboodle]

I am so sorry about your husband. Encephalitis is hell on earth, and it may be even worse for the family members witnessing it. I hope and pray you both have the love and support you need to endure this very difficult season. And yes, it is very likely he will struggle for months and years, but it is also very likely that he will improve in big and small ways. Try to look for that, and be patient with him and yourself.

P.S. Your first name is my middle name

[HSE_Survivor]

Hi Ellen. We all understand how hard this must by for you . There are no easy answers or solutions. My husband was also told it would take two years to see how fully my brain could recover and find new pathways around the damage . As your husband was diagnosed in October, it is still very early days in his recovery. The recovery journey is different for everyone , depending on the level of damage encephalitis has caused to his brain .

I would recommend you speaking to the Encephalitis International advisors about the support that’s available for you and your husband . The NHS offers various therapies, if your husband eventually recovers enough to have them . The Encephalitis International would be able to advise you what help and support you can request during the ongoing recovery journey.

Has anyone told you that the UK government offers an ‘Attendance Allowance’ for people like your husband with a health condition severe enough to need someone to look after them? There is also ‘Personal Independence Payment’ (PIP) to help with extra living costs if the medical condition prevents the person to do certain everyday tasks. Those allowances could help you pay for carers to help your husband .

I think wonderful family like you need just as much support as the survivors of encephalitis . Definitely make sure that you take care of yourself, too . We are all here for you if you need a friend. ❤️‍🩹

encephalitis.info/contact-o...

[Hidden in reply to HSE_Survivor]

Thank so much yes I think early days and his age also he’s 74 the hardest thing is he can’t walk or even sit up in bed he has to have carers to get him in and out of bed hes back in hospital now owing to a chest infection but very confused so there going to do another EEG and more bloods there also going to test his ammonia which iv never heard of because he was sleeping to a point were it was difficult to wake him so not sure if we will be spending Xmas in hospital I find it so hard to think this disease have wiped his life from him to the point he can’t hardly do anything he sometimes sits and cries saying why has this happened so sad just hope with physio he gets stronger and the anger with this encephalitis gets better thank you for being there for us and wish your husband gets better x Ellen

[EncephInternational Partner]

HI, I am so sorry to hear about your husband's diagnosis. If you would like to chat to our support team please do get in touch [e-mail] or call [phone]