Robbie

[RobbieLEast]

Encephalitis Sept 2022. Hospital for four months and friends notified that I would not survive. Horrible details but fortunately I remember nothing. All has gone really well and I am now at the point of looking for work but still cannot remember names, place names, actors, countries, etc, without constant practice.

[Tuesando]

well done after such a dreadful ordeal.

[RobbieLEast in reply to Tuesando]

Thank you but I think it was a lot worse for my friends and the hospital staff. I didn't know where I was or who I was but kept getting outside for a walk about. They worried a lot but I love fresh air.

[HSE_Survivor]

Hi Robbie . I’m glad it’s gone well for you . Memory is the problem we are all familiar with . I couldn’t survive without my phone ring reminders to me , or texting myself important names that I will need whenever I go somewhere .

I’d recommend taking Omega 3 supplement. It is not a miracle cure, but I think my memory has definitely improved since I started taking it . It’s worth googling it and giving it a try . 😊

[RobbieLEast in reply to HSE_Survivor]

That's a great idea. I will definitely give it a try. Many thanks.

[RobbieLEast in reply to HSE_Survivor]

Thanks again, the Omega 3 seems to be working really well. Some names have already stuck in and some come back without struggling to think. I'm definitely sticking to it and will also suggest it to others.

[HSE_Survivor in reply to RobbieLEast]

That’s really lovely to hear, Robbie. 😊

[EncephInternational Partner]

Hi Robbie, so sorry to hear about your experience with encephalitis. We have online peer support groups which you may find helpful. We meet once a month on zoom for 60 minutes and people chat about their experience with encephalitis. If you would like to know more please see our page encephalitis.info/online-pe...

[The_Bass]

Fantastic recovery against the odds RobbieLEast ! I also had (nearly) four months in hospital with encephalitis – it didn’t look particularly positive that a strong recovery was on the cards for a lot of that time. I guess the odds on having encephalitis in the first place are slim so a strong recovery shouldn’t be ruled out either!

I definitely find my biggest day to day obstacle now (three and a half years later) are names. The phrase “in one ear and out the other” is pretty much my relationship with names now, be that people in my life or famous people. Definitely examples of both that stick – family or work colleagues I see most days – but anyone beyond that, very difficult. Being a musical person, I used to be an expert for any music rounds at pub quizzes – now, I hear the song and often can almost feel the name of the singer, the band, the album rattling around inside my head but to no avail … still, I appreciate things could be much much worse. I try to see the funny side as best as I can.

Part of me feels like I need a placard sometimes to say “I know I look normal but I can’t remember XYZ and find somethings take more effort” … and even when I have been able to explain what I went through to colleagues, it’s impossible (in my experience) to really sum things up in a way they’d understand. The story’s too long and complicated!

Something I try to do regularly is make a note on my phone of anything I might forget. So names aplenty on there! I do sometimes feel like I’d pass as some kind of spy – quickly checking my phone notes on the sly to reveal a person’s identity! – but if it works it works I say! Probably adding pictures and maybe revising once a week might help too.

There’s also a game on my phone / online called Worldle that might help you with country names too?

Anyway, sounds like you’ve made, and are still making, an amazing recovery … it doesn’t stop! All the best to you.

[RobbieLEast in reply to The_Bass]

Thank you for your message. It's good to hear from others who have had the same experiences. I think my friends are getting a bit bored of me asked the names of singers and actors or of people I have known for many years. If I hear a name then I know exactly who they are. I'm also working on places I have been on holiday as well. Still, a lot better than I was originally so hoping it keeps improving 😃

[cg511cg in reply to RobbieLEast]

Robbie - so sorry for what you went through and are going through now because of E. I am aware of E because my husband got it in 2023.

I had to smile when I read that you think your friends are getting tired of you asking who that artist is, or who that actor is..... because I never had E and I wonder the same thing! - mostly with songs though. There are several phone apps that will identify song/artist. Some identify lyrics. Others let you turn on the mic and hum a tune and it will identify it. Look up some of these: SoundHound, Musixmatch, Google and Shazam, tho I think Shazam is only for iphones. It's a small thing but it may be rather empowering to not have to ask your friends all the time!

Best in your continued recovery!