HSE

[PatMadawg]

My dad suffered from Herpetic Encephalitis back at the beginning of the year, spent a month or so in hospital receiving treatment.

His memory has suffered and cognitively he has been up and down since, and mood seems to be deteriorating more recently, we're relatively new to everything and working things out as we go however I am curious to find out if it is a common side/after-effect that he doesn't seem to fully trust he is 'better' - as in clear of the actual infection - he has had the all clear from doctors and the neurologist after a follow up visit but we have had multiple trips to the doctor and a couple to A & E where its tended to be nothing but obviously we're not in his head to know if its serious or not.

If it is quite a common after- effect then any sort of advice on how we can help him, trust his brain i guess, would be much appreciated.

[GreenBamboo]

Hi PatMadawg, I am sorry to hear your dad has been so poorly.

From my experience it is really difficult coming to terms with what happened to me. I have gone from being a healthy person to being knocked sideways by a serious illness that I had never even heard of and it has rocked mine & my families world.

From believing that I was healthy & trusting my body to not knowing when it could let me down is difficult to come to terms with.

Coupled with feeling so unwell in so many different aspects of 'me', confusion, fatigue, dizziness, tremors, clumsiness, drifting etc it is really hard to not worry about every new/different symptom.

The doctors tell you that there is no scarring or inflammation and yet this is at odds with how you are feeling.

What really helped me was a conversation with a gentleman at the Encephaliitis Society who told me of the likeliness of a relapse in the the type of Enc I had (meningeoencephalitis). This set my mind to concentrating on believing that the worse was behind me and I COULD get better.

I have moved forward since then.

Everyone's recovery is different but I hope your dad can gain the belief that he can move forwards soon

[Paula-38]

Hi PatMadawg,I am ever SO sorry to hear about your poor Dad.

I had HSE back in the 1970's just after my first birthday, I have suffered with my mental health in various ways like Paranoia, Anxiety, Depression, Obsessive-Compulsive Disorder referred to as OCD.

I seem to have a good memory because apparently my brain had just started developing, but I could never follow a storyline which I think is called "delayed memory " or say I were to meet someone I haven't seen for years and they changed their appearance and look like someone else I might get mixed up but I can recognise their voices. My other cognitions are :-

I have poor attention span, my processing speed is last, apparently I have Executive Dysfunction so keeping up with conversations people talking fast and/or talking over one another can be too overwhelming sometimes especially when I have asked my cousins to slow down a they carry on , and they think I''m deaf because I say slow down or say that a bit slower. This happened at another cousin's funeral last week. I struggled to keep up with one at a time . If two people are talking about the same topic slowly that's OK but often it's the opposite. I think if I ever meet them again I might take a notebook with me because of all the different conversations. Enough about me for now.

I am well aware that adults who get this type of encephalitis usually have memory problems which apparently is one of the main after effects but mood wise I may share something with your poor Dad.

I can understand what you mean by "trust his brain". I often have this when I want tovsay something but something out of character comes out rather than what I want to say or because once I didn't know what I used to say was "out of character"or "uncharacteristic" so nowadays whenever I'm in public I just keep my mouth shut and my Dad prefers me to do that anyway. It's only if I can't avoid going out otherwise I'm housebound with OCD.

Please feel free to ask me any questions anytime.

[Ocean96]

Hi there,

I'm so sorry your family has been through so much this past year.

Encephalitis and neurological conditions can be very deceiving. My MRI shows no brain damage however my neurologist says I have a brain injury even though it's not visible. The symptoms and side effects of encephalitis are the key factors of seeing how encephalitis has affected the person.

The Encephalitis Society have really informative fact sheets describing how the after-effects of encephalitis can present - encephalitis.info/Pages/Cat...

I'd also highly recommend getting in touch with the Encephalitis Society. My family and I did when I first came out of the hospital and they reassured us that what I was experiencing was normal after having encephalitis and they provided us with tools and advice on how best to manage and adapt to life post-encephalitis. encephalitis.info/support

All the best

[EncephalitisSupport Administrator]

Hi PatMadawg,

We are sorry to hear that your dad hasn't been well.

Cognitive changes are a common after effect of encephalitis. Following encephalitis, an individual will experience changes in mental abilities to varying degrees and, in turn, may have difficulties in their everyday activities. The pattern of cognitive impairments following encephalitis will be different from person to person, depending on the brain systems affected and the type of encephalitis. A neuropsychological assessment is recommended to determine the pattern of cognitive changes following encephalitis.

The following link has more information about the after-effects of encephalitis:

encephalitis.info/Pages/Cat...

Please do not hesitate to contact us for more information and support. The Encephalitis Society's support team are here for you, and we're always happy to help. Email: [e-mail]

[Paula-38]

I totally agree with EncephalitisSupport.