Hi, I am new here

[teamwork2021]

HI, I am looking forward to reading and learning more about herpes simplex encephalitis. My husband was diagnosed in December 2020 and he just began outpatient cognitive rehab therapy. I am hoping to learn from other people's experiences and get suggestions and ideas to best support my husband.

[Gandalf2]

I haven't had the herpes simplex variety but have been through the mill. (see my post).

Rest, exercise, progressively more complex tasks that strengthen thinking like shopping, cooking soups etc.. Good diet, find positives like hugs, affection, visiting a donkey, dog, cat, animal sanctuary. Board games, playing catch, anything that brings joy and laughter. Gradual remembering/relearning old interests and hobbies.

I can remember telephone numbers but not what/if I have had breakfast - pretty funny. No sense of taste yet and short-term memory very patchy. Can't watch TV but can read short stories. Ah well, not to worry or be too upset, life has its twists and turns.

[teamwork2021 in reply to Gandalf2]

Loved your suggestions/ideas...love your attitude as well! Thank you.

[Trisuitmaker in reply to Gandalf2]

I’m doing lots of what’s said above with my wife Keeping healthy & fit is essential. Exercise feeds oxygen to the brain . I read a book “ When Brains Collide” written by a Doctor

It’s worth a read.. he works with brain injury through concussion. And recommends high doses of Omega 3 & 5. Fish oil as it also promotes brain recovery. Read the book got mine from Amazon.

[Ocean96]

Hi Teamwork2021! Welcome and thanks for sharing your story!

So sorry to hear your husband has been unwell with Herpes Simplex Encephalitis. That must have been so scary for you all. It sounds like he is doing well now that he is undergoing cognitive rehabilitation!

I think from the perspective of someone with encephalitis my main piece of advice would be to reach out to The Encephalitis Society as much as possible which you are doing! They have great information such as this - encephalitis.info/herpessim...

They also host virtual gatherings via Zoom which might be helpful! - encephalitis.info/blog/virt...

As someone caring for a loved one with encephalitis - remember to look after yourself too! You have been through a lot yourself and it's okay to have bad days and it's okay to need to talk about things!

I think your husband will probably be quite tired afterward and may struggle with headaches so it will be important to pace each other along this journey of recovery! You seem like a fantastic, supportive wife and always here for you, thank you for joining and sharing your story with us!

[Paula-38]

Hi teamwork2021, I had Herpes Simplex encephalitis way back in the 1970's when there was no Encephalitis Society out in those days, and it was the day after my first birthday party so I would have known NOTHING when I was in your husband's position. I remember the odd thing from the age of 2 or 3 onwards . Please feel free to ask me any questions about my Lifelong Encephalitis Journey. It sounds to me that you are in a similar position to what my parents were but at the time I was too young to see it from their point of view. I'm pleased that your husband is getting cognitive rehab therapy as an outpatient. I didn't get any rehab or nothing and even today there is still no children's rehab out unless they get the right education which I didn't. Do you mind sharing some of your husband's symptoms to give me a better insight so I can help you (that's what I'm here for).

[teamwork2021 in reply to Paula-38]

He has no short term memory and no memory of past 15-20 years.

[Paula-38 in reply to teamwork2021]

Aww I am so so sorry to hear that teamwork2021 I can well imagine how horrible that must be for your poor husband. I have never experienced that aspect but I can see where your husband is coming from though. That sounds really debilitating, heartbreaking and depressing. I hope and pray that he gets all the help that he is entitled to. I now have a better insight as to what after effects that your husband is suffering from so that goes a long way.

[Trisuitmaker]

My regret. Whilst spending 20 weeks in Hospital I decided to Decorate and freshen up the house Now my wife struggles recognising it has her home. Memory is generally the obvious disability I’ve bought Dementia Clocks from Amazon

I have Dymo labels on our Kitchen cupboards. Toilet doors are painted differently I have a picture on her bedside that says ”you are Home” with our address.

That she sees on retiring and waking.

Try to work the brain her IPad now has several memory games and card games. Delete all communication from it no blue tooth or WiFi. In the early days My wife wanted to ring people even her deceased mum

Hide the door keys. she once got out. Fortunately she has a Dementia watch with a tracker. We were able to quickly find her without calling police. In a very short time she was over a mile from home. Heading for a busy road.

All that said most of the time she functions relatively well she is now making simple food like breakfast and sandwiches big meals are difficult she forgets she has food in the oven. I make it look like she is doing it with hidden reminders “ what are we eating” will bring “oh. I’ve got something in the oven”

Cuddles and a quick kiss helps tremendously I do that a lot..

I could go on and on. If you need anything more drop me a line. I do my best to help

Stay safe look after yourself

[Gandalf2 in reply to Trisuitmaker]

Your support sounds spot on. Mind you don't wear yourself out, take all the available support and focus on the positives. Until it happens people don't have any idea of the impact of Encaph.