memory loss

[Makbil86]

I have lost my memory after herpes encephalithis. And I am not able to learn.What should I do?

[kitnkaboodle]

How long ago did you get sick?

[Makbil86 in reply to kitnkaboodle]

5 years ago

[Tuesando]

How long ago is it you have encephalitis? Memory often improves significantly in the years after (although it may never be the same as before). The important I find is not to think of what we have lost but what tools we need to use/develope to have better lives with the abilities we’ve got. There is a lot of technology that can help.

Try the App which is called Day One. It’s a sort of diary app where you can add pictures. It’s helps to remember what what you have been up to.

For things to remember for the future, make notes on your phone so it automatically reminds you.

Encephalitis is a cruel illness but the goal is to find ways around what we have lost. Like water running down a mountain. It will always find a way.

[Makbil86 in reply to Tuesando]

I had encephalithis five yaers ago.You are very right. I am trying to this but it is very difficult.Every experience in my daily life has expired.It is very tiring to find them again again and again. Thank you.I looked tha application you said but this is for iphone or apple. Do you know for android phones?

[Seewatching in reply to Makbil86]

My husband had herpes encephalities three years ago. Since then he had been losing memory and hard problems on reading.

Doctors say Dementia (???) is getting to be installed and started to prescribe Exelon 13, 3 and Ebixa 20 mg.......

He lost one of the most important things he used to do - Reading!

He says he doesn't get the meaning of what he reads and needs to go backwards lots of times. This way he doesn't want to practice it.

Desmotivated, he closes the eyes and sleeps........

I don't know what to say.

Are the doctors doing their best? I do believe they are, but...

My husband is 75 years old and has already done not only some CTs and MRIs but also PETs which point to that kind of diagnosis.

So who am I not to believe that is the right way to treat him?

God knows and I have to be prepared to accept.

Rather difficult, indeed.

[HSE_Survivor in reply to Seewatching]

I used to be an English teacher, and 11 years after diagnosis I still find reading new fiction a challenging ordeal rather than a pleasant task .

But I’ve found that I can manage to re-read my favourite books from the 80s and 90s , as their plots are still there in my long term memory . I’ve enjoyed reading my old Stephen King stories - especially ‘Salem’s Lot’, where the characters checked to see if a dead body was a vampire by telling the hospital they were checking to see if the corpse had signs of encephalitis! 😊

It might be worth trying reading your husband’s old favourite books with him?

[Seewatching in reply to HSE_Survivor]

Thank you very much for your help.Yes, I'll try to do that.

I also was a teacher 😍

I wish you all the best!

Never stop trying new experiences according to your interests.

Best regards

Julia

[EncephInternational Partner]

Hi there, so sorry to hear about this. If you would find it useful to speak to someone we have a support helpline [phone] and email [e-mail]

[HSE_Survivor]

Hi Makbil.

You’re not alone. We all need help after having encephalitis.

I see from your post last year that you were first diagnosed with encephalitis 5 years ago. What support have you had in Turkey since then?

Would it be possible for you to see a Dr to ask what help is available for people recovering from brain illnesses in Turkey ?

If not, definitely contact the Encephalitis International charity. They have a great support team who can advise you. You can speak to them for free via a Zoom/Skype call .

You can contact the charity to arrange a chat with a supporter worker by emailing them : [e-mail]

[Makbil86 in reply to HSE_Survivor]

In Turkey I have doctors but they only give pills,drugs. They pay attention to if I have epileptic attack again.The only important thing is that for doctors.Rehabilitation is not there here.

[HSE_Survivor in reply to Makbil86]

I’m so sorry , Makbil. That must be hard .

The best memory aid I have is my mobile phone . I make the phone ring me alerts of things I need to do throughout the day , such as an appointment I have this afternoon.

I also text myself reminders , such as photos of items that I think I might forget .

[Paula-38]

Hi Makbil86,

I'm so so sorry to hear that you lost your memory and you are not able to learn.

I can well imagine, it must be terrible for you.

However, I had the same type of encephalitis the day after my first birthday, but memory has never really been a problem a problem for me. (only if I was watching TV) but there's so much more to life than just watching TV isn't there? Reading is easier because I'm not timed with that.

I'm good at recognising people's voices, if I haven't seen someone for a long time and they've changed their appearance I may not at first recognise them until I actually listen to them carefully I will recognise them in a different way so I still know who they are.

I'm no different than the average person when recognising strangers but I'm paranoid when I meet strangers. In general there's not much difference between me and the average person really (except I've got disabling OCD and I need people to talk slower) but that's it.

My after effects were

a slow processing speed, (disinhibition I'm still working on it now) but I'm learning things I "should have known as a kid but didn't ". I never had memory loss or fatigue). I wish I was there to help to remind you to do things or when something needs doing or is coming up next or whatever you had already done that you may forget. If only I was there to remind you with stuff like that, try to imagine that.

I didn't have them. That's the easiest way to put it. I have suffered from paranoia, clinical depression, (anxiety & disabling Obsessive Compulsive Disorder - OCD I'm still suffering from now) .

My social skills were one of the most difficult situations for me for most of my life. There are allsorts involved in making conversations, initiating conversations, keeping track of numerous conversations at once, registering the information, so people have always had to slow down for me, although most of the time they wouldn't. But now, if that happens again and the person can't slow down, I will try and find someone else who can, or depending on the situation I would just try and listen if they are not directly talking to me, I stop and take deep breaths these days when that happens because it can cause me unnecessary panic attacks.

Another thing was being able to talk without stopping and starting in the middle of a sentence.

That improved when I first became an adult, and at least I can talk without stopping and starting, even though I can't talk as fast as I would have liked to without having a panic attack . I have even put that to the test to see how much my talking has improved, but still I can have a slow conversation, it's a huge improvement though.

I have put up several different posts on here about my lifelong encephalitis journey.

I had nothing to lose, but I had to learn the skills I didn't have that should have been there in the first place if that makes sense.

If I had have been like you and I hadn't have been able to learn, what would I have done? Tricky question for me.

Hmm. I think I would have tried to maintain whatever I was able to do at the time, (bearing in mind I was 1).

If I had have been a bit older say about 3 or 4, I most probably would have asked my parents one or two things, if I had forgotten something to ask them to remind me to do stuff and I most probably would have wrote everything down what I had done, what was coming up next and so on, that's what I would have done.

Although I had no needd to.

There was no Internet in those days or mobile phones or nothing, and Encephalitis International weren't even heard of at the time.

It's a bit like me asking people on here what they would have done if they had have had encephalitis first, then they were to grow up with the after effects what might they have done? I imagine would be a tricky question for them wouldn't it?

Instead, I had a developmental delay.

If there's anything I can help you with please feel free to ask me anything anytime.

[Makbil86 in reply to Paula-38]

Thank you Paula, I wish you were here. You want to do this and I am very thankful. You had encephalithis when you were 1 year old ,weren't you? I had when I was 34, and forgot how and what to do in my life. When I looked at my past life, I had done a lot of things. But I can't understand and do now. I

[Paula-38 in reply to Makbil86]

Yes, I was 1.The recovery rate tends to depend on someone's age when they had encephalitis, because it's something to do with how the brain works and functions at different stages of life. I believe the brain starts developing in infancy, and it takes until the age of (at least 25) to fully develop. I didn't have a past life before I was 1 ( when I had encephalitis) I know that might sound a bit weird. I have a bit of a job trying to explain this to others who have had encephalitis when they were a lot older than I was, and some have asked me why my after effects were not like theirs,but that's me.

There has been the odd occasion when one of them grasps what I'm saying, but that's after a long explanation that wears me out to be honest. I imagine it's because it's more common in older children who have already started school but they had to stop, teenagers adults, and the elderly,

rather than babies/toddlers the latter is rare but there area couple of others who had it around the same age as me, not many but they are there.

Apparently the Herpes Simplex virus affects infants and adults differently because of the age of when the brain starts to develop until it's fully developed and thereafter. Apparently encephalitis has different after effects at different ages because of this.

Dr Ava Easton has put up something on the Encephalitis International website about how the brain works, both when it's healthy, and when it's injured.

Ok, so your brain was fully developed before you had encephalitis, whereas mine was just starting to develop, apparently that has a lot to do with it.

If I had have been like yourself, the first thing I would have done, I would have asked my family some questions, and I would have wrote down their answers. The questions I 'd have asked would have been, could I see any letters about my medical history, school /work/higher education (if applicable), any family photos from the past, and I would have asked my family to write on the back of photos the place name, the year it was taken , what /who was on the photos, they could write all that info in the back for you.

However in this day and age, there is the Internet, and allsorts of apps, websites attached to the Internet, mobile phones, computers, etc, and Encephalitis International. These things weren't out after I had encephalitis. It really is amazing how technology has come so far now.

Keeping a diary and a calendar are really good ideas, and a daily writing pad to write down everything that goes on during the day or info someone has told you about. I would imagine. These days, you can use your mobile phone calendar, a notes app, Google Assistant, which will become Gemini soon, ( I don't

use it but I'm aware of it). You can just talk into your devices and ask them to remind you about something at a certain time or on a certain day or both, but you can still have a hand-held diary as well . These days you can use your mobile phone to take photos and save them to your email account. That wasn't available after I had encephalitis, plus the same as above applies to having a GPS, to help you get around if you get lost, it's another hand-held device connected to the Internet, meaning it wasn't available after I had encephalitis. In fact nothing was available in those days.

I believe there's a different way to learn called "erreorless learning" meaning it doesn't use your memory as such, instead it uses "perseverance" repeating doing the same thing over and over again until you get it right, I would do this with a family member and they can let you know if you persevered, or to keep persevering, it's OK not to get it right, don't let that stop you trying anything. I know of a couple of people who have the same problems as you, where they can no longer learn. Encephalitis International host Zoom meetings every month if you sign up to them. They can be very helpful for most people. I seem to be the one helping them rather than me getting any help myself, I don't mind that at all. I enjoy helping out for Encephalitis International l have been volunteering for them for 4 and a half years now. I thought I have the ability to help those worse off than myself because nothing was there forme and my family after I had encephalitis, so I thought I can be here for other people in a similar position.

I probably needed the help the most before I even started school, I was never taught social skills, my parents thought I would automatically learn them myself, which I didn't have the ability at the time, because that part if my brain had not yet developed and that's why I was showing those after effects- disinhibition in particular and people talking too fast - my processing speed. No-one knew what was wrong with me until my OCD was diagnosed as profound and (refractory - prone to relapse), plus my parents were wondering why my disinhibition and processing speed were still problems, although they did not know the medical terms for them, just the socially inappropriate symptoms they noticed and my dad in particular wanted to know why. He asked me if there was a link between encephalitis and OCD, then he told me I'd had encephalitis, and he remembered going to an event in York at the time before it changed the name to Encephalitis Society (before they moved to Malton).

The name has only recently been changed to Encephalitis International at the beginning of this year. My dad asked me to look up their helpline number in the Internet about 6 years ago now, and I have learnt a lot from them that I should have known as a kid, they explained why I couldn't socially interact in an appropriate way.

I do wish we lived in the same town, so I could remind you everything you need reminding about.

I sincerely hope I have been of some help to you. I tried as many suggestions as I know to help you, while at the same time explaining different things to maybe help you understand why and what for. I also shared some of my own encephalitis journey too.

Please don't hesitate to ask me any questions at all anytime. I'm here to help if I can.

[Neuro-Gee]

Dear Makbil, I am so glad you have managed to reach this forum and hope you are getting the same feeling of belonging to a group of others who understand what you are going through and feeling supported. My memory and concentration has been an issue for me since the age of 10-11 when I had rubella induced encephalitis. I think I may also have dyslexia but not a confirmed diagnosis. In the last 3-4 years I have been on survival mode because my work situation is horrible. My anxiety levels sky-rocketed and in a very depressive state. The memory and concentration issues have also been exacerbated. Losing most of your memories, not being able to remember and losing focus every few seconds would drive anybody crazy. Irritability, anger, chest pains, guilt, embarrassment etc are all new issues for me to manage but I can say being part of this forum has helped, counselling , walking and reading is also helping. Life won't always be easy but please try not to feel guilty, embarrassed, broken because it's not your fault and you can contribute to this world 🙏

PS I might of replied earlier so please forgive me☺

[Makbil86 in reply to Neuro-Gee]

Your reply is very important because you are very concious of this it's enough for me.Thank you.My feelings are not on my hand. I wish I felt viceversa

[Paula-38]

I agree with Neuro Gee, I have also had concentration issues and things like clinical depression in the past, my anxiety is sky high most of the time because I have got profound Obsessive Compulsive Disorder -OCD. I tend to function better when Im calmer, although it doesn't last for long before my OCD is triggered again. If I'm talking to people who talk too fast, that also tends to give me panic attacks.

[beachy1980]

Hello 🥰 I’m sorry to hear that you can’t learn. It’s 10 years since I had encephalitis and although my memory is impaired too if I do things over and over again they eventually stick somehow. I have to continue doing them though so I have reminders all around my house and on my phone. I hope that something can help you too

[Tuesando]

I had a look at photo diary apps on Google. There seems to be many and some of them are free.

My partner and I simply take lots of photos. When we go somewhere or meet someone. It’s helps looking back