Hope everyone is well , yesterday had my first actual meeting with neurology doctor from the hospital , and after my mri scan in January 2022 it still shows some swelling in the right temporal lobe area but is improving slowly , its nearly been 1 year since I was admitted to hospital in April 17, hopefully the swelling continues to go away , I beleive I will have another 2 mri scans this year summer time and then again winter time, overall I genuinely feel much better albeit with a few problems like a random chemical smell every so often that makes me sick the occasional headache , anxiety and stress which have been taken mirtazapine for, and now after 7 month I have an appointment for pip later today for an assessment, absolutely bull in my opinion , anyway have a brilliant day folks
encephalitis recovery update - Encephalitis Inte...
encephalitis recovery update
Slow but steady does it. Which is soooo frustrating I know. Every step forward is a triumph for us remember!
Hi HC, thank you for your update and positive news. I've read a few times that a full recovery is possible after a few years. You sound you are on the way.
Once you know which parts of the brain that are affected I guess you can start to track what is changing as you recover. There is lots of in formation on the right temporal lobe and what it does on the net, including videos.
"The right temporal lobe, which is typically the least dominant in people, is associated with learning and memorizing non-verbal information (e.g. drawings and music), recognizing information, and determining facial expressions."
I don't know if that matches your experience. You can look up your medical records online with the consent of your GP. I think I will have a look and start to get involved and keep up with my recovery in a more involved way.
What is 'pip'?
Best wishes, G2
Good morning, yes this is definitely interesting, my neurology doctor let me see my ct and mri scans from first one till the last one in January, that was an experience, she said given the original amount of swelling I did not look how they were expecting me to look, originally the ct scan the very first showed a dark matter which they thought was a tumor clot , until the mri was done, given I am just getting to the around the 1 year anniversary things are relatively well just apart from a few minor niggles, the periodic random same smell that induces regurgitation, thankfully thats like a Full moon and not all the time, I do get mild headaches most of the time, some I beleive caused by the encephalitis and some caused by a weird after affect teeth clenching bruxism, along with the associated pain that brings, the anxiety and stress is unbelievable never felt anything like this before, fortunately one of the doctors at my local surgery has been really good and in a way took me on as her patient even though I'm.named under a ďiffernt doctor at same practice, she does keep in regular by weekly contact and helps and works with me to resolves or reduce certain issues, right now after working through different tablets from amatriptalyn, sertralin nortraline , prozac we have eventually found one that helps and with no silly crazy side affect mirtazapine albeit does increase appetite a lot, but it is definitely doing something, still not solved but I think it is helping , the clenching of teeth has reduced, can only hope onwards and upwards and hopefully no seizures, well not had any through this while thing so far so hoping it all stays that way, I am thankfull that my partner is really understanding of some of my issues and helps and the kids although young are great with the understanding of it all, slowly my life is coming back around to some normality some things are back to a normal, I can go out and drive again which I am keeping myself doing as much as I feel I can, but I do get some bad days still though that I expect, thankful I found this site as the help I have got from here is brilliant especially people here know what you are trying to explain albeit at times you have no words to find, plus side pip assessment which is personal independence payment , which was originally known disability living allowance, was done yesterday , surprised that actually went really well my neuro psychology dr and neurology consultant dr with occupational health from the brain injury unit helped with the paper work for that and gave me letters to include with the forms, hopefully a outcome soon , and eventually in near future get my big butt back to work in some way 😀
Hi HC, thanks for your reply. Enc is a certainly a hard road with maybe some good views along the way.We get Attendance Allowance and Carer's Support, which helps with transport costs to appointments etc. I haven't asked about PIP, will have a try. I have mapped out 3 walks round our quiet area with the help of YouRoute and if we combine all three it comes to a mile and three quarters. We did it last night and I was OK.When I was first discharged I had to rest for two days after walking to the end of the road and back!
I'm still stammering and stuttering due to anxiety and have been referred to a speech therapist who may be able to help.
I have to take things easy so as to not bring on an anxiety episode. I joked with one nurse that the final assessment will test how I cope with a mosh pit (see Ytube)
youtube.com/watch?v=ySPlanM...
Best Wishes G2
Good afternoon, the walking part for me was hard, I found it difficult, for nearly 5 month after I was discharged from hospital I barely moved at all , mostly sleep, when I did start to get mobile again the legs were like numb jelly for a while so being outside was kept to the local area about 1000 feet, the wife helped so much with this at the time the whole sensitivity to lights sounds smells along with light headed feelings was strainful, eventually around the 9 month mark I was able to take myself short distances and eventually got to be able to walk to the bus stop to meet the wife coming home from work, it was a big achievement at the time and was stressful, with all the weird thoughts of what if this happens etc , that slowly progressed again over time, and just now I can go out and enjoy a 1 mile gentle walk myself, maybe a little longer when the kids and wife is with me, sometimes its all good and then at times I'm out of energy for a day or two, the struggle of going into a shop for the first time after all this was exhausting just with all the activity going on at once, thankfully things improved and I think they still are, the meeting with my doctor she said since the last time she seen me I had improved based on how I was talking as at first I was talking alot and faster while jumping all over different conversations in one go, , through the help of neuro phsycology and occupational health I was able to obtain the concession bus pass, and parking badge, its not alot but it sure has helped myself for now, neuro physiologist is still working on going and trying to return me to fitness activities, , compared to how I was going up stairs at the start with the feeling of numb no muscle power in legs was scary, I do look forward to when the day and time comes I can attend live concerts again, the way iv started thinking of things is that every little helps just now and accept the fact that not everyone understands the concept of what has happened or the after affects and how they affect every one who has similar, I found the encephalitis sc society was brilliant I didn't know how to explain things when I needed dental treatment as an emergency, they sent myself out a template letter explaining how the after affects made me feel and how that certain smells and sounds and such I could find hard,and stated a few ways which may be of benefit in situation, my dentist when I gave him the letter was more than understanding as that took alot of undue stress and worry from myself,
How did you find the getting out and active part again ?
My life started with Encephalitis first, so I haven't experienced a life before 'E' but I do understand how it can affect everyone differently and at different ages has a lot to do with it. All I ever knew was Life with Encephalitis, but at the time nobody had ever mentioned what the long term after effects were or brain injury or nothing. I knew I was epileptic that's about all. Now I'm 28 years free from seizures. My story will hopefully be on the Encephalitis Society soon within the next month with a bit of luck.However I have always been a very anxious person and that I have always been on disability benefits and still get them.
Wow HC, that's a tremendous response, very moving and vivid. I could almost see you in my mind, dealing with whatever came along. Phew, I need a lie down to rest. 5 months is a hell of a long time to be immobile.
A walk of any distance is a great achievement after Enc. and also one of the best ways to get back in action. We are walking every night these days but at the start it was a struggle. I use a rowing machine if the weather is poor but find a routine very difficult to follow.
Talking of live concerts I went to see Slash perform in Leeds before Enc. and have no memory of it whatsoever! My main excitement these days is playing dominoes. I would probably not cope with a bus ride. We're looking into getting a blue badge. Crowds would be a struggle. I'm tiring now. Ha.
Best Wishes,
G2
Reading throughout all these makes me realise actually how strong we all are even though I don’t necessarily feel it! I can remember 4 months in trying to get out of the car as my husband had taken me for a drive and I couldn’t remember how I got out or how to walk. I used to watch people walking so I could copy what they did! Now I walk freely and easily although I do have odd weird moments when I have to concentrate a bit more but really not often.
