This might be long. Apologies in advance. I live in West Yorks, UK. I support someone, a close friend, recovering from LGI1 encephalitis. He was diagnosed in February 2021 after being ill for 16 months. He was completely psychotic and was sectioned before he was diagnosed. He is just starting his second year of recovery. He had IV steroids at first then oral, he is still taking them, but no other treatment. He is seeing Professor Irani in Oxford so he obviously doesn’t think alternative therapy is required. My friend still has some cognitive dysfunction, he can’t plan or organise, he lives alone. His house is a tip. He piles stuff up and has no idea what to do with it, there are boxes everywhere. I’ve tried helping him but it just reverts to chaos quickly afterwards. His memory is not too bad. He does get lost when he goes out. He isn’t driving yet. He is ‘slow’ in movement, in his thought processes and he struggles to walk.
He has carers twice a day to give him the medication. We can’t trust him to do that. He has been known to bin the steroids when no-one is looking.
He has had no other support at all. Nothing. Zilch. Except what I can provide as a friend. He has a mental health social worker but she rarely visits. She rings me to find out what is going on with him. I contacted the encephalitis society but they weren’t able to offer anything except online. I asked about a befriender but there was no-one available. My friend doesn’t have broadband or wifi so he can’t join online meetings. He struggles to even use his smartphone. As I said before he lives alone and I worry sometimes he is lonely and isolated.
I suppose my question is..What are other people’s experience of support? Is there anything I have missed? Is there anything out there? Would it help even? Is he better off just coping on his own?
I’d appreciate any thoughts. Thank you.
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SandalE
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Others here will likely have better advice regarding medical solutions, since I do not live in the UK and am not familiar with health care particulars there.
I will try to add some helpful tidbits based on what I have been through, though. Your friend is just beginning year number two of recovery. In my recovery journey, that was a very difficult time and for the most part, I was also jumbled up and could not do very much for myself either. And no, I did not keep my house very much, if at all. At the time, my fiancee and her son were still living with me and took care of such things.
So, based on what I went through, if your friend kept a tidy house before getting ill, and is no longer doing so, that is to be expected, to some degree. With all the changes going on in the brain as it heals after such a trauma, one cannot do some of the basic things that others do. The fact that he needs to have his medication given to him, is a sure sign of that being true.
He may indeed be feeling lonely and isolated. In my situation, the fiancee/son left here so I now live in my house alone. I do not have friends who visit me, and only a couple of them will call from time to time to see if I am still alive, I suppose. I live a life of solitude for the most part and do what I can to keep in good spirits.
I keep my doctors' appointments, but the level of support here is rather low and to some degree, is on an "as needed" basis. I do have people to call and talk to if I need them but nobody is checking on my well-being at all unless I make some calls and make others aware of my situation.
In my opinion, this is the way it has to be, to a degree, if one wishes to live independently. The alternatives are a nursing home, or at worst, to be placed in a mental health facility. To me, independent living is worth whatever "costs" may accompany it. As long as I am able to, I will live independently and deal with the solitude and whatever else I need to.
Having you as a friend is one of the best things he has going for him, even though he might not know it or appreciate it, in his current state of mind. I applaud your steadfast allegiance to your friend! Not many would be as kind as you!
In my case, I didn't really start getting much better until year number 3. Instead of writing even more about my saga, I will suggest that you simply continue to be the great friend that you are, and wait for any improvements as your friend's brain continues to heal and "rewire" itself. Lots and lots of patience will be required, though!!
My reply is quite long, but sometimes, it is needed!! Please feel free to write back to discuss any issues and concerns I might be able to provide some insight with.
Hoping your day gets better, and once again, I applaud your being such a great friend to someone who has been hit with encephalitis!
Now for a piece of humour: If by chance your back feels a bit sensitive in two spots, it's probably the angel wings starting to grow!! It sounds like you are earning them!! 👼
Thank you so much for your considered and helpful reply. My friend is fiercely independent and is struggling with it at the moment but he manages and, as you say, this is better than the alternatives. I keep telling him it will take time and sometimes he can accept this but other times he is impatient. He is improving, but very slowly, and we need to come to terms with that. It’s good to get other people’s experience and advice. I appreciate your input, thank you. Must go, I need to oil my wings!
I'm ever so sorry to hear about your poor friend. I live in Merseyside UK. Thats absolutely terrible that he was sectioned. My heart goes out to him. It sounds to me that your friend needs to see a Neuropsychologist who specialises in all aspects of cognitive function. I understand that it is a big sorry for you.
In my case I had Herpes Simplex Encephalitis the day after my first birthday back in the 1970's so my story will be completely difference with regards to learning new things because children's brains function differently they kind of change for the better as they get older.
However, my processing speed is very slow, and multi tasking is not very good due to a medical term called Executive Dysfunction thats what your friend is struggling with, I have poor attention span, anxiety and Obsessive Compulsive Disorder.
In my opinion your friend needs someone there all the time to keep an eye on him, maybe the carers could come in and stay with him to help him with the chores he is struggling with. Some people go into a Neurorehabilitation unit or have regular carers coming in.
You can leave the Encephalitis Society a voicemail and they will ring you back soon as possible, they are brilliant like that.
I'm thinking maybe you could join the online meetings as a carer if you wish to.
They have a weekly Thursday afternoon meeting at 4pm til 5, (they are good) plus every month on a Wednesday evening at 6pm for carers,
others for people affected directly/indirectly by Encephalitis which I join as well as the weekly ones. They are starting to benefit me a bit more now after 2 years of joining them, which is the length of time I have been an information volunteer for the Encephalitis Society, although I first joined up 3 years ago. I'm not medical but I hope you find this helpful.
Please feel free to ask me any questions anytime. I am more than happy to help everyone if I can.
Thanks Paula. The carers asked for more time. It was refused. No money to pay for it. This seems to be the problem. Every time I query whether something might be possible I get told “there isn’t the budget for it”. Sadly my friend can’t afford to pay for it himself. He was on a list to see a neuropsychologist but that hasn’t happened yet, they said he wasn’t well enough….(?).
Did you know that your friend can get help from his local council and social services, they can provide free care for him. I suggest that you look into that more in depth.
Apparently Neuropsychologists usually have waiting lists. Meanwhile try to bbe patient with him and keep me posted when he manages to get to the top of the waiting list. Has he been waiting long?
I'm absolutely disgusted that your friend is not ill enough. To me it sounds as though he is very ill and that he is being palmed off, well thats not on. Is there an Advocacy Hub in your friends local area, you can complain to? They might be able to help.
Hi Paula. I don’t think I was clear, sorry. The care he gets is free from social services. They won’t increase it. He is not WELL enough for neuropsychology apparently.
Just a suggestion I don’t know where you are in West Yorkshire but you might wish to contact the Wakefield branch of Headway as they are very helpful/knowledgeable about brain injury aftercare and support. They might be able to point you in the right direction for additional support for your friend. My husband contracted HSV encephalitis in June last year and we have found them knowledgeable about the after effects. Best wishes
Thanks. I did that. They recommended one to one support for a few hours a week, at a cost, but, again, there was no funding available. They did visit a few times last year for half an hour or so but not lately.
Hi SandalE, I'm almost a copy. I live in Leeds (the pearl of the North) and am 72. I've been diagnosed with auto-immune enc and Hashimoto's enc perhaps from an insect bite. Sectioned while in hospital for resisting staff and on meds for over two years, steroids, anti seizure meds, etc.It's a long and rocky road.
I think hoarding is a defence mechanism to hide and reassure oneself and also maintain control by opposing change. Creating a routine and maintaining normality helps to avoid anxiety. Hospital life is good for this.
I think if I lived on my own I'd let a room out to a nurse for free in return for a little reassurance etc. In a house full of junk this may not be an option.
My loving wife deals with the shopping, cooking, driving and appointments. I can't be relied on for anything. I have several spine fractures so tend to be in a fair bit of pain once I start to move about or exercise.
My meds get delivered in a 'dossette' box with each dose in a blister pack - this helps a lot - plus vitamins and anti-constipation sachets (due to my morphine). All very complicating and easy to make a mistake.
Tea and biscuits help a lot plus protein bars and drinks. At least we're in the UK with free prescriptions for the elderly, otherwise I'd be stony broke. It's all a big contrast to my earlier life (see earlier posts) and hard to get used to.
Self-harm thoughts are inevitable but mentioning them seems to bring the help in. Rehab was promised within 6 weeks but in the end it took much pressure and over 18 months to arrive. Psych rehab and talking therapy is very slow and one-to-one sessions can have slow progress and are costly.
We're down to see Dr. Irani too - not sure how he can help really - but we were getting zero support when we thought to request an appointment.
Understanding enc, its symptoms and the brain helps to gain a perspective on things and manage the new life.
You should be eligible for attendance allowance (about £100 a week) plus carer's support in the form of classes, therapy, time off etc. to assist you personally.
I use a basic phone - can't get the hang of smart stuff. My laptop gives me access to lots of old videos, alternative news and enc. research on the brain.
(I find books and music a good way to spend time too.) Things are moving along research-wise as although it's rare, enc is a massive drain on resources, slow to heal and destroys careers and personal life.
When the psychology nurse arrives for one of my 2 hour! chats she will usually bring along a student. The same goes for my mental health nurse too, they are all part of a psych/mental health team, so share info and ideas. They all seem very caring and supportive, my wife benefits too.
I guess having an enc patient to use as a training specimen/aid is useful for the teaching hospital side of the NHS. It's such a rare condition and patients are scarce so we should be charging them! Free limo rides and holidays would be a bonus too. We'll have to form a union 'Bonkers but belligerent'.
As always I hope this hasn't drifted off course, has been a help and good luck, good vibes etc. G2
P.S. Ah yes, just been out in the garden tidying up after the storms. Quite a good way to spend time, rearranging things a bit, filling bird feeders and bird bath too.Whilst out I remembered that after tea my wife and I play dominoes or patience. Have tried draughts but I found it too adversarial and combative.
Cards and doms helps with colour recognition, ranking ability, number recognition, coping with chance, defeat and victory.
Going back to previous post, I was quite detailed in my descriptions of self-harm methods, hanging drop heights, railway line options, home made guillotine, gallows or just self starving, stopping meds etc. This seemed to help with bringing support. Plus I'm 72 and mortal, what's so wrong with moving things along a few years? I wondered ..... But on reflection the Infinite can wait awhile - it's used to it. Ha ha.
I'm always grateful, polite, humourous and accommodating when rehab arrives and that makes me more pleasant to be with. Every little helps.
Thanks for your reply. Much appreciated. Rehab? Psychology Nurse? Mental Health Nurse? What are they, how did you get them. They have never been offered to us. My friend was discharged from hospital after 10 days on the stroke ward (he had previously been on a psychiatric ward for 3 months). They took him into the kitchen, asked him to make a cup of tea which he did successfully so they sent him home. There was no follow up arranged at all. I did some research, found Professor Irani and got an appointment. I got in touch with the mental health social worker who arranged carers who visit twice a day for half an hour, make him something to eat and give the medication. That’s it. No other support was offered. I do all the driving, shopping, appointments etc. He’s struggling to cope, he’s exhausted most of the time. He takes steroids, anti epilepsy meds and strong anti psychotics. The steroids are now being tapered.
He enjoys pottering around at home, loves music and watches tv. He doesn’t have anyone to play cards with. I guess it’s a waiting game. It’s a terrible illness.
Sorry about the late response but memory loss and nervous breakdown has been a drag.We had support promised (by Hosp Doc) within six weeks on leaving hospital but none materialized. Calls were not responded to etc.Eventually after complaining to a couple of GPs at my local surgery a wonderful rehab lady turned up, who knew the system, false promises routine and BS etc.
She was infuriated at the delay and rattled a few cages. Then the support came in in singles and teams, psycho, neuro, physio - and counselling still to come.
Apart from her persistence and knowledge of how things worked and which levers to pull, my declaration that for me suicide seemed to be the best option seemed to be a thing that she/they took seriously. They call it 'self harm'.
I had got to the point of calculating drop heights for hanging, designing a gallows (I had spare timber), placing head on railway lines, and considering the rather spectacular method of a home-made guillotine.
Self starvation might work - if I had access to a pistol I would definitely have blown out my brains. But nothing is foolproof and you easily end up still alive but worse off.
The NHS is a cumbersome beast but once it moves things can happen.
But even with full support, the many symptoms of Enc. and their indefinite duration can wear down the hardiest soul.
Short term respite care to get over things in a supportive environment may be better than being at home, if it works.
Have just realized I may have already responded fully!
Could I just ask if you completed any neuropsychology tests and were they any use? My friend is on the list, they are waiting until ‘he is at his best’ before he attends. I sort of think if he is at his best he won’t need them but what do I know…
There are a range of neuropsychology tests for different mental conditions. A web search will give you some idea of what they entail and how to prepare.In my case the tests were useful and gave the tester an idea about which areas of the brain, behaviour and memory might be affected. This enables them to decide which treatment is appropriate.
My tests did not last 3-6 hours as some sources seem to suggest, but were more like an hour.
One question I remember was 'Which do your prefer "Apples or pears"' They are interested in how you answer - not what you prefer, whether you pick the first option or the second is what matters.
Or it could be 'Does horse go with donkey or with cow?' - this will see your capacity for arranging similar things.
I meant to say that I am so sorry that you feel self harm is an option and am glad you are letting the infinite wait a while longer. It truly is a terrible illness. My friend is 69, so a similar age to you. He hasn’t had those kind of thoughts yet. I hope he never does. Best wishes to you.
I am so sorry for the lack of support you and your friend who had encephalitis have come up against. It's terrible but unfortunately very common. I'm so glad you have joined the forum and shared your story. It's so important as someone who is helping a survivor of encephalitis that you receive support and guidance also!
I personally have found the encephalitis society amazing since I got sick. They have provided guidance, support, and a shoulder to cry on for both myself and my family. I would highly recommend the virtual gatherings as you can learn lots of advice and tips surrounding care etc. encephalitis.info/blog/virt...
A good place to start off is the encephalitis societies website which has lots of information such as information for carers: encephalitis.info/Pages/Cat...
Thanks again for reaching out and hope to chat again soon
Thank you for your reply. I’ve been in touch with the society. They offered the on line gatherings but I haven’t tried them yet. They are no good for my friend though. He is not interested at all. Everything is done remotely these days it seems.
I completely understand… it’s difficult with everything remote. I’m unsure where you are based but Headway is a brain injury charity in Ireland/UK. Would this charity be of use?
I contacted Headway last year. Initially they were very good. They came up with a plan for a few hours of one to one support weekly. However it was going to cost £5.5k.We got a ‘no’ from social services. Headway haven’t visited recently. I’ve contacted them but got no reply.
Hi SandalE, I hope you have made some progress with rehab support, counselling, physio etc.. It tends to come in blocks of time - maybe about six weeks. My physio has come to the end of his period and he has shown me some good exercises to help keeping a good posture and reduce muscle and joint pain. Physio helped me come off the morphine pain relief.
Sadly I forget most of the exercises (memory loss) and can't seem to follow a routine. A nightly walk around the block (1 mile) and some time on a rowing machine is all I can manage.
A yoga/pilates video would make a good replacement for the physio but as you know motivation is key and lack of motivation is a big downside of Enc. Completing tasks and organising are also difficulties - hence the untidiness with your friend. If you have YouTube I find music videos from my youth etc. are good. Card games and dominos can also be fun. You could offer these as rewards for sorting out some of his stuff. but even keeping one's own life in order can be a challenge!
I'm prescribed an anti-depressant but still suffer black periods when all the negatives in my brain get together for a social. If your friend has had a hard past these memories may be flooding back, unresolved.
One to one counselling can make big progress and any activity can be a mood changer. If none of these have been offered maybe you should change your G.P. Some can be a bit thrifty with their budgets.
You sound to be doing an amazing job with your friend, so congratulations and kudos to you. Remos (as far as I can tell) and myself are also W. Yorkies, we may bump into each other sometime!
I hope this screed has been of help, not too long and a good read.
Hi, no progress yet. My e mails, phone calls and texts go unanswered. I wonder if I am a nuisance. It seems to me that threatening self harm may be the only way to get attention. Hmmm. I’ve enquired about physio but am met with silence. I’m met with silence about everything. I wonder if I exist….
My friend is a complete technophobe. He doesn’t have wi fi so no You Tube etc. He seems happy enough watching rubbish tv, he spends a lot of time doing that but it calms him and that is good. I am trying to help him tidy his house, one box at a time, he gets upset and stressed if we go too fast.
If you feel up to a meet up some time we would be up for it. Remos too. Thanks for your messages and support. Much appreciated.
A bit late responding. Sorry to hear about the support challenges your both facing at the moment. Doesn’t sound great.
I’d be happy to meet up sometime if your still up for it. I also live in West York’s. Can’t speak for Gandalf of course.
Also, just so you know the Enc. Soc. arrange meetings in the North so you may want to enquire when and where the next one is and maybe we can all meet then.
Hi Remos, I’ve been signposted to a group called ‘my therapy’ who offer rehab and physio. The social worker has to refer and she can’t attend for two weeks. Sigh. I have no idea why he wasn’t referred to them earlier. I contacted the Enc Soc about groups etc but there was nothing except virtual and my friend isn’t interested in those. I can ask again. My friend would love to meet others affected, I think it would help him. Best wishes, keep in touch.
I got a reply from Jon. No planned meetings in the north. One in Birmingham in October I think. They are trying to set up a database of volunteers who may be responsible for organising groups but there is no timescale at the moment. I suspect it’s a way off yet. Ok. Have a good weekend. Take care..
Hi sorry to hear you are having difficulty. I'm in Leeds so there may be different rules here. Should have at least an assessment of your needs and an Attendance Allowance plus Care Support of some sort should be available. One box at a time sounds like a start. Sounds like you must be very patient.Laptops are a challenge for starters. Maybe you could get some things he may be interested in on yours and show him how to navigate Ytube. That may get him going.
Motivation is a really hard nut to crack.
Meeting up may be OK but Health Unlocked is pretty cagey about sharing details I think.
I’m late to this thread because I wasn’t sure I had anything useful to add. I don’t live in the UK.
But I just found this research study for LGI1 patients and their caregivers. In addition to contributing to research that could help individuals with LGI1 in the long-term, you and your friend would get reimbursed for your time. Research teams also usually have a list of resources for the participants. If not, ask.
I saw the study on the International Autoimmune Encephalitis Society website. Have you checked with them? It might be the same remote problems as ES, but it’s worth a check.
Finally, you are very brave to help your friend. Just remember that, in the end, you can’t save or cure him, but you can help him in some ways. Excluding psychotic episodes that require interventions and drugs, patients need to want and choose to improve. I was there. I had to reflect and accept that my life is different now, that I am different now, but that I can still do the best I can. That is exceptionally difficult when one is still ill. It took months for my brain inflammation to subside, and a whole year before I could even start to consider how to properly cope and manage this new life. It has been a humbling experience.
Hi, thanks for this. We have actually already participated in this survey. We did it on Zoom at my house a couple of weeks ago.
My friend is desperate to ‘get back to normal’. He is a little impatient sometimes. I keep telling him it’ll take time. I haven’t told him that he may never be like he was and it’ll be a new normal. He’s just started his second year of recovery. He’s doing ok we think but of course you have nothing to compare it with because it’s different for everyone. He has some cognitive problems, extreme fatigue, mobility issues etc. It’s a truly terrible illness. It’s good to read others posts on here, I’ve seen yours and many others. It helps. Thanks for getting in touch.
That's awesome! Glad you found the survey. Hopefully the research team also gave you resources and ideas.
Yes, I was (sometimes am) the same way, and I experience similar cognitive and physical issues. The path to healing from E is long, winding, and unpredictable. Some (maybe even most) don't "fully recover," if such a thing is even possible. Personally, I don't think I will ever feel like I never got sick, and I sure as hell won't and can't return to my "old life." I just try to do what is best for my brain and body each day and avoid thinking about the future. Some days are more difficult than others. I wish you and your friend the very best, and I am glad you found these posts helpful.
We’ve seen him a few times over the last year. My friend is from that area, we stay in a premier inn for about £60. It’s usually in his clinic, with him, a consultant psychiatrist and another doctor, Dr Binks. My friend usually has a few blood tests, and a neuropsychology test before we see the Drs for progress etc. I know what you mean though, sometimes he seems not to know some of the basics. What I do is prepare well in advance, have all my questions ready and make sure I get answers. I have a good relationship with Hayley, his secretary, which helps tremendously. My friend was discharged from hospital with no consultant follow up at all so I went straight to the top as it were and got him in there. I find Dr I can be quite intimidating but he warms up a bit when you get to know him.
What surprised me was that no other treatment except oral steroids were recommended. No IVIG, no plasma exchange, in fact he said ‘the jury’s out on whether they actually work at all’.
The positive thing is that he is on the end of an e mail or phone call. He always responds if I have to contact him. My friend had a relapse last August and we got an emergency appointment very quickly. I sometimes e mail questions to Hayley for him and he always answers.
That’s a comfort.
I wonder if the key is the type of Enc?
My friend has LGI1 enc which is rare and so is of interest to the Oxford group.
Thank you for getting back, I have two types of Enc, auto immune and Hashimoto's, both rare conditions and I was expecting a more detailed exam/response and for him to have read my case notes.If you have seen him already and are satisfied that is fine. I am still in Oxford recovering from the trip. I deleted my post and will wait until he reports back to my Leeds doctor.
The first time we saw him was about a year ago. Just after my friend was sent home. He studied my friend intently, picked up on things no-one else had noticed. Asked very searching questions, made meticulous notes. He arranged for two MRIs, one brain, one spine, a colonoscopy, chest x rays, took an armful of blood. Couldn’t fault him. Well impressed. He sent a 4 page letter to the GP and the neurologist in Wakefield. He hasn’t been as thorough since but maybe no need. It maybe because my friend wasn’t seeing anyone else, the neurologists in Wakefield weren’t interested, sent him home with no follow up. I am sorry your visit was disappointing, I am surprised. It doesn’t sound like you were attending one of his clinics. They tend to run to a format. Let’s see what he sends to your doctor. Good luck.
That could be it - my wife says I have forgotten some things due to my memory loss, so I am probably wrong. Cheers for getting back - it makes a difference.
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