I care for someone who has LGI1 Encephalitis. He’s coming to the end of his second year of recovery. Mentally he is doing well. A few minor cognitive problems, memory here and there but generally not too bad. He had some neuropsychological tests in the summer and they said he performed as though he’d never been ill.
His problems are physical. His mobility is very poor, he can’t walk for more than a few steps before he has to sit down, his balance is also poor, he has to hold onto something when he walks. He is very weak. He’s very tired all the time. He sleeps a lot. He has tremors in his hands. The symptoms are like Parkinson’s but I am told it’s not that. Doctors are stumped. They just said ‘let’s see how it goes’. He took anti epilepsy drugs so they were stopped in case it was them but that made no difference. He is taking an anti-psychotic which is being reduced.No difference yet.
Has anyone else suffered in this way? Has anyone else had these mobility problems? Thanks everyone.
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SandalE
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Hi Sandal, sorry to hear of your friend's situation. All I can offer is my own experience. When I first came round after my last seizure and induced coma I had forgotten how to walk and some other basics like shaving. I used a Zimmer frame for a day or so and made rapid progress eventually moving on to holding onto doorknobs, beds and random furniture items.
I gravitated onto walking up and a down a quiet ward for an hour a day. This helped me sleep, enabled my metabolism to function more effectively and was a great mood changer. Surprisingly after the first 20 minutes or so the hour passed quickly and when the hour was up I felt like I had only been walking for 5 minutes. I guess this helped regain fitness and took my mind off my situation. Suicidal thoughts kept popping up and I was wondering what the most efficient method was.
When I got home I found myself extremely tired and could barely walk to the end of the street. Two days rest were needed after any trip to the GP and the shops were beyond my ability - all very dispiriting. Anti-depressants and suicide meds were a help to keep up motivation and focussing on positives like flowers, reading, and sitting in the garden were vital. World news etc. were best avoided.
My wife and I walked around the local area every night eventually managing a mile or so. After about a year we gravitated to going further afield and taking car trips. Random dogs and cyclists were my bugbear and several times I had to abandon our walk and retreat back to the house in a state of panic.
It's very hard but going forward is the only option and each day it gets easier as long as you ensure that you manage to achieve a positive however small. It's a different life living with Enc. I can no longer taste most foods, yet used to enjoy cooking and baking. Sequential tasks are a struggle even changing a tap washer would take a day of careful preparation. Ginger biscuits are about my limit as I can't taste them now.
But again the only way is forward and being grateful for small progress. Things will get better if he/you try. Best Wishes, G2
Thank you for replying. It’s comforting to know that progress can be made and thanks for your encouragement. It’s strange though that he’s far less mobile now than he was six months ago, he’s gone backwards. He lives alone. I visit him two or three times a week and that time is spent cleaning, shopping and hospital/doctors appointments. Not much chance just to try to go out for a walk, no time for ‘pleasantries’. The neurologist just said ‘Let’s see how it goes’. I guess that’s what we’ll have to do.
Seems you need some help. Your GP should be able to refer you to a social worker who will know what to do next. It made all the difference to us - suddenly there was a rehab team with physio, psychiatric, psychology and other experts getting involved.
It sounds like he has given up. There is only so much you can achieve. If you try and involve him in the tasks and decisions and he isn't interested at all and he is on all the meds that help with mood, you may have reached a dead end.
My wife does all the admin, blue badge and Attendance Allowance (£300+ a month) applications - I can barely remember what I had for breakfast. It's tough for you and him and Enc. recovery can take years at best.
thanks for that. We have a social worker…. She pops up now and then when the wind is in the right direction which is hardly ever. I think you were very lucky. We have had nil rehabilitation. I’ve tried, approached different people, different organisations, sympathetic noises but no help at all. Nothing. Nada. Zilch.
I managed to get hold of the social worker today. I had a long rant. She was taken aback. She has agreed to put my friend on a list to see a psychologist (it's vague on how long the list is) and she is going to go and see him and talk about a few other things. She doesn't want me there... wonder why?
I am going into my second year of recovery from Viral E from unknown causes, I have balance problems still but not as severe as I was. I went from a wheelchair to a walker to a cane. I have fallen down more than a few times. Physical Therapy was a lifesaver for me. Daily walks are a must. I remember while in the hospital counting how many steps I would make. It started at 5 and then when I was discharged 2 months later I was counting laps around the ward. I was released from PT earlier this month, because of insurance saying it was " Not medically necessary".
I also had a Parkinson's like tremor in my right hand. My neurologist prescribed me a Parkinsons medication called Amantadine. It really helps with with my balance. And the tremor is just about gone.
I also see a therapist who has helped me learn to cope with the frustration, anger, sadness,sense of worthlessness, etc. I could go on but you get the point. You are amazing by helping out. I couldn't have done it without the support of my family and friends.
Try not to be discouraged, Recovering from E is a constant tug of war, you feel better and think you are doing great, then you fall and split your head open. ( I did this)
Hi there. Thanks for your very helpful reply. I think you may be right about the walking. When I visit him I try to get him out and walking but he lives alone and doesn’t feel confident to go out on his own when I’m not there. I’m going to try to get him some physio but it’s so difficult to get a referral. I’ve asked for counselling for him but I’m up against a brick wall for that one. Our NHS is wonderful but there’s not enough money to go round and mental health services are suffering I’m told. It seems like we are low priority. I’ll keep trying. Thanks again and good luck.
There are already a bunch of great comments here, so I’ll try to keep mine brief.
Wow, that’s incredible he performed relatively well on neuropsychology tests. I failed everything and probably would again if I took them now.
I have mobility issues as well, but they are a bit different. I have a severe movement disorder from E, including hyperekplexia, ataxia, myoclonus, etc. I had to relearn how to walk, and I still walk with trekking poles and sometimes use a wheelchair. I try to walk outside with a family member every day and have worked my way up to a consistent 1.5-2 miles per day.
In-patient therapies were somewhat helpful out of hospital two years ago, but not really anymore for me (see my recent post for more on that). I’ve found that a stable daily routine is more helpful than any dumb suggestion from a social worker or physiotherapist. What we do *every day* makes the difference in the long run—and I’d argue that two years is still really early for E.
Hi, thanks for replying. You’ve had a lot of unpronounceable things…. I need to look them up. I like your comment ‘dumb social worker or physiotherapist’ . We had a physiotherapist visit. I had tried for ages to get this. She handed him a pair of crutches and left. Haven’t seen her since. I’ve asked for counselling for him, I’m not getting anywhere with that.
I wonder if I am trying too hard. I agree that it’s early days. I worry too much.
You’re trying to help your friend, and there is deep goodness in that. Maybe encouraging him to try to do one thing like walking a little more every day would be helpful. Walking to the wall, to the end of the house, to the end of the driveway, to the mailbox, and so on. Maybe he’s stuck at one of those goals for a week or two, but always trying to move along. But, in the end, he has to want to—you can’t force him.
Honestly, I have cut my medical team to only a few essential, truly helpful physicians, and I don’t see anyone else. I’ve found that the next suggestion or appointment or even drug won’t be a game-changer; the hard part is figuring out when that point has arrived, then starting the harder work of incorporating two years’ worth of only the good suggestions into a daily routine that supports long-term adaptation… I was going to use the word “recovery,” but I think that’s a deceptive concept for a lot of E patients. There is no going back to the “old life.” We need to learn how to manage conditions and disabilities and maybe, just maybe, the effects of the brain injury will subside in the many years since illness, as is the case for OldGnome and Wygella .
I think a major hurtle is the individual realizing and accepting everything I said above. It took me over a year, and some days I still get really angry and sad.
Thanks. That’s really helpful and has enabled me to put things into perspective. He may never be ‘normal’ and we need to come to terms with that. Thanks again.
I am grateful you posted. I had this as a child. I have memory problems, hand tremors and I am unable to walk in a straight line. I fall over and my legs go to lead. I also sleep forever but my get up and go… is very short lived, then I am exhausted. Bless themx
When it first happened I couldn't t walk and when it became easier still had balance issues and pain down left side of my body. Couldn't walk far without being exhausted.I had lots of different support from osteopath and put on amitrptolene which helped a lot.Good luck.x
I really struggle with fatigue and mobility too - I find that exercising helps both. I can't run outdoors because I feel unsafe so I run on a treadmill so that I can hold on - I am doing the 'Couch to 5k' programme at the moment. I do feel better. I haven't started them yet (:O) but there are some mobility exercises on you tube that I want to try too!
Could he maybe join a walking group maybe? That is my plan once I feel safer with my mobility.
Hi, thanks for replying. He can barely stand up at the moment so walking or running for him is difficult. Definitely something for the future though. Thanks again.
Oh I’m sorry- would mobility chair exercises help maybe? Just trying to think of alternatives- I wasn’t able to walk at all at first. I really hope he can find something to help him. It must be so frustrating for him!
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