I was making good progress with my recovery from Covid inducded encephalitis. I had started to walk again (with crutches and a few steps unaided) but last weekI noticed my rigidity returned and a feeling of being "locked-up" in my body and slurred speech.
Has anyone else experienced this after a period of "recovery"
I am new to this journey and hope to make contact with others to hear their recovery storie.ls.
How far into recovery are you? Setbacks are to be expected, especially in the first couple years. I had and still have a lot of them, but the overall trend should be a gentle upward trajectory with dips along the way. It takes a long time to settle and stabilize into our new normal. Feel free to ask more questions here!
🤍
Kit
Hi Kit
I am particularly concerned about the locked-up/rigidity issue. Have you experienced this?
Eldon
Yes, I have severe movement disorders that cause rigidity (hyperekplexia and myoclonus) and gait instability (hyperekplexia and ataxia). In hospital, I was shaking uncontrollably 24/7 and chattering my teeth (dystonia and also catatonia at some point). I also still have speech problems (maybe aphasia but at least dysarthria), especially when fatigued or overwhelmed. I faint/fall (syncope) sometimes when I stand and stiffen and stop breathing (apnea), causing my blood pressure to drop. Sorry for all of the medical terms, but maybe the words are helpful to you as you try to understand and describe what happens to you.
When do you become locked in or rigid, and for how long? Is there anything specific that takes you into it or brings you out of it?
Thanks for your message.
The locked up sensation is just that when I am asked to move my body or a limb I can control it. But it feels locked. Strange! Speech however (slurred, etc) I cannot control.
Not sure what you mean here—did you mean to say you can’t control movement? Locked as in slow to respond or completely unable to move? Or your body not responding the way you’re trying to tell it to?
I feel locked and rigid but I CAN move my limbs when required. It's a "feeling" not "actual".
Oh gotcha, I have that also. Are you still in the hospital or a rehab center? Once you get home, the extent of any movement disorders you have will become clear over time, and some of these issues will resolve over the next months and years, and maybe others won't resolve. Be patient with yourself!!
Hello eldonlake,
The healing after contracting encephalitis, can take a long time and may not be complete. As Kit said, it takes a long time to adjust to this sudden and new situation.
I am in year #6 since getting "the big E" and find that my difficulties, such as lack of balance, will come and go and for no reason I can detect.
There are a lot of great posts here to read, to see what others have been through. Plus, there are a lot of great resources in the U.K. via the Encephalitis Society, that are not available here for folks like me, who live in the U.S.
Paula-38 does a marvelous job of providing information and links to such help. Hopefully, she can provide you with a tidbit or two of useful information.
One thing I would recommend, is having TONS of patience with/for yourself, too. This is quite a difficult journey and I truly hope you can get to the point of moving along with forward progress, as little as it may seem. Setbacks will happen, but it's best not to let them discourage you!!
All the best!
OldGnome
eldonlake
Read your comments with interest and obviously you’ve been there and suffering the aftermath of the big E . Your so right in what you say it takes time ‘slowly slowly catch the monkey’ as the old phrase goes , .
It’s a new learning curve and bring around or associating with others who’ve been through it , I find so comforting if that’s the right word to use, as in, I’m not alone these feelings are quite common but we are all different and suffer other little glitches which it’s all good to discuss.
Sent with kind regards and that big E fighting spirit.
Thank you.
I'm not the most patient of people but I'm going to have to start.
Hi Old Gnome! Sara from the Encephalitis Society staff team here. Thank you so much for your kind comment and signposting to our support services <3 I wanted to hop on and let you know that while as a charity we are based here in the UK, our work is international. We do our best to make all our services and events (other than residential events) open to all people's whose lives have been touched by encephalitis, no matter where they are in the world. We live stream our day events to make sure everyone who would like to can attend, be they based geographically too far to travel, or limited in their mobility by the after-effects of their encephalitis. Our weekly and monthly peer support groups are held online over zoom, so that people can attend from wherever they are based. Our support line and inbox are open to enquiries from anywhere, and we can pre-arrange skype or zoom calls if there is a cost implication for you calling internationally. If you ever have any questions about any of our support services, please don't hesitate to drop me a line at sara@encephalitis.info, I'm always happy to help 
Hello Sara!
I certainly hoped I haven't accidentally "stepped on any toes" with my comments. I did not make it clear that the opportunities I was talking about were more of the "in-person" opportunites that are available there. I saw some awesome pics of the events that happen there, and only wish I could have attended.
Looking at the latest issue of Connect, there are many gatherings of people like us e-survivors who are having in-person social events.
chrome-extension://efaidnbmnnnibpcajpcglclefindmkaj/encephalitis.info/Handlers/...
This is an awesome resource for all, and this issue is full of great info, as always.
My world has taken a very sudden, and very drastic turn, fairly recently. I am performing with the highest regards at my part-time job. Suddenly, I have a brand new social world and am actually being invited to, and attending, social events. Telephone calls are pouring in, and emails and messages are increasing. I had never thought this would or even could have happened, but it has.
So my usual hermit-self is now turning into a social butterfly and I was only wishing such in-person events were available here, in the U.S. regarding us e-peeps.
My debt of gratitude to the Encephalitis Society is eternal, and believe me, without the help I have received from you folks, I don't believe I would be at the stage of improvement I am today. Thanks so much, and once again, apologies if I accidentally offended anyone.
Now I must plan on cooking something for an outdoor event I have been invited to next weekend!!
I hope you are all staying cool as the summer progresses!
OldGnome
Hello Old Gnome!
You didn't step on any toes at all 🙂 I'm sorry my reply came across that way, I wanted to let you know that we have regular online events as well as the in-person events we host in the UK, but should have worded it much better! I appreciate joining a meeting online is very different from attending an in-person event, and very much hope we can look to offer regular in-person events internationally in the future.
We will have one in-person event in the USA this year, September 22nd, in San Francisco: encephalitis.info/my-brain-...
The Brain Injury Association of America also have some regular in-person meetings for people with brain injuries (depending on the state/area). You can search what's available in your state on this page: biausa.org/find-bia.
I hope you had a wonderful time at your outdoor event last weekend, and that the weather treated you well 😄
Sara
Just to agree with the previous posts. I’m at the end of year 5. I know there are times when I slip a little. Bit of balance wobble. Or unexpected headache or tiredness, memory blank, but when I look back to the relearning how to walk stage I know I’ve come so far. Main advice. Be kind to yourself. Only push yourself in little stages. Try not to be too disheartened by the setbacks. Do you have a neurologist or anyone to talk to?
Hi eldonlake,
I really don't know what to say, but I had encephalitis the day after my first birthday so I wouldn't know much about the first few months or up to the first 2 years after getting it because I would have only been 3 by then. Unlike others here I didn't have pre- encephalitis, but apparently I had a developmental delay.
My after effects seem to have changed as I got older and it has taken me my full life to get to the point where I'm not 100 percent cured but a heck of a lot better than I used to be with about 2 areas still need to be worked on, they are my Obsessive Compulsive Disorder - OCD and disinhibition .
Have a look through all my posts I have put up over the last 3 years or so.
Please feel free to ask me any questions at all.
Thank you. I will go through all your old posts. Struggling at the moment with basic technology. I will get better.
You wouldn't believe I was a very successful IT consultant before all this (and actually did a lot of work for the NHS and National Institute for Health Research - Clinical Trials).
