Sequelae encephalitis later in life?

[kayjay2]

Hello Members,

I am writing about my sister. She had encephalitis nearly four decades ago. She is now elderly.

She did have acute brain injury from the illness. She is partially blind in one eye. She suffers still from balance problems, though not badly. She has all these years been afflicted with some memory loss, especially short term. She has had increased intracranial pressure--in infrequent bouts. A first shunt didn't work. A second shunt didn't work.

However, she always worked full time. She made many good adjustments. Boy does she write things down: "Let me get a pencil!" In retirement, she teaches aquatic exercise for people with arthritis, getting all the certifications for the job, etc. She's very good at not letting the judgments of others bother her. She doesn't remember the names of countless cousins ? They are annoyed? "It's their problem."

My question to the group is if any of you have experience with this kind of sequelae combined with normal brain aging. She had an "episode" last spring and was put through rigorous tests--MRI, other imaging, bloods, etc. in hospital. One imaging showed some "movement" in scar tissue.

Most noticeable now, and quite different from younger years: Her language abilities have eroded Now she'll blithely keep referring, for example, to the "clock" instead of the phone. She changes direction very frequently. She keeps asking the same questions repeatedly, and processing time for language is longer. It's important that conversations allow for pauses. I'd call it normal aging but I'm not sure.

This is all so much harder during the pandemic, with stress and isolation, and my sister also lives alone with her cat.

The move to so much technology has been so stressful at her age. The "smart phone" is the bane of her existence, along with getting up video-chats on the computer, and so on. Messaging systems leave her frustrated

I'm hoping for any advice for someone with sequelae and who is also aging . How does one cope with this combination, being elderly and having had encephalitis consequences for many years?

Is there something that can help in terms of prevention? Once in awhile my sister does take a medication to help with the swelling and pressure, but she hates it and almost never takes it. There is also one thing she has vowed never to have again. A "spinal tap." I wonder if the lumbar punctures are not as bad as they used to be?

Thanks in advance, Kay

[kitnkaboodle]

Welcome, kayjay2 !

I’m 26 (E at 24), so I can’t speak to a lot of your questions, but I did want to say:

I admire your love and care for your sister. Two of my siblings are my roommates and primary caregivers. They say they will always take care of me, but I also don’t want them to “miss out.” How have you and your sister managed that balance over the years?

And I can answer one of your questions: Lumbar punctures still suck. I’ve had 3. And a blood patch because the last one didn’t fully close. I’m in full agreement with your sister; I vow to never get another LP, if I can help it.

I’m sure others will jump in to answer your other questions. I think MasterBaker and kittenrescuer might have some good insight!

Take care,

Kit

[kayjay2 in reply to kitnkaboodle]

Thank you for the reply!!

Too bad the lumbar punctures have not improved! Good to know, though.

As for helping my sister, she's been independent for a long, long time. She's had very a reliable neurologist who knows her very well. It's only with aging that's she needed much more support. She still drives and shops and all that. She goes to a "Seniors" support group. She has several friends that are RNs, so that's a blessing.

I actually do not live near my sister so we are on the phone and video-chats quite a lot. I'm going to stay with her a month shortly to help her out. I can stay four weeks because I'm retired.

The language processing problems that are so evident now are new within the last year especially. They became acute last spring. It's been hard from afar actually to understand what the neurologist has been saying to her.

I'm worried that with normal cognitive aging it's just harder to "compensate" for what have been some lifelong sequelae. She seems so tired and stressed. Previously, the troubles were much more manageable.

I can't find any research about elderly and encephalitis. (Actually she had meningitis too.)

Take care, kitnakaboodle!

Kay

[kitnkaboodle in reply to kayjay2]

Glad to help, kayjay2 . It's awesome you're going to visit her soon. Maybe you could go to a neurology appointment with her and ask some questions. I do wonder if (meningo)encephalitis is a risk factor for dementia in later life. There's a lot of research on repeated TBIs causing or contributing to neurodegenerative diseases. Maybe if (meningo)encephalitis causes a severe-enough acquired brain injury, especially in certain parts of the brain, the aging process is amplified over the decades. Check back with me in 50 years, and I'm sure I'll have a lot to share on the issue. There's also the stress and fatigue; maybe it is just getting harder for her to cope in the face of chronic fatigue and the other sequelae. It's very impressive she was able to live independently for so long. I hope I am one day able to do that.

[kayjay2]

Thank you for the feedback. I shall check into idea about TBIS and this disease combined with aging. I feel really terrible that my sister has increased stress and fatigue with aging. I wish it could be fixed. I'm going to keep searching.

The need for technology to communicate, especially in covid times, is a huge stress factor. UPDATES! SOS! My sister goes to classes, and it's really hard to learn and retain much. The fear of failure is stressful in and of itself. A lot of people her age just quit the classes, which are not pitched at seniors. They are taught by Apple personnel, not educators per se, and although the people are helpful, something is not working...

I'm looking for specific classes for elderly on technology and "aging in place" for her, if they exist. I feel they must? Luckily, a tech savvy friend can look at her laptop computer remotely and help her sometimes when she gets stuck.

I too get flummoxed by all my apps, userids, passwords, and such. Why do I have so many file-sharing programs? Half my life is spent in authenticating myself online with USB keys, one time passwords, biometrics etc.! I have grown to hate the word "authenticate"!

Covid makes everything more difficult. Her doctors scared the heck out of her about covid's potential lethal effects on her given her situation.

It's nice to be able to share concerns there. Thanks so much!

Kay

[kitnkaboodle in reply to kayjay2]

Hahaha as a young person with an ABI who grew up around computers, I'll say using technology sucks for me as well 😅 even just using this website is exhausting and confusing at times.

Ah geez, sorry to hear about that COVID talk. Yeah, your sister is probably at a higher risk of a more serious case, but the danger of COVID is way overblown, in my humble opinion. You might like to listen to this interview (very accessible and informative): youtube.com/watch?v=zG7XZ2J...(Not working as expected?)

[Paula-38]

Hi kayjay2,

I'm ever so sorry to hear about your poor sister having had meningitis and encephalitis together! Similar to kitnkaboodle in my teenage years and adulthood computers started to come out . I admire your love and c for her and I can't speak for a lot of your questions but I did want to say

I had Herpes Simplex encephalitis over four decades ago, it was the day after my first birthday so I most probably different sequale to your sister because as we know as babies grow up they usually improve as they age as the human brain is not fully developed until they are at least 25 to 30. Consequently I'm 'just the opposite' to your lovely sister. I have improved as I aged, although it makes me feel terribly guilty reading and listening to other people's stories who have been far less fortunate than me that breaks my heart and I feel ever so sorry for them. That's why I became a volunteer for the Encephalitis Society approximately two and a half years ago.

I must say that information processing has been a significant after effect for me, so in my case it has nothing to do with ageing but it may well be so for your poor sister. In a different way I suppose I can relate to stress because I suffer from profound Obsessive-Compulsive Disorder - OCD and I'm prone to relapse, it's a disabling anxiety disorder.

From language processing point of view, you could ask your sister to ask her neurologist to 'slow down' when speaking with her, allowing her 'extra thinking time' during conversations as that helps me a lot! I'm compensating for things I didn't know I had, nor did anyone else but fortunately I haven't lost anything. Something ought to have been there naturally from the start of my life but it wasn't there until well into my adulthood. Last year I was finally diagnosed with a acquired brain injury.

I hope this helps .

Take care,

Paula-38

[kayjay2 in reply to Paula-38]

Dear Paula,

What a very long wait to get a diagnosis. I'm glad it finally came. Thank you so much for relating some of your experiences. It helps a lot because sometimes I feel quite a sense of loss at what has transpired with this disease. I wonder how others face it. How interesting about brain development!

I recently read "Brain Wreck." So good. I got my sister some notebooks with the "Encephalitis Hero" logo. So nice.

I understand only too well how it's helpful when people slow down their speech. I must ask my tax accountant to slow down! What she tells me goes right over the top of my head.

My sister has made so many great adjustments. She does well at not focussing on her problems and at being positive. This has been wonderful. The problem with being positive, if that's possible, is that looking for potential treatments can be, I think, too easily discarded.

The idea that my sister might benefit from treatments is scary because it means going "seeing the doctors" route. She has great doctors and never skips an appointment or anything. But I wish there could be more investigation and potentially treatment of her latest bout of brain swelling. There were two episodes within two months. My suggestions about potential for investigation, prevention, and improvements could be more "my problem," if you know what I mean. I wonder if I get neurotic about it. That's not good for my sister if/when I do that. Getting elderly means struggling with memory in any case, for many of us. For all us, deciding when to try to make improvement and when to let it be is never easy. People have told me to judge by "does it effect" the quality of life. It's not so easy to answer that because other people have their own ideas about what quality of life is and sometimes it feels like it is none of their business, to be blunt. Maybe even none of mine.

My sister doesn't have dementia, so to speak, but I started reading about dementia care-giving because some of the approaches sound helpful. I wonder if others have found this to be true, because of the memory loss issues and sometimes other atypical things.

Thanks again! Kay Jay

[Hertshubby]

Hi, I’d never heard of sequaele before I read your post but it makes sense now. My husband had Rasmussens Encephalitis in 2010 and lost lower right quadrant vision, gained seizures and the proper use of his right side. In 2018 he was diagnosed with associated dementia which looking back could have been diagnosed earlier. Your sister is obviously very motivated. My husband went into a depression, as you would and a steep logic and cognitive decline. He is 68 now. He was suffering migraines pre encephalitis so all seems to follow some sort of path.

I have used admiral nurses in the past but they have helped me cope as he has really settled into his life at home now. I retired early to care for him. He has also been in respite which although good for me was not good for him.

Slowing and simplifying your speech is an important step in helping their reaction times. They zone out or get annoyed otherwise.

He loves an iPad or echo show because he can find music easier or see pictures but as far as turning it on , doesn’t work.

I wish you luck with your sister. I just find that being there helps enormously in familiar surroundings.

X

Jan