Anyone have experience with CTE?

[Scribbler]

I have a long time friend who is a wonderful lovely person in many ways but is showing all the emotional and cognitive signs of Chronic Traumatic Encephalopathy and has a past history of head trauma. No physical signs yet as far as I can tell.

I realize it can’t be definitively diagnosed ante mortem and it’s not well understood. Also friend is not going to seek medical help on this.

We are trying to be supportive without being drawn into the chaos.

I honestly don’t know if friend has become worse over the years I’ve known them, or if it’s just that periodically all the bad decisions create crisis points where we need to help. Which is really hard.

If it’s really CTE it’s progressive, but maybe not all cases progress to physical issues.

Thoughts? This isn’t a person I can walk away from.

[CHT]

Suggest a Cognitive Therapy Assessment with an Occupational Therapist!

I just did it today. It took over an hour. I start the therapy to try to regain some working memory in April! Much of it can be done from home (online through a portal), but I can arrange in person or zoom help with my OT. My cost for access to the portal will be $150 a month, and I should not expect to see improvement until about 6 months in. I should expect to do 1.5-3 hours of work a week: the more time spent, the better the outcomes.

not only can this potentially help me (or your friend) it can also measure declines (which would be bad).

Feel free to reach out to me on it if interested in learning how it goes! I am gaining access and learning how to use the portal April 4th.

Tests we did were varied, things like: she would say a short string of numbers and then I would repeat back. And then she would say a string of numbers (up to 5) and then I would repeat backwards. Or she lay cards on the table (slowly) and I would have to repeat back the second last card continuously, and then the third last card. Also things involving beeps (counting beeps…I used my fingers, but then they would through in a different tone, and you only were supposed to count the deeper beep…it was hard). A few more that are harder to explain.

Also…my neurologist says: eat lots of protein, and be active!

As this has been a progressive thing for me, I have a lot of coping mechanisms already. I recognize I can be impulsive, so I never save my credit card number (so I have to get up and get it if I want to online shop, it makes me thing about it more), I have specific places for important things, I leave buffers of time for quiet time between activities, I stick to some specific routines, and I say things out lout to help me keep things in my head. I also use my only calendar for EVERYTHING! Track not only what is planned, but also things that happened.

I could go on and on.

The Concussion Legacy program has some information. It is sad/scary.

[CHT]

Oh, I am also on Alertec! Depending on their issues. It is for narcolepsy, but it is keeping my brain from 1) running dreams while I am awake, and 2) crashing suddenly energy wise. I literally CANNOT sleep during the day while on this medication, but I don’t have to take it every day (So I can plan a nap with the cats day). She warned it doesn’t help everyone, but I have had zero…hallucinations/awake dreams while on it!

This may be an obscure symptom…but it was also one my regular doctor didn’t understand and made me feel a little crazy about.

Lyrica has also reduced my “Alice in Wonderland” syndrome…another symptom my Dr looked at me weird about.

So make sure your friend sees a properly trained neurologist!

[CHT]

Sorry, my brain is on overdrive right now: I wonder if your friend is reluctant to seek medical help because their doctor, like mine, made them feel crazy when they described some of their symptoms. I am so glad my Neurologist did not, and made me feel heard!

Also, it may help you to learn about how non traumatic brain injuries (can potentially) affect working memory. Understanding how our working memory is shot on all phases (taking information in, processing it, and getting it out again) might help people to communicate with your friend. If someone is trying to talk to me and there is a TV on in the background, I get super anxious and frustrated. And if my husband watches something on his computer (with sound) while the TV is on, I really struggle - it is like I am being attacked.

Also if someone throws too much information at me without making sure I understand all they are tell me as they go, I shut down, so for example, telling my directions. DH was telling me my OT was “near Road X, take 50 street etc…”, but I was stuck trying to remember where Road X is. I remember Road X, but I could not in that moment place how to get there, so the rest of the instructions were useless and it did make me mad (as much at me as at him)

[RMJacobs]

@CHT

If someone is trying to talk to me and there is a TV on in the background, I get super anxious and frustrated. And if my husband watches something on his computer (with sound) while the TV is on, I really struggle - it is like I am being attacked.

Also if someone throws too much information at me without making sure I understand all they are tell me as they go, I shut down, so for example, telling my directions.

I experience all of these. Also occasionally have awake dreams, which were far worse when I was on Cymbalta. DH told my doctor either he could pull me off Cymbalta or get me some restraints so I would stop acting out those dreams. He pulled me off Cymbalta.

I’ve had some pretty bad concussions. I’ve lost track of exactly how many, but two were severe with symptoms continuing today. One was in 1978 and the other in 1999. So your posts are very interesting to me.

Rebecca

[Scribbler]

Very interesting responses thank you. I need to be also doing something about my own persistent post chemo cognitive issues that are slowly healing but still causing trouble.

I feel like my friend has had these issues so long they feel like normal, and it might be hard to organize them to go to a neurologist.

[erinmeri]

My father had what I believe to be CTE. Never even suggested during his lifetime, but in retrospect, it fits. He was a collegiate (American) football and rugby player who went on to play professional football briefly. He also had a very traumatic facial (and I assume head) injury as the result of a college era car crash. He suffered debilitating vertigo/fear of heights and his behavior could be erratic at times. I’m not sure I could have convinced him to seek help for those issues had I fully understood their likely origins at the time. I do recall us speculating that the issue with heights could have been due to head trauma, but if I recall correctly, we thought ear canal damage, not brain damage.

Good luck with your friend.

[CHT]

My awake dreams are something different (I also have the issue where I wake up while still in sleep paralyses). What I have is that the part of my brain that makes up dreams is still doing its thing while I am awake. At best it meant that 90% of the time if I closed my eyes for even as short as a second, I would be able to “watch” a dream happening. Also as soon as I fall asleep I am dreaming. At worst though, and fortunately rarely, it meant I would absolutely hallucinate. For example, one morning I was out feeding horses, and my yellow horse came to the fence. I apologized to him for not having a cookie. I then turned and walked towards the barn…at this point I saw him laying by the round bale asleep. When I looked back, of course he wasn’t there. It was 100% real to me, but was absolutely a hallucination/dream.

[RMJacobs]

Mine are hallucinations. My husband is so tired of me yelling in the middle of the night “What the hell is that!” regarding something only I can see. A common one used to be huge spiders coming down a web from the ceiling into my face. The only way I used to know these were hallucinations is that I could clearly see the spider, back when I was very near sighted. The first time it happened, I ripped all the sheets off the bed, looking for the spider.

Now it’s stuff perched on the ceiling fan, which I always have running at night. Sometimes it’s a bat, sometimes a bird, and most memorably lately, a gargoyle. I could see the gargoyle ducking the blades of the fan.

I started having these after the first really bad concussion, but before the second. They definitely became more frequent after the second one.

Rebecca

[Scribbler]

That is absolutely fascinating. I have noticed during my chemo brain tired phases that when I am tired I am much closer to that hypongaguic early stage dream state, I can feel my brain start to float off and make random connections when I’m doing something repetitive like sudoku on my phone. Not just drift off into ideas but into the beginning of that random surreal stuff you get on the edge of sleep. But nothing when I’m wide awake or moving around

[CHT]

I just picked up a pocket egg timer to ensure I don’t leave the bath running or the stove on while DH is away. Might be a useful gift for your friend, although I don’t know how you would bring it up. I do worry about burning the house down. If you have access to their house, perhaps consider checking their smoke alarms and CO2 alarms. We also have fire extinguishers everywhere.

This is just one in a long list of adjustments I have made over the years. I didn’t realize how many coping mechanisms I had until I was talking about them with the OT. Even things as simple as not saving my credit card on my computer or phone…so I can’t buy things impulsively as easily. I use post it notes a lot. I use my phone calendar a lot (with notifications). Perhaps you could help set them up with a pretty white board to leave notes for themselves? That helps me, and helps DH know what is in my head a bit better!

(I am hoping I do not have CTE. There is a genetic component, so it is not just about knocks to the head, but I feel the decline might be similar to what I am going through whether I have it or not).

[Scribbler]

I always turn on the beepy timer when I have a stove or oven on.

[CHT]

Except…I can forget I have the bath running…when I can literally HEAR the bath running from anywhere in my small house. I like the egg timer in my pocket for added back up. The ticking time bomb sound as it counts down helps me remember I am doing something.

I would like a stove/oven with an auto-shut off. If toasters and microwaves can turn off when done, why can’t stoves have a “auto-turn off before the house burns down” option? Or do they and I just don’t know about it?

[ClaireBear_NZ]

Don’t know if it’s helpful but my really cheap air fryer just turns off when it’s done - it’s magical (ADHD not CTE or similar, but same issue)

[Jarpur]

Induction stoves won’t turn on unless the proper cookware is in place. When a pan is removed without turning off the burner, the stove will sound (at least, mine will) as a reminder to turn it off.

It would still be possible to burn something to a crisp, of course.

[CHT]

That is good to know, thank you! I have never used an induction stove.

[Jarpur]

You’re very welcome. An induction stove is safer due to its characteristics, which is one of the reasons we replaced our broken downdraft radiant cooktop with an induction model – we’re getting older, too, and wanted the increased safty.

This is from Consumer Reports:

They have a built-in safety feature. If you turn on an induction burner with no pot on it by mistake, it won’t get hot. That’s because the heat is created from within the cookware itself; as soon as you remove it from a burner, that heating stops. So the glass surface never gets as hot as it would on a traditional radiant electric range, and you’re not at risk of burning yourself if you touch it. That surface might merely feel hot in the way a kitchen counter feels hot if you put a pot of just-cooked soup on it.

This is from Good Housekeeping:

Induction stoves and cooktops maintain a cool cooking surface. Since only the pan gets hot, a hot element will never be exposed, preventing fire hazards and the risk of burns in the first place. This also allows for quicker cleanup. Some people claim this makes it safer to cook around children, but keep in mind that the cookware (and food inside it) still remains very hot.

Induction stoves offer a safer way to cook than electric or gas. It doesn’t emit gas into the air, and it won’t catch objects, like dishcloths, on fire because it only heats items with iron particles in it. It also turns off when the cookware is removed from the heating element so there’s little risk of accidentally leaving it on when you’re done cooking.

[Bristol_Bay]

@CHT

I would like a stove/oven with an auto-shut off. If toasters and microwaves can turn off when done, why can’t stoves have a “auto-turn off before the house burns down” option? Or do they and I just don’t know about it?

Check the owner’s manual for your appliance. My 13 year old oven has this feature. If you don’t have the manual, you can find a pdf online.

[Pico_Banana]

This is an interesting topic for me, as I have had multiple concussions. I have been seen by a neurologist or a concussion therapist each time one was “serious,” i.e., not just a small jolt. I am in denial about it most of the time, but I worry about CTE.

One thing I do notice is that I can get irritable very easily. However, I am able to recognize that I am being irritable for no reason, and can make myself downshift. So maybe not a real symptom (or perhaps, a symptom of menopause!).

This may seem like woo-woo, but I was told a number of years ago about the Dr. Lewis omega-3 protocol. See http://www.brainhealtheducation.org/resources/brain-injury-protocol/

I tried it and continue to take the maintenance dose. It doesn’t take much of a bump for me to feel something these days, so when that happens, I up the dose until I feel better. I really do think it helps me. It’s not cheap, but also not crazy expensive to try.

[CHT]

I started Cognitive Therapy yesterday. It is NOT what I expected, but is supposed to help regain some working memory and focus. it is both boring and hard. $150 a month for access to the online portal.

I am still waiting to start the other side of therapy: working on controlling emotions and coping mechanisms: this program is at no cost, so it has a long wait time, but DH was just sent an email survey to find out how he is affected by my “condition” so the process is starting.

@Pico_Banana diet is definitely something my neurologist specialist discussed, in particular adding protein to my diet, and trying to avoid a variety of things.

CTE is not recognized in Canada as being the effect of head injuries, and in fact Canada is slow to recognize that there even ARE long term effects to multiple concussions, so getting help is very difficult. Most resources say that all symptoms should resolve in under 2 years (with most taking far less time). This explains WHY it took so long to get help and why my process to diagnosis took so flipping long and went so many other ways even though I have had SO many mild traumatic head injuries. In fact if I hadn’t hit my head this time last year, I don’t know if I would be getting the help I am now.