Missions accomplished… kind of

Tree’s up… getting there…

This year all the Christmas preparations and activities are going a lot more slowly than in past years. Part of it is me, part of it is my spouse. We are both slowing down — especially my spouse, who is having increasing difficulty sequencing information and understanding things when I say them the first time. They are also having difficulty communicating their ideas to me. They tend to start their sentences mid-way, and then they get angry furious when I ask them what they are talking about.

It’s not much fun, watching the love of your life decline cognitively, physically, emotionally, and behaviorally, that’s for sure. It’s heart-wrenching, and it’s very difficult to observe… not having any way to stop it. They’re also intensely anxious about… well, just about everything. If they don’t have a sense of control, they flip out. Or run away.

So, I do my best under the circumstances. I try to remain calm. I take my vitamins. I do my exercises when I wake up. I keep on keepin’ on. I work on my projects, in hope that they will allow me to earn some extra money on the side, so I can take better care of us. I just keep on, taking care of what I can control, and “turning over” the rest, as they say.

And we both do what we can. We really work at keeping the arguments from getting completely out of hand, and get through the rough patches the same way as always. I have a lot less tolerance for the fiery arguments, than I used to have.  We have always had a very fiery, passionate relationship, and we’ve kept each other on our toes. But it gets a little old, to be honest, and sometimes I just don’t feel like going through the whole big loop to get to a final resting place where we both understand what’s going on.

Anyway, over this weekend, we did some Christmas shopping and got just about everything we need for family members. We’re not shopping for each other, just yet, because we have time and we don’t want to put a lot of pressure on ourselves. We also trimmed the tree a bit. This year, we are taking it in bits and pieces. In past years, we put everything — and I mean everything — on at once. We loaded the tree up with all our ornaments and lights, and it was a sight to behold.

This year, we just put up strings of small lights, and last night we did the larger lights. We didn’t have enough of the lights we needed, so the tree is looking a little lop-sided this year. We’ll figure it out, I’m sure.

Or we won’t. And this will be kind of a sad and low-key time.

I’m thinking it’s going to be the latter. For all the progress I’ve been making, and for all the strides I’ve made, I’m married to someone who is on the exact opposite end of the spectrum — too afraid of their own shadow, and too averse to hard work, to maintain and improve. They are literally letting themself go, and when they are challenged, they’ll react for a few days… maybe a week… and improve. Then they will go back to how they were before. It’s very dispiriting, to be honest.

It also makes me all the more aware of what a difference attitude makes in brain injury recovery. By hiding from it in fear and ignoring it, basically refusing to engage with it, that just makes things worse. You can’t shrug off a brain injury. You can deal with it. You can address it. You can fix a lot of things. But NOT if you’re hiding from it, cowering in fear in the dark corners of your mind.

Of course, brain injury lends itself extremely well to panic-anxiety disorders. You can get stuck in fight-flight mode, simply by right of the nature of the condition. You’re always ON, always on high alert, trying to figure out how to do things that used to make sense, and you’re constantly being surprised / jolted / alarmed by things that did not work out the way you needed them to — or expected them to.

It is so hard, at times. A real pain in the ass. And the worst thing you can do is avoid dealing with it. That just does not work.

Well, anyway, we got done most of what we meant to do. And we’ve got more planned for this week. We’re moving carefully through the steps of getting it all done in good time, and it will all get taken care of, for sure. It’s just hard, right now, watching my spouse decline… watching their thinking degrade… their physical mobility… their overall health and well-being. It’s hard watching the one person you care for most in the world, let themself just go downhill like that.

If I didn’t care, it would be one thing. But I do care. Deeply. I guess I’ll just go with that.

Taking good care of myself

Sometimes….

Well, my spouse has done it again. We were supposed to leave for our vacation today around noon, and now they tell me that they’re not going to ready in time. They may — may — get up by 11:00.

That’s pretty disappointing. But then again, we are taking two cars, so I’m not going to be dragged down by their sluggishness. I have to come back home on Sunday night in order to be at the office from Monday through Wednesday. Wednesday night, I’ll head back out to the condo we’re renting, a few hours from home, and I’ll work remotely in the morning on Thursday and Friday, then take afternoons off.

I’m not sure why this “change in plans” surprises me so much. Maybe because my spouse is picking up another friend to join us for a few days, and that friend’s family is going out of their way to drop them off half-way. It seems incredibly unfair to everyone (except my spouse), that everyone’s schedules need to be re-jiggered to accommodate them. People have better things to do, than wait around to find out when they should leave the house.

If anything, it seems a bit sociopathic on my spouse’s part – like nothing matters except them and their own wishes and needs. Then again, they do have neurological issues, as well as some cognitive impairment and possible dementia, so they may not even realize that they’re being selfish. The whole neurological decline thing is a real drain, and if you forget what’s going on with them, it can be maddening. When they’re challenged, they get really angry right off the bat, possibly because they get scared at being caught unawares and not being able to think right away. They lash out and yell and threaten and cry and so forth. On the one hand, some people think they’re being manipulative, but I think it’s also a sign of cognitive decline. They really do get scared — and then they use their anger and blustering to stop me from saying or doing anything else… and that way they buy some time to catch up.

The thing is, once they get past their hemming and hawing and blow-harding, they re-orient themself to what’s happening, and then they calm down and can carry on a usual conversation.

The main thing for me is to not take things personally and get really upset when they start acting out. That happens all too often, and I forget that they’ve got cognitive issues. I take it personally and get so upset and bent out of shape — everything balloons in my mind, till the argument is not about what’s happening right in front of me, it’s about everything and anything that’s possibly related to my frustration at that point in time. My own brain goes haywire, too, so we feed off each other — and not in a good way.

Fortunately, I am getting better about checking in with myself and telling if I’m starting to get too wound up. Then I can back off — just walk away and cool off, and give us both a chance to simmer down. It’s just both our brains going haywire, and we both get scared. And we lash out. It gets to be a little much, to tell the truth, and some days I just despair about that downward cycle. But if I can step away and have some time to myself and get enough rest, that helps.

Taking care of myself really needs to be my top priority, in dealing with my spouse. When I get tired, my brain doesn’t work well, and of the two of us, I’ve always been the more functional — by a lot. I’ve been their caregiver, pretty much, for nearly the whole time we’ve been together. Their health has often been bad — especially their mental health, and after a serious neurological illness they had back in 2007. They’ve got a ton of history behind why they’re so mentally ill, and there’s plenty of reasons why they have the issues they do. Panic. Anxiety. Depression. Paranoia. Verbal aggression. A real roller coaster of emotions — with very little calm in the meantime.

Does it get old? Oh, you betcha. But they’re the love of my life, so you take the bad with the good.

And you take care of yourself.

So, this “vacation”, I need to be really clear about what I will and will not do. I need to not bend over backwards for them, just because they’re on vacation and think they should be treated like royalty. They’re not the only person who deserves a break, and I need to get some rest, too. In some ways, coming home from Monday to Wednesday is going to be a real relief for me. I’ll have the house to myself, I’ll be able to eat whatever I like — actually much healthier than how my spouse will eat. And I’ll be able to get to bed at decent times without that late-night drama they love to stir up.

So, it’s all going to work out for the best, I believe.

I just have to remember that my spouse is actually impaired in some significant ways, and I need to adjust and adapt and plan ahead.

And not get my hopes up for things that have never happened before, and will probably never happen, period. Like getting on the road at the pre-agreed time. Or having a low-key and very no-nonsense sort of trip.

The main thing is that I find a way to really enjoy myself, take care of myself, and actually get some rest. The condo where we’re staying has three floors, and I’ll be downstairs in a quiet, dark bedroom with couch and desk and its own bathroom, while my spouse will be up on the top floor. It works out well, and it leaves room for both of us to move at our own paces and have some freedom from each other. We’re both getting older and a lot more set in our ways — and a lot less willing to compromise.

More rigid? Yes. But also more discerning, and not so willing to give ground on things that really matter to us personally.

I think a lot of couples find this as they get older. They either split up, or they stick together and find a way to peacefully co-exist, whilst pursuing different interests that are all their own. I know I’m at that point in my life, and it’s not worth hassling over. It really isn’t.

So, I just need to take care of myself and have the vacation I want. Whatever my spouse does, is on them. No skin off my teeth. Not if I don’t let it.

Tony Dorsett is not dead

Tony Dorsett – all those years ago

The public debate about football and its effects on cognitive health — that is to say, how all those years of head trauma can really screw you up, years later — is heating up even more. PBS ran the special “League of Denial” about the NFL’s cover-up of the brain-damaging effects of their brand of football, and now Tony Dorsett and several other former pro players have been diagnosed with early signs of CTE – chronic traumatic encephalopathy. Bleacher Report has a good write-up on it here, and ESPN has their own, which I read yesterday.

I was really encouraged to read that there’s actually a way to detect CTE in living people. Up to recently, the word was that it can only be definitively identified in the brains of dead folks. But apparently now UCLA has a fix for that. So, that’s encouraging.

But it’s never good when anyone has CTE, and both Joe DeLamielleure and Leonard Marshall were also diagnosed, but Tony Dorsett…? That was a pretty emotional discovery for me. He was one of the players who got me really excited about the game when I was a kid. I always loved football, but there was something about his performance that was even more compelling — and it almost made me a Cowboys fan, for a while. Almost.

The article over at Bleacher Report has a writeup and includes the full gamut of responses from readers — everything from “the players knew the risks, and they did it anyway,” or “they just want to milk the system” to “they’re upset because they’re not in the limelight anymore and they’re just a bunch of cry-babies looking for attention,” to “you’re an idiot – the NFL covered this up for 15 years,” to well-informed responses based on science, to flat-out denial that anyone other than linemen could sustain repeated head trauma. And here and there are counter-arguments to refute ignorance-based “rationale.”

There’s a lot of back-and-forth talk, some more useful than others, but the most important thing is, people are talking about it, and more awareness is building around the whole issue. It would be nice if folks could share information and keep an open mind without calling names, but this is the internet, after all. I do find it hopeful that people are quoting actual scientifically based facts. And what I find most interesting is how many readers are reporting that parents are not letting their kids play football.

One of the questions that comes to my mind is whether all the talk might be doing more harm than good. There’s a lot of knee-jerk reaction going on, and brain injury is such an emotionally loaded subject which hits so close to each of us, that a lot of people just stop listening as soon as they hear “brain injury”. It’s not that they don’t want to learn or understand — we’re wired to shut down our higher reasoning, when we feel threatened at a deep level, and brain injury hits a lot of us in our most vulnerable spot.

A broken bone you can see and set and watch heal on the x-rays. A broken nose you can push back into place, tape up, and wait to get better. But a broken brain? It’s invisible. It’s mysterious. You can’t even see the real issues on imaging results — at least, not those that are widely available at a reasonable cost. And you don’t have a clear-cut route to recovery. Plus, we have this really bizarre expectation (based, I’m sure on decades of science that told us it’s so) that you only have so many brain cells, that once you damage the brain, you’re done, and there’s no turning back.

Only in the past years has science amended its views — and it’s done so silently, without so much as a hint of an apology for training us all to give up on ourselves.

What’s more, I think we’re not helped by the sensationalistic (if true) focus that’s being brought to CTE and the long-term effects of repeat head trauma. All the press focusing in detail on the horrible things that happen to you after head trauma might be cementing the public perception that once you’re brain-injured, that’s it. Tony Dorsett says he’s being proactive and is going to fight this and live his life to the fullest. But given how little is generally known in the public about brain injury in general, who knows how seriously anyone is taking this? I read one article where the writer referred to his condition as his “demise” — a freudian slip, if ever I heard one.

Frankly, I’d be surprised if anyone gave him the time of day after his revelation. Yes, he is Tony Dorsett — that is, he was. Once people find out that you’ve got “brain issues,” they have a way of distancing themselves from you. It’s something they don’t want to think about. They can’t help but imagine what it would be like for them — and it scares the bejesus out of them. So, they choose not to talk about it. They’d much rather talk to Sidney Crosby, who apparently has no more head/neck trauma issues to speak of.

From personal experience, I can tell you, repeat head trauma — even mild traumatic brain injuries — can do a number on you. It can turn your emotions upside-down, trash your impulse-control, wreck your judgment, saddle you with a bunch of unpredictable and seemingly insurmountable physical sensitivities, put you in a state of constant headache and general pain… in the process destroying your relationships, costing you your job, turning your financial decision-making inside-out, and generally doing the same thing to your life that a frat party does to a frat house. And it can all happen without you ever intending it to — and never actually wanting it to.

Now, I know a lot of folks are going to say it’s a character issue, or it’s an issue of self-control or what-not. It’s not about character. It’s about how the brain works, and how our lives are ordered as a result. And when you’re brain-injured (and unaware that you’re dealing with brain injury), the very thing that’s supposed to keep everything in order is what’s the problem.

And because it’s your brain that’s impacted, you can never even realize till it’s way late in the game — for some, too late.

The thing is — if we can all get past the terribleness of it, please — there is a way out. Brain injury, even CTE, doesn’t need to be the end. The brain is an incredibly “plastic” organism that by nature re-routes its wiring and recruits other parts to take on functionality that the original parts may have lost. There have been cases of people with advanced brain degeneration never ever showing any signs of that condition — the book Aging with Grace talks about that. And you can’t tell me that all the people who have lived full lives to a ripe old age have never had any organic brain issues. The brain is a mysterious and amazing organism. Our limited understanding doesn’t change its infinite possibilities.

If there’s one thing that I hope comes out of all this — even if it’s long-term — it’s the knowledge and experience that recovery from brain injury is possible. It is NOT a death sentence. I hope someone out there gets a clue — and publishes widely on it — about how possible (even probable) it is that a person can restore quality to their life and continue to live with meaning and purpose and a sense of usefulness, even after repeat head traumas.

Making a huge issue out of football being a cause of a brain-wasting condition is only part of the story. Saying that repeat concussions is a recipe for madness and early-onset brain degeneration is not the whole truth.And focusing only on the awfulness (to raise awareness and funding) leaves me with the feeling that this terribleness is permanent and irreversible. Logically I know it’s not 100% accurate, but part of me fears might be.

Tony Dorsett is not dead. Not yet, anyway. Who knows what will take him out in the end? He says he’s got issues. He says it’s wrecking his life. He says he’s considered suicide. And he says he’s being proactive and is going to fight this thing. There is still a whole lot we don’t know about the brain, CTE, tau, and how we might be able to clear the junk out of the brain.

Personally, my money’s on exercise, sleep, a positive attitude, staying active both mentally and physically, keeping connected to a community, and solid nutrition without a ton of artificial crap crammed in between the real ingredients. But that’s just me.

Whatever other folks may choose, I hope they do choose it, and I hope they don’t give up just because things look a little grim, right now. Things always look grim, before you have a chance to do something about them. But once you get going… you never know where it’s going to take you.

In any case, the day is waiting. I have a lot that I want to accomplish today — this whole weekend, in fact.  So, speaking of staying active, it’s time for a morning walk before I get into the rest of my day. That should get things moving…

Onward.

Just keep trying…

So, I’ve been noticing a couple of things lately —

Keep on keepin’ on…

First, how I can never seem to wake up feeling really rested, and I usually feel hungover when I get up in the morning, even though I’ve not done anything to warrant that.

Second, I sometimes completely forget where I am and what I’m doing for a few seconds, then I “come back” and I know where I am and what I’m doing again.

Each of these, in themselves, have the potential to trouble me. Greatly. In fact, they have really bothered me before, and I have seriously wondered if that circling specter of dementia that is often hanging over my head, is finally coming home to roost.

What I’ve realized, is that if I just keep going, I manage to find some resolution to them.

It has been a long, long time, since I woke up feeling really rested. I generally feel hungover, foggy, and not really great. I feel like I mixed cheap wine, light beer, and three different kinds of liquor, and it’s a hell of a way to wake up in the morning, every day.

It’s been bothering me that I can never seem to get on the good foot, and I feel so crappy. I try getting to bed at a decent time, then I can’t sleep through the night. Or I try to sleep in, but that’s never a guarantee. On days when I can’t sleep in, I over-sleep. On days when I can sleep in, I can’t. It’s incredibly frustrating.

I try to take a nap when I can, but it doesn’t always happen. Sometimes I literally can’t get to a place where I can lie down. Other times, I can get to a quiet place, but then I get a second wind when I’m about to step away, and before you know it, it’s the end of the day, and I’ve pushed through and kept myself going – to my own detriment.

What I have realized, after a whole lot of trial and error, is that if I can just get going in the morning, eventually I don’t feel so terrible. Especially if I can focus my attention on something that makes me feel good, like exercise and a healthy breakfast and the things I plan to do for the day, I can get myself going and get out of my funk. It’s not permanent.  And even if I feel wiped out and exhausted, if I promise myself I will rest if I need to later, that makes me feel better.

As for resting during the day, I do what I can, and if I can’t get a nap in, I don’t break my head over it. It’s bad enough being tired, without being all tweaked about it, too. Sometimes I’ll just step away to catch my breath, and that helps. Or I’ll take a brisk walk and that will make me feel better. In any case, breaking up the monotony of a dronelike day usually makes me feel better, even if I don’t get any additional rest.

It’s a fine line. It’s all a fine line. I just have to keep going.

As for losing my way and forgetting where I am, I periodically lose track of where I am when I am walking or driving. It can be very disconcerting for me to have no idea where I am, and not know what to do. Visions of “On Golden Pond” come to mind, and my head starts to race  with all my fears about Alzheimer’s and dementia and CTE. I wonder if this is the beginning of the end for me, and I can’t help but think about all the stories from friends and acquaintances about their aging parents “losing it”. I also start thinking about what I’m going to do, if I ever get to the point where my mind is completely gone, but my body is still in good shape. I think about going skydiving and not opening my chute. I think about getting a wing suit and flying into a cliff face at full speed. I think about going to see and letting myself just fall into the ocean during a storm.

The last thing I want, is to live out the rest of my days in a diaper with someone spoon feeding me. Where’s the point in that? I’ve watched elderly relatives end up in homes, nursed back to health at very advanced ages, and then lingering on, with ever-decreasing quality of life.

I’m not sure I’d ever want that. And talking to others about this, we agree — it’s better to take matters into your own hands and put an end to things that are never going to get better, than live out the rest of your days in a “twilight state” where the only ones benefiting are the retirement home coffers.

Yeah, no thanks.

Those times when I forget where I am and don’t know what’s happening are — thankfully — brief. And I find that if I just keep going, I can always find my way again. All I have to do is trust that if I’m headed in a certain direction, it’s for a reason, and that will become clear to me… eventually. I haven’t lost my marbles yet. So, I just keep going. I just keep trying. I just keep looking, keep thinking, keep engaged. And things work out. Either I find a new way, or I figure out how to make the old way work again. It’s never a clear-cut one or the other. But if I just keep trying, I can always find a way.

Of course, a day may come when things don’t work out, but that’s not here yet.

So, for today — for the moment — I will focus on what I have, the good that is in my life, and I’ll do what I can to make the most of it. Right here. Right now.

Onward.

Ah, Groundhog Day…

I have a feeling I’ve been here before…

I’m not talking about the recent event when the behavior of a groundhog (or groundhogs, depending on your regional preference) determines our future. I’m talking about the movie,”Groundhog Day”  where Bill Murray’s character goes through the same day over and over and over again.

This is my life in a nutshell. I cycle through the same experiences / crap / joys / sorrows on a regular basis, each time without much active recollection of how it was before and what my experience was then. It applies to the good things, as well as the bad things, and my neuropsych is repeatedly surprised that I’m wrangling with the same issues that I was wrangling with, several weeks, months, or even years ago. Sometimes I have “new” experiences that are repeats of what I experienced only the day before, and I have to go through the whole learning process all over again.

One example I can think of was back in December, when I had that business trip overseas. Each day, I got up with this terrible, terrible dread — almost crippling anxiety over what was going to happen that day. It was awful, and I literally did not want to leave my room. I just wanted to stay behind closed doors, where I had no interaction with anyone, where I couldn’t possibly screw things up, and where I could move at my own pace and not adapt to anything new or different around me.

And each day, I literally forced myself to get dressed and go out into the world. Each day, I rediscovered that I was able to communicate, that I was capable of understanding what others were saying, even if I didn’t get every single word, and that the world outside was something to be explored and discovered, not dreaded and avoided.

Then the next day when I got up again, it was back to battling the crippling dread, the fear, the anxiety… the monumental effort of getting myself OUT the door… and the happy discovery that I could indeed handle myself well in the world beyond the hotel room. And at the end of each day, I was able to kick back and really enjoy myself in that space, just reveling — all over again — in the “discovery” that I was really going to be okay.

Now I have another business trip coming up that will take me overseas. This time I am going to a country where I do not speak the language. I have been studying a bit, which has been kind of funny — I found some audio files to learn from, but when I started to listen to them, it turned out to be all “Stop or I’ll shoot!” and “Put down your weapon!” and “How many armed men are there?” — apparently a law enforcement or military training course. At least I know how to say “Don’t shoot!” if I get into any trouble while I’m on my trip. You never know… there are some pretty rough neighborhoods where I’m going.

Anyway, the point I’m making is that for some reason, I seem to have just a terrible, terrible memory for things that have happened to me before. This is true of good things… and bad things. I seem to get myself into situations, over and over again, doing the same thing and expecting different results, and then I suffer and chafe when things don’t turn out like I think they’re going to.

Like trying to get out of the house to get to work… Time and time again, I get up thinking that I can just take a little time to check my email and/or do some little things around the house, and then I’ll be able to get to work on time. And time and time again, I get sidetracked on one thing or another… and I end up rushing and being later than I wanted to be. I make up the difference at the back end, of course, staying late — even later than I would have to, actually, because I start to warm up around 6 p.m., and it’s hard for me to take a break when I’m finally making good progress. Even so, even if I do make up the difference in the hours, the simple fact is that I do this over and over again, thinking that this time it will be different.

Insane? Well, according to some, it is. Whatever you call it, it gets frustrating, and I feel like a complete idiot.

I guess part of the equation of this apparent failure to learn, is the fact that I have to stay very present in the current moment, or I can really lose my bearings. I think this 100% here-and-now mindset has developed over years of having to navigate so many issues — light sensitivity, noise sensitivity, exhaustion, vertigo, nausea, pain of all kinds, headache, distractability, and more — but still needing to be functional. I think I just developed the habit of focusing so completely on the present so that I could function in that moment, that everything else — before and after — just disappears. Or it never has a chance to get set in my mind.

I think also the stress of daily living over the years has impaired my ability to learn. Just having to deal with all the sh*t of my issues and symptoms and the screw-ups and the adjustments and the confusions and distractions… it can get pretty stressful, and I’m sure it’s had some impact on my ability to learn.

Then again, in other areas I learn extremely well — like this language thing. I’m actually picking up a lot of good stuff, and I think I’ll be able to at least ask people for help and understand basic numbers and directions, and be able to thank people for their help, without too much struggle. Languages seem to come pretty naturally to me, and it surprises me how much sense they make to me after a relatively short period of time.

So, it’s not like I’m completely disabled with my learning. But experiential learning? There, again and again, I end up going through the same things, as though it were the first time ever.

Well, I can’t worry about it. If I approach it like it’s a grand adventure of constant discovery, and I treat each situation like a fun opportunity to have a “new” experience, it’s fine. It keeps me fresh, actually. It keeps me interested in my life. It’s never boring — that’s for sure. The worst thing I can do, is treat myself this means there’s something wrong with me, that it means I’m somehow damaged. If I don’t judge myself and I just accept that about myself — and come up with ways to work with/around my very limited memory… and I don’t get it in my head that this means I have early-onset dementia and I’m losing my mind…. I can work with this.

Hell, I’ve been working with it for as long as I can remember. I just “get lost” sometimes and I have to find my way out of the shadows and dead-ends… which I can do pretty well. I’ve had plenty of practice, you see.

Anyway, life goes on. I have a number of very interesting projects I am working on, and that’s keeping me interested and engaged in my life. I’m learning new things pretty well, and I feel good. I also got a lot of sleep yesterday afternoon, after I was done with my work. I worked from home, so I was able to just crawl into bed when I was done for the day. That was nice. I got about 7 hours of sleep last night, so that’s good, too. And I have all day today and all day tomorrow to kick back and take care of myself. Because I’m flying out in another week, and I need to be healthy and whole to make this trip.

So it goes. Part of me would like to have a better recollection of the things that I have experienced in the past, so that I don’t keep making the same mistakes, and I don’t keep pushing myself and wearing myself out. And I’m thinking about ways I could do that — maybe keep a log of what works for me in different situations, so I can draw on what has worked for me in the past… I had that kind of a log going, about 3 years ago, and it was working well for me. I think maybe I need to resurrect it, so I can continue to draw on my experiences and get my sh*t together better than I currently am. It’s an idea….

Anyway, the day is waiting, and I’ve got to get a move on. It’s always interesting and never boring… and I need to remind myself of how things have been in the past, as I work through my present and into my future.

I’ve been here before, I’m sure… now I need to figure out how to make the best of it.

 

Here’s Hope – Traumatic Brain Injury Does Not Increase Risk of Dementia

Traumatic Brain Injury Does Not Increase Risk of Dementia, According to New Study Led by a Mount Sinai Researcher

A history of traumatic brain injury (TBI) with loss of consciousness (LOC) is not associated with an elevated risk for developing dementia or Alzheimer’s Disease, according to a study led by a resesarcher at the Icahn School of Medicine at Mount Sinai. But recent TBI with LOC sustained in older adulthood is associated with an increased risk for mortality.

New York, NY (PRWEB) December 26, 2012

A history of traumatic brain injury (TBI) with loss of consciousness (LOC) is not associated with an elevated risk for developing dementia or Alzheimer’s Disease, according to a study led by a researcher at the Icahn School of Medicine at Mount Sinai. But recent TBI with LOC sustained in older adulthood is associated with an increased risk for mortality.

The research paper, titled “Risk for Late-life Re-injury, Dementia and Death Among Individuals with Traumatic Brain Injury,” was published November 21 in the Journal of Neurology, Neurosurgery & Psychiatry.

“There is a lot of conflicting information in the literature about the link between TBI and dementia. The findings from this study do not support the commonly held belief that TBI leads to dementia,” said Kristen Dams-O’Connor, PhD, first author of the study and an Assistant Professor of Rehabilitation Medicine at the Icahn School of Medicine at Mount Sinai.

Adults aged 65 or more who have had TBI with LOC at any time in their lives have a higher risk for subsequent re-injury, according to the study. This is the first study to look at the risk of re-injury among older adults. Researchers also found an increased risk for mortality, among older adults who report a recent TBI with LOC.

“The increased risk of re-injury in older adults as well as a link between recent TBI and mortality underscores the need for effective strategies to prevent injuries and re-injuries in this population, ”said Dr. Dams-O’Connor, who is also a psychologist.

Read the full press release here >>

Forget despair – I’m going to exercise

This dog isn’t going down easily

I have to admit, writing about the traumatic / PTSD aspects of TBI has got me a little bummed out. Additionally, thinking about CTE and the NFL players’ suit(s) against the NFL, and pondering the shortened anticipated lifespan of TBI survivors, hasn’t helped my mood at all.

No surprises there.

I did happen upon something interesting today, however — and it both appears to confirm what I have suspected, as well as adds a little more information to my “store”. It also lit a fire under me with regards to my exercise routine.

Check out this recently published paper from Brain – A Journal of Neurology:

Stimulation of autophagy reduces neurodegeneration in a mouse model of human tauopathy

Okay, now that I’ve got your attention 😉 what does it mean? Basically, autophagy is the process by which cells digest parts of themselves by breaking down the bits they don’t need or are trying to get rid of, and using them as “food” for other processes. A good example of autophagy is dieting — where your body consumes the fat in some places to fuel its activities. It sounds a bit strange and creepy at first look, but when you think about it, it makes perfect sense — if there’s energy or some other ingredient that’s taking up space in a cell, and it can be used for other purposes, such as energy, then it only makes sense for the cell to break it down and use it up for something else. Our cells do this all the time – and in the case of trying to lose weight, that’s exactly what we want them to do.

Since this breaking-down function is available in cells that want to get rid of extra “baggage” — and tau, the protein which is linked to CTE and other dementia-like brain degeneration like Alzheimers is definitely extra baggage that isn’t doing anyone any good, then wouldn’t it make sense for this breaking down process to be useful when it comes to clearing out tau from brain cells? Apparently, yes. Here’s the summary from the article I found (bold emphasis is mine):

Summary

The accumulation of insoluble proteins is a pathological hallmark of several neurodegenerative disorders. Tauopathies are caused by the dysfunction and aggregation of tau protein and an impairment of cellular protein degradation pathways may contribute to their pathogenesis. Thus, a deficiency in autophagy can cause neurodegeneration, while activation of autophagy is protective against some proteinopathies. Little is known about the role of autophagy in animal models of human tauopathy. In the present report, we assessed the effects of autophagy stimulation by trehalose in a transgenic mouse model of tauopathy, the human mutant P301S tau mouse, using biochemical and immunohistochemical analyses. Neuronal survival was evaluated by stereology. Autophagy was activated in the brain, where the number of neurons containing tau inclusions was significantly reduced, as was the amount of insoluble tau protein. This reduction in tau aggregates was associated with improved neuronal survival in the cerebral cortex and the brainstem. We also observed a decrease of p62 protein, suggesting that it may contribute to the removal of tau inclusions. Trehalose failed to activate autophagy in the spinal cord, where it had no impact on the level of sarkosyl-insoluble tau. Accordingly, trehalose had no effect on the motor impairment of human mutant P301S tau transgenic mice. Our findings provide direct evidence in favour of the degradation of tau aggregates by autophagy. Activation of autophagy may be worth investigating in the context of therapies for human tauopathies.

So, yeah – you’ve got extra proteins gunking up your brain cells after a traumatic brain injury/concussion, and that extra protein isn’t doing anyone any good. Wouldn’t it make sense to use the cells’ own activity of breaking down portions of themselves and flushing them out, to help clear out the tau?

In the study, they used trehalose to stimulate the process in mice, which may or may not be all that useful for my purposes. Trehalose is used in processing a lot of foods, and it’s not uncommon. I’m not sure how therapeutic it would be for me to consume mass quantities of “confectionery, bread, vegetables side dishes, animal-derived deli foods, pouch-packed foods, frozen foods, and beverages, as well as foods for lunches, eating out, or prepared at home,” especially if my body has its own natural processes to move things along. What natural processes, you ask? Exercise. Acute exercise. Researchers have found that acute exercise stimulates autophagy in the skeletons and muscles of mice, and I don’t think it’s a stretch to deduce that it can have the same effects on cells of the brain.

Why not? Okay, I’m probably being markedly unscientific here by drawing conclusions from reading a few articles (scholarly as they may be), but let’s use common sense for a moment. The human body is constantly renewing itself — every 7 years, we get a new body, because the cells have all renewed themselves. If acute exercise is worked into the routine on a regular basis, then wouldn’t it make sense that the autophagy induced by exercise would help the body rebuild itself with new materials, and with less tau?

As a TBI survivor who has a nagging concern about tau-induced dementia later in life, this gives me hope. And while “hope is not a strategy” and my scientific method leaves a lot to be desired, nonetheless, it does help me get past the pernicious, creeping depression that sets in sometimes when I get tired and start to think, “After all those TBIs, what’s the use?”

So, I’m throwing myself a bone, here, and I’m gnawing on it with all my might. I have known for several years, now, that exercise makes me feel and think better when I do it first thing in the morning. And I’ve known for decades that a good hard workout makes me feel like a new person. Researchers seem to be confirming scientifically what I have experienced, and they’re explaining it in ways that make sense to me and my systems-oriented conceptual brain (all the biochemical-speak notwithstanding).

So rather than getting hung up on the idea that I’ve gotten clunked in the head too many times, and that’s that, I’m going to amp up my exercise and really push myself to do more with it. It’s the acute stuff that apparently helps the most, so I need to do more of that. Not to the point of injuring myself, but definitely more than the easy-peasy warmups I’ve fallen into doing over the past six months or so.

Screw despair. I’m going outside to get some serious exercise.

Just a little farther to go

In another 24 hours, I’ll very likely be back in my own home. That’s assuming that all goes well and according to plan, and I don’t run up against any more roadblocks.

It’s been a good trip, but I’ll be glad to have it behind me. I’ve had some good times visiting with family and friends, and I’ve had some harrowing times getting news that nobody wants to hear — who’s got cancer, who’s getting divorced, who’s been secretly getting drunk off their ass every night for the past seven years, who’s showing signs of dementia, who’s been repeatedly asking, “Who will take care of me when I cannot care for myself?”

I’ve been seeing some troubling behaviors in people who are close to me, and it makes it all the more imperative that I maintain some sort of stability over the coming months and years. Once the cognitive decline sets in, there’s really no turning back, and who’s to say how long it will last, and how quickly it will progress?

I’m talking about others having troubles — people I will very likely be asked to make decisions for, at some point. Calls need to be made to my siblings, so we can sort things out about our parents, before the sh*t hits the fan. And I need to make provisions for myself in the case that my spouse starts to decline and demand more of me.

I’ve got a lot on my head, a lot on my shoulders. And the fun hasn’t even started in earnest yet.

I’m doing my best to keep cool — it’s really a matter of me keeping my act together, so that I can be of use on down the line. That means I need to get back in the practice of the regular daily exercise regimen. It means I need to build a LOT more physical strength and endurance than I have right now. It means I need to really hunker down in my work and quit dicking around like I can afford to lose the job. It means I need to really clear things up in my head and in my life, strip away even more of the unnecessary stuff, laser in, and keep my act together.

But that’s really all off in the distance — many of my most pressing concerns aren’t front and center yet. There will be time for that later. For now, I need to focus on what’s in front of me — getting back home in one piece, safely… finishing out the year at work on Friday… then spending the long weekend honing my sense of direction and hunkering down to make it all happen as best I can.

I’ve got a long haul in front of me. But for now, I’ll just keep focusing on the little way I have to go.

mother dementia temper

Source: Clinton Steeds

So searched one of my readers yesterday. Three words that say a whole lot.

My guess is that someone’s mother is starting to fade, cognitively, and she has been blowing up at them…. and they’re trying to decide what to do — to keep coming around and visiting/helping mother, or to slowly distance themself from her tirades and protect what sanity they have left in life.

One can hardly blame them.

I think it’s particularly difficult, when you’re an adult child, you have plenty of responsibilities already, and you are keenly aware that you don’t have tons of time left on the planet to just enjoy yourself. It’s hard, having a parent who’s declining. You don’t want to just “dump” them, but you also need to have a life. It’s an impossible quandary, from which no one escapes unscathed.

I haven’t been thrust into the midst of that terrible What To Do With Mother/Father quandary, just yet. And it’s a good thing. I’m just now starting to really enjoy my life. After 40-some years of confusion and some pretty tough times, I’m coming out of a long, dark tunnel into light.

About the last thing I want or need (selfishly, perhaps) is a parent in decline who is my responsibility in some way or another.

I am indeed blessed. For the time being. And I’m savoring the moments of blissful normalcy while I can.

Because you never know when something unexpectedly awful will come ’round the corner. And then the recovery starts all over again. Some kind of recovery or another. Maybe it’s physical. Neurological. Emotional. Or just plain logistical. Terrible stuff happens. We all know that. What we don’t know is whether or not we’re going to survive it, the next time.

The odd thing is, sometimes we have a much clearer view of our difficulties in advance of them, as well as afterwards. While we’re in the thick of things, we can get so focused on just dealing with what’s in front of us, we don’t realize what a big chunk the situation is biting out of us. We’re intent on survival — pure and simple. Only later, do we fully realize just what a steep price we paid for our survival. And then the post-traumatic stuff sets in, with you feeling awful and inadequate and jumpy and itchy, ready to leap out of our skin at the drop of a hat, or pick up a stick and go racing down the street threatening anyone who looks at you the wrong way.

Kind of like

mother

dementia

temper

How’s that for dysfunctional haiku?

And so our lives unfold. We value our ties with the ones we love. We see those ties unravel. And we lose it over the littlest things. In the midst of it, in the thick of it, we shore up our resolve and tell ourselves we’re Good People who mean only to Do Good, chasing our gumption with a stiff shot of the hard stuff or a strong helping of whatever rationalization fits us best. We’re so irreversibly human, so fraught with limitation and trepidation. Yet, somehow, we continue to Do Good — or at least intend to.

And we mourn the missed chances, the lost causes, the opportunities we now value but passed up before. We shed a few tears into our pillows before falling asleep, we brush the tears from our eyes as we drive home from appointments with care providers and experts whose primary purpose is to help us and our loved ones through the day. We ask for help. Or we turn offers away. We do what people do — strange, inexplicable things that somehow serve to dull the pain of daily existence.

mother

dementia

temper

None of it seems to make much sense, some days. And yet, we go on. We continue. We put one foot in front of the other. We double-tie our shoelaces so we won’t have to stop too often to re-tie them… so we don’t trip over a shoelace.

We mourn for Haiti. And Louisiana. We rue the dark schmutz on the Gulf coast of Florida. We rail against The Powers that refuse to let good-hearted citizens save sea turtles and pelicans. We watch for the inevitable lawsuits that may — just may — dispense a version of justice in this terribly unjust, benzine-fumigated world of ours.

mother

dementia

temper

And part of us doesn’t blame Mother Earth for throwing all that oil up on the shores during storms and hurricanes. Because we’re the ones who loosed it from Her deep, to begin with. Part of us doesn’t blame the birds for just dying — who could hold up under that terrible dark weight? Part of us loves Tony Heyward for giving us a single figure on whom we can fixate the full brunt of our anguished disgust. Tar and feathers is for BP execs, not endangered species.

Or so we would like to think.

It’s all so fragile, isn’t it? Our connections strengthen, then fray and dissolve. The small chirping creature in the woods outside our living room window pips melodically… then starts to shriek, and then goes silent. A tree comes down and the electricity goes out, and someone slips in the dark, hits their head, loses a part of themself in the process. A certain part in a car fails, an accident happens, and the driver is injured invisibly… for a few months, till their life starts to come apart at the seams for no apparent reason.

mother

dementia

temper

Google soothes, as only Google can.

All or nothing – for real

I have been looking at my notes from the past days, seeing what I’ve gotten accomplished, and what I haven’t.

There is a whole hell of a lot I have not gotten accomplished, that I have been promising myself I would. Some of the things I have not done are serious. They are job-related. Survival-related. Pay-related.

I cannot NOT do them. But that’s what I’ve been doing.

Not.

I’ve also been thinking about how long it took me to realize that my fall in 2004 had affected me the way it had. Some call it “denial.” Some call it a “cognitive blind spot.” I call it “not sinking in because I have so many other things to think about.” Things like stray distractions that come across my path that for some strange reason I cannot resist following. Like a mynah bird. Magpie me.

The really freaky thing is, I ‘got’ that my concussions as a kid had affected me tremendously, when I was young. The discipline problems. The meltdowns. The outbursts. The getting kicked out of class because I was too much of a handful and nobody knew what else to do with me. I also ‘got’ that the concussions of my childhood had affected my development and made it difficult for me to really function as a regular adult throughout most of my life. Certainly, I did a great impression on the surface, keeping a job (well, a series of jobs) and getting married and settling down and doing important things.

But nobody on the outside ever saw what went on inside. And very few people ever knew what living with me was really like.

The fact that my spouse has stood by me all these years is nothing short of a miracle.

Anyway, the reason I bring up my cluelessness about the impact of my fall in 2004, is that it’s the same kind of obliviousness that I now sense, around my work and the things I have let slide. It’s like I’ve been in this haze, this wandering-about fog, where my brain is busy thinking about everything except what it’s supposed to think about. And that happily distracted piece of me is quite content to not give much thought to my work.

But I must change this. Because focused attention is what helps restore my everyday function, one task at a time. I hate that I have to approach just about everything I do like some rehabilitation exercise, but I do. I just do. I have to make extra effort to get things started, and I have to make extra effort to stay on track, and I have to make extra effort to finish what I start.

I don’t like it. I hate it, in fact. But that’s how it is. That’s how it is with me.

So, I’ll make the extra effort.

And yes, I’ve decided to drop my shrink, once and for all, because they keep encouraging me to not work so hard, not be so hard on myself, not expect too much of myself.

That’s no way to recover. I need to recover, and not give up. I need to treat each and every day like a chance to recover some part of me I’ve lost — or am in danger of losing, if I don’t pay extra attention. I just can’t end up like the football players and other professional athletes who end up demented and/or dead long before their time, because they had no idea what they were doing to their brains, and they never found out what they could do to fix them — or probably ever realized that they needed to fix anything.

Enough of the blind spots. Enough of the denial. Enough of letting things slide and acting like that’s okay. I have to keep sharp. I don’t want to fade away. I don’t want to end up demented and dazed, because I was too dazed and/or lazy to put in the extra effort to keep my brain healthy and engaged.

I need to be healthy. I need to be engaged. Like the nuns in the Nun Study in “Aging With Grace” I need to keep disciplined and focused and not give in to my lazy streak… the streak in me and my broken brain that loves to wander around and follow whatever little distraction comes along. My brilliant mind knows better than to do that all the live-long day.

I must do better. Each and every day is an occupational therapy opportunity. I need to get back what I’ve lost – and make sure I don’t lose what I’ve worked so hard to get.