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November 29, 2016 7:14 PM   Subscribe

How do you rebuild cognitive strength while dealing with an extended illness?

The past couple of years, I've been dealing with kidney decline and eventual failure due to a genetic issue. One thing that surprised me was the cognitive effect of this particular illness: I'm having trouble with memory, focus, recall, and problem-solving. Analytical skills, too.

I'll stop dead in the middle of a sentence because I can't recall the word I was thinking of. I try to read and within five pages, everything just blurs into words and I forget what I've read. I'll watch an hourlong murder mystery and sometimes confuse or even forget entire characters by the end of the episode. I had to re-up my insurance the other day and it took me a whole day to read through the different plans and figure out how to calculate the premiums and pick one. It's like everything has soft edges.

The doctors I've spoken to call it "brain fog" and say it's pretty normal for patients like me. But it's frustrating. I used to be relatively good at this sort of thing, and my past jobs and independent livelihood depended on these skills and the ability to pick up on complex issues pretty quickly. I'm not working right now (which is generally a good thing) but I feel like maybe being out of the loop is multiplying the effect.

Ultimately, my goal is to get back to work sometime in 2017. Most of my previous jobs (proposal writing, technical writing, project management, account management -- all in technical fields) have required strengths in these areas. Lots of compiling and analyzing data and translating it out for different audiences.

So what should I be doing to build my brain back up? I want to improve memory, focus, recall, problem-solving, and analytical skills. I've been trying those grid logic puzzles lately, but if I do any beyond the easiest, I lose my train of thought and have to keep starting over. Suduko, I just stare at.

Some days are way better than others, and sleep/energy levels seem to play a big role. I'd just like to be more consistent and hopefully work my way back up to normal.
posted by mochapickle to Science & Nature (12 answers total) 13 users marked this as a favorite
Sorry to hear you're going through such a tough time. I have had a brain "fog" feeling before, though different from yours as it was from anxiety. But I don't doubt that you probably have anxiety about your situation too which could be contributing to your problems. Maybe you could try something like meditation every day to see if that makes you feel a little more focused. There's also an online brain training program called Lumosity. You have to pay a little bit for it, but I've tried it before and there are lots of good brain games that help with recall, spatial recognition etc. Might be worth a try.
posted by oracleia at 8:08 PM on November 29, 2016

In this review, it's suggested that vascular disease may mediate the cognitive impairments seen in people with chronic kidney disease - was that possibility discussed with you?

Among the recommendations in that paper, both for people with and without vascular disease, is exercise training, based on evidence from some clinical trials. (I found some research and guidelines for exercising if on dialysis here. It seems some hospitals run exercise rehabilitation programs that may be helpful; perhaps worth talking about with your doctor?)

Other works citing this paper might be worth looking at and talking through with someone medical.

(And, some studies have found that flavonoids in fruit and veg - and I guess some supplements, although, buyer beware, and if trying any, definitely check with healthcare providers - can support microvascular health in various populations, although I don't know if anyone's looked at this with regard to people with kidney diseases.)
posted by cotton dress sock at 8:59 PM on November 29, 2016 [2 favorites]

It might help you to approach this like any other physical or occupational therapy. Right now you're pretty atrophied, so big endeavors can do more harm than good and there's no shame in using what help you can gather. And once you get back into shape, you have to maintain it with practice and trying different thing to keep yourself flexible. Also, it's all part of your whole body's health, so things like good food, steady sleep, fun activities and rewarding relationships will play a big role in helping to disperse the brain fog and keep it gone.

For big things like your insurance papers or other stuff you need sustained focus for, ask for help. Would you maybe have better comprehension if you read things out loud or had them read to you? Maybe you would work better if you took notes as you went, or discussed pros and cons with someone. Also just budget like, triple your expected time for things. Take away that stress and expectation of speed and allow yourself lots of leeway so you can take breaks and do what you need to do for physical wellness, too.

Otherwise for right now start small and stay consistent. There are lots of games and logic exercise things out there that you might like. (There was one for the Nintendo DS that was really popular for a while iirc, you might be able to get one factory refurbished for a pittance.) Or just commit to doing three sets of ten minutes a day of brain workout stuff. Learning to program might be something interesting and new, or getting into the history of a particular area, or polishing some lapsed math skills, play memory match games, or whatever makes sense for you. The key is to set timers and stick to it for a couple weeks, so if you catch yourself drifting you can see how much time you have left and refocus, and also give yourself a sense of incremental achievement. Then as you find yourself able to focus for longer chunks, you can increase that ten minutes to fifteen and twenty and so-on. If you can't start at ten, do five minutes instead.

There's a glut of anecdotal evidence out there that says physical exercise helps our minds get sharper as well. I don't know what you're doing to rebuild after your illness, but try to find something that can become a lifetime sport. Bowling, dancing, swimming, yoga, hiking, ping pong, whatever gets you up and moving and that you like enough that you'll want to do it for a long time, that isn't so high-impact that you can't do it if you get sick again in a different way. Then incorporate that into your routine for maintaining your mental agility. You've already seen how sleep and energy levels affect your mind - that's always been the case, you're just more sensitive to that now, and exercise will give you better control over them.
posted by Mizu at 9:24 PM on November 29, 2016

I'm so sorry - I forgot to highlight another major variable mentioned in that summary, which is one you've also recognized, and which may be the cause of cognitive problems independent of any vascular issues:

" Participants with sleep-disordered breathing, defined by an apnea-hypopnea index >15, had significantly lower scores in tests measuring verbal memory, working memory, attention, and psychomotor speed, particularly among younger study participants. This study highlights that a potentially modifiable characteristic, sleep quality, was associated with worse function in younger patients, a population where cerebrovascular disease may be less apparent.33▲

So your observation that sleep helps is really worth attending to, I think - and it might be worth getting screened for sleep apnea.
posted by cotton dress sock at 9:48 PM on November 29, 2016

Last time I looked through the literature, there was no evidence that practicing things like logic problems caused improvement in anything except doing logic problems. Most of the research has been done in older adults, and particularly those with mild dementia, so it's questionable whether it applies to your situations.

The things that did help with older adults were practicing the tasks they wanted to get better at - so if you really want to do logic problems then they're a great thing to practice, otherwise consciously seek out the things you want to improve.

The other thing that seemed to have an effect was more social contact - I don't have the reference to hand but I read several papers that showed that social contact showed more of a (temporary) boost to cognition than practicing more 'cognitive' tasks.
posted by kadia_a at 10:56 PM on November 29, 2016 [2 favorites]

Are you in physical pain? Chronic low grade pain that you're used to can sap cognition, and medical pain relief or adjustments to physical discomfort like regular massages or comfortable clothing and chairs help. A pain specialist can help with quality of life issues especially if it's about side effects of necessary medications.

With meds, can you adjust timings? I take some pills only at night because they cause brain fog and that way I have a mildly groggy morning to stumble through but a decent day. When they were twice a day, I couldn't get work done.
posted by dorothyisunderwood at 11:26 PM on November 29, 2016

Thank you for all of your thoughtful answers so far.

- I'm not in any pain at all, and I'm lucky to need very few meds at this point. I'll need to check side effects. The fog started before I was on these particular meds.
- Fortunately no issues with anxiety. I'm getting good care and my biopsychosocial needs are being met. I speak regularly with a counselor/social worker.
- Exercise is on my list and it's had a cathartic effect on me in the past. I started hemodialysis about five months ago which totally whomps me out (and living at high altitude seems to make things a little harder), but I walk when I can and am trying to walk more.

Things got better after I started dialysis this summer and my labs improved, but I've hit a plateau.

OK! No more threadsitting...
posted by mochapickle at 11:44 PM on November 29, 2016 [1 favorite]

(and living at high altitude seems to make things a little harder)

Did you recently move there? Acclimation to high altitudes is (apparently) rough on anyone's kidneys, and is harder when people have kidney problems. The altitude increases breathing rate, which can elevate your blood pH (respiratory alkalosis). This can set a chain of events that can affect the levels of carbon dioxide and oxygen in your blood, if your kidneys aren't able to excrete bicarbonate at an appropriate rate.
(Apparently. I am only summarizing the link, and don't have the background to contextualize the information. But I think it's maybe worth reading a bit and talking to someone who does have an appropriate background, if you have the signs/symptoms of respiratory alkalosis. I would imagine that this could affect cognition as well as physical performance. There is a treatment for it, per the wiki.)

I do think it's going to be down to something that's determinable, like that, though.
posted by cotton dress sock at 12:14 AM on November 30, 2016

I had something happen like this due to a difficult health crash in 2010-11, and while I still have brainfoggy days sometimes, I am about 95% improved (I am a librarian and geek, and live in my brain, so when I say that at its worst, I couldn't focus on non-demanding fiction I'd already read for 5 minutes, you probably have an idea how bad it got.)

I have since had jobs as an information technology librarian and now as a research librarian, both of which involve a lot of writing, analysis, tons of random information management, and also a lot of interruptions and pauses. (I still find interruptions harder to manage than they used to be, but they're manageable.) So improvement is possible!

Stuff that helped me:

- Lots of naps. I ended up unemployed about six months after the actual health crash, which while difficult in some ways did mean I could sleep on my own preferred schedule and have a 3 hour nap in the middle of the afternoon when I needed it. Which was a lot for a while. I figured this was me giving my brain and body a chance to repair themselves without me getting in my own way.

- A fair amount of time actually lying down, not just sitting. This may be less essential for you, but I started getting a lot more *recovery* when I started regularly taking breaks to lie down for 20-30 minutes (or longer, if I wanted) every two hours or so. I'd read non-demanding stuff, listen to music or podcasts, etc, but there's some research that suggests that lying down simplifies a lot of things for our bodies. Again with getting out of my own way.

- Feldenkrais lessons (in my case, the Functional Integration sessions, which are one on one work.) Feldenkrais, as a body modality, is about learning which of the protective habits your body has picked up that used to be good for you and now aren't working for you you can give up, and how to get out of your body's way in working better, basically.

I swear this saved my brain and sanity in ways I still don't have words for, but the basic thing was that I was doing close work with someone who was observing me closely, giving me new things to learn and explore in manageable doses, so that when stuff was at its worst, and I had no idea how I was ever going to manage to brain again, I had something I could point to and say "No, learning stuff." and also have external feedback that I'd improved on some things. I was seeing my teacher mostly weekly.

I suspect there are other things that might fill the same basic goal (music, dance or movement, some kinds of sport/exercise, yoga) but it was really key to me to have external feedback regularly (at least twice a month) and for it to be puzzles that involved my body not just my head.

- Long-term project using skills I wanted: I built a writing project over time (it's a series of articles on a particular broad topic, each one about 1000-2000 words). At the beginning, each article took me days to write, but by the time I got a new job, I was regularly managing a bunch more writing more efficiently (and I could see that improving!) and it helped me feel a lot more confident I could maintain that level of braining.

- Other projects that required problemsolving / learning new skills (but with low stress). I also picked up knitting, which was really good for 'this is a project I have made visible progress on'. (It took me a while to find knitting I enjoyed: I have discovered I like stuff with repetitive patterns where it's easy to spot errors, and also double knitting, but find lace knitting very stressful.) But it also required a degree of minor problemsolving that was good for me and for building those skills again.

(I found dishcloths really handy starting out because they're not big projects, and I could start with really simple repeating stitch patterns, and then work up to more complicated things, and if I really messed up, tearing it all out and starting over was a couple of hours work gone, not days or weeks. Again, knitting may not be the thing for you, but the elements that made it work for me are something I recommend.)

- I found some of the puzzle brain games things useful - I used Lumosity a bit, and now use Elevate periodically, and they're good for giving me a bit of external "Ok, I am having a worse-than-usual day" adjustment measure. (I also use "Ok, it has taken me X amount time less / X time more" to get through my usual online reading as a yard stick.)

- Finally, I am ruthless about eliminating stuff that I don't have to think about. For example, my clothing is basically all 'cotton top in a colour, black skirt, black cardigan' with occasional variations of 'black top, coloured skirt', it all goes in the laundry together, it doesn't take special attention. Having a cleaning service means I don't have to spend precious brain and energy to do something I don't enjoy. I have a lot of routine habits about cooking / errands / commuting / etc. so that I don't have to spend time thinking about how I'm doing X thing I do regularly, I just do it.

I also still pretty ruthlessly limit how much I do outside of home - I've mostly settled on 'one weeknight thing a week at most' (that includes any errand more complicated than across the street from my apartment, so things like doctors appointments and getting the car serviced mean I don't do a social thing that week) and things only on one weekend day, with at least one weekend a month totally unscheduled. I don't see my friends in person as often as any of us would like, but my friends understand. This leaves me enough brain after working to make forward progress on writing and other brain-involving projects at home that I care about, if not as fast as I'd like.
posted by modernhypatia at 6:16 AM on November 30, 2016 [5 favorites]

There are multiple resources out there that indicate that kidney failure leaves a lot of toxins in the body which can negatively impact cognition. I know my grandmother in law has had a great deal of problems with her memory largely due to a stubborn kidney infection.

I have fibromyalgia and when a flare hits, so does the stupid. It's lovely called fibro fog, but I call it the devil's echo. When it hits, I lose words, forget to do things, have a hard time focusing and understanding what I want to do, and am generally stupid.

The first thing that helps for me is to recognize what's going on. I've found it far less likely that I'll get irrationally angry if I say to myself, "Teleri, you're in the fog. Breathe and relax." I've found that the more confused I get, the angrier I am and the less likely I am to be able to sort out the problem. So first off, acknowledge the fog is there.

If possible, I put things that need serious brain time off until after I've gotten a good night's rest and can focus. If that's not something I can do, I work on slowing down and sorting through the problem. I've also made those people around me aware of the issue so when I lose a word, my coworkers and spouse give me some space to either find it or work through an alternative. Fortunately, if I lose a word, I can usually find other words that are close. Like the other day I was trying to remember the word "pension." It was completely gone from my brain, but I was able to come up with "like a 401k, but what you used to get in the 50s." Give yourself some space to find words and be forgiving of yourself when you can't.

When it comes to reading, I make an effort to read nightly. If I'm having a dumb day it may be something as simple as a buzzfeed article, other nights it's full novels. After I spend some time reading, I try to make an effort to think about what I just read. I noticed that I'd be fine with reading, but five minutes after I quit, I couldn't remember what I just read. I don't go full book report, but I do try to think through what happened in the reading before I go to sleep.

In recent years, I moved away from writing things down. I started doing more stuff digitally and it was really impacting my ability to remember what I was supposed to do. Lately I've gone back to writing rather than typing. I use evernote and Swipes to build my to do list and I use MyScript to allow me to write with a stylus and have it converted to text. It has dramatically increased my retention and my ability to remember that I have something to do.
posted by teleri025 at 7:34 AM on November 30, 2016

I've found that L-Theanine (Suntheanine) alleviates my fibromyalgia fog wonderfully well. I use the Sun brand, purchased through Amazon for maximum savings and quality.

Of course, IANA/YD, and adding even this amino acid is something you should discuss with your doctor(s) before doing so.
posted by bryon at 1:10 PM on November 30, 2016

I'm not sure if this answers your question exactly but I think what I'm suggesting would be a way to improve your cognitive function. If I remember correctly, you have the same condition as someone in my family does. Apologies if I'm wrong but the main points should still apply.

She has Polycystic Kidney Disease, is on hemo and was told by someone in the hospital that she probably couldn't do peritoneal dialysis (PD) because of her large kidneys. I went online and asked a PKD group about it. Several had been on PD even with their large kidneys, recommended it at the first type of dialysis they'd tell someone to try and thought it was much better than hemodialysis.

She's switching to PD because it does a better job of cleaning blood, has less diet restrictions and is gentler on the body since it's done 24 hours a day, instead of 3 times a week. I tried doing a quick search and couldn't find an exact percentage so this is just what I remember being told.

Hemo is equivalent to around 10% function, Peri is closer to 15-20%. There is a greater risk of infection because of the stomach port so you need to be on top of keeping everything sterile (washing hands with antibacterial soap, keeping the area where you do exchanges clean) but I'm sure you've seen people at your dialysis center have problems too. There is a point at which it tends to quit working as well, maybe around 7-10 years (the peritoneal membrane gets clogged up?). If someone is still on dialysis at that point (no transplant), they have to switch to hemo.

Sorry for going all medical on you but I feel like this isn't brought up to people with kidney failure enough. The doctors really seem to push the hemo. I'm a terribly cynical person and wonder if it's because they get paid for being on call every time their patients are on hemo. I've known a couple of people on dialysis over the years and feel like PD is a better quality of life. If you're curious about PD, try an online search for a clinic and ask if there are any patients who'd be willing to talk to you. I don't know if it's something you feel up to doing but it's always good to know what your options are.
posted by stray thoughts at 8:25 PM on November 30, 2016

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