Sickle Cell and Memory Problems

Once in while we have a really great discussion on the Facebook page, with insightful comments and posts that should be shared with a wider audience. This entry is long, but so useful if you are having problems with your memory, and getting tasks accomplished at work, school, or home because of sickle cell.

Jane says, “I am an accountant and lately I find myself being called into my boss’s office to explain my work. I seem to be forgetting to do little things more and more frequently. I wondered at first if I just needed a break, but that didn’t seem to help much. I took a few days off and thought I would come back sharper and more focused. This does not seem to be the case. I found a few online articles that discussed memory problems and #sicklecell disease and also wondered if other warriors have dealt with a hard time with memory loss in a sense. I don’t know if it’s a related problem or if I’m just burned out in general. Has anyone had to stop working/change careers due to decreased brain function?

The following is a comment by Joyce Dadekian, and it was so helpful that it’s being archived here for others to benefit from ~SCW

By Joyce Dadekian

I don’t have sickle cell disease, but I became really passionate about getting engaged in advocacy and programming after spending summers as a counselor at a camp where many of the kids (50%?) had SCD. The strength of those kids motivated me to do my grad review school project on sickle cell’s effect on memory and attention, and to develop a program to help young adults figure out strategies to overcome some loss in memory in tasks they were pursuing. It is true that sickle cell disease has effects on the brain, and those effects increase with age. Because of that, people with sickle cell may have to come up with strategies to use later in life that weren’t needed in the past, but that can help them out now. It’s not a question of focus, desire, or dedication.

The good news is for many individuals with sickle cell, changing the environment or coming up with strategies to change HOW the task is tackled can have a great positive impact. I don’t know much about accounting, but if you can identify when you’re making errors (inputting a lot of numbers? during certain steps? when transferring numbers from one page to another? when it’s noisy and busy around you?), then you can sit down with your boss or close friends and brainstorm some strategies. Come up with several for each area, and then pick some to try.

For example, can you brainstorm a list of steps that you need to complete when you’re starting a new task or client and check them off as you go along? Can you get voice activated typing systems so that you can state and check your numbers simultaneously? Should you take a break after entering 10 sets of numbers to re-check your work? Or is that okay, and you just need to re-check a certain step or things at the end? Can you be relocated to a quieter area of the office or wear headphones to block out noise? I know it’s probably a pain, but it may be worth a try. I would also recommend talking to a hospital or clinic social worker before worrying too much about changing jobs. There MAY be legislation that protects you if you only need “reasonable and necessary accommodations” (access to voice software or extra time?) to support you in your current job. Also, what are your strengths, and how can you build on those to help you?

The conversation was continued on Facebook after requests by the warriors  for more information about the impact of sickle cell disease and some helpful strategies.

Alright. I don’t pretend to be a 1000-year old expert with all the answers. I don’t want to sound like every case is fixable or that every case is doom and gloom. Sometimes we have plans, but The Big Guy has different ones, right? He’ll work with us wherever we’re at.

Sickle cell can affect higher-level thought processes (cognition). It’s generally most affected by stroke/silent stroke, but even without strokes, chronic anemia can and sickle cells (which carry less oxygen) can take their toll on brain cells as the years pass. The ability to stay focused, to process things quickly, and to hold old and just-learned information (like a phone number) in your head are some of the most common areas that are affected in people with sickle cell disease compared to their siblings and peers that have similar environments. That means the difference is likely related to having sickle cell disease.

There are a few good things. Even though there’s a difference between straight up remembering things (like a list) for people with SCD vs without, there HAVE been studies that have found no difference with memory when both parties were given a hint (e.g. think of all the vegetables). That means that your brain has the knowledge, it just may have difficulty accessing it without a hint…and that’s something that may improve when you find ways to build hints into your environment.

Some examples of building it in are:

-Instead of saying “I have to remember to bill that client today,” try tagging that task to a specific event. For example, “right after I come back from the 11 am meeting and before I go down to lunch, I need to bill that client.” Having a time can help you “know that you should be doing something” and figure it out when you wouldn’t otherwise remember it.

-You can group items and tasks together in a logical way. If you’re going to the grocery store with a mental list of things you need to get, perhaps group them by category (okay: I need pineapple and cherries to make the best dump cake on the face of the planet, then from dairy I need…), or by the store layout and what you’d encounter first. You can do this with your workday, too. Perhaps it’s filling out a certain kind of form first. Perhaps it is ALWAYS filling things out in a certain order or ELSE WRITING IT DOWN so you remember what else you have to do. Perhaps you lump similar phone calls together.

–Lists: They are annoying to make, but so fun to cross off. Yes, they take an extra few minutes, but for me, they totally work. I keep myself on track by making a realistic time schedule for myself, writing in breaks to relax, and crossing things off as I finish them. I don’t forget things as often, and I don’t do as much cruising on the internet when I can see what I have to get done by when. Writing down every request the boss says if you’re forgetting those can be helpful, too.

-De-pressurize your environment as much as possible. When we’re rushed, we’re all more likely to make mistakes. Routines can also be helpful. For example, when you study at the same time each day, it’s not something that you have to decide to do. It’s just something that you do. Stay on top of things as much as possible.

-Build a system that works for you. When something isn’t working for me, what I do is brainstorm (often talking it out, because different ideas always help) 3 possible solutions. Then I try to pick the one(s) that I think will work best and implement it, so my system is always becoming faster and more efficient. I am CONSTANTLY doing this for school and now work. For example, can you sit near the front of a busy office to minimize distractions, put on head phones, request a move to quieter colleagues if they’re distracting, or recite the task that you’re doing? Can you set alarms to remind you to stay alert and re-focus? If all else fails…can you continue doing what you’re doing but switch job settings so that the environment is quieter or the workload isn’t as variable or intense?

-Don’t become your weaknesses, and don’t let your weaknesses become your identity, because you are SO much more than that. Build on what you’ve got. If you’re really organized, organize the shizznizz out of your work day. If you’re really motivated and prepared to put in whatever elbow grease is required, draw on that. If you’re a creative problem solver, use that. Got great support? Seek their help.

I worked with young adults with SCD who were interested in returning to school for my project, so that was my lens and experience (vs middle adulthood). Similar concepts do apply, though. Some practitioners in my field (occupational therapy–helping people do the things that the need to do for daily life after an injury) work with people who have suffered traumatic events to the brain (bad head injuries, strokes, diseases etc.). Using these strategies and environmental compensations all things that have been helpful for the clients they work with. I also just think they’re plain helpful to any human being on the face of the planet, as I’ve found many of them helpful to myself. This is not at all an exhaustive list, but that would take forever. I’m don’t pretend to be the most consistent correspondent (ask my extended family), but if anyone has a specific challenge that they’d like some specific strategies for, I’d be happy to try to help brainstorm solutions and blast back a Facebook message or two.

Also, you’re all facing some similar things. Your advice and what has helped you will be most helpful to others. I just wanted to affirm you in that what you’re experiencing is real and not a sign of incompetence or laziness, and there are many things to try before you lose hope! It sounds like from comments below that follow-up on the medical side is important, too!

Please let me know if something doesn’t make sense, or you have different opinions or input!

I hope it doesn’t offend that someone without SCD is commenting. I love this page, and learned a lot as a provider about what I hope TO do, to know, and what NOT to do. I just thought another perspective could be helpful or reassuring! Stay strong and awesome!

Written by Joyce Dadekian