Welcome!

Welcome!

Hello, & Welcome!

Target Audience:

The information here is primarily meant for TBI (traumatic brain injury) survivors (includes concussion & Covid Long Haulers with brain fog) & their loved ones, family & friends. Those who are stroke survivors, senior citizens, cancer patients and survivors battling chemo brain fog or facing cognitive difficulties post-covid/covid Long Haulers, ADD/ADHD, Lyme Disease and others experiencing cognitive challenges may find that some of the information here may be applicable to them, as well. Additionally, some of the info here may also be helpful for folks who are low/no-income who are trying their best to affordably make ends meet. Folks who are looking at accessibility and design accommodations may also find some helpful things here.

If you are a loved one who has found this information, please go through it, PRINT out things, and share them in small bits & pieces with your loved one. It’s highly likely that someone who is newly affected by this probably won’t find this information early on post-injury, even though they would likely benefit and need to start implementing some of these changes mentioned in the information in here as soon as possible, especially for things that involve clock ticking.

Whether or not you realize it, by nature of your injury/condition, you likely have a number of clocks ticking in the background, which while they may happen to be silent right now in the immediate shock & aftermath, they will likely grow louder faster and before you know it.

Step 1 is looking for, recognizing and identifying the clocks around you or your loved one that are ticking.

I had/have so many clocks around me that were virtually invisible in the cloudy haze of everything going on and I had/have no idea that they were there. I didn’t even know to look for them. I am still coming up against new clocks I didn’t realize were ticking, and each one is a new surprise and frustrating, usually due to implications, especially things that could’ve been addressed way earlier. Hopefully this will help highlight some of the hidden clocks that are likely surrounding you or your loved one that might still be invisible right now to you.

Executive Functioning

Part of having good executive functioning is being able to anticipate or predict and look out for those clocks. Many folks who have TBIs and other cognitive difficulties end up with impaired executive functioning difficulties; it is apparently very common. While I don’t completely understand the term “executive functions” and the wide variety of things that fall into that group, it’s a term you or someone else can google on your behalf and someone else may be better able to explain it to you.

Why I’ve tried to make this:

This area is something that I’ve been thinking about for a while and is primarily driven by a number of pain points that have come up, as well as some potential solutions that I’ve worked really hard with to either implement, adapt or come up with, through discussions with members of my care team, family, friends, neighbors and acquaintances. There is still a lot that I’m trying to figure out, so it’s a work-in-progress. I don’t have it all figured out --- not even close. Hopefully, it’s a helpful primer for others who aren’t as familiar.

Some of the info here may also not be applicable to you depending on your geographic location.

Vision:

I envision that a lot of this will be things that I wish someone would’ve hand-held me through along the way and let me know in a timely & relevant manner. For a long time, I was not even in a place to try to consider let alone think about a lot of these things since I was physically in so much pain. I really had to struggle, for a long time, just to build up tolerance to try to stay awake for more than an hour or two, if that, because my body was so physically exhausted trying to start to repair itself.

I was fortunate & lucky in that I prior to everything, I was a saver and I already had a lot of things and systems in place that helped everyday life, especially bill paying, run smoothly and it helped cover me with a small buffer for a while until it didn’t. I know that for a lot of other folks, that may never have been an option and that they’re starting from a tougher spot, and my heart goes out to you; I know it isn’t easy.

OT and Speech Therapy

I also wish that rehab care were more widespread available and better understood by those both outside as well as within the medical community. Especially what speech therapy means and covers, as well as occupational therapy or OT.

As far as I can tell from the patient perspective, there’s a real shortage of OTs and speech therapists out there and trying to just even locate them, even with talking to insurance or asking for appropriate referrals from primary care providers (PCPs), is really difficult, especially if you’re not searching on behalf of a minor who is school-aged. Hopefully as more people learn more about what they do, maybe they, themselves, will go into and increase the number of people serving in those professions.

I also hope that the general medical community will learn more about these professions and what exactly it is that they do so that they can make more appropriate referrals to those allied health professionals on behalf of patients to improve their quality of life via appropriate care

Spoiler alert: a speech therapist is not just for people who can’t speak aloud; speaking is actually just only 1 of 4 areas that a speech therapist covers, yet as far as I can tell, to the average person, that’s seems to be the only blatantly obvious reason why someone would be referred to see a speech therapist.

The other 3 areas that a good quality speech therapist should be able to cover are for helping people who have swallowing difficulties, something else, and cognitive function rehab.

So for every hopefully well-intentioned yet mis-informed person who says something along the lines of,

“but it sounds like you can speak ok,”

try your best to tell them that

sometimes, for some people,

speech therapy has absolutely nothing

to do with how well you are able to say words aloud.

There are people who are able to think clearly but who aren’t able to physically speak the words aloud, and there are people who are able to speak words aloud but who aren’t able to think clearly. Different parts of the brain are involved with different functions. It can quickly become frustrating that the emotional labor and work to educate and spread this basic information and to quell this very common and typical misunderstanding often is left falling to the patient to self-advocate when you may have difficulty finding the right words to communicate this information, especially when it’s all brand-new to you.

There is a real cognitive dissonance that occurs in those who aren’t familiar with the term “speech therapy” with them thinking that it’s therapy to help a someone speak better, when that’s really just 1 of 4 parts of what a speech therapist covers.

If you are a loved one of a brain injury survivor, I would recommend googling the term “cognitive dissonance” and start to become familiar with the concept, because

you will likely repeatedly be faced with real-life examples of cognitive dissonance on a regular basis in your interactions with your brain injury survivor, especially if they appear to look “ok” from the outside.

The sooner you understand and accept this, the better and less frustrated both you & your brain injury survivor will be. Likely, the more time you spend with your brain injury survivor, the more you’ll actually start to recognize the seemingly subtle differences in how they are now.

Sometimes, you may find that this leaves you feeling upset, with a sense of loss, grief &/or disappointment on behalf of your loved one. Sometimes, the things we feel the most sorrow for are the unrealized dreams and intentions that we’ve silently held in our hearts on behalf of ourselves and others we care about.

All of these feelings are ok, to be expected, understandable, reasonable and normal.

Something that’s probably important to try to remember is that even if the injury happened suddenly, it’s going to take time to unpack and try to figure out next steps and to become introspective and reflect and figure out what this all means in the greater scheme of things. Try as best you can to take it easy on yourself and know that even if it’s not at the pace that you wished it could be, that you’re doing the best that you can, and that is good enough.

Invisible Disability:

One of the terms that, unfortunately, will start to come up rather quickly and frequently, especially as you move along in your care and navigate trying to figure out whatever is your “new normal” is the concept of “invisible disability.”

Specifically, humans tend to look for certain types of visual cues when they see others in their environment: they see a wheelchair, a rollator, walker, crutches or a cane and they may quickly and more willingly be apt to stand up and give up their space or seat to a fellow passenger visibly utilizing one of those physical visual cues.

With a brain injury, you can look ok on the outside and “pass” for ok/non-injured, which in some ways may be fine in that it’s not necessarily drawing unwanted singled-out attention to you, but in reality, you still have a brain injury which is impacting your interaction with the world and your processing of information, inputs coming in and your ability to effectively communicate your goals, needs and wants externally to those around you.

If you are a loved one reading this, please try your best to keep this in mind when interacting with your brain injury survivor and do your best to advocate on their behalf since they likely have enough going on right now, that to add educator to it everytime this misunderstanding comes up quickly becomes cognitively draining; you only have so much cognitive energy allotment in a day, and it’s not an effective use of cognitive energy to keep having to do the same basic educating about what an invisible disability is that gets in the way of rehab and recovery hopefully sooner & better.

As far as I can tell, this seems to be a really tough stumbling block for loved ones and those who knew survivors before their injuries and the sooner that they’re able to realize and come to terms with this, probably the better off all involved will be.

My goals here are as follows:

-I don’t want others to have to unnecessarily have to go through the same difficulties that I’ve gone through, especially if those difficulties can be avoided. So many things are going on, it’s incredibly difficult to keep everything together and not lose/accidentally drop info. I very much believe that some of the strongest and best leaders are those who quietly lift up those around them and take them along on their journey so that they, too, may benefit and hopefully have an easier time than you, yourself, did.

It’s part of doing your part to try to make the world a better place. I think it’s probably one of the best examples of practical civic engagement.

-things are hard enough with a brain injury & I wish other entities were more understanding and accommodating of that and that others would better anticipate where help may be needed.

-I’m hoping that by writing/videoing some things, the information will hopefully become more organized, and later easier for me, rehab-wise, as well as for others to benefit from and remember. Once you’ve had a brain injury, it makes it more likely that if you have another one in the future, that it’ll be even harder for you to work to recover after future ones.

I’m trying to do the best I can to set myself up for success so that hopefully there’ll be more support in place for a sturdier base now & in the future.

-I’m also hopeful that eventually, there might be some meaningful secondary passive income that can be generated from this to help support things. This is one of the discussion topic areas I want to make sure to cover since it’s really important and often not immediately front-of-mind right after a TBI, but is incredibly pertinent and relevant and is perhaps one of the biggest life-changing silent clocks ticking in the background.

Overarching Themes:

Massachusetts is the historical home to a number of Transcendental philosophers, including Ralph Waldo Emerson. In simple, straightforward terms, the Transcendentalists believed that life and many of its ailments could best be solved by getting out and being amongst nature.

One of my favorite quotes is as follows:

“To leave the world a bit better, whether by healthy child, a garden patch, or a redeemed social condition; to know that even one life has breathed easier because you have lived – that is to have succeeded.” - Ralph Waldo Emerson

I think this quote is a good summary of the perspective I have in terms of purposeful motivation and driving force behind this info.

UX Design Considerations:

Wherever possible, if I’ve managed to figure it out, attributes I’d like to include are as follows:

-audio readings of the text. A human voice is often much more pleasant to hear than some of the computerized versions I’ve heard. If you have visual &/or auditory sensitivities, it’s easier to just press a button that plays you the text. So many times, I’ve wished that websites would have that function as it’s a sorely missed accommodation that’s relatively low-hanging fruit. I want to try my best to lend my voice here so that hopefully it’s easier for you.

-dark backgrounds. I’ve tried hard turning screen lights all the way down & still finding them way too bright that the irritation makes me feel sick. While I don’t know what your device is like, I want to try to make this easier for you, too.

-low/no-scrolling. Unsure exactly how to do this, but am going to try my best to figure out how to hopefully not have to have that. Scrolling makes me feel sick, and I know there’s a good chance that motion may likely also affect you, too. I don’t want that to be a barrier to implementation for you to gain knowledge that may make this easier for you.

There is a time & place for rehab exercises, in particular, vestibular rehab, but this isn’t it.

I don’t want to be working against thoughtful design considerations that impair the focus here, which is knowledge transfer of potential community-based resources that may help in your care & rehabilitative recovery.

Disclosures:

NOTE: None of the information presented anywhere here is meant to serve as a substitute, representation or in place of medical information, care or financial advice; please consult your medical team if you have any questions regarding your care. While I do come from a public health background, I am not a clinician nor a financial advisor. The views and advice expressed here are my own and may not be applicable to you. Also, there may be affiliate links posted throughout where may eventually receive a small commission for any purchases made &/or ads clicked on/viewed.

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With all of that said, let’s begin.

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