Originally Posted by PCSLearner

Excellent idea Concussed Scientist! I can give some perspectives from a caregiver's point of view.

1) Treat a brain injury at least as gently as you would a torn ACL. It's scary watching someone you love struggle to do simple things and as a caregiver you want it to get better immediately. You wouldn't be surprised if a knee with a torn ACL buckled if walked on too soon, so give your person a break and give them time and space to heal.

2) Rest in the dark and quiet. Restrict your person's exposure to noise and light and things that require concentration (TV, texting, crowds, excited conversation, etc.). Entertainment should be limited to low stress, chatty, mostly one-sided conversations. For example, I would shut all the curtains, turn off radios and TVs, and talk with my daughter about something as trivial as our dog's activities for the day. This of course required some serious creativity on my part but it was soothing and undemanding for her.

3) Learn something about reflexology and/or accupressure. Gail Denton's "Brainlash" is a fantastic resource for this. These activities not only give your person some non-prescription relief from symptoms, but they make you feel like you're DOING something to help. There is nothing worse than standing there helpless as someone you love endures agonizing pain.

4) Keep a journal for your loved one. Resist the temptation to ask "how are you" 50 times a day. Just keep track of simple things like whether or not they are still cringing when someone empties the dishwasher, or how quickly or slowly they go up stairs, or the status of their sense of humor, or whether or not they show memory from yesterday or last week. These little indicators can really help you start finding patterns that exacerbate or alleviate symptoms.

5) No offense to anyone here, but one big rule of thumb is not to completely trust the brain injured person for information about themselves. Sometimes my daughter would say, "I had a great day, I feel good." Then the next day she would say, "Oh yeah, I went to the nurse's office with a headache twice yesterday it was awful." Or when she told the neuro, "I'm having two or three headaches a day," only to say at the next appointment, "I'm down to having two or three headaches a day, before I had a constant headache most days." She was seeing double for most of the year but didn't really realize it.
It takes a lot of energy for the injured person to describe how they are feeling in a way that the caregiver can understand. They simply don’t have the energy, or feel so bad, that they don’t provide the information you might need to help them make decisions. You must learn to observe. Those scary, glassy-eyed stares should be read as neon signs saying, “closed for business…temporarily shut down”. It’s tempting to try to get the person to re-engage, talk, whatever when that happens but that’s when they really need to rest.


6) You MUST advocate for your person. Research any symptoms that might respond to some kind of treatment (i.e. ambient vision, hormone/adrenal/thyroid issues, vestibular problems). It's up to you to research and find the right docs to help. You must also help them navigate through school or work or household responsibilities and especially help with personal relationships to reduce stress. Help them make decisions so that they don’t hurt themselves again (i.e. sledding is a bad idea right now, wear shoes with traction, eat your protein, etc.).

I'm sure there are about a million other things for caregivers to know. These are the biggest things I wish someone could have told me when we first started this journey.

One final note, it does get better. It sometimes takes a very long time, and your loved one may always have a lower threshold for headaches or other symptoms, but there is reason to hope. Doctors start saying: "It can take 3 months," then, "it will take at least 6 months," then they start talking in terms of a year or more, it is very scary and very frustrating.

I was obsessed with timeframes at the beginning. Here’s a little synopsis from what I've experienced and heard from other moms:

First 3 months are, frankly, terrifying as the cascade of cell death evens out and you start realizing that this is serious and it isn't going to go away in three weeks. We are used to people experiencing improvements from one day to the next following a serious injury. Brain injuries do not follow this pattern. There may be several good days followed by several bad. It’s unpredictable. Steep learning curve for caregivers and loved ones.
3-6 months: Things sort of maintain in a fairly terrible state. Lots of symptoms but you aren't as alarmed by them now and you're learning coping techniques. Hopefully by now you’ve seen a good doctor who can explain when you should go to the emergency room and when you should just be patient and what else you need to do.

6 months: Lots of people notice huge improvements in pain and cognitive symptoms around this point. Fatigue and feeling easily overwhelmed seem to be main culprits.

By one year most people seem to have chased down therapies for any treatable injuries and seem to have pinpointed triggers and "work arounds". At one year my daughter had very subtle issues. Now, at 15 months, she answered someone that she was a 9 out of a 10 when compared to before. That's a beautiful thing, isn't it?

This is an appropriate time for me to sign off the boards. I will probably be back to check in, but it's healthier for ME to move on to other things. I hope I have offered even one person a little help over the months. Thank you all for your support and suggestions. All the best to each and every one of you.

Originally Posted by July63

Things you wish you'd known when you first got post-concussion syndrome.

That every concussion is different, where some people get better at 6 months, some people never get better. I thought all concussions were the same and all treatments work on everyone, but I am an example that they aren't. Now I know it, and though I am still in denial (and always will be), I am living with it.

Originally Posted by MarileeG

Hi CS,

what a terrific idea you have here. I'm happy to add some thoughts.

1. get to a neurologist if you haven't already. you might need PT or other treatments, don't be afraid to ask questions and if you are able bring someone with you who can push back on the doctor if you feel like you're not getting answers.

2. if you suffer from over stimulation wear sunglasses and ear plugs. This tip was shared with me here and made a world of difference.

Also, I've been struggling a lot with noise sensitivity and over stim even at home. Noises like lawnmowers, weed whackers (have no idea why a lawn in seattle needs to be mowed in Dec), big trucks, esp. garbage trucks (Ugh - the worst) all cause me a lot of trouble.

Yesterday my husband came home with a set of noise canceling headphones for me. Wow is all i can say. I think there are some really pricey ones made by bose but i didn't get those. I'm not sure how much he spent, all i can say is so far its worth it. I feel protected the same way i do with sunglasses on and it takes the ear plugs to a whole new level. I wore them all day today.

hope these are helpful to anyone out there.