In case you missed it, BEST shared recaps and a video for both days of the 2019 Washington State TBI Conference in Spokane, Washington on April 15th and 16th. The recaps provide additional informational links and the video shares our virtual photo album of the event. As a social media bonus, we did a video from the road on the way back west showcasing the beauty of the state.
For the recap of day one (April 15th), click here.
For the recap of day two (April 16th), click here.
For the videos, see below.
(Editor’s Note: Sleep is critical to our health and well-being to every human being. Writer, BEST guest blog contributor and stroke survivor, Isaac Peterson, explores all things sleep in his latest article. KT)
Having a traumatic brain injury (TBI) sure is a real grab bag full of goodies and surprises, isn’t it?
But none of the surprises are good ones—like the one about how hard it is now to get regular sleep.
Sleep disorder studies have shown people with TBIs are three times more likely to have difficulty with regular sleep patterns than the norm. About sixty percent of TBI survivors have some sort of sleep disorder apparently. Women seem to have that problem more than men, I’ve read.
Sleeping is one of the ways your brain tries to heal itself after a brain injury. While you’re in a sleep state it’s much easier for your brain and body to do the things they do to replenish and reinvigorate themselves. Since you are not receiving lots of external input and burning calories, more of your brain is free to restore your functions and re-energize yourself.
Sleep helps to keep your internal clock on a normal schedule, but TBI knocks that clock out of whack.
While I was still hospitalized, like a lot of people with a severe TBI, sleeping was all I wanted to do. Hospital staff had other ideas though. I wasn’t allowed to sleep as much as I wanted—they would wake me up at odd times for stuff like physical therapy when all I wanted to do was sleep. I couldn’t get into a regular sleep pattern while I was there.
After my discharge, it was still hard to get into a regular sleep groove. I tried to force myself to stay awake at first because I was afraid to sleep. I guess the experience of waking up in a hospital bed with no idea how I got there was still too fresh. Many nights staying awake was not a choice anyway, because I would often get serious insomnia and I was grateful for it at first.
Lying there in the dark with my eyes closed and playing soft music while I counted backwards from 100 helped sometimes; most of the time I’d have to keep doing it over and over. The times it worked, I think was just because all that counting gets really boring, really quick.
I looked around for something that would get rid of insomnia and let me sleep. I thought about warm milk at bedtime but it turns out that’s an old wives tale (or old husbands tale? Whatever, it’s an old tale). Warm milk does nothing to affect sleep patterns—so if you like milk, drink it, but don’t expect it to help you sleep.
I’m told it’s not a good idea to sleep with lights on—that includes TVs and computer screens. Apparently, lights may keep your body from making enough of the hormone melatonin, and melatonin helps induce sleep. Darkness helps you sleep.
One thing I still go through is something you probably know all too well—the times when the need to sleep would just sneak up out of the blue and just take over everything. That happens a lot when there’s too much external input and the sensory overload reaches meltdown levels. At those times I can sleep all day and then spend the rest of the day winding down from all that exertion.
I learned not to fight it when I feel one of those heavy nap times sneaking up on me. I just go with it and view it as part of my training for a spot on the Olympic power lounging team.
I could sleep for what seemed like days, and that sleep was a very deep, restful sleep–boy do I feel refreshed afterward! I still woke up with a traumatic brain injury, though,but I did feel better for a while.
Then there was the other side that kept me from setting a regular sleep pattern; I also have insomnia a lot. Insomnia is only good on those nights when you’ve just got to put on your superhero costume and go out and fight crime all night.
When you can’t sleep, it’s still a good idea to keep lying down anyway, because even though it’s not as good as sleep, it does give your brain and body a rest and a better chance to get somewhat refreshed and reinvigorated.
And here’s one for the books: one of my prescription medications causes drowsiness and another causes insomnia. Some nights I have both—I’m tired and sleepy but I can’t go to sleep.
My doctor recommended I try taking a couple of Benadryl at bed time. I tried it and it seems like it really works a lot of the time. I sleep like deeply and it’s a really restful sleep too. I don’t quite understand how an allergy medicine helps me sleep, but I’m not arguing.It works for me but it may not work as well for somebody else, though. Ask your doctor about options for you.
For me, I think it’s a good alternative to actual sleep medications because some of them have side effects like burning or tingling in the hands, arms, feet, or legs; changes in appetite; constipation; diarrhea; difficulty keeping balance; dizziness; daytime drowsiness; and dry mouth or throat.
All this talk of sleep is making me sleepy and it’s late. I’ve gotta go catch some Z’s now, but I’ll see you again soon, when I’m rested and wide awake.
Isaac Peterson grew up on an Air Force base near Cheyenne, Wyoming. After graduating from the University of Wyoming, he embarked on a career as an award-winning investigative journalist and as a semi-professional musician in the Twin Cities, the place he called home on and off for 35 years. He also doesn’t mind it at all if someone offers to pick up his restaurant tab. Peterson also welcomes reader comments. Email him at email@example.com.
(Editor’s Note: For Brain Injury Awareness Month, I reached out to our BEST Team and BEST guest bloggers to gather their thoughts, ideas, tips and strategies on self-care. Marc Macialek, writer, mentor and creator of recoveringfromtbi.com , shares some important ideas and thoughts in his latest guest article below. Thank you, Marc! KT)
Kim wrote me at the beginning of March asking for my thoughts on self-care to contribute to the BEST campaign of Super Self-Care during Brain Injury Awareness month.
Honestly, I was flattered that she would ask.
I always meant to write something up. But here we are at the end of the month.
I saw fellow survivor and BEST contributor Kirsten Short’s contribution to the BEST campaign on Twitter about an hour ago. I immediately felt guilty.
Not because of anything that Kim, or anyone over at BEST said, but because of my own expectations for myself. I’m a people-pleaser by nature, and I want to make everyone happy.
As I’ve sat here thinking and feeling bad about myself, it dawned on me that this is exactly the kind of thing that my fellow survivors (and sometimes caregivers) need to hear.
All of us have people in our lives. And sometimes those people will ask for something. It’s almost never malicious. They generally don’t know what’s going on with us behind the scenes.
Most times from their perspective, it is a small thing. Perhaps its help with a project. Sometimes it’s an invitation to an event or party or get together.
Many times, they see something valuable in us and want us to be a part of their lives.
The reality for many of us survivors, and for many caregivers, is that there simply isn’t as much of us to go around.
A survivor’s mental, cognitive, and energy resources are spent holding basic life functions together. If you have cognitive bandwidth to be able to work, that often saps the remaining energy you have left.
Caregivers can be exhausted after the selfless work of caring for their loved one.
In these circumstances it can be a difficult, but necessary, decision to care for ourselves instead of meeting the expectations or desires of those on the outside.
Thinning out our to-do list can be very difficult. Often it means setting new boundaries with family, friends, colleagues, and organizations that we participated in.
How do you handle these conversations? Especially when you are a survivor and have an invisible injury.
Here are some things to keep in mind:
Prioritize: Look at all of the demands you have (social, personal, and professional) and decide what you want to do. Know that this is a guess and you may need to reign things in tighter or relax them as you understand how much energy you truly have.
Be kind but firm: You did the work in step one to breakdown what you felt comfortable doing. As you explain your situation, some people will be respectful and supportive. Others will not. And the people who fall into each category aren’t necessarily who you’d expect. Regardless, stand your ground. Have the necessary conversations when you have sufficient bandwidth to do so.
Relax: One thing that many of us yearn for is a feeling of normalcy. Just this week, I had a few interactions in some Facebook support groups that bear mentioning here.
- A woman who had been dealing with her injury for a few years had noticed some recent improvements. She wanted to spend a night with her husband like they used to do before her injury. For them that meant going out to eat and then going dancing. Her husband suggested that it might not be wise to push the envelope so far so quickly. They opted to have dinner at home and put on some music and dance.
- Another lady was lamenting how she felt after going out to do something she enjoyed. She had a terrible headache and was feeling exhausted. After expressing her frustration, she said how nice it was to briefly feel normal again.
Part of caring for ourselves is being able to relax and enjoy ourselves from time to time. That can be difficult for TBI survivors and caregivers who are ever vigilant about managing energy.
Perhaps it is OK to let ourselves go from time to time. Nothing crazy. And we don’t want to put anyone in danger. But in a reasonable way, be ourselves. Even if it means paying for it for a few days.
A Long-Term Plan
While letting loose can certainly help us in a one-time event, we need some day-to-day tools that are sustainable.
This can happen through a routine that lets us decompress, regroup, and recharge our batteries.
There are several ways to do that:
Exercise: Moving our bodies is powerful. It’s great for our bodies. It’s great for our brains, It’s great for our souls. Simple yoga may be all you can do if you have mobility or balance issues. Walking, cycling, or running may be options if you are facing mostly cognitive deficits from your injury. In any case, double check with your doctor before you get started.
Meditation: With some practice, I have been surprised by how refreshed I feel after 10-15 minutes of meditation. It helps greatly with my temperament issues, some headaches, and over-stimulation. It has definitely been one of the more unexpectedly effective tools to manage the effects of my injury. There are many ways to meditate, and people like different things. If you’d like to try what I do as a starting point, you can check this out here.
Beware of over-stimulation: It’s common for many survivors to lose their filter to external stimuli. Simple things like background noise and too much screen time can wear us out. What exhausts a brain means different things for different survivors. For many people it is sound. For others it is visual. Personally, visual over-stimulation drains me. When I’m tired, though, sounds can also wear on me. If this is a factor for you, learn what it is and how to minimize it. You will find that you have more bandwidth to deal with other things.
How do I take care of myself?
This was one of the writing prompts that Kim sent in her email. I snickered audibly when I read it. Because, to be honest, I have not been doing a very good job lately.
Life recently has been extremely demanding.
We’re a family of four now. Our oldest is a rambunctious toddler and we have an almost 3 month old infant.
I seriously doubted that would happen after I had my injury.
Family and professional responsibilities are requiring me to work a lot of hours and not get a lot of sleep.
We have made some decisions that make life difficult in the short term in order to achieve some long term goals that are very important to us.
Overall, I am extremely grateful that these activities and this level of exertion are even options. I don’t know how I keep up.
Then there are the days where my brain rebels and reminds me who’s boss. Bad temper, poor memory, poor impulse control, and bad prioritization all rear their ugly heads.
My goals, my progress, and most of all, my family suffer for a few days while I regroup and get back to my more sustainable routine.
Those are the days that I remember that no matter how long ago my injury was, it is still there. It’s ready to show itself whenever I try to ignore it. Sleep, boundaries with others and rejuvenating activities are what allow my brain to calm down and bring my life back into balance.
Adequate self-care is very personal to every survivor and caregiver. Be honest about what it means for your, and your bran will thank you for it.
Marc Macialek survived a traumatic brain injury in spring 2012. After struggling to find good resources to help with his recovery, he was able to connect with a doctor who gave him tools to make the most of his recovery. Now he works to help survivors and caregivers find the resources to make the most to survive and thrive through the recovery journey. You can find more of his writings at his site recoveringfromtbi.com.
The 2019 Washington State TBI Conference has come to a conclusion. What a terrific experience it was!
First, we felt a warm welcome to city of Spokane. Thank you for being a super city!
Second, the day kicked off with some morning greetings, door prizes and fun, which then launched into an important morning session with Dr. Todd Wylie on vision therapy and brain injury.
Dr. Wylie expressed the science, symptoms, strategies, treatments and tips on vision therapy and vision issues. It was an interesting discussion with a question and answer session. Read all about Dr. Wylie’s story, here.
Participants were able to take a break, visit and explore the exhibits continued from day one of the conference. Morning breakout sessions after the break included advice and support, assistive technology, brain injury in the corrections system, domestic violence, how to start and maintain a brain injury support group, yoga, art, and massage.
Lunch was shared with important conversation around the parties receiving final approval for settlement to reform Washington’s forensic mental health system (Trueblood Lawsuit Settlement). Read about this critical work, here.
The collective group of conference goers shared a warm tribute to the late Tommy Manning, Washington State brain injury advocate, activist, and supporter. As a survivor himself, he made an enormous impact on the support of other survivors. Learn all about Tommy’s story in a tribute from BEST Executive Director, Gloria Kraegel.
Former legislator, Dennis Flannigan , advocate Darci Ladwig, and Dianella Clark, of the Washington State Traumatic Brain Injury Council and a brain injury survivor and advocate, gave a rousing, hopeful and inspirational group panel on advocacy and activism.
The advice given by all three? Here is the common thread:
- Talk to your legislators about brain injury. Practice talking to them. Don’t be afraid to speak to them-you are the expert in your brain injury.
- Legislators want to hear from you and hear your story.
- Keep contacting legislators.
- Organize people power. The more people that share their story, the better.
After this inspirational session, conference participants had other fantastic offerings of eight different work shops, from sports concussions, screening for TBIs, yoga and more.
Of course, there was more visiting, new friends, old friends, and warm embraces.
Thank you superheroes, for an amazing conference experience.
Please enjoy this video of our favorite pictures.
The 2019 Washington State TBI Conference in Spokane, Washington April 15-16, 2019, is a wrap!
Here are some of our favorite pictures in video to mark the event. We will be sharing additional recaps and more soon. Stay tuned!
Many thanks to the real-life superheroes of the brain injury community. You are truly the BEST!
The first afternoon of the 2019 Washington State TBI Conference in Spokane, Washington, was a wonderful combination of sharing, caring, important conversations, resources, and information.
The exhibit hall was the site of participant registration and a variety of exhibitors who shared a wide variety of resources. Organizations included the Brain Energy Support Team (BEST), HeadStrong, Northwest Brain Injury Symposium, TBI Council/Alta, Disability Rights Washington, Spokane Veteran’s Center, Employment Security Office, Wallingford Support Group, St. Luke’s Rehab Institute, Disability Action Center, Brain Injury Alliance of Washington, Brain Injury Alliance of Spokane, the Aging and Long Term Care of Washington, and the Department of Veterans Affairs.
The keynote speaker to kick off the conference was Dr. Cheryle Sullivan and her presentation, “Resilience and Advocacy–The Journey Together.” Dr. Sullivan shared her journey in three parts: as a doctor, a caregiver for multiple family members with brain injury and brain-related medical conditions, and finally as a brain injury survivor herself.
Dr. Sullivan endured six traumatic brain injuries over her lifetime, with the most challenging impact with a ski accident in 2002.
The physician was met becoming a patient, along with a loss of independence, struggles at work, memory issues, mental health and emotional struggles and more.
Navigating the medical system was not easy.
Over time, Dr. Sullivan was able to met the right medical team, specialists, therapies and support groups after enduring so much for so long.
Her message was that of not giving up, to keep going, and finding emotional support, a critical part of the recovery process. Over her journey, she became more hopeful, inspired and a thirst for learning more.
Dr. Sullivan is the author of “The Brain Injury Survival Kit” and a contributor to “Chicken Soup for the Soul: Recovering from Traumatic Brain Injuries: 101 Stories of Hope, Healing and Hard Work.” She is also a presenter and speaker.
After the keynote speaker, breakout sessions occurred covering various topics such as art as therapy, TBI 101, how to transition to independence and suicide prevention.
For one of the breakout sessions, BEST Executive Director Gloria Kraegel and Stacy Chay, LICSWA, MHP from Eastern Washington University, gave a joint presentation on suicide prevention.
Both Kraegel and Shay presented powerful conversation, statistics, information about stigmas about suicide, strategies and a wealth of resources on traumatic brain injury, suicide and suicide prevention.
In the coming days on the BEST website blog, we will be sharing additional, in-depth information on this critical topic in a separate post.
After the break sessions, conference participants had the opportunity to ask questions, mingle and visit with others.
Looking forward to tomorrow’s experience! Thank you to all of the participants that made this first day special.