11 posts tagged “TBI”

March is Brain Injury Awareness Month. Let’s learn more, together.

Posted March 21st, 2017 by

Brain injuries can happen to anyone, anywhere at any time. The important thing to know is that you’re not alone, which is the primary theme of Brain Injury Awareness Month organized by the Brain Injury Association of America (BIAA).

At least 2.5 million children and adults sustain traumatic brain injuries (TBI) in the U.S. each year – on PatientsLikeMe alone there are 7000+ living with a traumatic brain injury. Take a look at the diverse community living with TBI on PatientsLikeMe:

Brain injury awareness gender spread

Brain injury awareness age groups

 

PatientsLikeMe members have spoken up about living with TBI, how they manage it and their initial thoughts after being diagnosed. Here’s what one member, Vicki, had to say about life after her diagnosis with TBI.

Want to get involved? There are a few different ways you can show your support during Brain Injury Awareness Month – you can share one of BIAA’s six promotional posters, better educate yourself and others about brain injuries with this fact sheet, or join the conversation on BIAA’s Facebook page.

If you’ve been diagnosed with a brain injury, join the more than 7,000 members on PatientsLikeMe who are living with traumatic brain injuries. Ask questions, track your experience and find a place in the community.

 

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“The most important thing is to know you are not alone” — Member Vicki opens up about her TBI

Posted September 13th, 2016 by

Vicki (Vickikayb) is an avid gardener, volunteers at a wildlife rehabilitation center and loves to cheer on the Kentucky Wildcats. She’s also been living with a traumatic brain injury (TBI) since 2004. In a recent interview, Vicki shared how she lives a full life in spite of her condition and how it’s inspired a new interest in brain injury advocacy: “Who better to give a voice to this cause than someone who is living with a TBI?”

Check out what she has to say about discovering new coping methods and finding support from others who understand.

Can you tell us a little about yourself? What are your hobbies and interests?

I am originally from the Kansas City area in Missouri until 2010 when I moved to Kentucky to be closer to my daughter and her family. I received my traumatic brain injury in 2004 from an impaired driver who rear-ended me going 74 miles per hour while I was at a dead stop.

I spend my time volunteering for Kentucky Wildlife Center in Lexington, KY. We take in all kinds of wildlife babies and rehabilitate them so that one day they can be released into the wild again. I helped them with a vision that they had to raise a vegetable garden with no pesticides which has been successful. I am also helping with a garden at Neuro Restorative where I attend therapy sessions. I find working in the dirt and growing plants, vegetables and flowers is a successful coping skill, which is helpful when I become emotional.

I also volunteer with Brain Injury Awareness of Kentucky. Just this past summer I helped distribute bicycle helmets, bringing awareness to the safety of riding a bicycle with proper equipment — a helmet — no matter what age. We fitted the helmets to children, teenagers and adults.

When it comes to watching sports on TV or at a stadium, I am there supporting my team, the Kentucky Wildcats. I am always eager to learn about different topics, especially brain injury, which is close to my heart. At the end of the day I am working towards being an advocate for any type of brain injury. Who better to give a voice to this cause than someone who is living with a TBI?

What was your diagnosis experience like?

Getting my diagnosis was the easy part for me; the difficult part was finding the right help I needed to start my journey to healing. At the time I was still living in Missouri and my daughter was living in Kentucky. So everything was left up to my doctor and me to work on my deficits, which at the time I didn’t view as severe. I participated in physical therapy and speech therapy until I hit the amount of units you were allowed per year on Medicaid. My daughter found out from other people that I was not doing as well as I was portraying. I was broke because of my impulsivity with money and I was sleeping on other people’s couches here and there. This is why at the end of 2009 I moved to Kentucky because my daughter was expecting her first child and I wanted to be close by.

Even in Kentucky I continued the downward spiral till I hit bottom, not taking my medication when prescribed, sleeping at odd times of the day and not eating well. That is when my family said they didn’t have the education or knowledge to be able to help me. That is how I ended up at NeuroRestorative in Georgetown in 2011. I started in the residential program where during the days I received occupational therapy, behavioral support, counseling, and speech therapy. Since that time, I have graduated from speech therapy and moved out on my own in November of 2012. I am fortunate that Kentucky has a waiver program that covers the cost of these services. I wish more states would have this option as well. This is when my journey to healing started!

In your profile you talk about writing down your thoughts as a form of therapy. How has it helped you manage your TBI? Do you have any other coping methods?

When I came to Neuro I had no idea what coping skills were, let alone how to practice them. First of all, I learned about the Coping Skills Triangle which consists of thoughts, behavior and emotions (pictured).

At first I started journaling for my sessions with my counselor so I wouldn’t forget to talk about certain topics. That’s when I started seeing that writing was a way to express myself. At the time they had a newsletter at NeuroRestorative in which I decided to write each month entitled, “Just My Thoughts,” where I would write about my struggles, coping skills and any issues that I was going through at the time. My purpose was to show other participants that they were not alone and that other people were struggling just like them. I have everything that I have written since 2012 and recently have put them all into a blog called “Learning Vicki.”

Furthermore, I have a big list of different coping skills that I use to help me when I feel overwhelmed or I’m not thinking clearly. I had them written down at first so I could pull them out when needed but today I find myself just doing them without thinking. Some of these coping skills are taking pictures of nature, walking my dog and visiting with my neighbors. At home I even turn up the radio and start dancing in my apartment. I do whatever brings enjoyment to me and takes my mind off the situation until I am ready to handle what is bothering me.

You’ve mentioned that “education is the biggest tool you can give other patients.” What’s the most important thing you’ve learned in your journey with TBI?

First of all, I have put myself out there to others to let them know that they are not alone on this journey. I feel the most important thing I have learned in this process is to share my experience. When I first found out that I had a brain injury, my thoughts were all over the place and I wondered what my next step would be.

I found out that a few of the people I went to high school with also had head trauma. So, I contacted them personally saying that I also had a TBI and maybe we could support one another. I kept talking to one friend in particular to see how he was doing and gave him an outline of how I began my treatment — who diagnosed me, how to talk to his doctor and how to receive therapeutic rehabilitation. That was a year ago, and I am happy to say that friend is now back at work and starting to regain some of his life back.

If I can’t answer a question for someone, I will see if I can find out the answer and get back to them. The most important thing no matter what disease or injury you might have is to know you are not alone and there are others who are either going through the same battle or have beaten it. We all need to be each other’ cheerleaders, to encourage each other to hang on because tomorrow is going to be better and we will get through it together.

How has it been connecting with others on PatientsLikeMe?

It has been a wonderful experience being able to talk to other people who are going through the same illness that I’m experiencing. It helps because you realize, “I am not the only person going through this or that feels like this.” It has also taught me to be thankful for what I have. It has been a tool to educate myself on what some other people might be trying or what didn’t work. I love being able to keep track of my moods, my emotion charts and how I’m feeling overall, and to read others’ messages of encouragement.

I also like sharing my data with researchers to help them with clinical trials, and being able to find articles that help me better understand my condition. It is great to be able to go to one site and find everything that you need. I wish I had known about PatientsLikeMe back in 2004. Every chance I get I tell people to go check the site out!

 

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