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Patience is a virtue.

By Blog, News, Resources, Uncategorized

By Karl K.

Patience is a virtue.  The problem is that most of us do not have much of it.  The current generation has moved us into a state of instant gratification.  People want things now.

Not everyone believes that patience is a key to success.  I spoke to 80 students last year who wanted to major in Speech Pathology.  Many of them wanted to become therapists. At the close of the meeting, I wished all of them much luck, and a great career. And then, I stopped and said, “if you do not have great patience, you need to find something else to do.”  Short of knowledge and wisdom, patience is the most important behavior for a professional to display.

I see patience manifested every day.  I am now in an organization called BIND (Brain Injury Network of Dallas).  The directors and volunteers are the most patient people I have never been around!  They may need to hit their heads a few times after getting home, but you would never know it while they work.  They answer questions, help members walk and use a wheelchair, put up with constant interruptions, repeat instructions, and urge participants in a discussion to stay on the subject at hand.  I can tell you that I could not do what they do, and they do it very well.

As I write this blog, this week I am leading a group who wants to know how they can help others who have had language and speech difficulties.  The formal term is aphasia.  There are many ways to do that including the following:

  • Be patient
  • Use plenty of time
  • Establish the topic
  • Use “yes” and “no” questions
  • Repeat and ask for understanding

Patience is important to someone who needs help, but who cannot be rushed.  Have you ever said this:  “how long do I need to take this medicine?”  “How many visits to have to the doctor until I am healed?”  Some things are not in your control.  Some things cannot be rushed.  You cannot hurry plants to grow, make the weather cooler, or cram for test that you should have studied for weeks, but you did not.  You may be a Christian.  You pray that God will make something happen for your family.  He may, but the reality is that He works on his own time, not yours.

Experts explain that four steps are needed to increase patience with others.  

  1. Make yourself wait
  2. Stop doing things that are not important
  3. Be mindful of the things that make you impatient
  4. Relax and take deep breaths

Taken from the video “Always Thinking”, October 30, 2019

Think how the world would be a better place if we just use only 10% more patience.  How would you use that time?   You do not have answer right now.  Be patient!

The Silver Lining

By Blog, News, Resources

By Jenny T

BIND IN QUARANTINE 

While every brain injury is unique, most brain injury survivors experience social isolation at some point in their recovery which often leads to depression and anxiety. Some studies suggest that the risk for developing depression following a traumatic brain injury may be two to five times higher than in the rest of the population.

One of the most important functions of BIND is to reconnect those brain injury survivors with the community, and rehabilitate their ability to interact with others. This can only be accomplished through relationships.

Therefore,quarantine and social distancing, while absolutely necessary, directly oppose the BIND mission. However, people who survive brain injury tend to prove time and time again that we can overcome any obstacle set in our way. We believe This time in our history will be no different. 

Since a large percentage of BIND membership falls within the “high risk” category for COVID-19, we were among the first to follow CDC and WHO guidelines and “close the doors” of the physical clubhouse. But not without first creating and distributing care packages for our members, thanks to our staff, volunteers and program interns. 

Once it became evident that this quarantine would not be over quickly, it was decided to take the BIND program online, rather than leave our members once again feeling abandoned in the mire of loneliness. BIND volunteers and staff quickly began working remotely to provide virtual resources. After a few hiccups and some extra education we began to use Zoom and a private social media group to host our morning meetings, brain games, art classes, support groups, and many other activities, giving members near and far access to our service and a chance to participate in a community, albeit on a screen. 

Consequently, members that might have become more withdrawn and lost touch with one another have been able to maintain those vital connections. Member, Karl K. Says,”I used to attend BIND only one day a week, because I cannot drive, but now I am able to be here so much more and I love it, I really do.”  And Susan F. Stated that “ During this Global Pandemic, BIND has helped me to do something (other than nothing). M-F, I’m very active in BIND and am incredibly grateful and thankful. What a blessing BIND is to me – and since I’m doing “good stuff,”  my family is also grateful. and thankful——when I’m taken care of, the family is happy.  THAT IS  A TRUE GIFT!!”

Of course BIND members would rather be together, as everyone craves human interaction. For some, learning to use technology has been a struggle, others have fallen back into negative patterns such as staying in bed or arguing with caregivers and family members. This only highlights the need for the BIND family and the encouragement that can only come from someone who has “been there.” Various members, volunteers and staff have gone above and beyond to make sure everyone stays in contact whether by phone, email, text, or zoom meeting thereby embracing our favorite motto “We rise by lifting others. ” 

 Some new interests have also been born out of this necessity. Horse racing, which was introduced by volunteer Andrea, has become a hot topic. “it has been very educational; the horses and how it actually works. It keeps me busy and gives me something to do other than focusing on being alone,” remarks member Carrie P. 

Art has long been a staple of brain rehabilitation, and BIND has always strived to incorporate it into our planning. But what does that look like with video conferencing and limited access to supplies? Personally, that’s been my favorite part. Jasmine (BIND employee) not only gave us drawing prompts and tips, she taught us how to tour museums virtually through Google arts and culture, which opened up a whole new world to us. We also had a lot of fun recreating famous works of art with household objects.  You can check this out on our social media platforms:

https://www.facebook.com/111992482241131/posts/2886619408111744/ and https://www.instagram.com/p/B_Fl62bH5S8/?igshid=lio8v4pp1nd9

David S. States his favorite has been the improvement in the structure of the men’s {support} group, he enjoys the topics that have been discussed and complimented Karl K. for his hard work in this area. 

And just in case you were worried about BIND’S brand new garden provided by Kenlee Landscaping Services and MetroTex Leadership Class #28  – don’t be.  BIND members and volunteers, who are able, have been stopping by, at separate times, to water, weed and tend to our flourishing plants. Thank you to those that have helped. 

Hosting Synapse Laps virtually this year was another first for the BIND staff.  Synapse Laps was very successful and we were able to raise $3,000. The event also encouraged our members, staff and volunteers to get in some good, safe exercise. This was one more example of progress through flexibility. 

Hopefully this quarantine will come to an end soon, and BIND members can once again get used to a new normal. But until that day we will weather this storm together, but apart.

Working After Stroke

By Blog, News, Newsletter, Resources

Recovering from a Stroke and Returning to Work
By: Megan

It took me six-years and seven-months plus twenty-days to return to the workforce after my stroke; I returned to my profession as a software engineer. Shortly after my injury, I had a calendar where I would mark days off until I could go back. I stopped counting the days after a year when I realized that was not going to happen. All I wanted was for my life to be normal again. I never imagined that it would take me that long to return to work.

Strokes can happen at any age. According to the Texas Traumatic Brain Injury Advisory Council Report (2014), 34% of strokes survivors are under the age of 65. I had my stroke at age 29. It resulted in global aphasia. In the beginning, I could not speak nor could I understand anything. My stroke was bad; it was bilateral. 

I was in formal speech therapy for over four years. Speech therapy is not cheap. My insurance paid for sixty sessions each calendar year. I had to pay the rest out-of-pocket which came from my 401k savings. My speech therapist gave me homework assignments to do that resulted in my husband becoming a part-time speech therapist. Year-after-year, I kept improving even though many medical professionals told me that progress ends after six-months. Eventually, due to financial constraints, I had to start looking for financial alternatives to keep progressing. This was when I started looking into going to BIND.

I tried to go back to work a year after my stroke as my job would be held for me. I wanted to get as much rehab as I could before I went back. My employer would not allow me to return; they said that it was not safe. At this point in my life, I was hopeless. I had to rebuild my life from the ground up. I did not want to give up because it is not my nature. My husband and I discussed different possibilities such as moving to a different area or state. I did not know how things would workout but we kept pressing forward.

I have faced tons of negativity in my recovery. It started when I was in the ICU when the doctors told my family that I would never work again. I cannot count the number of people that tried to reduce my confidence over the entire time-period. However, I had a few people in my corner rooting for me, which includes BIND, PCP, and audiologist.  

When you do not return to work after an injury, depression is a major hurdle. Bills do not stop. I still had student loans even though I was not working.  My student loans were discharged due to permanent disability after three years. Losing your job is an emotional blow; I did not feel like I had a life-purpose outside my profession. Many rehab professionals told me to look at other jobs or to take a part-time job. They suggested that I look at the SSDI ticket-to-work program that allows SSDI recipients to work while getting social security. My life situation did not allow for that since I was on LTD (long-term disability) and SSDI. If I went back to work, I would lose all benefits. I was the breadwinner in our marriage, so I had to make smart financial decisions. In my experience, these restrictions keep people from returning to work. 

My first rehab kept telling me to look for volunteer positions, but I was scared because I was worried that I would lose my LTD (long-term disability). On Facebook, I talked to a woman who was on LTD and she always stressed her limitations on the required paperwork to prevent it from being taken away; I utilized this woman’s tactic. Over the course of my recovery, I volunteered at a few libraries, hospital, and horse rescue. My goal was to gain connections so I could return-to-work somewhere. Before taking my current job, my goal was to work at the hospital that I volunteered at in the IT department, so I did not have to move away from my family.

Attending BIND helped me to regain my confidence. Formal speech therapy focuses on the patient’s limitations; they try to fix what is wrong. BIND focuses on strengths. One thing that I have going for me is my strong work ethic. My injury did not change this personality attribute; all of my rehabs recognized it and BIND recognized it too. I became BIND’s communication leader. If given a chance, I always knew that I would shine. I read leadership books to learn how to model behavior and give praise so that I could make members feel productive.  Helping others helped me regain my confidence. 

This sad story has a positive ending. I returned to work a month ago. So far, I’m thriving in my job. My recovery journey has led me to meet all kinds of different people and situations; this includes doctors, therapists, BIND staff/members, and community volunteers.  I returned to work for my first boss in my first job as a software engineer. With all the twists and turns, my life has a sense of normalcy again. 

Depression Awareness

By Blog, News, Resources

Depression affects around 18 million Americans (1 in 10 annually). It may not appear as a broken leg or something physically wrong but it is a medical disorder that dominates the brain. Depression symptoms can include withdrawal from activities, loss of pleasure, hopelessness, and suicidal thoughts. It is a debilitating state of mind that infiltrates you with negative thoughts and without a support group of friends or family those thoughts become your reality. 

 For people with traumatic brain injuries, depression affects 3 in 10 people. It is difficult to gauge when someone is depressed; it could be a year later or right after your injury (WebMd, 2017). Speaking as a seasoned TBI survivor, it came later for me. When I began to process what had happened to me, my life completely changed gears. I think many people with TBI’s can relate to this. TBI’s can make your whole life change.

If you start to notice that you feel sad or depressed most of the day, have a loss of interest in usual activities, or eating too little or not enough, it is possible you are depressed (Mayo Clinic, 2019). If you go to any self-help website or look-up treatments for depression, you will likely get a number for a suicide prevention hotline. If you are having thoughts of injuring yourself or suicide, please contact the suicide hotline immediately. You can call or chat online, https://suicidepreventionlifeline.org/. In my unprofessional opinion, taking medication or talking to someone a few minutes to come off the ledge is a temporary fix. It puts a band-aid on the outside so you look fine to everyone else. However, really your soul is damaged and you’re suffering. The most beneficial way to treat depression, rather than numb it, is to join a support group, or talk to a licensed counselor. Also, do things that genuinely make you happy.

With depression it is most important to never be alone when you’re sad. That’s when negative thoughts seep into your mind and worsen your mood. For me, it helped to do crafts to express my feelings, like drawing and painting, I also enjoy writing.  Community is crucial for healing. 

~ Livia, BIND Member

Press Release: BIND Us Together

By Blog, Events, News, PR, Resources

August 2, 2019– BIND: Brain Injury Network of Dallas, a 501c3 nonprofit corporation based in Plano, Texas, is excited to announce the publication of “BIND Us Together: Restoring Purpose, Fueling Hope, and Connecting Brain Injury Survivors to the Community.”   

About the Book– More than 30 members of the BIND program – survivors of stroke, traumatic brain injury and brain cancer – came together and wrote about the most challenging times of their lives. This book contains incredibly deep stories of perseverance and immeasurable strength. Each member has relived some of their worst days in order to reclaim power of their situation. The ultimate goal of publication is to help others understand the needs of people who have survived a brain injury, and in some way return the purpose and connection BIND members have found by joining this dynamic program. The book is available on Amazon for the Kindle and paperback. All proceeds will be donated directly to supporting BIND program expenses. 

Inspired By– Without the drive and organizational leadership of BIND member Jenny T. and editing provided by BIND member Taylor S., “BIND Us Together” would not be possible. Further, the publication of the book was a team effort between more than 30 program members and BIND volunteers like traumatic brain injury survivor and author Donna Valentino, plus photography provided by stroke survivor and long-time BIND volunteer Dean Stone (Spectaveris Inc, owner/operator). Further, the book was created in honor of one of the program’s founding members, James “Jim” Goodman, “without him we may have never found each other.” Before his passing in early 2019, Jim contributed the first story in “BIND Us Together,” titled “Heart attacks, strokes, and cancer….whatever.” The forward was contributed by BIND Founder and Executive Director Valerie Gotcher and acknowledgements were written by Jenny T. The book was also inspired by participation in the Unmasking Brain Injury project, a profound and therapeutic mask-making activity aimed at increasing public awareness and advocacy for brain injury survivors across the globe.  

About BIND– The Brain Injury Network of Dallas is a community center for people living with the effects of an acquired brain injury. BIND operates the first and only Brain Injury Clubhouse in the state of Texas, which is its primary tool used to serve survivors. At BIND, staff and program participants, called Members, work together to run all aspects of the program. The BIND Mission is to provide tools and a bridge of support to adult survivors of acquired brain injury so they can reconnect to work, life and the community. BIND is a proud member of IBICA: International Brain Injury Clubhouse Alliance.  

To qualify for Membership– Members must be 18 years of age or older, have a documented acquired brain injury, be independent with self-care and use assistive devices independently, be willing to participate in a working community, not be a threat to self or others, and, have transportation to/from BIND in Plano, Texas.    

Depression After Brain Injury

By Events, News, Newsletter, Resources

Written By: Chris B

My stroke occurred in February 2015, unplanned obviously, and very much unwelcomed. Many of my challenges have been summarily defeated/overcome. I have defeated most of my paralysis; I can now use my effected side and jettisoned the cane; speech is very good, but the one ailment that is ever-present for many, regardless of the type of brain injury, is depression.

Part of the unavoidable growth/challenges forced upon many stroke and TBI survivors is the psychological impact of life change as well as overall brain chemistry change due to injury.

Not everyone becomes depressed, but, a sobering half of all people with TBI are effected by depression within the first year after injury. Even more (nearly two-thirds) are effected within seven years after injury. That’s right– it can increase over time.

According to The Model Systems Knowledge Translation Center, in the general population, the rate of depression is much lower, affecting less than one person in 10 over a one-year period.  

More than half of the people with TBI who are depressed also have significant anxiety.

In the big picture, everyone can imagine reminiscing about past life events, not different than an athlete realizing they can’t compete at the same level.

Getting over an ended relationship is never fun – the parallels are similar. As with all of these analogies, visiting the past is better than living in it.

Easier said than done, but, listen to your wellness team, family, church, neighbors, and get help if you or others notice behavior changes or overall withdrawal from society. It’s a very common reaction post brain injury to want to cocoon and remove yourself from interaction, but, staying active and finding friends/purpose/goals can help a lot.

The bottom line, GET HELP, be it, discussion, physician-prescribed medication, counseling, finding a hobby – all have been proven to work and it will be a forward step on your path to a better future.

Fortunately, I’m mobile and can drive, so I was able to increase my social circle by joining a gym and volunteering at a farm museum.

I had the fun effect of crying for no reason (commercials, speeches, church hymns…); medication worked for me without impacting my personality.

Keeping busy is an often-prescribed cure for mood change, which can be difficult as the drive/inertia is often low post brain injury. Group activities and a standard schedule can help with accountability for activities.

BIND is a place where members can find people with similar situations and thoughts from various backgrounds, and the environment can fill the void of lost friendships/coworkers and exposes many to the successes of the recovery journey.

The group activities and responsibilities we undertake help with one’s self-esteem and purpose.

I’d strongly encourage someone who has suffered an acquired brain injury to check out BIND or any local stroke/TBI support group.

Living With Aphasia

By Blog, News, Newsletter, Resources

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Aphasia Awareness

By Blog, News, Newsletter, Resources

Written By: Megan

June was Aphasia Awareness Month. Aphasia is a condition that affects the language parts of the brain. One or more of the following language modalities could be affected: speaking, understanding the speech of others, reading, writing, gesturing, and/or using numbers.  Each person’s symptoms vary. 

Here are some quick facts about aphasia:

  • Two million people have aphasia in the USA.
  • 84.5% of people have never heard the term aphasia. 
  • Most people acquire aphasia as the result of a stroke; however, there are many causes including traumatic brain injury, anoxia, etc. 
  • More people have aphasia than many common conditions including Parkinson’s disease or cerebral palsy. 
  • Research has shown that aphasia survivors have a lower quality of life than cancer or Alzheimer’s patients. 

Article source: https://www.aphasia.org/aphasia-resources/aphasia-factsheet/

To get an aphasia survivor’s perspective, I included responses to questions from Cindy, myself, Nathan, and Yvette.

  1. What type of aphasia do you have?

Cindy: I have expressive aphasia.

Megan: Initially, I had global aphasia. Over time, my expressive speech came back with lots of work and therapy. Currently, I have problems on the auditory processing side of language.

Yvette: In the beginning, I had global aphasia. Now, I have anomic aphasia.  

  • How has aphasia affected your life?

Cindy: I have problems speaking, reading, and writing.

Megan: I have problems understanding speech and talking on the phone.

Yvette: In the beginning, I was really messed up. Now, at times, I have problems finding the right word.  

  • How has your aphasia improved over time?

Cindy: My speech got better.

Megan: In the beginning, I couldn’t speak or understand anything. My expressive speech and my ability to understand language came back with lots of therapy and work. My communication skills have improved significantly from the beginning. I’m now a Communications lead at BIND.

Yvette: I went from having global aphasia to anomic aphasia.

  • What do you do to improve your aphasia now?

Cindy: I attend BIND and speech therapy.  

Megan: I attend BIND two days a week. I volunteer at a horse rescue, hospital, and library. At the hospital, I work at the information desk and direct people to doctor’s offices and patient rooms. I get lots of communication practice at the hospital.

Yvette: I attend BIND.

  • What do you wish that other people understood about aphasia?

Cindy: We need to find a way to end stroke.

Megan: Intelligence is not affected by aphasia. 

Yvette: I wish people would help me find the right word.