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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.

National Physical Fitness & Sports Month

By Blog, News, Newsletter, Resources

By: Silvana

May Is National Physical Fitness and Sports Month… And Yes! That Includes National Bike Month. 

Let me start off with a short bio: 

Hi, my name is Silvana.I am what they (the neuro community) consider to be a Moderate, Closed Head, Traumatic Brain Injury Survivor. I prefer the titles of TBI Warrior, Bicycle Nerd, or Super-Hero.

Time passed and eventually I started receiving Brain Injury rehabilitation therapy. I am told that each day I most wanted to sleep or to ride my bike. I was not allowed much of the sleep and definitely no riding a bicycle. So it was over two years and many tears before I started getting back into shape and rolling out the miles. There was nothing easy about the getting back into shape. Balance issues, PTSD, Neurological Vertigo, speech issues, brain fatigue, processing issues, cognitive disabilities, depression, nerve pain, complete memory loss -instant, short term and long term, as well as many more symptoms had invaded my brain and made it burdensome to say the least. But like many of my new brain injured super-hero friends, I am not a quitter. I began my physical fitness training one baby-step and one pedal-push at a time. 

Staying physically fit after my brain injury in July 2010 when I was run down by a car while doing what I love has been a huge challenge. I consider myself one of the lucky ones, as many Brain Injury Survivors that I have met over the years have had a far more difficult journey than I. Somehow I was not terribly injured physically from the accident: A broken ankle joint along with many contusions, cuts and scrapes, and of course road rash were the primary extent of it. My brain, on the other hand, did not fare so well. Yes, I was wearing a helmet thankfully. It kept my skull from smashing up, but it could not deter the beating my brain took and the numerous symptoms a TBI delivered along the hilly road I have been traveling. Several health care providers indicated that perhaps because I was in such good physical shape prior to the accident, having been training for a century ride (a long distance 100 Kilometer/62 Mile bike ride) that would be particularly grueling as it traversed over three mountain passes, two of them over 10,000 ft, in So. Colorado. Cyclingis a mental endurance test, it often requires more mental focus than fitness. Your body can go much farther than your brain believes, so they both have to be strong and in sync. Also that natural instinct for survival; as one of the few things I recall of that morning that changed my life forever was a beautiful voice, calling out to me to “Hold onto your bike.” Not once, but twice, as it might have known that I may have needed a little extra encouragement to hold on to what I love. Being in shape along withsurreal intervention helped me survive a worse case scenario.

So here’s to improving your life with cardiovascular and respiratory fitness, increasing strength and flexibility, getting rid of the blahs, decreasing pain, learning to refocus your brain, and creating neuropathways. I like to call it rewiring your core. 

The Stats: 

The Bad News: According to the Center for Disease Control, over 3.2-5.3 million people in the country sustain a traumatic brain injury (TBI) every year. TBIs account for 30 percent of all injury-related deaths and lead to $76.5 billion in annual medical costs. These numbers are still growing. The World Health Organization predicts that TBIs will become the third leading cause of death and disability in the world by 2020. 

The following is a list of the top 10 sports-related brain injury categories, in order of reports made by hospital emergency rooms: 

Cycling 

Football 

Baseball and Softball 

Basketball 

Skateboards and Scooters 

Water Sports 

Soccer 

Powered Recreational Vehicles 

Winter Sports 

Trampoline and Gymnastics 

In my humble opinion, and that of the reporting agencies involved in brain injury research, the statistics noted above are only those of ‘reported or individuals who received a proper diagnosis and treatment’. I for one would not have counted in the top sport as I was misdiagnosed and not given treatment immediately for a brain injury. Today, however, we have learned so much more about the degree of concussions and how they should be treated as different levels of brain injury. 

The Great News: For the Brain Injury Community is that you have an arsenal of healthy tools available that are energizing and healing and the only prescription you need is some motivation, a bit of support, smart safety guidelines, and an “okay” from your physician/medical team to integrate this into your daily routine of self-care and recovery. 

Up to this time there have been no established guidelines for exercise for brain injury survivors. Because of the many diverse and undiscriminating effects of short and long-term impairment that are incurred from a traumatic brain injury, content of an exercise and fitness plans will largely depend on the individual, their present and past health habits, and the extent and severity of impairment. The statements below by the APTA and ACSM are “guidance not individual guidelines” 

A quick happy personal note on this: 

Muscle memory is amazing! If only my mental thought processing could be so strong! 

The American Physical Therapy Association (APTA), American College of Sports Medicine (ACSM), and National Center on Health, Physical Activity and Disability have released guidance on exercising with TBI. According to the APTA, appropriate exercise can benefit those with TBI who have issues with weight and stress management, emotions and mood, memory, attention, endurance, and energy. APTA suggests that low- resistance, rhythmic, dynamic aerobic exercise such as walking, stationary cycling, jogging, and the elliptical machine may be appropriate after TBI. Those with physical and cognitive limitations, however, may need to adjust the way in which they exercise. For example, a client with difficulty remembering directions shouldn’t jog or walk outside but should instead opt for home exercise on stationary exercise equipment. 

Personal note- Get outside-, fresh air is a huge factor in recovery, mood enhancement and regaining bone strength. Just don’t go alone. Exercise buddies are the best. You keep each other motivated, engaged, and hopefully one of you knows how to get back home or at least use GPS. Hmmm, thinking of a few super-hero peeps I know. 

The ACSM emphasizes the need for those with TBI to choose exercises that suit their motor control and balance abilities and to ensure that protective headgear is worn for activities that involve a risk of falling; the rate of a second head injury is three times greater after an initial head injury. For individuals with balance issues, the National Center on Health, Physical Activity and Disability recommends always choosing aerobic exercises with a low risk of falling, such as water exercise, rowing machine, or recumbent cycle. Furthermore, strength exercises should always should be performed from a stable position to reduce fall risk. Yoga, tai-chi, and Pilates are suggested to improve balance and reduce the risk of falls. 

Here is a guide to start you off, but is by no means all that is available, nor is it recommended for all forms of brain injury recovery. Please always consult your physician/medical team/health provider and caretaker before starting any form of exercise or new routine. 

Always consider safety first,have a safety workout-buddy or professional teach you, guide you and share in the experience. 

Also, very important note here… Do Have Fun! Because smiling is also a great exercise, and it’s contagious 😉 

Exercise for People with a Traumatic Brain Injury

Aerobic (Cardio) Training

Improving cardiovascular fitness can be accomplished in many ways. If new to exercise, choose low-impact activities, such as walking or swimming, that still involve large muscle groups that are moving continuously. If balance is an issue, the recumbent bike, row ergometer, and water exercises are great modes of training that reduce the risk of falling. 

Frequency: 3 to 5 days per week with the goal of working up to most days of the week. 

Intensity:Moderate to high intensity, or 60 to 90 percent of heart rate max. Start at the lower end of this range. Slowly and gradually increase the intensity over time. 

Time:20 to 60 minutes total. 

Personal Note: How do you find the time? Break it down into 10 minute spurts throughout your day. Soon you’ll be working it up to 20 minutes of walking, running, swimming, indoor or outdoor workout, boxing or yoga or 20+ miles of pedaling. Can’t you feel those muscles strengthening, those synapses connecting and that smile growing?

Did you knowthat the Greek word for synapse is sun-hapsis? Sun meaning together and Hapsis meaning joining. 

Strength Training

If new to resistance training, begin with circuit machines, resistance bands and body weight exercises until form and coordination have improved enough for free-weight and kettle-bell exercises. Regardless of the type of exercise, make sure to start each exercise from a stable position to reduce the risk of falls or further injury. 

Frequency2 to 3 days per week. Each major muscle group (chest, back, shoulders, biceps, triceps, abdominals, quadriceps, and hamstrings) should be targeted. This can be in the same exercise session or separated into training certain muscle groups on certain days. A minimum of 48 hours rest should separate the training sessions for the same muscle group. 

Volume3 sets of 8 to 12 repetitions per exercise. Start with 1 set of 8 to 12 repetitions and gradually build up to 3 sets. 

TypeBody weight, TRX, free-weights, circuit machines, kettle-bells, resistance bands, etc. 

Flexibility (Stretching) Training

Effects of a brain injury include reduced range of motion, stiffness, spasticity, ataxia, and reduced tone, which initially can cause flexibility exercises to be difficult. A regular stretching routine can improve tightness and spasticity.

Frequency:  The goal should be to stretch in the morning after waking up, after a workout, and at night before going to bed.

IntensityPerform the stretch until a point of tightness, but never to a point of pain. 

TimeHold the stretch for 10 to 30 seconds, but try for a full 30 seconds. 

TypeSlow, static stretches for each muscle group. Static stretches involve slowly stretching a muscle or muscle group and holding that position. 

Balance Training

Benefits of balance training for individuals with a TBI include improvements in coordination, agility, and muscular strength, which can reduce the risk of falls and fear of falling. Regardless of the type of exercise, make sure to start each exercise from a stable position to reduce the risk of falls or further injury. 

Frequency: A minimum of 2 to 3 days per week. Intensity: An intensity level for balance exercises has not been established. 

Time:60 minutes total that can be broken into 20 to 30 minute bouts.

Type:Yoga, Pilates, Tai- Chi, standing on 1 leg, heel-to-toe walk, standing on an unstable surface (i.e.,BOSU ball, wobble board, etc.)

Personal Note:Yoga and Mindfulness Meditation are awesome and finally becoming more accepted in the arsenal of brain injury recovery tools. I used to do yoga with my 3rd grade students for a few minutes each morning. It helped improve their focus, their energy and made them laugh: a great way to start any day. Now neurologists, physical rehabilitation professionals, and physicians are recommending it as one form of treatment for brain injury survivors. It really does help improve sleep, energy, flexibility and strength, and has been shown to decrease anxiety and depression. 

A recent study conducted at Indiana-Purdue University School of Health and Rehabilitation affirmed this. Adults in the study with TBI demonstrated improved balance, flexibility, strength, endurance and walking speed after initiating a yoga practice. 

That’s it for now. Hope to catch you out in the sunshine. Let’s keep proving we are strong and will carry on. Or in my case Pedal on… 

References: 

Silvana Montero Founder/Designer bicibits.com Follow the mission and journey to Get Your Ride Smile On,One Pedal Push at a Time. 

Centers for Disease Control and Prevention, National Center for Injury Prevention and Control. Report to Congress: traumatic brain injury in the United States: epidemiology and rehabilitation. 

https://www.cdc.gov/traumaticbraininjury/pdf/tbi_report_to_congress_epi_and_rehab-a.pdf

http://archive.news.iupui.edu/releases/2016/02/adapted-yoga-brain-injury.shtml

American College of Sports Medicine. Exercising following a brain injury: prescription for health. Medscape website. 

The benefits of exercise in individuals with TBI: a retrospective study. Journal of Head Trauma Rehabilitation, 13(4) 58-67. 

Awareness

By Blog, News, Resources

By: Jenny


Among the BIND membership, 52% are survivors of a stroke, while 10.5% are on the other side of a brain tumor diagnosis.  We have 3 overcomers who fit into both categories, a statistical anomaly that can only be explained by the miracles that happen within this small community, one of which happens to be me. We, unfortunately, are counted within the 1-5% of people who experience a stroke after brain surgery to remove a tumor.

795,000 Americans endure strokes each year, with more than 140,000 people dying.  Stroke is also the leading cause of serious, long-term disability.

The effects of a stroke vary from person-to-person based on the type, severity, location, and number of strokes. The brain is complex. Each area of the brain is responsible for a specific function or ability. When an area of the brain is damaged from a stroke, the loss of normal function of a part of the body may occur. This may result in a disability.

The twelve most common effects of a stroke are:

1.          Paralysis on one side of the body (Hemiplegia)

2.          Weak Motor Control (Hemiparesis)

3.          Tight, stiff muscles (Spasticity)

4.          Extremely stiff, painful muscles (Contractures)

5.          Shoulder complications

6.          Foot drop

7.          Curled toes

8.          Balance issues

9.          Learned nonuse

10.          Visual problems

11.          Difficulty swallowing (Dysphagia)

12.          Impaired vision or spatial attention

Furthermore, at least 86,000 new brain tumors are identified in the U.S. annually. There are more than 120 different types, and they are the leading cause of cancer deaths in children and young adults.

In my obviously biased opinion, research into this disease and possible cures is grossly underfunded and ineffective. Data collected by Central Brain Tumor Registry of the United States (CBTRUS) in “CBTRUS Statistical Facts Report of Primary Brain and Other Central Nervous System Tumors Diagnosed in the United States in 2010 – 2014” suggests:

  • Despite the amount of brain tumors, and their devastating prognosis, there have only been four (4) FDA approved drugs – and one device – to treat brain tumors in the past 30 years.
  • For many tumor types, surgery and radiation remain the standard of care.
  • There has never been a drug developed and approved specifically for malignant pediatric brain tumors.
  • The four approved drugs for brain tumors have provided only incremental improvements to patient survival, and mortality rates have not changed over the past 30 years.
  • Between 1998 and 2014, there were 78 investigational brain tumor drugs that entered the clinical trial evaluation process.  75 failed.   That is a 25:1 failure ratio in developing new brain tumor treatments over the past two decades.

It is often difficult to talk about such a hard topic, but always remember statistics don’t paint the whole picture. Brain tumor warriors are usually the bravest, toughest fighters you will ever meet. NO ONE FIGHTS ALONE!

More than any other cancer, brain tumors can have lasting and life-altering physical, cognitive, and psychological impacts on a patient’s life.

This means malignant brain tumors can often be described as equal parts neurological disease and deadly cancer.

It has been my experience that saying your tumor is benign gives people the impression that it is curable, and isn’t a very serious situation, however, this is not the case. Even benign brain tumors can be deadly if they interfere with portions of the brain responsible for vital bodily functions. It is also pretty safe to say that brain surgery is seldom benign.

We at BIND are passionate about spreading awareness of both these maladies. That is why we choose to draw attention to both the American Stroke Association (https://www.strokeassociation.org/) and the American Brain Tumor Association (https://www.abta.org/). We should all spread the word and get a spotlight aimed at these causes, so that we can give hope to and encourage those living with or affected by strokes or brain tumors.

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Members Celebrate Our Volunteers

By Blog, Events, News, Newsletter

Volunteers at BIND are such special people. Last year, alone, we were gifted with 2,880 volunteer hours, the equivalent of a full time employee working 40 hours a week.  They are truly indispensable, and we want them to know how thankful we are for them.  They are heroes in championing our mission and supporting our cause. BIND Volunteers help to make a difference in the lives of BIND Members.

This month (April) is Volunteer Appreciation Month, and it was a pleasure for us to have had the opportunity to interview just a few of our 100 dedicated BIND volunteers. 

~BIND Members

Beth

How would your friends describe you in 3 words? Honest; Strong; Quiet

If you had a warning label, what would it say? Must love cats!

Favorite band?

  • Atticus Ross

Songs by mood?

  • Road trip: Anything classical or Tom Petty
  • Cleaning House: Imagine Dragons mix
  • Workout: N/A I don’t work out

Where did you go to school? University of Dallas-B.A. English Language/Lit;

                    U.T.A-class of 2020-M.S.W. (Masters of social work)

Where did you grow up? Minnesota

Siblings? 4 brothers

Married? Widowed 2014

Children? Daughter passed 2014

Pets? Cat: Gizmo

Where else have you worked? Senior care- 4.5 years

                    Corporate- 19 years

What was your favorite thing about your last job? Relationship with clients/ caregivers

Include a meaningful quote: “It’s only when you have lost everything that you are free to do anything”

                    “Trees grow through rock”

                    “We all have the same 24 hours in a day …How will you use yours?”

Neeru

How would your friends describe you 3 words? loyal; fun; adventurous

If you had a warning label, what would it say? Speaks her mind!

Favorite band? INXS

Songs by mood?

  • Happy: “That thing” -Lauryn Hill
  • Sad: “In My Life” – Beatles

Where did you go to school? Syracuse UN.

Where did you grow up? Canada

Siblings? 2

Married? Yes

Children? 1 son

Pets? None

Where else have you worked? Hospital

What was your favorite thing about your last job? Case load

Include a meaningful quote:“The end justifies the means.”

Bailey

How would your friends describe you 3 words? Fun; Energetic; Social

If you had a warning label, what would it say? She is a cheerleader!!!!!

Favorite band?

  • Koe Whetzel or Parker McCullum

Songs by mood?

  • Road trip: country
  • Cleaning House: classical
  • Workout: pop

Where did you go to school?Mansfield Legacy; currently: U.N.T.

Where did you grow up? Rendon, TX.

Siblings? 1 Sister; 2 Brothers

Married? No

Children? No

Pets? Pomeranian: Honey Almond Mae

Where else have you worked? On the U.N.T. campus – Student Affairs

What was your favorite thing about your last job?

I love being able to help people, especially cheerleaders, learn new skills, as well as lifelong skills that will push them further in life. Being able to see people learn and grow is a passion of mine. I love being a part of their journey and making an impact.

Include a meaningful quote: “Never let the fear of striking out keep you from playing the game.”

Judy

How would your friends describe you 3 words? gregarious, fearless, adventurous

If you had a warning label, what would it say?  Loud (but not in a bad way)

Favorite band?

  •  Beatles, Sting, Ramones, Stones…

Songs by mood?

  • Road trip: CCR
  • Cleaning House: Aretha Franklin
  • Workout: Eighties music

Where did you go to school? U.T.A.

Where did you grow up? Dallas area

Siblings? Too many

Married? widowed

Children? 2 children and 3 grandchildren

Pets? 2 cats

Where else have you worked? Methodist, Baylor Rehab, various restaurants as a chef.

What was your favorite thing about your last job? The love everybody has for their job and each other

Include a meaningful quote: “My Brain is not working today — I am not synapsing”

We also have 2 new Employees at BIND we would like for you to get to know a little better:

Diana

How would your friends describe you (three words?)

Bossy, organized, and shopper extraordinaire.

If you had a WARNING Label, it would say: Warning! My speed may cause blurred vision.

Favorite Band: U2

Songs by Mood:

Road Trip: “Mad World” – Gary Jules

Cleaning House: “Another One Bites the Dust” – Queen

Workout: “Till I Collapse” – Eminem

Where did you go to school? Texas Tech Health Sciences Center

Where did you grow up? Lubbock, Texas

Siblings? 2; I’m the oldest; One brother; One sister

Married? Yes

Children? One son

Pets? Rey (like the Jedi)

Where else have you worked? Various rehab settings at all levels of care.

What was your favorite thing about your last job? Everything except the documentation, but especially my brain injury patients who come in every shape, size and all have stories that inspire me.

Include a meaningful quote: “Sometimes the greatest thing to come out of your hard work isn’t what you GET FOR it, but what you BECOME for it.”- Dr. Steve Maraboli

But my words to live by: Life is short… buy the shoes.

Jasmine

How would your friends describe you (three words): Bright, feisty, and spunky!

If you had a warning label, what would it say? “Contents under pressure. Do not shake!”

Favorite Band? Wild Child                                                                   

Songs by Mood:

Road Trip: “Welcome Home, Son” -Radical face

Cleaning house: Spanish music

Workout: “Power”-Kanye West

Sad: “Present Tense” – Radiohead

Where did you go to school? University of North Texas

Where did you grow up? Illinois

Siblings? 2 brothers; 1 sister; I am the oldest

Married? Nope!

Children? Never

Pets? Hopefully soon

Where else have you worked? Starbucks; Camp Summit; the U.N.T. Kirstin Ferrer Autism Center

What was your favorite thing about your last job? Wearing scrubs everyday

Include a meaningful quote: “ ‘Stay angry, little Meg,’ Mrs. Whatsit whispered. ‘you will need all of your anger now.’’’ – A Wrinkle in Time

Save The Date!

By Blog, Events, News

We’re thrilled to announce the Masquerade Gala is set for Saturday, October 26 at The Clubs at Prestonwood in Dallas. Sponsorship opportunities start at $500 – contact us to learn more.

Star Local Media: Brain Injury Exhibit Goes Beyond the Mask

By Blog, Events, News

“About 400 people suffer a brain injury in Texas each day. About 12 years ago, Karl Heller was involved in a nearly fatal car accident that left him with paralysis, global aphasia and severe injury to the left side of his brain.

“People think a brain injury is something permanent and you’re not going to get better,” Heller said. “I thought that before I had one. Now, I realize the first day is the worst day and everything goes uphill from there.”

Click Here to Continue Reading

In Memory: Verna White

By Blog, News, Uncategorized

We are pleased to honor the life of Verna White, mother to Brian White, our Board of Directors Treasurer. Please accept our sincere gratitude for gifts made to BIND in her memory. May peace be with you all who are mourning her loss.

April 4, 1926 – February 15, 2019

“Verna Irene White, beloved daughter, sister, wife, mother, aunt and friend to many, was born April 4, 1926 to Sherman and Isabel Beldin, and died February 15, 2019.

Verna grew up in Omaha, Nebraska, attended Oak Park Academy in Iowa. When her family moved to a farm outside of Glenwood, Iowa she met the love of her life, Clifford Dale White. They married on November 1, 1944. After Cliff discharged from the military, they returned to Iowa but soon moved to Omaha and raised their family, surrounded by a growing extended family and friends.

Verna was always known as a giving person. She welcomed and cared for as her own two children who had lost their mother, handed out clothes through the Dorcas Society, sang in a trio, baked and cooked for the masses.

Verna moved with her family around the Midwest but settled in Lincoln, Nebraska in 1967. Verna began a long career working in a nursing home caring for others in many different capacities, first as a nurses’ aid, then cooking, and finishing her career as the head of housekeeping. When she retired in 1992, she moved to Oklahoma to be near her children. She lived in the community of Summit Ridge for 23 years before moving into the Wolfe Living Center.

Verna loved to travel, seeing many sites around the United States and Europe. She loved collecting things and crafts of all sorts. After moving to Wolfe, she continued crafting by working on inspirational sticker books which she gave to anyone who wanted them.

Above all, Verna’s true happiness came from spending time with her family. Throughout her life, many nieces and nephews lived with her. Family gatherings always meant cooking for many, laughing hysterically, and supporting each other unconditionally.

Verna is preceded in death by her parents, her husband, her sister Gladys White, and Brothers Robert and Clyde. She is survived by her sister Shirley Scott, her daughter Connie Stricker, sons John and Brian, foster children Linda Benjamin and Gerald Scott, six grandchildren, Shawn, Eric, Jenny, Bradley, Jason and Cindy and five great-grandchildren Ali, Cody, Lexi, Zoey, Max and Liam. She also leaves behind a host of extended family and friends.”