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Once a Member, Always a Member: Part 2

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I suffered a traumatic brain injury on November 22, 2014. I was home alone and fell down the stairs. At the time, I was living with my roommate (Jeff). He was going to stay at his girlfriend’s house but, they came home and found me in my bed pretty much bleeding to death. Now, that’s a God moment. He saved my life.

I spent two weeks in ICU at Medical Center of Plano. While there, I had trouble speaking. My brain is swelling more & more so, I have 2 burr-holes in my head which my daughter (Shayli) calls them “my dents”. I have Aphasia and always will.

After 2 weeks in ICU, I was transferred to Baylor Frisco for a week, then Pate Anna, Tx from December 2014 through September 2015 then back to Baylor Frisco where I met Valerie Gotcher.

I couldn’t thank my speech therapists enough. I loved talking with Valerie. At times, I was doing 1st grade work and now, times are still tough especially with numbers or trying to spell the word correctly. I still have trouble talking clearly.

I was released from speech therapy in February 2016. I got laid off from my job in April 2016 but, now I am working at Honda Cars of McKinney in the accounting department and I LOVE my job!

I tip my hat to all my speech therapists especially Valerie. I am honored to be a Member at BIND. I sure wish I could interact more with BIND but, with my job it’s hard to fit it in.

On a last note: you must have the determination; the attitude and the “I want to” vs. “I can’t.”

~DeeDee

Once a Member, Always a Member: Part 1

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So, I asked if I could write this blog. It’s a little “how BIND has helped me, and others move on” and a little “BIND IS doing what it set out to do”. So, with that said first here’s a reminder of our Mission and Vision statements.

  • Our mission is to provide tools and a bridge of support to adult brain injury survivors, so they can reconnect into life, the community and the workplace. Our vision is to lead the DFW area in providing member-driven services and will serve as the model for Brain Injury Clubhouses across the state of Texas.
  • The objectives of BIND include reducing the severity of depression, increasing return to gainful employment or productive community volunteering in survivors, and improvement of quality of life for those affected by acquired brain injury. BIND empowers members to maximize their strengths while developing strategies to meet personal goals for community reintegration and provides a necessary link in the rehabilitative process that assist one in transitioning from therapy to the community upon discharge. This bridge helps the member maintain and improve abilities obtained through the difficult rehabilitative process.

Hi, I’m Carrie I had my stroke at 38 and was paralyzed on the left side of my body and I assumed that meant the end of me ever working, or much of anything else along with supporting myself again. Well 9 years later I have a part time job which I hope to be able to turn into full time in the future. And I owe all of this to BIND. I was one of the fortunate people to get in on the ground floor from stuffing donation request in Valerie’s living room to spending time in a donated conference room at Accel Rehab (the former Integra where it all began) stuffing our 1st Annual Auction Luncheon invitations.

The doors to BIND opened in 2015, I began my work recovery. I couldn’t wait for that one day a week to see my friends and see where this journey would take us. Then we moved to three days a week and we made lots of new friends. At this point I proclaimed myself the “BOSS” and well if you know me, that’s that. But this empowered me to do more in an office environment (which I came from) and re-enforce a lot of my un-used skills and that’s when I began to wonder… “Can I go back to work?” And with Valerie’s encouragement and support, Whoohoo I have, and nothing can stop me now. And I’m still able to volunteer my time and give back to those that helped me and to help others like me.

And I’m not the only one who has felt that BIND gave them what they needed to either:

  • Go back to Work
  • Find a way to give back within their own community
  • Use what they’ve learn to continue to grow after moving away

Just by being open now 5 days a week and having over 50 active members on a weekly basis, I would say we are meeting our objectives. Not every member’s goal is to go back to work but we all want to feel like we add worth and are needed and BIND gives all of us Brain Injury survivors that feeling of belonging and contributing to society.

Check back soon for more Graduate Stories!

~Carrie
The Goodman Award Recipient for Outstanding Volunteer Service, 2018

Traumatic Brain Injury: Know the Facts

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Traumatic Brain Injury Awareness Month

Written By: Augusta O.

September is national awareness month for traumatic brain injuries and I felt absolutely compelled to take on this topic for a number of personal reasons, but one of the most pressing I felt was that it’s somewhat misunderstood. The fact that a person suffering with a traumatic brain injury typically looks just like any other healthy individual, the scope of its affects seem to go unaddressed in some instances. It was very sobering learning many of the statistics of TBI, but also vindicating in confirming many symptoms that I already knew to be true in my life.

With that being said, let’s jump right into it…

What is it?

A traumatic brain injury, commonly known as a TBI, is the result of a blow, bump, jolt, or other head injury that causes damage to the brain.

What are the effects?

Traumatic brain injuries are commonly classified in order of severity as mild or severe.

Mild: A brain injury typically is classified as mild if confusion, disorientation, or loss of consciousness is less than 30 minutes.

Common symptoms:

  • Migraine Headaches
  • Difficulty thinking (often referred to as “fogginess” or “haziness”)
  • Memory problems
  • Decreased Attention
  • Moodiness
  • Frustration

Severe: A severe brain injury is commonly associated with loss of consciousness greater than 30 minutes and/ or a penetrating cranial injury lasting greater than a 24 hour period.

Common symptoms:

  • Loss of cognitive function ranging from high level cognitive function to a comatose state
  • Limited upper and lower extremity function
  • Abnormal speech
  • Severe communication skill deficits

By the numbers

  • Deaths resulting from a traumatic brain injury annually: 50,000
  • Hospitalizations: 235,000
  • Emergency room visits: 1.1 million
  • Americans that experience traumatic brain injury annually: 1.4 million
  • Americans currently living with traumatic brain injury: 5.3 million

Major causes by percentage

Falls – 28%

Motor vehicle accidents – 20%

Struck by or against an object – 19%

Violence – 11%

Severity of injury

Approximately 75% of traumatic brain injuries seen in the emergency departments are mild cases.

Annually 70,000 people who have a traumatic brain injury experience permanent damage.

Lifetime costs

For the year 2,000, it was estimated that medical cost and loss of wages due to a traumatic brain injury surpassed $60 billion in the United States.

Conclusion

Although these statistics paint a pretty bleak picture, no mathematics of a disability can ever account for the motivation provided by a devoted spouse, or the outpouring of support from a loving community. I know firsthand the hopelessness, and overwhelming feelings of pain and haze that accompany being a TBI survivor. I too also know the encouragement that is waiting for you in your own personal world, once you make it through the fog.

Sources:

  • www.brainandspinalcord.org
  • www.traumaticbraininjury.com

North Texas Giving Day 2018

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Wait. What do you MEME? North Texas Giving Day is less than 30 days away!!! Check out our Giving Day page and set your calendar now for September 20. Early giving opens on September 10!

Thank you for the recent feature, My Sweet Charity!

North Texas Giving Day FAQs
  • What is it? 
    • Powered by the Communities Foundation of Texas, North Texas Giving Day is an 18-hour online giving event designed to empower every person to give back to their community by supporting local nonprofits and causes they care about in one easy-to-use platform.
  • How long has it been around?
    • 2018 is the 10th year of North Texas Giving Day! In 9 years, $195 MILLION has been raised for nonprofit organizations in North Texas. It is the largest single day of giving in the United States.
  • What is the Giving Day goal for BIND this year? 
    • With your help, we will raise $20,000 in critical operating funds for our program.  In 2017, BIND donors raised over $13,000 in a single day of giving!
  • Will a small gift make a big impact? 
    • YES! If every social media follower of ours makes a $25 donation on Giving Day, we will raise $50,000! Plus, North Texas Giving Day brings the opportunity for matching gifts, prizes and bonus funds from Communities Foundation of Texas and special donor groups.
  • When can I donate?
    • Early giving opens on September 10 and continues through the BIG DAY on September 20. Gifts made early will be loaded onto the BIND Giving Day Page first thing on September 20.

Registration Open for Warrior Brain Training

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We’re pleased to announce that Warrior Brain Training is coming to Plano in August & October!  Through a collaborative effort between BIND, The Center for Brain Health and the Plano Public Library, this interactive brain performance training will be provided free of charge to Veterans and Active Duty Military Service Members.

UPDATE: The August Warrior Brain Training event is FULL.  Registration is currently open for Veterans, Active Duty Military Service Members AND their caregivers for the October 10/11 session.  

Register today – space is limited:

Click Here To Register

 

Brain Tumor Awareness

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May is also Brain Tumor Awareness Month

By Jenny

Along with stroke awareness month, May is also Brain tumor awareness month. Although most people have heard of Brain tumors, few know how widespread this incurable disease is. According to the National brain tumor society:

  • An estimated 700,000 Americans are living with a brain tumor
    • 80% tumors are benign
    • 20% tumors are malignant
  • An estimated 78,980 people will receive primary brain tumor diagnoses in 2018
    • 55,1500 will be benign
    • 23,830 will be malignant
  • The average survival rate for all malignant brain tumor patients is only 34.7%
    • Male: 33.8%
    • Female:4%
    • For the most common form of primary malignant brain tumors, glioblastoma multiforme, the five-year relative survival rate is only 5.5%
  • An estimated 16,616 people will die from malignant brain tumors (brain cancer) in 2018
  • The most prevalent brain tumor types in adults:
    • Meningiomas, which make-up 36.6% of all primary brain tumors

Gliomas (such as glioblastoma, ependymomas, astrocytomas, and oligodendrogliomas), which make-up 74.6% of malignant brain tumors

Unfortunately, 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.

There are more than 130 different types of brain tumors, many with their own multitude of subtypes. The table below shows the types of tumors that a few of our members have been diagnosed with   :

 

Name Tumor type Age at diagnosis Initial symptoms
Jenny Oligodendroglioma 37 Seizure
Jeff Astrocytoma 20 Found while undergoing unrelated medical testing
Rick Central neurocytoma 35 Uncontrollable, severe headache

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 suggest:

  • 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 remain little 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. This is why we should all “Go Gray in May” to spread the word and get a spotlight aimed at this disease so that we can give hope to and encourage those living with or affected by brain tumors. NO ONE FIGHTS ALONE!

~Jenny, BIND Member

Better Speech and Hearing Month!

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Speech-Language Pathologists and Audiologists have played an instrumental role in my recovery. In the beginning of my stroke, I had global aphasia; I couldn’t speak or understand language. With the help of these professionals, I regained my communication.

May is Better Hearing & Speech Month which raises awareness about communication and the ability to hear, understand, speak, and swallow. Audiologists and Speech-Language Pathologists (SPLs) are professionals that diagnose and treat communication disorders.

Speech-Language Pathologists

Communication problems after a brain injury are common. Communication disorders occur in 25% to 40% of stroke survivors. This figure doesn’t account for those with brain tumors, brain infections, traumatic brain injuries, or anoxia. There are 1 million people living with aphasia in the United States.

Article Source: https://tactustherapy.com/acquired-communication-disorders-following-stroke/

Speech-Language Pathologists perform many functions to treat brain injury. Some of the special work they do includes treatment for the following:

  1. Dysphagia – They help patients relearn how to swallow which prevents malnutrition and dehydration.
  2. Aphasia – They treat numerous forms of aphasia including the following: receptive, reading & writing problems, and expressive aphasia
  3. Dysarthria & Apraxia – They help patients overcome speech difficulties.
  4. Cognitive Communication Difficulties – They help patients overcome executive function deficits.

Audiologists

Hearing loss can occur after a brain injury. Carolyn Rocchio of the Brain Injury Association says the following about traumatic brain injury:

“Hearing problems can occur for a number of reasons, both mechanical and neurologic, particularly when the inner ear and/or temporal lobes have been damaged. All patients should have an otoscopic examination and hearing screening followed by behavioral testing. External bleeding in the ear canal, middle ear damage, cochlear injury, and/or temporal lobe lesions can cause auditory dysfunction.” (Rocchio, 1998)

Article Source: http://EzineArticles.com/534833

Diagnostic tests are needed from an Audiologist and ENT (ear, nose, throat) doctor to determine the cause of hearing loss. The hearing tests could include one or more the following:

  1. Audiogram – This test presents a series of frequencies from low to high pitches.
  2. Speech Testing – This test looks at how well words are listened to and repeated.
  3. Tympanometry – This test evaluates the middle ear function and stiffness of the eardrum.
  4. ABR (Auditory Brainstem Response) – This test measures the timing of electrical waves from the brainstem to clicks in the ear.
  5. Otoacoustic Emissions (OAEs) – This test evaluates the sounds given off by the inner ear when responding to a sound.
  6. Electrocochleography (ECOG) – This test identifies cochlear nerve issues and Meniere’s disease.

Article Source: https://www.asha.org/public/hearing/Otoacoustic-Emissions/

Some Audiologists perform Auditory Processing (CAPD) Tests. However, not every audiologist formally acknowledges CAPD. Explanations about different CAPD Tests are included in the following link: https://www.audiologyonline.com/articles/apd-in-children-time-compressed-11953

With information from the diagnostic tests, Audiologists identify the source of the hearing issue:

  1. Tinnitus occurs when there’s buzzing, ringing, or hissing in the ears.
  2. Hyperacusis (i.e. noise sensitivity) occurs when a sound is uncomfortable.
  3. Meniere’s Syndrome occurs there’s excessive pressure on the inner ear.
  4. Auditory Agnosia (i.e. CAPD) occurs when there’s a problem in distinguishing sounds.

A treatment plan will be made which could include hearing devices, Bluetooth devices, telephones, FM systems, and/or speech therapy.

Article Source: http://synapse.org.au/information-services/hearing-problems-after-a-brain-injury.aspx

Go out today and thank SPLs & Audiologists for the special work they do in helping brain injury survivors communicate….

~Megan, BIND Member

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

Do You Smell Burnt Toast?

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May = STROKE AWARNESS MONTH!

By: Carrie

So it sounds like a bad joke (it is and it’s not) but I heard it again this morning watching reruns of my favorite show Supernatural.

Person 1:“Do you smell burnt Toast?”

Person 2:”Are you having a Stroke? “

Well I didn’t when I had mine, but I’ve heard this on other TV shows and other random places. So, I thought “LMGT”= Let Me Google That and this is what pops up:

And with that google search I got this:

“There’s a popular myth that smelling burnt toast is a sign of a brain tumor, or that you’re having a stroke,” he said. “This isn’t true. “A stroke can affect any area of your brain, so it’s possible that your sense of smell can be affected, but there’s no particular smell that you need to worry about.” Sep 26, 2016

http://www.iran-daily.com/News/169295.html

There are 2 types of Stroke:

Ischemic stroke occurs as a result of an obstruction within a blood vessel supplying blood to the brain. It accounts for 87 percent of all stroke cases. Hemorrhagic stroke occurs when a weakened blood vessel ruptures. But the most common cause of hemorrhagic stroke is uncontrolled hypertension (high blood pressure).

Here is just a small break down of our members that have had strokes:

Member Age at time of Stroke Type of Stroke
Carrie 38 Hemorrhagic
Christopher 38 Hemorrhagic
Debbie 54 Hemorrhagic
Jim 64 Hemorrhagic
Mark 58 Hemorrhagic
Chris 50 Ischemic
Jenny 37 Ischemic
Jill 51 Ischemic
Megan 29 Ischemic
Michael 45 Ischemic
Ted 51 Ischemic
Yvette 40 Ischemic

 

Unfortunately not all Stroke signs are obvious, (I didn’t really have any and everybody’s are different) but you can tell if someone is having a stroke with this quick tool:

The American Stroke Association developed this easy-to-remember guide to help identify the signs of a stroke.

F – Face drooping. Is one side of the person’s face drooping or numb? When he or she smiles, is the smile uneven?
A – Arm weakness. Is the person experiencing weakness or numbness in one arm? Have the person raise both arms. Does one of the arms drift downward?
S – Speech difficulty. Is the person’s speech suddenly slurred or hard to understand? Is he or she unable to speak? Ask the person to repeat a simple sentence. Can he or she repeat it back?
T – Time to call 9-1-1. If any of these symptoms are present, dial 9-1-1 immediately. Check the time so you can report when the symptoms began.

For facts and Information visit:

http://www.stroke.org/

Signs and Symptoms of Stroke

Knowing the signs and symptoms of a stroke is the first step to ensuring medical help is received immediately. For each minute a stroke goes untreated and blood flow to the brain continues to be blocked, a person loses about 1.9 million neurons. This could mean that a person’s speech, movement, memory, and so much more can be affected.

Learn as many stroke symptoms as possible so you can recognize stroke FAST and save a life!

Stroke symptoms include:

SUDDEN numbness or weakness of face, arm or leg, especially on one side of the body
SUDDEN confusion, trouble speaking, or understanding
SUDDEN trouble seeing in one or both eyes
SUDDEN trouble walking, dizziness, loss of balance or coordination
SUDDEN severe headache with no known cause

Call 9-1-1 immediately if you observe any of these symptoms.

Note the time of the first symptom.
This information is important and can affect treatment decisions.

http://www.stroke.org/understand-stroke/recognizing-stroke/signs-and-symptoms-stroke

#ourvolunteersareawesome

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*Volunteers at BIND are such special people. Last year, alone, we were gifted with 2,620 volunteer hours, which is 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. They help make a difference in the lives of BIND Members.

Every April we celebrate Volunteer Appreciation Month and it was a pleasure for me to have had the opportunity to interview just a few of the 40+ dedicated BIND volunteers.

Martha

  1. How did you get involved with BIND?

I met Valerie in rehab. I was her patient. She knew I was involved with arts and crafts and asked me to volunteer.

  1. Do you have any pets?

I have no pets except my husband, Kiver.

  1. What do you do to unwind?

I have been playing the piano since I was 3.

What members are saying about Martha:

-Her willingness to teach Art inspires me to be more creative.

-She brings the best out in me.

-She is a very good teacher and talented artist.

-She has a very good since of humor (she has to, to put up with all of us.).


Neeru

  1. How did you get involved with BIND?

I saw Yvette, Mark and Kevin do a presentation about BIND and loved it.

  1. Do you have any pets?

No, I do not.

  1. What do you do to unwind?

I like to read and watch T.V. a little.

What members are saying about Neeru:

  • I really enjoy playing brain games with her. It is amazing how much effort she puts in to coming up with something new each week.
  • She is just nice.
  • She really gets into her work to help others.
  • She is generous, talented, caring and sociable.


Emilie

  1. How did you get involved with BIND?

Medical Center Plano referred me here. I was an RN there for 50 years.

  1. Do you have any pets?

I don’t have any pets.

  1. What do you do to unwind?

Some of my favorite things are cooking, taking care of my herb garden, and watching T.V.

What members are saying about Emilie:

-She is smiling all the time.

-She is very helpful and goes above and beyond what needs to be done.

-She is a doll; she’s like the Mom that looks out for us all.

-She is kind, conscientious, and caring.


Karen

  1. How did you get involved with BIND?

I heard about BIND through the National Brain Tumor Society in Ft. Worth. I talked to members at a booth in the brain tumor support group. I starting volunteering after that.

  1. Do you have any pets?

I don’t but I have two grand dogs, which are corgi puppies, and are very, very cute.

  1. What do you do to unwind?

I enjoy quilting with my church, reading, and working out at the cancer fitness center with my husband.

What members are saying:

-She is very helpful and takes good care of us.

-She is very compassionate and just a nice lady.

-Big heart full of smiles.

-She fits in with all of us and relates well to everybody.

E.J.

  1. How did you get involved with BIND?

I am a student in Brightwood College and I got assigned to BIND to do my first field work.

  1. Do you have any pets?

No, but I used to have dogs.

  1. What do you do to unwind?

I watch movies, workout and play tennis every once in a while.

What members are saying:

-He brings such positive energy when he walks into the room.

-He does an outstanding job.

-He is a super nice guy.

-He is the most helpful young man I’ve ever seen.

This BLOG Post was Prepared by:

~Jenny, BIND Member

~With support from The Communications Unit