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Working After Stroke

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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.

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.

Don’t Drink That Soda!

By Blog, News, Newsletter, Resources

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