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Juneteenth

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Juneteenth

By: Della & Morgan

What is Juneteenth?

Juneteenth, the holiday, commemorates June 19, 1865. This day is important to African Americans because it was the day that the last group of slaves in the United States gained freedom. The last group of slaves received the news in Galveston, Texas on June 19, 1865. On January 1, 1863, President Abraham Lincoln signed the Emancipation Proclamation. This document declared that all slaves shall be free. This was ignored by many slave owners. On January 31, 1865, President Abraham Lincoln abolished slavery once and for all with the 13th Amendment. The news did not travel fast because it was released during the Civil War. The news finally reached everyone after the Civil War ended in 1865. Juneteenth is also known as Freedom Day, Jubilee Day, or Liberation Day. This holiday started in Texas, as former slaves moved to the North, the holiday became national.

Juneteenth Today

African Americans celebrate Juneteenth as their own Independence Day. In this celebration, individuals come together to remember the past and celebrate the future. Some of the common activities that take place during this celebration are cookouts, parties, and even parades.

https://youtu.be/MR3WqYI6wco

D Day

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By Jenny T

British statesman Winston Churchill once wrote, “Those that fail to learn from history are doomed to repeat it.”  In my family we take this as a challenge. Both my grandfather and my father-in-law served in WWII, so patriotism is very important to us. 

It is now that time of year that we as Americans should turn our collective attention to the Epic 1944 Invasion That Changed the Course of WWII. The Allied invasion of Normandy was among the largest military operations ever taged.Without the brilliant planning and heroic sacrifices of the D-Day invasion, the Allies may have never defeated the Nazi forces in Europe.

The D-Day invasion is significant in history for the role it played in WWII. It marked the turn of the tide for the control maintained by Nazi Germany; less than a year after the invasion, the Allies formally accepted Nazi Germany’s surrender. 

Though the ‘D’ in D-Day doesn’t actually stand for anything. The military used the term D-Day to designate the launch date of a mission.he term has become synonymous with the remembrance of June 6, 1944, when more than 156,000 American, British and Canadian troops stormed 50 miles of Normandy’s fiercely defended beaches in northern France. 

Not only was D-Day the largest amphibious invasion in military history.

It is also interesting to note that Allied forces carried out a massive deception campaign in advance of D-Day. In addition bad  weather delayed the invasion.

Allied losses on D-Day are estimated to be around 4,413 dead. German numbers are not well recorded, but it is estimated that between 4,000 and 9,000 were killed. The Battle of Normandy was fierce and bloody and would last until late August when the Allies crossed the Seine River towards Paris. Casualty rates were slightly higher than they were during a typical day during the Battle of the Somme in 1916. Over 425,000 Allied and German troops were wounded, killed or listed as missing during the Battle of Normandy. Of these, around 200,000 were Allied casualties of which almost 53,714 were killed. No reliable figures exist for the German losses, but it is estimated that around 200,000 were killed or wounded with approximately 200,000 more taken prisoner. French civilian casualties during the Battle of Normandy stand at around 19,890 – not including the estimated 15,000 that had been killed during bombardments prior to D-Day. The Battle left 120,000 Normandy buildings destroyed and a further 270,000 damaged.

It was a day that cost many lives on all sides of the conflict, changing not only the future of countries, but of families as well. Because of that, there is much to be learned from those who experienced its victories and its horrors first hand.

Aphasia Awareness

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By Karl K

A recent study by the National Aphasia Association revealed that a whopping 84.5% of people have never heard the term “Aphasia.”  Aphasia affects about two million Americans and is more common than Parkinson’s Disease, cerebral palsy, or muscular dystrophy. Nearly 180,000 Americans acquire the disorder each year. So, given these numbers, it is surprising how few people know anything about it.  I can tell you honestly that I knew what it was, but that is where my knowledge ended.

Aphasia is an “acquired communication disorder that impairs a person’s ability to process language but does not affect intelligence.” 1  People who have Aphasia typically have trouble talking to and understanding others.  Many of them are very slow in reading and writing.

This month we celebrate the many gains in treating Aphasia that allow someone to lead a normal life.  We celebrate the many hours put in by therapists, caseworkers, staff members, and caregivers that have made this possible.  We also celebrate amazing personal desires to go forward in life.  At the same time, we note that there is much more to do.

My recent experiences of leading the Aphasia Group at BIND (Brain Injury Network of Dallas) for many weeks have been very rewarding.  I find it remarkable to see the interest among our members who do not even have aphasia to learn and help others.

I feel that “victims” is an improper term to use.  It is not a disease.  It is a disorder.  Although it takes time to improve, the results are not always permanent. With work and perseverance, there is the potential to make positive gains in development. The research clearly shows that Aphasia is not correlated with lack of intelligence or mental illness.

 About 750,000 strokes occur each year in America.3  About a third of all strokes result in Aphasia. Between 25-40% of stroke survivors report that they acquired Aphasia at one point in their recovery.4  It can also result from a head injury, brain tumor, or other neurological causes.

People with Aphasia ask these questions, which are usually difficult for them to process.  One is about language retrieval and recognition:  (1)  Can a person say the words they want? (2) Can a person understand what others say? (3) Can a person listen and read without difficulty?  Another set of related questions is about how they speak:  (1) They have trouble saying the words they want to say.  (2) They switch sounds frequently.  (3) They use made-up words to compensate instead of staying silent.5

There are two categories of Aphasia problems that you see. Look at these two samples.  One is phonemic:  “Apple vs. Papple” or “Barber vs. Marmer.”  The other is semantic:  “Car vs. Van” or “Tiger vs. Lion” or “Foot vs. Shoe” or “Pear vs. Fruit;”

You can help others who suffer from Aphasia.  Here are five steps to follow:  (1) Be patient and do not rush the process.  (2) Use plenty of time to help the person improve.  (3) Establish a topic so that the person has a preview of what should follow.  (4) Use “yes” and “no” questions, instead of open-ended types.  (5) Repeat what they say and ask for understanding.6

I am sad that so many people who need help cannot get it.  I feel that way in many areas, not only about Aphasia.  Recently, I found numbers that show the current job market is strong for graduates in communication disorders. At the same time, I become angry when the help is wasted.

For several years, I have asked graduate students who are close to finishing their degrees what they would do about this.  I know when they get their job, and start working with clients, it is hard and tiring to think about doing work pro-bono.  However, it is the best thing and rewarding thing they can do.  I encourage them to do that.

You do not need to be a licensed therapist to help someone with Aphasia. All you must do is talk with someone. Listen.  Let them try words and phrases.  Celebrate their progress.  Help them feel good about themselves.   That does not cost any money, but the help is priceless.

NOTES:

1            https://edse6001learningdisabilities.weebly.com/

2            https://www.psychologytoday.com/us/blog/the-resilient-brain

3            https://www.webmd.com/stroke/news

4            https://www.aphasia.org/aphasia-faqs/

5            https://www.wikihow.com/Communicate-with-Aphasia-Patients

6             https://medlineplus.gov/ency/patientinstructions/000024.htm

Awareness

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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 a 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” 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 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.

~Jenny

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. 

What’s Your Word?

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A New Year

By Diane D, BIND Member

A few years ago, I was listening to the radio on New Year’s Day when the announcer mentioned that she didn’t make New Year’s resolutions; she instead chose a word for the year.  She didn’t just pick the word out of a hat, but prayerfully contemplated the word. I really liked this idea and prayerfully chose my word: Others.

As a former Activity Director at a nursing home, I did many things for others.  I wanted to give more this year. I wanted to be more attentive to others’ needs.  This would be the year I gave myself away.

My goal was to improve the quality of life of the 20-30 residents for whom I was responsible.  I gave my time, my energy; everything I could, I gave but I forgot one important person this year.  I forgot to give to myself.

In December, my health started to fail.  I began having tremors of my hands and neck.  On Christmas day, I was admitted into the hospital with seizures, where I spent the next couple of weeks.  The next year began with a brain biopsy. There was no word that year.

I had a mysterious illness with many cognitive and neurological impairments.  From my hospital stay in January until my next hospital stay in May, I continued having seizures and the tremors worsened.  I could no longer perform fine motor tasks with my hands. I began to have moments when I couldn’t move or speak and other moments where my body would move involuntarily. I had aphasia, ataxia, stuttering, overstimulation, hypersensitivity to lights and sounds, and spent more hours asleep than awake. 

In August, I got answers.  I found out that the medications I was taking to treat my symptoms were causing my symptoms because of my DNA and how I metabolize medication.  Over the counter allergy meds caused the initial tremors and the symptoms snowballed when other drugs were added.  

Now, I had to contend with the withdrawal effects of the medications that were poisoning me. The movement issues lessened but the cognitive impairments worsened and the common withdrawal symptoms, including pain throughout my body, insomnia, anxiety, and overall malaise came on strong with each reduction.  When I started to feel somewhat normal, I would taper again and subject myself to the pain and discomfort all over again, and so it cycled for almost two years.  

Each taper pummeled my body and brain, breaking and destroying it’s connections. Towards the end, my memory was severely impacted — my short-term, long-term, and working memory were all impaired.  I would forget what I was doing just moments before, all the time, and I couldn’t hold onto a thought. My memories from the past several years were slipping away.  I had problems with slowed processing, simple math, reading, and spelling. I struggled to plan, organize, follow directions, and focus my attention for any length of time.  I also had lots of confusion, headaches, migraines, and brain fog. It wasn’t until I was finally medication free that my healing could really begin.

Healing was certainly a good word for last year, but the word that my prayers led to was “humble.” My brain injury pressed the pause button on my life and gave me the gift of reflection. Reflecting on my past helped me to see that I needed to be humbled.  

I had far too much pride in my work.  With all the knowledge I acquired during the previous ten years working in the activities field, I had become arrogant. When you are passionate and study something to such depth that it becomes your primary focus in life and when you receive much praise for your work, your pride can swell if you don’t keep yourself grounded on the source of these gifts- God. A quote from The Prayer of Jabez Journal, by Bruce Wilkinson, says, “You could call God’s hand on you the touch of greatness.  You do not become great; He becomes great through you.” I was not great at my job; it was always God.

Becoming humble has come naturally with a brain injury.  Not being able to do the things I used to do is humbling. Making mistakes because of my memory, stumbling over my words, and not understanding conversation is humbling. Getting overstimulated in loud and busy environments is humbling. It is also humbling when people don’t believe or don’t understand my symptoms.  

On my recovery journey, I have run into many types of people. They are described below:

The Deserter:  These are the people who don’t know what to say.  So they don’t. They may have been a friend before, but after the injury are not heard from.  Sadly for them it is a missed opportunity. Maybe they weren’t meant for this part of the journey.  

The Mocker:  They laugh at everything, but often at another’s expense.  I have friends that poked fun, especially when I would repeat myself.  I might not have realized I was repeating myself, but I knew enough to know that they were laughing at me.  Actually, it was funny… sometimes.  I had my usual shtick of sharing my injury with others, only the people I saw frequently already knew my story.  I just forgot they knew. I don’t always remember what I did last week, yesterday, or this morning, but my headaches and cognitive

fatigue are a never ending reminder of my condition.  I want to talk about other things, but I don’t remember our last conversations or your children’s names, and sometimes your name eludes me. I may need you to help direct our discussions.

The Samer:  These are the people that have every ailment that you do.  People often try to make your symptoms seem “normal,” to help you fit in.  Sometimes they might say, “it’s not that bad,” or, “we all have that.” Only instead of making me feel included, I feel dismissed and invalidated.  I have learned that people can only reference your feelings through the filter of their own experiences.  

The Judge:  They question my condition, symptoms, or decisions.  They might challenge why I can’t do something or why I have to leave early.  Some people may not realize that each day and each hour with a brain injury can be different, even in a moment my condition can change if I become too fatigued. Others may not understand that different parts of the brain affect different functions. My friends were able to learn about brain injury through my experience.

Even my family doesn’t always understand.  Just the other day, someone said that I lost my determination.  Dear friends and family, every day with a brain injury takes more determination than you know.  I am determined to do what I can, but I am no longer determined to be who I once was. I’m not giving up. I am letting go.

It is only when my friends and family love and accept me and my condition without judgement that I feel accepted.  Seemingly some fell a bit short, but each have been here for me in many ways. My friends and family took care of me, visited me, brought me shopping or to lunch, and they helped take care of my family when I could not.   

Truth is, I have been guilty of all of those shortcomings at one time or another: not talking to someone when I don’t know what to say, making assumptions about someone’s condition, saying that I understood someone’s experience when I couldn’t possibly, laughing when someone makes a funny mistake, and thinking that a person wasn’t doing all they possibly could to get well.  I am blessed to have such caring friends and family. They did the best they knew. The only people that can really understand a brain injury are the ones that have experienced it. This is one of the elements that makes BIND so great! Everyone here understands. 

According to 1 Peter 5:5, “God opposes the proud but gives grace to the humble.”  I am finding this grace in my life. I am still learning to be humble in 2019 and I still find ways to give myself to others, making sure to also give to myself.  These words continue to have meaning long after the year is through. They’ve become a part of who I am.

My word this year is “simplify.”  Choosing this year’s word was easy.  The wake of Christmas chaos inspired this word.  I was busier this Christmas. I started BIND, I had doctors appointments each week, and I was finally able to attend parties this year.  Last Christmas I felt poorly and didn’t go out much so I had a lot to make up for.  

When my activities increased, so did my cognitive impairments.  I bought someone a gift, then another day bought them a gift. Sometimes it was the very same gift.  I lost hundreds of dollars in gift certificates (I am still missing $120.00), and I forgot about other friends and family all together.  Everything was a mess! By Christmas week, I just had to let it all go. I still have Christmas gifts sitting on my counter that I never had the energy to deliver.  I love Christmas and I love to give, but now it is time to reign things in and make things easier on myself. I can no longer keep pace with the former me.  

Evaluating my schedule has been number one in my simplification process.  Organizing my appointments and limiting them helps with my fatigue. I use UBER, buy most things online, and have my groceries delivered. 

In addition, I am getting rid of excess things.  My days are shorter and I have many projects that have piled on my plate over the last few years.  It is time to walk away from some of them. Planning and organizing are skills that I had once lost, so organizing my life is not only helpful, but it is therapy!

I have also decided to discontinue my volunteer work.  This is a hard decision that I haven’t quite committed to yet.  I had accepted a job as a teacher at a day center when I was doing better but my cognition declined and I was no longer able to supervise anyone, let alone a group of people.  Overstimulation and fatigue make it near impossible for me to visit the center for very long. I stayed on the board of directors with the hope of getting back to teaching, but it has been a year and a half and I am still unable to teach. This decision breaks my heart.  It is a decision based on the acceptance of my condition and it means leaving behind a life that no longer fits.  

As I heal, I am changing.  I will probably never be an activity director or a teacher again, even though I miss it dearly.  That was a different time, a different me. By simplifying this year, I hope to discover new goals, new projects, and a new me.  By year end, I will create space in my life for my next word.

Stroke in my 20’s

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Stroke in Your Early 20’s

Just 2 years ago, it was just after my 21stbirthday when my symptoms increased. I could not get out of bed eight days later. I had a massive stroke.

An injury at this age affects everyone differently. Some will walk away untouched, some with a journey of a recovery, others not at all. I’ve been a lucky one, but there were challenges even to this day.

Your life may just never be the same but, you are who you make yourself to be.

On the day of the stroke, I could still manage to eat and drink until three or two days later; I choked and it got worse. The stroke, in the end has caused me the following: double vision with an eye that just keeps moving up and down, numbness in the entire left half of my body, imbalance, poor cognitive function, eye sight problems, and difficulty with memory and logic.

Yet, over the course of two years of prayer, faith, rehab, and determination; I have been walking, talking, and eating all foods. I did start from the wheelchair with slurred words and total weakness throughout my entire body.

However, this 22 year old just will not give in, and neither should you. There was depression, limitations, and dependence, but when you persevere and just keep moving through the storm at the end you do find a rainbow. Obstacles I face now have been and will continue to be college, reputation, work, and just life in general.

In your 20’s you are just becoming an adult with college, getting a job, and what-ever your mind is set on. Here are some of my troubles now:

With work, I still have imbalance issues plus other limitations from birth. I worked at a veterinarian’s clinic as a kennel manager before the stroke. Due to new limitations, the loss of strength and interest, it might just be time to visit TWC which used to be known as DARS. I was fortunate for my employer; they kept my spot and waited for me. Most people just usually get laid off. Unfortunately, my limited hours may not fit my employer’s needs.

Since I just started school and depending on the class, different types of challenges came at me; these include logic in math to memory in history. I have been working with ACCESS at my college to help me get through these classes. Due to the numbness in my left side, which was my dominant side, my right hand has taken up the slack. My typing is faster than my writing.

I was used to being a full time Kennel manager who ran, biked, drew, walked, and bathed her dog. I was a person who had excessive energy, cooked, cleaned, sewed, nit, loved to drive, and be independent. Now, I am a 22 year-old who trikes, draws, gets creative, learns, drives, cleans, cooks, and continues to improve in everyday activities.

Then, there are hallucinations from time to time. It is always out of the corner of my eye and the second I glance to see it, it is the same second I realize, “Oh Man” it was never there. While I can determine hallucinations from reality for now, what about 30 to 40 years from now?

Then, we have the cane! Have you ever seen a 22 year old with a cane? Now you have, or at least you are reading about it. With school around the corner, I know the cane will or might grab attention, and if so, bring it on! I have a testimony to tell.

How does having an injury at such a young age affect someone? What obstacles have you had to overcome for a young person with a brain injury?

The answer is different for everyone.

~Mariam, BIND Member

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