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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!

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What Happens to Your Body When You Stop Drinking Soda
*See below for article reference

Drinking soda is an easy habit to fall into—it’s everywhere, and it’s easy to consider diet versions to be a relatively harmless vice. A sip for nostalgia’s sake or a quick caffeine hit can lead back to a three-a-day habit. Two diet experts tell us what happens to your body once you finally give up the colorful carbonated menace for good and in their view, soda isn’t just bad for you—it’s barely even liquid.

1. You’ll Reduce Your Cravings

Cutting the calories from sugar-spiked soda is a no-brainer: At 150 calories a can, those can add up to serious poundage. But diet soda packs on the pounds as well—it’s just more passive-aggressive about it. “Artificial sweeteners affect our sense of satiety,” says Isabel Smith, MS RD CDN, of Isabel Smith Nutrition. “Our bodies have evolutionarily developed to expect a large amount of calories when we take in something exceedingly sweet, and those artificial sweeteners are from 400 times to 8,000 times sweeter than sugar. It causes a couple things to happen: The muscles in your stomach relax so you can take in food, and hormones are released. With artificial sweeteners, your body says, ‘Wait a minute, you told me you were going to give me all this high-calorie food.’ It can actually send some people searching for more food, out of lack of satisfaction.”

2. You’ll Lose Weight

“Even though diet drinks are calorie-free, they cause insulin to be released in your gut because their artificial sweeteners are sweet like sugar, and that actually prevents weight loss,” says Miriam Jacobson, RD, CDN. “Insulin is your body’s primary fat-storage hormone, so it will have the body hold on to any extra fat,” she explains, adding, “Trying to lose weight by trading a Coke for a Diet Coke is doing the body just as much harm, if not more, because of all the chemicals in the calorie-free version.” While you’re weaning yourself off of your soda habit, add these fat burning foods to your diet, some of which actually block adipogenesis, the process by which fat is stored on your frame.

3. You’ll Get Sick Less

The acidity in soda is bad news for your digestive system, eroding tooth enamel and worsening acid reflux. But diet sodas are especially treacherous for your gut—and the far-reaching bodily systems it affects. “Researchers are finding that artificial sweeteners may affect our healthy gut bacteria, which can affect everything from blood-sugar control to weight management to disease—how our immune system works and how our body responds to infection,” says Smith.

4. You’ll Have Stronger Bones

The caramel color in soda contains an artificially created phosphorus that can be bad for long-term bone health, says Smith. Phosphorous is a natural chemical found in foods like beans and grains, but the mutant variety found in dark soda is like a dinner guest who refuses to leave. “Basically, you’re taking something that exists in nature but making this hyper-absorbable form of it,” says Smith. “Your body doesn’t have the choice whether to absorb it or excrete it, so it can cause calcium to leach out of bones. It’s particularly bad for anybody with kidney disease,” she explains.

5. You’ll Have More Energy

No shocker here: The caffeine in soda is not your friend. “Drinking too much caffeine can make you dehydrated, and it can overstimulate the nervous system, making you fatigued and exhausted,” says Smith. “I find that when people cut back on caffeine they have more energy because the caffeine causes very big highs and lows,” she adds. In her practice, Smith has seen that quitting soda can lead to a positive domino effect. “There is way more energy for our bodies in real food than in processed foods,” she says, adding, “When people cut back on processed items, they often look for more fresh foods and make better choices. By giving up soda, it may seem like you’re making one change, but it can actually change a couple aspects of your diet for the better.” To be even happier and healthier, don’t miss our essential list of the 50 Unhealthiest Foods on the Planet.

~Ted, BIND Member
*For a good summary of “What Happens to Your Body When You Stop Drinking Soda,” see this helpful article by Michael Martin from the “Eat This, Not That!” magazine: https://www.eatthis.com/health-benefits-of-quitting-soda-and-diet-soda/

Press Release

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December 4, 2018 – BIND: Brain Injury Network of Dallas, a 501c3 nonprofit corporation based in Plano, Texas, is excited to announce a grant award of $40,000 from The Meadows Foundation to support costs for the Work Readiness Program.

About the Work Readiness Program – Work Readiness is designed to transition individuals with acquired brain injury (including traumatic brain injury, stroke, or brain cancer) from rehabilitation to the workforce and is based on the concept of “Personal Social Adjustment Training” as described by the Texas Workforce Commission. Members in this program receive group training and vocational assessment in addition to participating in the typical work-ordered day at BIND. Work Readiness covers topics across 10-12 weeks related to growth and success in the workplace.

Each Work Readiness program participant will complete the series with a clear employment plan for the future. This includes fulfillment of a well-rounded skills, interests and strengths inventory that translates to the work setting. Additionally, participants will build physical and cognitive endurance and have the opportunity to identify and practice functional compensatory strategies in a true work environment. By engaging in productive work, BIND Members address appropriate social behaviors and develop skills needed to live and work more independently.

To qualify for Work Readiness: 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, commit to attend the program 2-3 days/week for 10-12 weeks, and, have transportation to/from BIND in Plano, Texas.

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.

About The Meadows Foundation – The Meadows Foundation exists to assist people and institutions of Texas improve the quality and circumstances of life for themselves and future generations. The Meadows Foundation strives to exemplify the principles of its founder in addressing basic human needs by working toward the elimination of ignorance, hopelessness and suffering; protecting the environment; providing cultural enrichment; encouraging excellence; and promoting understanding and cooperation among people.

12-4-18 Meadows Fdn Press Release PDF

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

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

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

Veteran’s Day Deals & Discounts

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In honor of our Veterans, the Outreach & Advocacy Unit at BIND compiled a list of our area’s best deals and discounts.  Enjoy!

Nov. 7th- 11th Texas de Brazil 50% off of Dinner + 1, rest of Table receives 20% off.
Nov. 7th- 11th IKEA Free Entrée’
Nov. 9th-11th Red Hot & Blue Free Entrée with the purchase of a second entrée
Nov. 10th-11th Bed, Bath, & Beyond 25% off entrée purchase
Nov. 10th-11th World Market 25% off entire purchase in stores
Nov. 10th-11th BJ’s Resturant & Brewhouse Complimentary entrée up to $12.95
Nov. 10th-11th Red Lobster Free Appetizer or Dessert from a limited menu
Nov. 11th Carmike Cinemas Free small Popcorn w/ ticket purchase
Nov. 11th Main Event Bowl for Free from open to 3pm.
Nov. 11th Great Clips Free Haircut or Haircut Card good until Dec. 31st.
Nov. 11th Sport Clips Free Haircut
Nov. 11th Dollar General 11% discount on Qualified purchases
Nov. 11th Meineke Free Oil Change
Nov. 11th Tractor Supply 15% discount on in store purchases
Nov. 11th Applebee’s Free Meal from a limited menu
Nov. 11th CiCi’s Pizza Free Pizza Buffet
Nov. 11th Cotton Patch Café Free Chicken Fried Steak or Chicken Fried Chicken
Nov. 11th Boston Market Free Brownie or Cookie
Nov. 11th Buffalo Wild Wings One small order of wings and side of fries
Nov. 11th California Pizza Kitchen Complimentary entrée from special menu
Nov. 11th Cantina Laredo Complimentary meal up to $15
Nov. 11th On the Border Free combo meal
Nov. 11th Texas Roadhouse Free Lunch from 11-2
Nov.11th Cattlemen’s Complimentary 8oz. Sirlon Steak Dinner
Nov. 11th Chili’s Free Meal from a limited menu
Nov. 11th Chipotle BOGO deal from 3-Close
Nov. 11th Chuck E. Cheese Free Individual 1 topping pizza
Nov. 11th Cracker Barrel Complimentary Slice of Double Chocolate Fudge Coca Cola Cake
Nov. 11th Denny’s Free Build Your Own Grand Slam from 5-12
Nov. 11th Dickey’s BBQ Free Meal and a Big Yellow Cup
Nov. 11th El Fenix Free Meal from a select menu
Nov. 11th Furr’s Buffet Free Buffet and drink
Nov. 11th Hooter’s Free Meal from Select menu
Nov. 11th IHOP Free Red, White, & Blue pancakes from 7-7
Nov. 11th Johnny Carino’s Free Meal
Nov. 11th Krispy Kreme Free Doughnut and Small coffee
Nov. 11th Little Caesars Pizza Free $5 Lunch combo from 11-2
Nov. 11th Olive Garden Free Entrée from Special Menu
Nov. 11th Quaker Steak & Lube Complimentary or discounted Meal of their choice
Nov. 11th Red Robin Free Red’s Tavern Double Burger w/ Bottomless Steak Fries
Nov. 11th Rock & Brews Complimentary Pulled Pork Sandwich
Nov. 11th Ruby Tuesday Free Appetizer
Nov. 11th Snuffer’s Resturant & Bar Free Burger
Nov. 11th Starbucks Vets and Spouces get a Free Tall Coffee
Nov. 11th TGI Friday Free Lunch from 11-2
Nov. 11th Twin Peaks Free Menu item from their Annual Veteran’s Day Apprecication Menu
Nov. 11th World of Beer Free Select Draught Beer
Nov. 11th Outback Steakhouse Free Bloomin Onion and Beverage
Nov. 11th-13th Spaghetti Warehouse Buy One Entrée and Get the Second Entrée Free
Nov. 11th-13th Firestone Complete Auto Care Additional 10% off the Lowest Ad Price
Nov. 12th- Dec. 31 Outback Steakhouse 15% off their Meals
Nov. 13th Golden Coral Free Dinner from 5-9

 

Coping With Aphasia: A Survivor’s Perspective

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The word “Aphasia” was introduced in my vocabulary as a Physical Therapy student at the University of Mississippi Medical Center in 1992. During my clinical experience taking care of and treating a vast number of patients with neurological conditions (cerebrovascular accidents commonly named “strokes”, brain tumors, traumatic brain injury), I found more insight 3 years ago transitioning from clinician to patient. On May 13, 2014, I had an ischemic stroke with right sided hemi paresis, motor apraxia and aphasia.

Aphasia is an impairment of language, affecting the production or comprehension of speech and the ability to read or write. Aphasia is always due to a brain injury from a stroke, head trauma, brain tumors or infections. It’s more common in older adults, particularly those who have had a stroke.

Aphasia can be mild or severe dependent on the severity of the damage to language areas of the brain. People who have aphasia may affect the ability to retrieve names of objects, putting words together into sentences, reading, understanding words, finding the “right” words to complete their thoughts. They may also have problems with auditory comprehension (conversation, words or numbers), understanding written words or numbers and writing. More commonly, however, individuals with aphasia can have multiple aspects communication impairments. Unfortunately, I had all aforementioned speech deficits initially after my stroke and still have aphasia problems especially when I’m tired or emotional.

I had inpatient therapy at Baylor Rehabilitation of Dallas for one week and outpatient at Pate Rehab in Anna, TX. I participated in speech therapy 6 hours per day and 5 times per week for 8 months. My speech therapist, Anne, administered several assessments to determine the type of aphasia that affected me.

There are various types of aphasia and I have two of them: Expressive Aphasia & Anomic Aphasia

Other common types of aphasia are:

  1. Broca’s (Expressive) aphasia (non-fluent) – the person knows what he or she wants to say but has difficulty communicating it to others.
  2. Anomic aphasia – the person has word finding difficulties or struggles to find the right words to speak and write.
  3. Wernicke’s (Receptive) aphasia (fluent) – the person can hear others or read words, but may not understand the meaning of the message.
  4. Global aphasia– the person has difficulty speaking and understanding the meaning of the words. The person is unable to read or write. This is the most severe type of aphasia.
  5. Primary progressive aphasia – this type is rare where people slowly lose the ability to talk, read, write and comprehend what they hear in conversations over a period of time.

Coping with aphasia can be difficult and frustrating for many, but you must have strength to overcome. Having aphasia is a loss and grieving is key to heal mentally and spiritually during your recovery. It’s a battle to accept your impairments, to accept others & especially family to deal with your “new normal” and move forward in your life despite aphasia. Feelings of frustration, guilt and embarrassment at the inability to communicate can lead to anger, depression and avoidance of others. I stopped meeting girlfriends for lunch or other social events initially because I was embarrassed and felt I would not be involved in the conversation because my speech was not fluent. Hence, the barrier was me, not my friends.

People with aphasia may tire easily and show extreme emotional fluctuations particularly early in the recovery process. In fact, sometimes it overwhelms me to where I’m still mentally and physically exhausted. It is a lot of energy to find, write or correct words from sounds or sentences, read and speak your own name and phone number. Like writing this blog!

Family members may also feel strong emotions including anxiety, anger, confusion, depression and despair. A good support system of family and friends are important. As a person with aphasia, I understand family members may feel a sense of loss too, but practice patience. It is normal to go through a grieving process when the one you love develops aphasia. Support groups are valuable to help through this recovery and afterwards too!

If you have a loved one with aphasia, embrace them every day, allow them to keep their personality, laugh, cry and pray for them! Believe! Faith! Love!

~Celeste Larkins