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[BLOG POST] 5 Things Every TBI Survivor Wants You to Understand – HuffPost

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March is National Brain Injury Awareness Month, and as promised, I am writing a series of blogs to help educate others and bring awareness to traumatic brain injuries (TBI).

1. Our brains no longer work the same. 
We have cognitive deficiencies that don’t make sense, even to us. Some of us struggle to find the right word, while others can’t remember what they ate for breakfast. People who don’t understand, including some close to us, get annoyed with us and think we’re being “flaky” or not paying attention. Which couldn’t be further from the truth, we have to try even harder to pay attention to things because we know we have deficiencies.

Martha Gibbs from Richmond, VA, suffered a TBI in May of 2013 after the car she was a passenger in hit a tree at 50 mph. She sums up her “new brain” with these words:

Almost 2 years post-accident, I still suffer short-term memory loss and language/speech problems. I have learned to write everything down immediately or else it is more than likely that information is gone and cannot be retrieved. My brain sometimes does not allow my mouth to speak the words that I am trying to get out.

2. We suffer a great deal of fatigue.
We may seem “lazy” to those who don’t understand, but the reality is that our brains need a LOT more sleep than normal, healthy brains. We also have crazy sleep patterns, sometimes sleeping only three hours each night (those hours between 1 and 5 a.m. are very lonely when you’re wide awake) and at other times sleeping up to 14 hours each night (these nights are usually after exerting a lot of physical or mental energy).

Every single thing we do, whether physical or mental, takes a toll on our brain. The more we use it, the more it needs to rest. If we go out to a crowded restaurant with a lot of noise and stimulation, we may simply get overloaded and need to go home and rest. Even reading or watching tv causes our brains to fatigue.

Toni P from Alexandria, VA, has sustained multiple TBI’s from three auto accidents, her most recent one being in 2014. She sums up fatigue perfectly:

I love doing things others do, however my body does not appreciate the strain and causes me to ‘pay the price,’ which is something that others don’t see.  I like to describe that my cognitive/physical energy is like a change jar. Everything I do costs a little something out of the jar.  If I keep taking money out of the jar, without depositing anything back into the jar, eventually I run out of energy. I just don’t know when this will happen.  Sometimes it’s from an activity that seemed very simple, but was more work then I intended. For me, like others with TBIs, I’m not always aware of it until after I’ve done too much.

3. We live with fear and anxiety. 
Many of us live in a constant state of fear of hurting ourselves again. For myself personally, I have a fear of falling on the ice, and of hitting my head in general. I know I suffered a really hard blow to my head, and I am not sure exactly how much it can endure if I were to injure it again. I am deeply afraid that if it were to take another blow, I may not recover (ie, death) or I may find myself completely disabled. I am fortunate to have a great understanding of the Law of Attraction and am trying my hardest to change my fears into postive thoughts with the help of a therapist.

Others have a daily struggle of even trying to get out of bed in the morning. They are terrified of what might happen next to them. These are legitimate fears that many TBI survivors live with. For many, it manifests into anxiety. Some have such profound anxiety that they can hardly leave their home.

Jason Donarski-Wichlacz from Duluth, MN, received a TBI in December of 2014 after being kicked in the head by a patient in a behavioral health facility. He speaks of his struggles with anxiety:

I never had anxiety before, but now I have panic attacks everyday. Sometimes about my future and will I get better, will my wife leave me, am I still a good father. Other times it is because matching socks is overwhelming or someone ate the last peanut butter cup.

I startle and jump at almost everything. I can send my wife a text when she is in the room. I just sent the text, I know her phone is going to chime… Still I jump every time it chimes.

Grocery stores are terrifying. All the colors, the stimulation, and words everywhere. I get overwhelmed and can’t remember where anything is or what I came for.

4. We deal with chronic pain.
Many of us sustained multiple injuries in our accidents. Once the broken bones are healed, and the bruises and scars have faded, we still deal with a lot of chronic pain. For myself, I suffered a considerable amount of neck and chest damage. This pain is sometimes so bad that I am not able to get comfortable in bed to fall asleep. Others have constant migraines from hitting their head. For most of us, a change in weather wreaks all sort of havoc on our bodies.

Lynnika Butler, of Eureka, CA, fell on to concrete while having a seizure in 2011, fracturing her skull and resulting in a TBI. She speaks about her chronic migraine headaches (which are all too common for TBI survivors)

I never had migraines until I sustained a head injury. Now I have one, or sometimes a cluster of two or three, every few weeks. They also crop up when I am stressed or sleep deprived. Sometimes medication works like magic, but other times I have to wait out the pain. When the migraine is over, I am usually exhausted and spacey for a day or two.

5. We often feel isolated and alone.
Because of all the issues I stated above, we sometimes have a hard time leaving the house. Recently I attended a get together of friends at a restaurant. There were TVs all over the room, all on different channels. The lights were dim and there was a lot of buzz from all of the talking. I had a very hard time concentrating on what anyone at our table was saying, and the constantly changing lights on the TVs were just too much for me to bear. It was sensory stimulation overload. I lasted about two hours before I had to go home and collapse into bed. My friends don’t see that part. They don’t understand what it’s like. This is what causes many of us to feel so isolated and alone. The “invisible” aspect of what we deal with on a daily basis is a lonely struggle.

Kirsten Selberg from San Francisco, CA, fell while ice skating just over a year ago and sustained a TBI. She speaks to the feelings of depression and isolation so perfectly:

Even though my TBI was a ‘mild’ one, I found myself dealing with a depression that was two-fold. I was not only depressed because of my new mental and physical limitations, but also because many of my symptoms forced me to spend long periods of time self-isolating from the things — like social interactions — that would trigger problems for me. With TBI it is very easy to get mentally and emotionally turned inward, which is a very lonely place to be.

Also, check out my other blogs on the Huffington Post:
“Life With a Traumatic Brain Injury”
“Life With a TBI: March is National Brain Injury Awareness Month”

I invite you to join my TBI Tribe on Facebook if you are a survivor, or loved one of a survivor.

Source: 5 Things Every TBI Survivor Wants You to Understand | HuffPost

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[BLOG POST] Life After a TBI: The Invisible Challenges of an Invisible Disability

By David A. Grant


It was not the place I ever expected to find myself, yet there I was – stuck in the men’s room with only a few minutes until I was supposed to speak.

So much of life these days, life as a brain injury survivor, is surreal.

When Brain Injury Canada reached out, asking me to present at the semi-annual conference in New Brunswick, getting stuck in a men’s room was the farthest thing from my mind. Then again, so was getting struck by a car that fated day so long ago. Some things, you just can’t see coming.

Being invisibly disabled comes with a unique set of challenges. If we met at our local market or crossed paths somehow, you might never know I am disabled. My socks match, most of the time. I am able to work. I pay a mortgage and a car payment. My wife Sarah and I have a happy and meaningful marriage. Our lawn is cut regularly and flowers sprout with reckless abandon in our yard. On the outside, all appears to be normal. But looks can be so deceiving.

Attendees at the recent Brain Injury Canada Conference saw my forward-facing side. There were lots of genuine smiles, new friends met, and old friendships revisited. The kindness and warmth of our Canadian hosts were superb. But I’d like to share a couple of events that came to pass outside of the public eye. Yes, it’s time to go backstage!

A couple of things happened that are so typical of the invisible challenges that I still face well into my seventh year as a brain injury survivor. Conference attendees saw neither, but today I’ll bare my soul and share them with you. Perhaps you’ll have a bit of a laugh. Perhaps you’ll learn a bit as well. Both are okay with me.

We arrived in Saint John after a seven-hour drive. Knowing that we would surely stop along the way, I cleverly hid our luggage under a checkered picnic cloth that never strays very far from my Jeep.

After checking in to our hotel, it was time to get settled in. If you travel, you know the drill: bring in your luggage, put things here and there, and do your best to make your home-away-from-home feel a bit like… well, home. I popped upon the rear tailgate and stood Jeep-side in complete panic.

OUR LUGGAGE WAS GONE!

Instant panic and adrenaline rushed through my veins. My jaw dropped open as I stared into the empty storage area. Sarah said later that her first thought was a panicked one after seeing the look of terror on my face: “David forgot the luggage.”

There I stood, looking at the checkered table cloth and nothing else. After an extraordinarily long ten seconds, I understood what had happened. I simply forgot that the luggage was under our picnic cloth.

In what amounts to one thread in the fabric of my post-brain-injury fabric life, if something is no longer in my sight, it simply doesn’t exist. I take, “Out of sight, out of mind,” to a whole new level.

At that moment in time, our luggage no longer existed – because I couldn’t see it. As my processing speed is a fraction of what it was, the light bulb over my head takes quite a while to illuminate. Sometimes it doesn’t illuminate at all.

I exhaled, pulled off the picnic cloth, and grabbed our luggage – much to our mutual relief. How I wished it stopped there, but the worst was yet to come.

There are some who erroneously think that the passage of time erases all challenges. They are wrong. Like others who have invisible disabilities, many of my challenges remain out of sight.

I’ll let you in on a secret. You and me only, okay?

Without exception, a few minutes before I speak at a conference, I always seek out a quiet place. My intent is always the same. I reach out to whatever the Power is behind the Universe to ask for help. Call it God, a Higher Power, or whatever your choice may be.

“Help me to be of service to You, to not be self-serving… and to help someone today.” It’s a simple request. This has been how I’ve done things since my first keynote presentation back in 2013. If it already works, why fix it?

Occasionally, the only quiet place I can find is the men’s room. Any port in the storm. Being an upscale facility, the Saint John Hilton is defined by clean lines and minimalist look. That look was carried into the inside of the men’s room. The walls were a medium gray and unadorned. The inside of the men’s room door was the EXACT color of the inside walls. By now, you might already know where I’m going with this.

With less than five minutes before my big presentation, I was completely unable to get out of the men’s room. Like a panther caged at the zoo, I did laps around the perimeter of my enclosure. With each lap, my panic doubled as the time I was expected to present ticked ever closer.

Three to four laps later, I saw the inside door handle, far too close in color to the rest of my unexpected cage. With sweet relief, the door swung open and I dashed back to the conference room. This was just a slightly different variation of our not-so-lost luggage as I was completely unable to discern that which I could not see.

Later, I shared my experience with Sarah. “You could have texted me,” she said, no smile on her face.

Yeah right.

“HELP, I’M STUCK IN THE BATHROOM!”

Brain damaged or not, I still have some pride, you know.

Why share the embarrassing details of this? There are some who erroneously think that the passage of time erases all challenges. They are wrong. Like others who have invisible disabilities, many of my challenges remain out of sight. But just because they can’t be seen, it doesn’t mean they aren’t there.

If fate puts you at a conference where I am scheduled to speak, and I’m nowhere to be found in the last couple of minutes beforehand, please feel free to let me out of the men’s room. I’d really appreciate it.

Author Image
David A. Grant is an internationally recognized brain injury advocate, freelance writer, keynote speaker and brain injury survivor based out of southern New Hampshire. He is the author of Metamorphosis, Surviving Brain Injury, a book that chronicles in the first year-and-a-half of his new life as a brain injury survivor. His second title, Slices of Life after Traumatic Brain Injury, was released in 2015. In 2016, David and his wife Sarah coproduced To Be Inspired: Stories of Courage and Hope after Brain Injury, a complication book of survivor stories. David is also a contributing author to Chicken Soup for the Soul, Recovering from Traumatic Brain Injuries and Chicken Soup for the Soul, Why I chose Gratitude.
As a survivor of a cycling accident in 2010, he shares his experience and hope through advocacy work including public speaking as well as his weekly brain injury blog. David is a regular contributing writer to Brainline.org, a PBS sponsored website. He is also a BIANH board member as well as a columnist in HEADWAY, the Brain Injury Association of New Hampshire’s periodic newsletter.
David is the founder of TBI Hope and Inspiration, a Facebook community with over 20,000 members including survivors, family members, and caregivers as well as members of the medical and professional community. In late 2016, David’s brain injury blog was awarded “Best Brain Injury Blog of 2016” by Healthline.org, a leading health information provider.
Together with his wife Sarah, they publish of TBI HOPE Magazine. TBI HOPE Magazine is the world’s largest monthly magazine dedicated to brain injury of all kinds and is now ready in over thirty countries around the world. TBI HOPE Magazine is a free, all-digital monthly magazine that features stories by brain injury survivors and those who love them.
When David is not in front of his keyboard, he can be found cycling the byways of southern New Hampshire.

Source: Life After a TBI: The Invisible Challenges of an Invisible Disability – DIFFERENT BRAINS

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[BLOG POST] Menses and Sexual Changes in Women After Trauma – H.O.P.E TBI

Menses and Sexual Changes in Women After Trauma

Blood cells

What is the endocrine system?

Your endocrine system includes glands and organs that make and release hormones, which are chemicals that help your body work properly. They control growth, sexual development, how your body uses and stores energy (metabolism), how it deals with illness, and more. You need proper types and amounts of hormones to feel well.

How can TBI affect the endocrine system?

Two important parts of the endocrine system—the pituitary gland and the hypothalamus—are located in or near the brain. The hypothalamus and the pituitary gland are like orchestra conductors. Their job is to tell other endocrine glands throughout the body to make the hormones that affect and protect every aspect of your health. TBI can injure them, causing hormone problems. A person with TBI may have hormone problems right away or months or even years after the injury.

Menses and Sexual Changes in Women After Brain Trauma

Repeated mild Traumatic Brain Injuries (TBI) occurring over an extended period of time can result in cumulative neurological and cognitive deficits. Repeated mild TBIs occurring within a short period of time (i.e., hours, days, or weeks) can be catastrophic or fatal.

After TBI, there may be some changes to the pituitary. The Pituitary is a pea-sized gland in your brain that makes hormones that help to keep your periods regular every month. When the pituitary makes low levels of certain hormones, this can mean having skipped or missed periods. Stress can cause your hormone levels to change. This can also change your periods. Certain medications can also cause changes to your periods. Ask your doctor about the side effects of the medications you are taking.endocrine3

Recent research indicates there is a higher incidence of hormone abnormalities in people who have sustained a brain injury.  This is directly related to injury of the hypothalamus, and pituitary gland and all the hormones they produce or stimulate to produce, including thyroid hormone, growth hormone, cortisol, and the sex hormones (FSH, LH, Prolactin, estrogen, and testosterone).  It is more common to see these abnormalities early on after a brain injury but they can come on as a long term consequence.  The hypothalamus and/or pituitary gland, are small structures at the base of the brain responsible for regulating the body’s hormones. Damage to these areas can lead to insufficient or increased release of one or more hormones, which causes disruption of the body’s ability to maintain a stable internal environment (homeostasis).  Damage to the pituitary gland leads to a reduction in hormone production resulting in a condition known as hypopituitarism. Medication and other medical illnesses should be ruled out as the cause of any hormone
abnormalities as well.

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Women experience greater cognitive decline, poorer reaction times, more headaches, extended periods of depression, longer hospital stays and delayed return-to-work compared to men following head injury. Such results are particularly pronounced in women of childbearing age; girls who have not started their period and post-menopausal women have outcomes similar to men.

At one year after injury, negative outcomes (persistent physical symptoms, requiring assistance with cognitive difficulties, social and occupational difficulties, reduced quality of life) were repeated more frequently by those who were female, older, and had received more severe injuries.  However, among patient with mTBI injuries it has been identified that 24% of patients who suffered with persistent symptoms and significant life disruption at 3 months post injury were more likely to be young and female, had a prior head injury, neuro/psychiatric symptoms, or a TBI as a result of a motor vehicle accident.

Menstrual troubles such as amenorrhea, or the absence of a period, and irregular cycles are more common in women with TBI. The mean duration of amenorrhea was 6.5 months with a range of 1 – 60 months.  There was one participant whose menses stopped at time of injury and had not returned by time of interview.

After a TBI you may have skipped or missed periods. You may also have more pain or notice more headaches during your periods. You may notice changes to your periods while in the hospital, rehabilitation or at home. These changes can happen in mild to more serious injuries. Still, absence of a menses is more likely to happen when the brain injury is serious. Skipping or missing your period can last from 1 month to many years. For many women, the changes to their periods get better with time, but not always.

Of 104 women with TBI (W-TBI), 46% experienced amenorrhea with duration of up to 60 months. Cycles became irregular for 68% of W-TBI after the injury. These findings were significantly different from those of controls. Among W-TBI, menstrual disturbances were associated with injury severity. No differences were shown between W-TBI and controls with respect to fertility, although significantly fewer W-TBI had one or more live births, and they reported more difficulties in the postpartum period than controls. W-TBI were less likely to have regular Pap smears and reported lower mental health, self-rated health, and function.

Significantly fewer (49%) reported changes in menstrual flow after injury compared with the control counterparts (64%).  Matched case-control conditional regression analyses showed that W-TBI were 21 times more likely than controls to report amenorrhea after injury; for those with regular cycles, W-TBI were 6 times more likely to experience irregular cycles.  Among W-TBI, amenorrhea was associated with lower GCS Scores, Higher ISS, and longer length of acute hospital stays.  Irregular periods emerging after the injured were significantly associated with higher ISS only.

Pregnancy/Fertility – 28% of W-TBI indicated that they tried to conceive or became pregnant after their TBI vs. 35% of controls during a comparable time period.  Hence, the subgroups for these analyses are smaller in size.

Changes in sexual functioning are common after TBI as well. Brain Injury can change the way a person expresses or experiences their sexuality. There are many reasons sexual problems happen after TBI. Some are directly related to damage to the brain. Others are related to physical problems or changes in thinking or relationships.

No significant group differences were found in terms of difficulty conceiving or difficulties during pregnancy after injury.  Those who became pregnant however, significantly fewer W-TBI had one or more live births compared with controls.  W-TBI were also more likely to report post pregnancy difficulties in the pregnancies that occurred after the brain injury compared with controls in the equivalent time period.  The 12 women reported the following: Increased fatigue, pain, depression, mobility problems, inability to concentrate and lower extremity edema. Three women who did not report depression reported “feeling the blues” and 1 woman reported hip pain/headaches.

These findings inform prognosis after TBI for women and provide evidence for long-term monitoring of health outcomes and increased support after childbirth. More research is needed in this area, particularly with respect to the neuroendocrine system.

“I don’t think doctors consider menstrual history when evaluating a patient after a concussion, but maybe we should,” noted Bazarian, associate professor of Emergency Medicine at the University of Rochester School of Medicine and Dentistry who treats patients and conducts research on traumatic brain injury and long-term outcomes among athletes. “By taking into account the stage of their cycle at the time of injury we could better identify patients who might need more aggressive monitoring or treatment. It would also allow us to counsel women that they’re more – or less – likely to feel poorly because of their menstrual phase.”

Although media coverage tends to focus on concussions in male professional athletes, studies suggest that women have a higher incidence of head injuries than men playing sports with similar rules, such as ice hockey, soccer and basketball. Bazarian estimates that 70 percent of the patients he treats in the URMC Sport Concussion Clinic are young women. He believes the number is so high because they often need more follow-up care. In his experience, soccer is the most common sport leading to head injuries in women, but lacrosse, field hockey, cheerleading, volleyball and basketball can lead to injuries as well.

sex and tbi

Sex hormone levels often change after a head injury, as women who have suffered a concussion and subsequently missed one or more periods can attest. According to Kathleen M. Hoeger, M.D., M.P.H.,study co-author and professor of Obstetrics and Gynecology at the University of Rochester School of Medicine and Dentistry, any stressful event, like a hit to the head, can shut down the pituitary gland in the brain, which is the body’s hormone generator. If the pituitary doesn’t work, the level of estrogen and progesterone would drop quickly.

According to Bazarian, progesterone is known to have a calming effect on the brain and on mood. Knowing this, his team came up with the “withdrawal hypothesis”: If a woman suffers a concussion in the premenstrual phase when progesterone levels are naturally high, an abrupt drop in progesterone after injury produces a kind of withdrawal which either contributes to or worsens post concussive symptoms like headache, nausea, dizziness and trouble concentrating. This may be why women recover differently than men, who have low pre-injury levels of the hormone.

“If you get hit when progesterone is high and you experience a steep drop in the hormone, this is what makes you feel lousy and causes symptoms to linger,” said Bazarian. “But, if you are injured when progesterone is already low, a hit to the head can’t lower it any further, so there is less change in the way you feel.”

The team suspected that women taking birth control pills, which contain synthetic hormones that mimic the action of progesterone, would have similar outcomes to women injured in the low progesterone phase of their cycle. As expected, there was no clear difference between these groups, as women taking birth control pills have a constant stream of sex hormones and don’t experience a drop following a head hit, so long as they continue to take the pill.

“Women who are very athletic get several benefits from the pill; it protects their bones and keeps their periods predictable,” noted Hoeger. “If larger studies confirm our data, this could be one more way in which the pill is helpful in athletic women, especially women who participate in sports like soccer that present lots of opportunities for head injuries.”

In addition to determining menstrual cycle phase at the time of injury, Bazarian plans to scrutinize a woman’s cycles after injury to make sure they are not disrupted. If they are, the woman should make an appointment with her gynecologist to discuss the change.

sexandtbi

How does a traumatic brain injury affect sexual functioning?

The following changes in sexual functioning can happen after TBI:

  • Decreased Desire: Many people may have less desire or interest in sex.
  • Increased Desire: Some people have increased interest in sex after TBI and may want to have sex more often than usual. Others may have difficulty controlling their sexual behavior. They may make sexual advances in inappropriate situations or make inappropriate sexual comments.
  • Decreased Arousal: Many people have difficulty becoming sexually aroused. This means that they may be interested in sex, but their bodies do not respond. Men may have difficulty getting or keeping an erection. Women may have decreased vaginal lubrication (moisture in the vagina).
  • Difficulty or Inability to Reach Orgasm/Climax: Both men and women may have difficulty reaching orgasm or climax. They may not feel physically satisfied after sexual activity.
  • Reproductive Changes: Women may experience irregular menstrual cycles or periods. Sometimes, periods may not occur for weeks or months after injury. They may also have trouble getting pregnant. Men may have decreased sperm production and may have difficulty getting a woman pregnant.

Possible causes of changes in sexual functioning after TBI include:

  • Damage to the Brain: Changes in sexual functioning may be caused by damage to the parts of the brain that control sexual functioning.
  • Hormonal Changes: Damage to the brain can affect the production of hormones, like testosterone, progesterone, and estrogen. These changes in hormones affect sexual functioning.
  • Medication Side Effects: Many medications commonly used after TBI have negative side effects on sexual functioning.
  • Fatigue/Tiredness: Many people with TBI tire very easily. Feeling tired, physically or mentally, can affect your interest in sex and your sexual activity.
  • Problems with Movement: Spasticity (tightness of muscles), physical pain, weakness, slowed or uncoordinated movements, and balance problems may make it difficult to have sex.
  • Self-Esteem Problems: Some people feel less confident about their attractiveness after TBI. This can affect their comfort with sexual activity.
  • Changes in Thinking Abilities: Difficulty with attention, memory, communication, planning ahead, reasoning, and imagining can also affect sexual functioning.
  • Emotional Changes: Individuals with TBI often feel sad, nervous, or irritable. These feelings may have a negative effect on their sexual functioning, especially their desire for sex.
  • Changes in Relationships and Social Activities: Some people lose relationships after TBI or may have trouble meeting new people. This makes it difficult to find a sexual partner.

Problems Reported by Females with TBI regarding sexual activity include:

  • Inadequate energy for sex
  • Problems with initiation and arousal
  • Dificulty reaching orgasm
  • Inability to masterbate
  • Low sex drive or  no sex drive
  • Painful sex
  • Problems with orgasm and lubrication
  • Decreased sensation
  • Discomfort in positioning
  • Depression
  • Endocrine/hormonal problems
  • Urogenital problems

Less Reported Symptoms:

  • Safety concerns (impulsivity, judgement,promiscuity, sexual agressiveness)
  • Disinhibition and surging hormones (hypersexuality)

 

 

References:

Womens Reproductive Health and Traumatic Brain Injury (pdf)
Menstrual Phase as Predictor of Outcome After Mild Traumatic Brain Injury in Women (pdf)
Brain Injury and Sexual Issues
Sexuality After Traumatic Brain Injury
Women’s health outcomes after traumatic brain injury
Effects of Brain Injury and Hormonal Changes
Menstrual cycle influences concussion outcomes
Traumatic Brain Injury
Women face additional challenges after traumatic brain injury
Headaches are common in year following traumatic brain injury, especially among females
Does brain injury cause early onset menopause
Women At War
Traumatic brain injury outcomes
Womens Health Outcomes After Traumatic Brain Injury

Source: Menses and Sexual Changes in Women After Trauma | H.O.P.E TBI

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[BLOG POST] Driving After Stroke: Is it Safe? -Saebo

After having a stroke, many survivors are eager to start driving again. Driving offers independence and the ability to go where you want to go on your own schedule, so it is no surprise that survivors want to get back behind the wheel rather than rely on someone else for their transportation needs.

Unfortunately, having a stroke can have lasting effects that make driving more difficult. A survivor might not be aware of all of the effects of their stroke and could misjudge their ability to drive safely. Driving against a doctor’s orders after a stroke is not only dangerous, it may even be illegal. Many stroke survivors successfully regain their ability to safely drive after a stroke, but it is important that they do not attempt to drive until they are cleared by their healthcare provider.

 

How Stroke Affects the Ability to Drive

Having a stroke can affect an individual’s ability to drive in numerous ways, whether it be because of physical challenges, cognitive changes, or other challenges.

 

Physical Challenges

Physical-Challenges

After a stroke, it’s common to experience weakness or paralysis on one side of the body, depending on which side of the brain the stroke occurred. More than half of all stroke survivors also experience post-stroke pain. Minor physical challenges may be overcome with adaptive driving equipment, but severe challenges like paralysis or contracture can seriously affect an individual’s ability to drive.

 

Cognitive Effects

cognitive

Driving requires a combination of cognitive skills, including memory, concentration, problem solving, judgement, multitasking, and the ability to make quick decisions. A stroke can cause cognitive changes that limit the ability to do many of those things.

 

Vision Problems

vision

As many as two-thirds of stroke victims experience vision impairments as a result of a stroke. This can include vision loss, blurred vision, and visual processing problems. Stroke survivors with vision problems should not drive until their problems are resolved and they have been cleared by a doctor.

 

Fatigue

fatigue

Fatigue is a common physical condition after a stroke that affects between 40 and 70 percent of stroke survivors. Fatigue can arrive without warning, so it is dangerous to drive when suffering from post-stroke fatigue.

 

Warning Signs of Unsafe Driving

 

Stroke survivors are not always aware of how their stroke has limited their ability to drive. If they are choosing to drive after their stroke against their doctor’s advice, it is important for them and their loved ones to look out for warning signs that they might not be ready to start driving. Here are some of the common warning signs to look out for:

  • Driving faster or slower than the posted speed or the wrong speed for the current driving conditions
  • Consistently asking for instruction and help from passengers
  • Ignoring posted signs or signals
  • Making slow or poor decisions
  • Becoming easily frustrated or confused
  • Getting lost in familiar areas
  • Being in an accident or having close calls
  • Drifting into other lanes

 

If you or your loved one is showing any of these warning signs, immediately stop yourself or them from driving until your or their driving is tested.

 

Driving Again After a Stroke

Before a stroke survivor begins driving again, they should speak with their doctor or therapist to discuss whether or not it would be safe for them to continue driving. Many states require mandatory reporting by a physician to the DMV if their patient has impairments that may affect their driving after a stroke. Even if their doctor clears them to drive, they still will likely need to be evaluated by the DMV before they regain their driving privileges.

 

Driver rehabilitation specialists are available to help stroke survivors evaluate their driving ability from behind the wheel. There are also driver’s training programs that provide a driving evaluation, classroom instruction, and suggestions for modifying a car to the individual driver’s needs. For instance, an occupational therapist can provide a comprehensive in-clinic evaluation of a client’s current skills and deficits relative to driving.

 

From there a client could be sent for an in-vehicle assessment for further evaluation by a certified driver rehabilitation specialist (CDRS). They can assess driving skills in a controlled and safe environment. An in-vehicle driving test is the most thorough way to gauge a driver’s abilities. Each assessment takes about 1 hour and involves driving with a trained evaluator or driving in a computer simulator.

 

The “behind-the-wheel” evaluation will include testing for changes in key performance areas such as attention, memory, vision, reaction time, and coordination. After this assessment the CDRS can determine if the client is safe to drive, can not drive at all, or may drive with additional recommendations.

 

Often times clients may require certain modifications to their car in order to drive safely. In addition, some clients may benefit from on-going classroom training and simulation training in order to meet safety standards. These are all services that a driver rehabilitation specialist can provide. To help find these resources, The Association for Driver Rehabilitation Specialists has a directory of certified driver rehabilitation specialists, driver rehabilitation specialists, and mobility equipment dealers and manufacturers.

 

Get Back Behind the Wheel

Many stroke survivors successfully drive after a stroke; however, not all are able to. While reclaiming independence is important, staying safe is the greatest concern. It is important for stroke survivors to listen to their doctors and wait until they are fully ready before attempting to drive again. With some hard work and patience, getting back behind the wheel is possible.

 


All content provided on this blog is for informational purposes only and is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. If you think you may have a medical emergency, call your doctor or 911 immediately. Reliance on any information provided by the Saebo website is solely at your own risk.

Source: Driving After Stroke: Is it Safe? | Saebo

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[VIDEO] Effect of Brain Injury on Personality – YouTube

How does personality change after brain injury? In this video, NeuroRestorative’s Dr. Gordon Horn explains the cognitive, emotional and social components that impact personality. As a Neuropsychologist, Dr. Horn works with individuals and families to evaluate, stabilize, and optimize personality changes so individuals can continue their rehabilitative progress.

Interested in learning more? Watch the other videos in our “Effects of Brain Injury” series!

Feel free to rate, comment on and share these videos with others!

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[WEB SITE] Caregiving Issues and Strategies

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Whether you’re trying to work out a care plan for your aging parents with  your siblings, or searching online for the latest app to assist you with your ill spouse’s medication reminders, FCA’s resources on Caregiving Issues and Strategies offer a wealth of information. This section provides you with practical care strategies, stress relief, available community resources, how to handle family issues, as well as hands-on care.

Source: Family Caregiver Alliance

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[BLOG POST] 5 Tips on Caring For An Individual With a Brain Injury

When a loved one or family member suffers a brain injury, you may take the role of caregiver – a role that can be exceptionally challenging. At the very least, it’s a stressful time that can call on all of your mental and physical resources and abilities.

The fact is, few injuries are as devastating as a severe brain injury. The person who suffers one may behave, think, and see the world differently than he or she did prior. Providing support and being their caregiver, is often a delicate, demanding task. Here are some suggestions to keep in mind.

1.Structure is Vital

Maintaining a structured environment is essential for providing care to someone who’s suffered a brain injury. The structure will minimize potential issues by providing the individual a consistent, dependable way of life. It provides you (the caregiver) with a disciplined approach that accounts for most variables and inevitable challenges that may arise. It also means maintaining a schedule that provides as much activity as the patient can handle, without becoming overly fatigued.

2. Communication

Knowing what not to say to a person with a brain injury is just as important as knowing what to say. Keep these tips in mind:

  • Don’t tell them they’re not trying hard enough – Apathy, not laziness, is common after a brain injury. Recognize apathy and take steps to treat it.
  • Understand the invisible signs – A person with a brain injury often suffers from hidden signs such as fatigue, depression, anxiety, etc., and saying that they “look fine” to you is belittling.
  • Don’t complain about having to repeat yourself – Almost everyone who suffers a brain injury will experience some memory problems. Becoming frustrated that you have to repeat yourself only emphasizes the issue.
  • Remain patient when they’re not – Irritability is a common sign of a brain injury and it can come and go without reason. If you are always pointing out their grumpiness, it doesn’t help the situation.
  • Don’t remind them how much you do for them – The person may already know how much you do for them – and feels some guilt about it – or may not understand at all (depending on the severity of their injury).

3. Educate Yourself

Become involved in their recovery during the rehabilitation process. Doing so enables you to have a clear understanding of struggles the person will face, and strategies that you can implement at home to lessen the impact of these problems.

4. Be Aware of Changes in Behavior

Check with your physician whenever you notice any behavioral changes in your loved one, or person you are caring for. Seizures can develop after a brain injury and occur several months, or even years after the injury occurred. Your physician may recommend anti-seizure medications.

5. Take Time for Yourself

It can be easy to ignore personal fatigue and frustration while you’re caring for someone with a brain injury. Taking time for yourself, calling on the help of others, joining a caregiver support group – all are ways that can assist you from becoming physically and emotionally exhausted. Above all, be kind to yourself and give yourself credit for all that you do.

Source: 5 Tips on Caring For An Individual With a Brain Injury | MVRRH

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[WEB SITE] Helping Others Understand: Post-Stroke Fatigue

[Helping Others Understand is an open-ended, intermittent series designed to support stroke survivors and family caregivers with helping friends and family better understand the nuances, complications and realistic expectations for common post-stroke conditions. If there is a specific post-stroke condition you’d like to see us address in future issues, we invite you to let us know: strokeconnection@heart.org.]


Stroke is unpredictable both in its arrival and in the consequences it leaves, but one common stroke deficit is fatigue. Some studies indicate that as many as 70 percent of survivors experience fatigue at some time following their stroke. Unlike exertional fatigue that we feel after working in the yard, post-stroke fatigue occurs from doing typical everyday tasks or sometimes from not doing anything. “It is a fatigue associated with the nervous system, which is quite difficult to understand,” said Jade Bender-Burnett, P.T., D.P.T., N.C.S., a neurological physical therapist in Falls Church, Virginia. “It’s very frustrating to the person who’s living with it because, unlike exertional fatigue, post-stroke fatigue doesn’t always resolve after you take a break, or get some rest.”

That has been Roman Nemec’s experience since surviving an ischemic stroke 11 years ago. It doesn’t seem to matter how much sleep he gets, “I walk around tired all the time, even after 9-10 hours of sleep,” he said from his home in Georgia.

This can be difficult for friends and family members to get their heads around because they have not likely experienced this kind of brain fatigue. Bender-Burnett has asked her clients who were marathoners prior to their stroke to compare the fatigue one feels following a marathon to post-stroke fatigue: “They said the fatigue you feel after damage to the brain is unlike any fatigue they’ve ever felt,” she said.

While there is no standardized scale for post-stroke fatigue, Bender-Burnett says that therapists distinguish between two types of fatigue. “Objective fatigue occurs when we can see physical, mental or cognitive changes,” she said. “With subjective fatigue we don’t see any changes, but the survivor will tell you that they’re feeling extremely weary and have no energy.”

For some this goes on for a few months after their stroke, for others, like Roman, it is persistent. Fatigue may be a side effect of medication. “Post-stroke fatigue is very individualized,” Bender-Burnett said. “One of the most frustrating parts of post-stroke fatigue is that it’s so unpredictable. Today, getting up, brushing your teeth and putting on your clothes may be fine, but tomorrow you may not be able to complete the morning routine without a rest break. That unpredictability is very frustrating for people and makes reintegration into daily life difficult.”

Post-stroke fatigue often changes over time. People report more and greater fatigue in the first six months. It’s episodic at first and seems to come out of nowhere: “They may be functioning well, and then all of a sudden they hit a wall,” she said. “It seems that as they get farther along in recovery, those hit-the-wall episodes decrease, and the lingering effect is ‘I just don’t have the energy to do all the things on my plate.’”

Life consequences span the spectrum from nuisance to career-ending. It can impact a survivor’s ability to function in unpredictable ways: As they tire, they may become clumsy or their speech may be affected. Their ability to understand, comprehend or recall may be compromised. Some people get irritable, while others experience increased emotional lability (crying or laughing with no apparent trigger). Bender-Burnett has worked with people who have made remarkable recoveries but were not able to return to work because of post-stroke fatigue.

Just as the consequences are individualized, so are the responses. If your energy is better in the morning, then take advantage of that. For mental fatigue, the most effective response is to sit quietly with low sensory stimulation, not necessarily take a nap. Some survivors may require regular and scheduled rest breaks or even a nap; that does not work for Roman: “I just live through it,” he said. “There are worse things than being tired. I feel good; I can get around; I can talk. Life is good compared to what it could be. Being tired all the time is not a big problem.”

Rhonda Hand, whose significant other, Tarvin, is a survivor, said: “In our household the fatigue issue is factored in before any event or activity and recuperation time after an event or activity. We just block off rest time like another activity; if we don’t, everything shuts down, including speech. Over the years, we have become much more proactive in scheduling appointments with anybody. There is nothing before 8 a.m. That’s when deep sleep is happening.”

Knowing your limits — and quitting before you hit them — is key to living with post-stroke fatigue. Survivors with fatigue have limited energy reserves, and if they get depleted, they take longer to replenish. “You don’t want push to the point just before you’re exhausted, you want to end on a high note, leaving some reserves,” Bender-Burnett said.

“We’re still learning about post-stroke fatigue from the healthcare perspective, and so I think it’s important that we all be willing to recognize it and have open communication about it,” Bender-Burnett said. “I urge family members and friends to come from a position of compassion and understanding rather than expectation that everything should be better, because, much like depression, others can’t always see it but, if you’re feeling it, it can be quite limiting.”

 

The Stroke Connection team knows that it can sometimes be hard for family and friends to understand how profoundly post-stroke fatigue may be impacting a survivor. We encourage you to share this article with the people in your life — and, for those pressed for time, we’ve created a quick-reference sheet  that you can print or share via email or socia

Source: Helping Others Understand: Post-Stroke Fatigue – Stroke Connection Magazine – Spring 2017

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[BLOG POST] Everything You Want To Know About Stairlifts Is Right Here  

Photo of a room with a dining table with chairs in the middle. In the corner are stairs, and a stairlift is attached to it.

Ever wondered if you can make stairs at home accessible for your elderly loved ones or other family members whose disabilities may prevent them from going up and down the stairs? Our friends over at Home Healthcare Adaptations have created a comprehensive guide that will walk you through the types of stairlifts, mechanics of how they work, who would need them, their costs, benefits, and safety features. Watch this quick video below to understand the basics of stairlifts. Text version is below the video.

What are stairlifts?

  • Stairlifts are lifting devices powered by electricity which enable people with limited mobility to travel ip and down staircases with ease.
  • They are equipped with a chair or a platform, the selection dependent upon the specific user’s needs.

How does a stairlift work?

  • A stairlift moves along a rail which is fitted to the stairs and a motor is used to move the stairlift along a track.
  • This motor is powered by a battery which charges automatically on a continual basis. It can be charged at either the top or the bottom of the stairs and will always be sufficiently charged so that it will never cut out halfway along the stairs.
  • Stairlifts are easy to operate. They are controlled by a small toggle or joystick on the armrest – simply direct this up or down to move the stairlift.
  • If you have 2 or more people using the same stairlift, it comes as standard with 2 remotes that will enable a user to summon it up/down the stairs.

Who is most likely to need a stairlift?

  • Someone with multiple sclerosis or arthritis.
  • Someone who has undergone hip replacements.
  • Someone whose mobility is affected following an operation.
  • An elderly person with notable frailty.

Types of Stairlifts

  • Straight stairlifts are the simplest of all stairlift types and can fit the majority of staircases that have a straight flight from bottom to top.
  • Curved stairlifts are used when the staircase for which it is being fitted has one or more turns.
  • Perch (or standing) stairlifts are ideal for those who find it difficult to bend their knees and sit. The seat is smaller and positioned higher than with a standard stairlift, allowing the user to perch rather than sit.
  • Outdoor lifts have similar features to indoor stairlifts, in addition to being waterproof and able to withstand extreme conditions.

How much do stairlifts cost?

  • Straight stairlifts cost in the region of €1,800 (supply and maintenance) and can be fitted within 2-3 days of being ordered.
  • Curved stairlifts are more expensive, as they are made to measure. They usually cost between €5,000 and €6,000, while manufacture and fitting could take 5-6 weeks from the initial order date.

Stairlift safety features

  • Sensors to detect potential obstructions.
  • Lockable on/off switch to deactivate the stairlift when not in use.
  • Mechanical and electrical braking systems to braking systems to bring the stairlift to a smooth, safe stop.
  • Safety belts on the seat/perch to prevent users from falling off the stairlift.
  • Swiveling footplates to bridge the gap between the stairlift and the top of the stairs.

Benefits of Stairlifts

  • Provide a safe, comfortable method of moving freely around your home.
  • Promote a substantial degree of independence.
  • No need to walk up and down stairs to fo to an upstairs bathroom or bedroom.
  • You can continue living in your current home without the need to relocate.
  • Extremely easy to use – all you need to do to operate a stairlift is move a control pad.
  • Easy to fold and unfold so as to be unobstrusive when not in use.
  • Very affordable – running costs are similar to what you’d use in boiling a kettle

Source: Home Healthcare Adaptations

Read more here.

Source: Everything You Want To Know About Stairlifts Is Right Here – Assistive Technology Blog

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[WEB SITE] Finding Strategies That Work After Brain Injury

Question

My brother had a brain injury six years ago and has been through several periods of rehabilitation to where he now jokes he could be a therapist! He can list all the strategies he is supposed to use to get somewhere on time — like his job — he just doesn’t do them or says they don’t help. Can you give me some insight here?

Answer

To begin, one has to consider whether being on time to work is meaningful to your brother. If he enjoys his job and recognizes the implications of being late, then chances of helping him figure out how to get there on time are much better.

Assuming this is the case, your brother’s dilemma is not uncommon after a brain injury. Many everyday activities, such as being somewhere on time, actually involve a number of different skills. It’s important to first figure out what skills are involved so you can choose strategies that are likely to work.

Let’s take your example of getting to work on time and list just some of the cognitive skills and steps that play a part and could be causing his problems:

 

  • Attention: What time is it, anyway? Am I on time or running late? Am I doing what I am supposed to be doing right now (or getting distracted by a TV show)?
  • Memory: What time do I have to be at work today? What needs to be done before I leave the house?
  • Initiation: Do I get started on each step of my routine in a timely manner?
  • Planning: Do I have enough time to get ready? Are my clothes ready? Have I planned enough time for transportation?
  • Problem-solving: What do I do if I’m running late? What if my transportation falls through? What are my other options? Do I have enough time to go back if I forgot something like my ID badge, lunch, or newspaper?

 

Breaking down an activity into more specific component skills can often help tease apart where the true difficulty lies. Then a strategy that promotes success (generally, one that builds on his strengths) can be developed by the person with brain injury and if needed, a significant other. If this proves too difficult, some consultation with a cognitive rehabilitationspecialist may be useful as well. And remember, any new strategy often requires a lot of practice to make it a habit, especially after brain injury.

Finally, if your brother does not seem motivated, the discussion needs to be about what is important to him. If getting to work on time is not one of his priorities, what is it that he wants to accomplish?

Click here to go to About Ask the Expert.

Source: Finding Strategies That Work After Brain Injury

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