Posts Tagged Caregivers

[BLOG POST] 9 Tips to help clear brain fog

How do I say this? I CAN’T THINK STRAIGHT THIS WEEK. Ok, I guess I came up with those words pretty easy but if I want to speak past a 6th-grade grammar level I need a thesaurus.

Many suffering with chronic illness find themselves plagued by a condition known as brain fog.

clear brain fog

You may have also heard of fibro fog in the fibromyalgia community. Same thing! At it’s very worst it can cause a disorienting effect that can leave a person not knowing where they are or where they were headed for 30-90 seconds or more. I haven’t experienced it to that extreme, yet.

My main problems are losing my train of thought mid-sentence, comprehending what I’m reading, and having trouble following conversations. Sometimes it can feel like a bunch of static in my head and I wish I could just tune in to whatever channel needs to be my focus for that moment.

There are a few little tricks I keep up my sleeves to help clear brain fog. I thought I’d share them with you.

    1. Don’t trust your brain. Even though you think of yourself as normally an intelligent person who’s really focused; just face it. For certain periods of time, possibly every day for some, you won’t be able to trust that little gray matter in your skull. Don’t stress about it or feel less of a person – just work with it. Determine that you’ll change how you do certain things so you can manage at your very best!
    2. Don’t panic – you’re not losing your mind. Some individuals get really nervous that they could be developing Alzheimer’s. The two aren’t related and the one doesn’t turn into the other. For example, with brain fog I might forget what you just told me but with Alzheimer’s I may forget who you are.
    3. Make lists! And use them! Use a planner too! I’m getting better at this all the time. For example, I developed a grocery list that is divided into sections according to the aisles in my local grocery store. This really helps me stay on track and focused. I don’t have to keep scanning through a list in the midst of store noise to be sure I grabbed it all; I just start at aisle one and I’m all set.
    4. Sleep. The problems with brain fog are multiplied when you’re tired and wore out. I understand insomnia can come with the territory of chronic illness too. Try your best to do what you can to unwind at night and talk to your dr to see what can be done to help. Insomnia is horrible and can highlight fatigue, fog, and pain – among other problems!
    5. Talk to your doctor about possibly adding some supplements to your mix. I discovered a supplement called ribose from reading a book by Dr. Teitelbaum called Fatigued to Fantastic. D-Ribose is a simple, natural sugar that your body uses in the energy molecules. It also helps process other nutrients as well, such as the B vitamins. As part of my treatment my doctor has me taking B vitamins 3x’s a day; mainly for the fatigue. However, I have noticed a drastic difference with my brain fog on days I don’t take them.
    6. Get oxygen moving in your blood! Exercise increases the flow of oxygen and blood to the brain and helps with the fog. I understand there are days we can barely shower, let alone get out for a walk. For those days, I’ve noticed sitting on my porch, or even in the house in a quiet room for a bit, and breathing deeply helps calm down my mind when it’s racing or foggy and it allows me to focus better.
    7. Cut back on the sensory overload. I grew up in a house where the tv was on almost constantly. Sad to say it’s on way too much in my own home. To top it off I have my cell phone, my Kindle, my computer, my husband, my kids and my grandson all contributing to the amount of input my brain is trying to process at any given moment. On days I’m at my foggiest I find taking some time away from all the media noise helps! I can’t turn off the people in the home, I’ve tried ;). But I can limit those other things!
    8. Uni Task. I don’t know who decided multi-tasking was the benchmark for productive women but they certainly didn’t have a chronic illness or brain fog. I’m not militant about this. Yes, I’ll do other things while I have a load of laundry in the washer but trying to do too much just adds to the already confused state of our minds. Focus on one thing at a time and don’t allow yourself to be distracted by trying to do multiple things at once.
    9. Avoid caffeine. Trust me, a Coke is usually the first thing I want to grab when I need to focus but it only means you’re going to crash later on. Also, because it’s a stimulant it can make all those jumbled thoughts floating around in there move faster-making things worse!

Source: 9 Tips to help clear brain fog

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[BLOG POST] Brain Injury Medicine – Neuro Landscape

 

Brain Injury Medicine

Individuals who sustain brain injury face a unique challenge with their health professionals. Brain injury is now widely viewed as a disease in the medical field, however patients are not yet granted the benefits and opportunities in treatment as are necessary for disease management. Increasing awareness of brain injury as a disease, and exploring the challenges of brain injury treatment will help us reevaluate our current system.

Brain Injury as a Disease

A brain injury is remarkably complex. Emerging evidence suggests that, like cancer, brain injury may actually be comprised of a number of distinct diseases that vary by the etiology of the injury, the nature of the injury, co-morbid health conditions prior to and since the injury, and factors such as gender, race, age, for example.

When the brain is injured, consequential effects often occur within immune, endocrine, and autonomic nervous systems’ functions. Persons with brain injury can become very sick, very quickly, seemingly only heralded by relatively minor early symptoms. Though we do not fully understand why this heightened period of illness occurs, it is likely a result, in some capacity, of the changes to the body’s systems’ functions.

Challenges of Brain Injury Treatment

Medical professionals working within the confines of our current system are often unable to dedicate sufficient time to a patient with brain injury in order to address the full scope of his or her injury, which includes cognitive, behavioral, communicative, and/or physical disabilities. Furthermore, these medical professionals are rarely able to stay current enough on the case to identify advisable and inadvisable medical practice patterns, thereby increasing the odds of treatment-induced complications.

Patients and their families cannot assume that medical providers are alike in their knowledge and experience. For example, the notion that patients can be best followed by practitioners in their home community is seriously flawed. Locality does not replace the prerequisite for a practitioner with expertise on brain injury. In fact, many of these less experienced practitioners are unaware of the comparative medical fragility associated with brain injury. Many poor medical decisions could have been avoided had the proper brain injury specialist been consulted.

Additional challenges can be found in the person’s inability to fully and competently participate in his or her medical care and decision-making. Cognitive, behavioral, communicative and physical disabilities following brain injury can make it difficult, if not impossible, for a person to recognize changes in his or her health, convey those changes, recognize improvements, or a lack thereof, in health following a medical treatment or intervention, accurately convey medical history or the history of present health problem(s), obtain appointments for procedures or laboratory studies, obtain prescribed medications or otherwise properly adhere to a prescribed treatment regimen. One might conclude that the attendance of an advocate or family member to medical appointments will mitigate such difficulties, and while helpful, such participation often fails to provide improved results.

Reevaluating our Current System

In my career, I have seen many downstream medical decisions result in serious and, sometimes, deadly consequences. These have always been avoidable and unnecessary, and borne out of a lack of knowledge.

A general physician cannot reasonably manage a patient with a complicated cancer, and brain injury is no different in this regard. We need to develop mechanisms that enable a patient with a brain injury all the same benefits as those allowed patients with complicated diseases such as cancer or cardiovascular disease. Simply put, there is no substitute for an individual case being followed closely by an experienced brain injury specialist.

Source: Brain Injury Medicine – Neuro Landscape

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[BLOG POST] Open Communication – The Transitional Learning Center’s Blog

Open Communication

The brain injury experience is a very complex experience.  Overnight, so many things change and so many adjustments need to made.  Throughout this experience, brain injury survivors have goals, concerns and aspirations.  Loved ones also have their own goals, concerns and aspirations which may or may not be the same as those of the survivors.  The survivors and their loved ones try their best to achieve hoped-for outcomes.  Sometimes, these differences in desired outcomes lead to conflicts.  One of the underlying reasons for these conflicts is poor communication.

Family members, injury or no injury, tend to make assumptions about each other.  In fact, we all engage in some form of “mind reading” in which we guess at what the other person is thinking.  For instance, if one person is looking at a second person prior to entering a door the first person may “mind read” and think, “The other person is looking at me because they want me to walk through the door first.”  There is no actual words spoken, just assumptions made.  This generally works fine in simple situations but there are problems when we engage in “mind reading” in place of actual, open communication for important issues.  A simple look or smile does not say “I am hoping that a month or two after discharging from therapy I can return back to working and driving” or “I am worried that my son will want to return to mountain climbing where he could fall and hurt his brain again.”

A good place to start open communication is to have a family meeting in which goals, concerns and aspirations are talked about.  The meeting should be planned in advance with all parties informed of the purpose of the meeting.  This gives each family member time to organize their thoughts about these issues.  Many survivors benefit from writing a list of topics they want to discuss at the meeting to help them avoid forgetting about a topic.  A meeting of this sort does not need to be the final word on any topic.  In fact, it is good to say from the start that everyone at the meeting may not (and perhaps are likely to not) agree with what others are saying.  Particularly at the first meeting of this sort, it is not important to make decisions regarding the future.  Instead it is more important to open the lines of communication so each person can know what the other is thinking and “mind reading” can be avoided.  Opening the lines of communication in such a formal manner may seem awkward to some but it helps ensure that an actual discussion of the goals, concerns and aspirations of each family member will actually be discussed rather than devolving into other conversations.  Once these lines of communication are opened and everyone has a chance to openly discuss their thoughts, it is much easier in the future to re-visit these topics in a fully open manner.  Open communication can ultimately allow family members to walk hand-in-hand into the future with less conflict.

Learn about brain injury treatment services at the Transitional Learning Center!  Visit us at: http://tlcrehab.org/

Source: Open Communication | The Transitional Learning Center’s Blog

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[BLOG POST] Combating Struggles with Acquired Brain Injury

The physical, neurological and emotional challenges that may arise from an acquired brain injury (ABI) are vast. Different causes and injuries create consequences that vary among individuals. Therapists need to be perceptive in order to both address struggles and provide avenues for constructive thinking.

One of the largest hurdles therapists encounter in rehabilitation with individuals who have suffered an ABI is the patient often lacks insight into their own deficits. Their injured brain signals they are fine and can successfully perform activities they used to do before injury, when in fact they may be struggling with anything from orientation and memory to executive function. This is challenging for family members and caregivers and is also is a barrier for treatment if the patient does not come to terms with these new deficits. Although insight typically improves to some degree as the patient progresses, giving the right level and amount of explanation about what has happened and future planning is helpful.

A thorough evaluation should be completed early on to identify cognitive deficits. Once strengths and deficits are identified, treatment can begin. Include tasks to promote gains in deficit areas such as memory and attention, such as deductive and/or abstract reasoning tasks, working memory tasks or word-retrieval activities. Also think about how strengths can be utilized to assist in this processIf a patient’s reading comprehension is better than auditory comprehension, printed information should be used to improve their ability to comprehend spoken information.

Combat common struggles by demonstrating compensatory strategies that aid the individual in participating in life activities. For patients experiencing memory and organization deficits, be prepared with a list of smart phone apps and functions they can use to set alerts for appointments, manage tasks, make lists, etc.

Fatigue is common in individuals recovering from a brain injury. Their brain is working “overtime” to make sense of things, and performing tasks successfully may take a great deal of conscious thought and effort. Assist patients in creating a schedule to work on their cognitive exercises and/or stay active in doing their daily activities, and include rest to help the brain recover. Once the brain begins to fatigue, there is a decrease in function. The patient will notice activities and tasks become harder, and head pain may also occur. This should signal the patient that it’s time to rest.

Lastly, there are things the brain injury survivor can focus on that will help their recovery, including:

  • Accepting their new persona
  • Allowing themselves to make mistakes
  • Striving to keep a positive attitude
  • Remembering they can continue to improve

Continued improvements may be the most important point in keeping your patient motivated. In years past, it was commonly accepted that after a window of about three years, the brain would not have any further recovery. It is now known that neuroplasticity allows for continued recovery over time with focused effort. Different parts of the brain can establish neuropathways and take over functions lost through damage to other parts of the brain.

Area Manager Jean Herauf, SLP has 30+ years’ experience, more than 20 of them with RehabVisions. Jean is active in her clinic’s local brain injury support group and has attended numerous courses over the years, and read a good deal on ABI.

Source: Combating Struggles with Acquired Brain Injury – RehabVisions

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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] 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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