Posts Tagged fatigue

[VIDEO] Managing Fatigue After A Brain Injury – YouTube

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[BLOG POST] Five Reasons Fatigue Isn’t Like Normal Tiredness (Proving Most People Don’t Get It)

When you’re dealing with a chronic illness, there are a lot of things non-sick people say that are annoying. Things such as, “Aren’t you better yet?” Of course not. This is a chronic illness, not a you-have-it-for-a-week-and-then-it’s-over-with illness. You don’t say that, though. You smile and say, “unfortunately not.” Or friends and family might make a comment about how you’ve taken a lot of time off work lately, as if it was your life plan to become disabled. Or they might mention that you don’t go out much anymore…because clearly you prefer to stay in laid up in bed.

But the most jerkish thing people do is act like the fatigue you’re dealing with—the bone wearying, debilitating, sometimes disabling fatigue—is equivalent to how they felt when they ran a 10k that one time. “Just get more sleep,” they’ll tell you. Or, “You need to push through it. We all get tired.” If you weren’t so fatigued you’d punch the guy right in the face. But you are, so you smile and nod.

Even worse than thoughtless friends spouting this nonsense, is when you get the same thing from doctors. You’d think someone medically trained would be taught the difference between fatigue and normal tiredness, but they’re not. There aren’t even terms to differentiate the two, really. So for medical professionals and non-medical professionals alike, I’ve created a list of the top five reasons that fatigue and normal tiredness should not even be considered in the same sentence. (Other than that one, of course.) Feel free to share it with anyone who doesn’t get it.

5. Sleeping “cures” tiredness; it’s only mildly helpful for fatigue.

When you have chronic fatigue, the number one piece of advice you get from well-meaning non-sick people is to get more sleep. It makes sense. They reflect on their own life and think, “You know, when I feel tired, if I get a good night’s sleep I feel better. Sally should try that.” But that doesn’t work for Sally, and you know why? Because Sally has fucking lupus or Ehlers Danlos Syndrome or Rheumatoid Arthritis. Feeling tiredness in your muscles because you ran some extra errands today is resolved by getting a good eight hours of sleep, but do you know what is not cured by sleeping? Sjogren’s Syndrome. Multiple Sclerosis. Umm, cancer.

While it’s true that getting plenty of rest is good self-care that can reduce flares, it’s not a cure-all, and to suggest that it is is belittling. Especially considering that many people with chronic fatigue are often already sleeping much of the day. Some chronic illnesses sufferers can sleep for sixteen or twenty hours a day and still feel fatigued. Or even if they’re sleeping a normal eight hours, they may feel their worst in the morning, just when you’d predict they’d feel best if their issue was lack of sleep. And all of this ignores the fact that for some people…

4. Fatigue can actually keep you awake.

Sounds stupid, doesn’t it? After working hard all day, most people can lay their head on their pillow and be out within five minutes. Not the case with fatigue. I, myself, have a condition called lupus. It’s an autoimmune disorder, which means that my immune system literally attacks my body rather than outside invaders. It’s sort of like friendly fire in a war. My immune cells are like, “Sorry kidney! Didn’t mean to murder you when I was trying to take out that cold virus. My bad.”

So the fatigue I get stems from the fact that my body is working really hard against the onslaught from…my own body. This sort of fatigue can be so overwhelming that it’s uncomfortable. It’s almost like the tiredness equivalent of pain. It simply doesn’t feel the same as what you experience after doing a lot of cardio. It feels more like your entire life force has been sucked out of your body. It’s disconcerting.

You know that indescribable symptom you get when you have the flu? Not the runny nose or congestion. The feeling that you’re just “sick.” It’s like that feeling amplified. And that feeling is uncomfortable even if there’s not actual pain associated with it (which, with most chronic illnesses, there is anyway). This horrible feeling of fatigue can overcome you and actually make it difficult to fall asleep.

If this seems stupid and horribly counterproductive, you’re right! It feels that way to the sick person too. There’s nothing worse than being horribly fatigued, and yet not being able to fall asleep. That’s why a person with chronic fatigue will recoil at your advice to get more sleep. They’re trying and reminding them of their failure only makes them want to cut you.

3. Pushing through tiredness means you get extra work done; pushing through fatigue means you’re out of commission for a week.

This is probably the biggest pet peeve of the chronically ill: the suggestion that they should just suck it up and push through it. That is actually the worst single piece of advice you could give a chronically ill person, and this is why. People possessing average energy stores and bodies that aren’t falling apart can go for a day or week or even month where they’re not getting enough sleep. Sure they’ll feel crappy, but once they take a weekend to really rest, their body will be back to normal. For a healthy person, it might be totally reasonable to push through some tiredness to get extra work done.

Not so for chronically ill people. Being chronically ill is sort of like starting every day on three hours of sleep, regardless of how much sleep you’ve actually gotten. Strike that. It’s like starting the day on three hours of sleep plus you have the flu. A flu that might never go away or get better. (I’m a bundle of laughs at parties, let me tell you.) If a chronically ill person tries to “push through” their fatigue, they could actually make themselves substantively sicker. The immune system that was just sort of nibbling on their kidneys will now go on full attack, or the moderate pain they had in their joints will be turned up to eleven. And, as you can imagine, that increase of symptoms doesn’t just last during the period that they’re “pushing through” their fatigue. It can last for weeks because now they’ve actually made themselves sicker. Telling a chronically ill person to just suck it up and push through the fatigue is like telling a lung cancer patient to just have another five cigarettes. Go ahead! Suck that smoke through your throat hole. It won’t hurt you.

2. Tiredness is to fatigue as a pimple is to face herpes.

Hopefully this article has already made this clear, but fatigue is far far worse than being tired. Have you ever been so tired after a hard day’s work that you literally couldn’t talk? I haven’t, and I’ve worked very physical jobs. I used to set up stages and sound systems for concerts, lifting super heavy stuff in the heat for sixteen hours at a time. I’d be sore and I’d want to get in the hot tub at the end of the day, but I could always talk. Not so with lupus. Sometimes I am literally so fatigued that it is too much exertion to open my mouth and talk. If you knew me, you’d know what a personal tragedy this is. I am a talker. There is nothing I like more than shooting the shit. My husband wooed me by staying up until noon talking to me all night. On, like, fifteen occasions. That’s how much I love talking.

Recently I created a fatigue scale after I realized that doctors don’t have one. It is as follows:

Tiredness for me maxes out at around a 4. No matter how tired I am, I could always make myself run errands if I had to. When I’m fatigued, though, it’s not just that running errands is a bad idea (which it is). Sometimes I literally don’t have the strength, coordination, or mental capacity to do it. So for any non-sick person who’s never experienced fatigue beyond a four, your advice, while well meaning, is useless because you literally don’t get it.

1. Fatigue is a daily struggle; tiredness is a temporary inconvenience.

Finally, one of the worst things about struggling with chronic fatigue is that you don’t know if it’ll ever end. Most doctors don’t take complaints of fatigue seriously, and even when they do, there’s not much they can do for it anyway. We don’t have an opioid-equivalent fatigue reliever. We don’t even have a tylenol equivalent. When a non-sick person feels tired, they know that if they get a good night’s rest or take a vacation, they’ll feel better. There is no vacation from fatigue. You could fly to Aruba and you’d be just as debilitated.

That’s why the douchy “just get a good night’s sleep” comments sting so badly. If you had even half an understanding of what it’s like to live with this sort of fatigue, there’s no way you’d suggest that. Do you really think someone is this debilitated and they hadn’t even considered, umm, I don’t know, sleeping more. Of course they’ve tried sleeping more! They’re sick, not a moron.

So please. If you’re someone who’s lucky enough not to struggle with chronic fatigue, don’t be a douche. It’s really easy. Just treat the person you’re talking to with respect and assume they have as much common sense as you do.

 

via Five Reasons Fatigue Isn’t Like Normal Tiredness (Proving Most People Don’t Get It) — Miss•Treated

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[BLOG POST] Perfectly Imperfect For The Holidays – TBI Survivor Tips and Observations

By Bill Herrin

Living with a TBI is a reality all its own, and as I reiterate in many posts – it’s different for everyone, including how people around you act, react, overact, act up, or don’t react to you at all. With the Holidays now “officially” here, and Thanksgiving already passed – it’s the time of year that many people dread, and for many good reasons.

The way some people celebrate seems so perfectly “normal” from the outside – the whole family gets together, they have dinner together, or they open gifts, or they have a wonderful party…and that can happen, but from the outside it seems much more “perfect” than anything that we experience in our life. Why is that? Well, living with TBI overshadows a lot of our being, and it’s no wonder…it’s changed who we are in some ways.

It can change us immensely and visibly, or it can change us in a less obvious way – and sometimes, people don’t see what it’s done to a survivor at all. Either scenario can be very frustrating for the survivor of TBI, stroke, concussion, mild TBI, acquired brain injuries, etc.

Making The Holidays More Positive

On one hand, getting together with family and friends during the Holidays after TBI can be an annual test of wills due to lack of patience or empathy for one another, misread intentions, disagreements, or just a lack of understanding for each other.

On the other hand, all families, no matter how perfect things appear on the surface, can have similar issues. Yes, some actual families do get along great, and the Holidays are a positive experience for them – but don’t be dismayed, because (at the end of the day) we’re all perfectly imperfect people. Brain injury or no brain injury!

The point being made is plain and simple – although TBI survivors bear a load of issues in situations with people around, many times they still are left to shoulder the weight of inconsideration, improper actions, comments and more. Being the bigger person is hard to do (especially under the circumstances) but it’s worth the effort!

A Little Empathy Goes A Long Way…

Whether you’re reading this as a TBI Survivor, a caregiver, or as a friend or family member – it’s important to always work toward being empathetic toward each other.

As a survivor, knowing that everyone hasn’t experienced what you have been through is a good rule of thumb for overlooking things that could easily get under your skin. As a friend or family member, remember that you have no clue what it’s like to have a TBI is a good starting point, and overlooking things (that are said) can keep things on an even keel.

The same goes for a TBI survivor that fields negative comments or verbal jabs…working to focus on being together is the point! Enjoying each other’s company is a rarity and should be treated that way – as perfectly imperfect as any of us are.

Some Suggestions

Here are some suggestions to help make the Holidays less frustrating, and hopefully a better experience for a TBI Survivor (and their friends & family):

• Avoid alcoholic drinks (especially when using medications)

• Noise-canceling headphones or earplugs to bring noise levels down to a manageable level

• Bring someone with you that understands your needs when you go shopping, to a party, or for dinner at home (or elsewhere) with others

• Be careful to avoid sensory overload, and act accordingly at an event if necessary (retreat for a bit, leave early if needed, etc.)

• Be rested before any Holiday party, gathering, parade, etc. – if you know that a Holiday parade or program is going to be overwhelming, you may be better off skipping it altogether

• Do your Holiday shopping (along with a friend or family member, etc.) when crowds are at a minimum

• If blinking or bright holiday lights bother you, plan (in advance) to have sunglasses handy, or even a place that you can retreat to if necessary

• Unless you’re certain that a fireworks display is ok to attend, it may be best to skip it (New Year’s Eve, etc.)

• Movies, concerts, outdoor events with lots of lights can all cause issues for Survivors…base your decisions to go on previous experience when possible. If not, do you best to plan in advance on how you (with a friend or loved one) will have an action plan to deal with it

• Try to avoid situations that may overstimulate your senses. Noise, crowds, lights, etc. can trigger anxieties (fear, panic, etc.) and even fatigue – when your brain is overloaded by too many things going on at once

• Another good thing to keep in mind is to ask for assistance if you need it – taking on too much by yourself is asking for trouble, and if you have someone willing and able to help you, let them!

In closing…

In closing, if you’re a TBI Survivor – try to pace yourself during the holidays when there’s so much going on, and not get too overloaded with things to do, places to go, and people to see. As a friend, family member, or caregiver of a person with TBI – keep this in mind as well!

Helping advocate for a TBI Survivor is very important, and they will do much better with you as their “overload avoidance” point person (or team). Happy Holidays to all, and we’ll see you in 2020.

 

via Perfectly Imperfect For The Holidays – TBI Survivor Tips and Observations

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[WEB SITE] TBI and PTSD: Navigating the Perfect Storm – BrainLine

Marilyn Lash, MSW, Brain Injury Journey magazine
TBI and PTSD: Navigating the Perfect Storm

So often people talk about the effects of traumatic brain injury or the consequences of post-traumatic stress disorder as separate conditions — which they are. But for the person who is living with the dual diagnosis of TBI and PTSD, it can be hard to separate them.

Just as meteorologists predict “the perfect storm” when unusual and unprecedented conditions move in to create catastrophic atmospheric events, so can the combination of PTSD and TBI be overpowering and destructive for all in its path. The person with TBI and PTSD is living in a state unlike anything previously experienced. For the family, home is no longer the safe haven but an unfamiliar front with unpredictable and sometimes frightening currents and events.

While awareness of PTSD has greatly increased with recently returning service members and veterans, it is not new and nor limited to combat. Anyone — children, adolescents, adults, elderly — who is exposed to a life-threatening trauma can develop PTSD. Car crashes, shootings, floods, fires, assaults, or kidnapping can happen to anyone anywhere. But the rate of PTSD after brain injury is much higher in veterans than civilians due to their multiple and prolonged exposure to combat. According to O’Connor and Drebing, it is estimated that up to 35% of returning veterans with mild brain injury also have PTSD.

What’s unique about PTSD?

Symptoms of PTSD include:

  • Unwanted and repeated memories of the life-threatening event
  • Flashbacks where the event is relived and person temporarily loses touch with reality
  • Avoidance of people, places, sights, or sounds that are reminders
  • Feelings of detachment from people, even family, and emotional numbness
  • Shame about what happened and was done
  • Survivor guilt with loss of friends or comrades
  • Hypervigilance or constant alertness for threats.

Individuals with PTSD are at increased risk for depression, physical injuries, substance abuse, and sleep problems, which in turn can affect thoughts and actions. These risk factors also occur with brain injury.

PTSD is a mental disorder, but the associated stress can cause physical damage. TBI is a neurological disorder caused by trauma to the brain. It can cause a wide range of impairments and changes in physical abilities, thinking and learning, vision, hearing, smell, taste, social skills, behaviors, and communication. The brain is so complex, the possible effects of a traumatic injury are extensive and different for each person.

When PTSD and TBI coexist, it’s often difficult to sort out what’s going on. Changes in cognition such as memory and concentration, depression, anxiety, insomnia, and fatigue are common with both diagnoses. One basically feeds and reinforces the other, so it’s a complicated mix — it’s the perfect storm. It may help to consider and compare changes commonly seen with TBI and PTSD.

Memory

TBI: A period of amnesia for what went on just before (retrograde amnesia) or after (anterograde amnesia) the injury occurred is common. The length of time (minutes, hours, days, or weeks) of amnesia is an indicator of the severity of the brain injury. For example, the person may have no memory of what happened just before or after the car crash or IED explosion.

PTSD: In contrast, the person with PTSD is plagued and often haunted by unwanted and continuing intrusive thoughts and memories of what happened. The memories keep coming at any time of day or night in such excruciating detail that the person relives the trauma over and over again.

Sleep

TBI: Sleep disorders are very common after brain injury. Whether it is trouble falling asleep, staying asleep, or waking early, normal sleep patterns are disrupted, making it hard to get the restorative rest of sleep so badly needed.

PTSD: The mental state of hypervigilance interferes with slowing the body and mind down for sleep. Nightmares are so common with PTSD that many individuals dread going to bed and spend long nights watching TV or lying on the couch to avoid the night’s terrors. Waking up with night sweats so drenching that sheets and clothing are soaked. Flashbacks so powerful that bed partners have been struck or strangled while sleep battles waged.

Isolation

TBI: Many survivors of TBI recall the early support and visits of friends, relatives, and coworkers who gradually visited or called less often over time. Loss of friends and coworkers leads to social isolation, one of the most common long-term consequences of TBI.

PTSD: The isolation with PTSD is different as it is self-imposed. For many it is simply too hard to interact with people. The feeling of exposure outside the safe confines of the house is simply too great. The person may avoid leaving the house as a way of containing stimuli and limiting exposure to possible triggers of memories. As a result, the individual’s world becomes smaller and smaller.

Emotions

TBI: When the areas of the brain that control emotions are damaged, the survivor of a TBI may have what is called “emotional lability.” This means that emotions are unpredictable and swing from one extreme to the other. The person may unexpectedly burst into tears or laughter for no apparent reason. This can give the mistaken impression that the person is mentally ill or unstable.

PTSD: Emotional numbness and deadened feelings are a major symptom of PTSD. It’s hard for the person to feel emotions or to find any joy in life. This emotional shutdown creates distance and conflicts with spouses, partners and children. It is a major cause of loss of intimacy with spouses.

Fatigue

TBI: Cognitive fatigue is a hallmark of brain injury. Thinking and learning are simply harder. This cognitive fatigue feels “like hitting the wall,” and everything becomes more challenging. Building rest periods or naps into a daily routine helps prevent cognitive fatigue and restore alertness.

PTSD: The cascading effects of PTSD symptoms make it so difficult to get a decent night’s sleep that fatigue often becomes a constant companion spilling over into many areas. The fatigue is physical, cognitive, and emotional. Feeling wrung out, tempers shorten, frustration mounts, concentration lessens, and behaviors escalate.

Depression

TBI: Depression is the most common psychiatric diagnosis after brain injury; the rate is close to 50%. Depression can affect every aspect of life. While people with more severe brain injuries have higher rates of depression, those with mild brain injuries have higher rates of depression than persons without brain injuries.

PTSD: Depression is the second most common diagnosis after PTSD in OEF and OIF veterans. It is very treatable with mental health therapy and/or medication, but veterans in particular often avoid or delay treatment due to the stigma of mental health care.

Anxiety

TBI: Rather than appearing anxious, the person acts as if nothing matters. Passive behavior can look like laziness or “doing nothing all day,” but in fact it is an initiation problem, not an attitude. Brain injury can affect the ability to initiate or start an activity; the person needs cues, prompts, and structure to get started.

PTSD: Anxiety can rise to such levels that the person cannot contain it and becomes overwhelmed by feelings of panic and stress. It may be prompted by a specific event, such as being left alone, or it can occur for no apparent reason, but the enveloping wave of anxiety makes it difficult to think, reason or act clearly.

Talking about the Trauma

TBI: The person may retell an experience repetitively in excruciating detail to anyone who will listen. Such repetition may be symptomatic of a cognitive communication disorder, but it may also be due to a memory impairment. Events and stories are repeated endlessly to the frustration and exasperation of caregivers, friends, and families who have heard it all before.

PTSD: Avoidance and reluctance to talk about the trauma of what was seen and done is a classic symptom of PTSD, especially among combat veterans.

Anger

TBI: Damage to the frontal lobes of the brain can cause more volatile behavior. The person may be more irritable and anger more easily, especially when overloaded or frustrated. Arguments can escalate quickly, and attempts to reason or calm the person are often not effective.

PTSD: Domestic violence is a pattern of controlling abusive behavior. PTSD does not cause domestic violence, but it can increase physical aggression against partners. Weapons or guns in the home increase the risks for family members. Any spouse or partner who feels fearful or threatened should have an emergency safety plan for protection.

Substance Abuse

TBI: The effects of alcohol are magnified after a brain injury. Drinking alcohol increases the risks of seizures, slows reactions, affects cognition, alters judgment, interacts with medications, and increases the risk for another brain injury. The only safe amount of alcohol after a brain injury is none.

PTSD: Using alcohol and drugs to self-medicate is dangerous. Military veterans drink more heavily and binge drink more often than civilian peers. Alcohol and drugs are being used often by veterans to cope with and dull symptoms of PTSD and depression, but in fact create further problems with memory, thinking, and behavior.

Suicide

TBI: Suicide is unusual in civilians with TBI.

PTSD: Rates of suicide have risen among veterans of OEF and OIF. Contributing factors include difficult and dangerous nature of operations; long deployments and multiple redeployments; combat exposure; and diagnoses of traumatic brain injury, chronic pain, post-traumatic stress disorder, and depression; poor continuity of mental health care; and strain on marital and family relationships. Veterans use guns to commit suicide more frequently than civilians.

Summary

There is no easy “either/or” when it comes to describing the impact of TBI and PTSD. While each diagnosis has distinguishing characteristics, there is an enormous overlap and interplay among the symptoms. Navigating this “perfect storm” is challenging for the survivors, the family, the caregivers, and the treatment team. By pursuing the quest for effective treatment by experienced clinicians, gathering accurate information, and enlisting the support of peers and family, it is possible to chart a course through the troubled waters to a safe haven.

References:

O’Connor, M. & Drebing, C. (2011). Veterans and Brain Injury. In Living Life Fully after Brain Injury: A workbook for survivors, families and caregivers, Eds. Fraser, Johnson & Bell. Youngsville, NC: Lash & Associates Publishing/Training, Inc.

Ehde, D. & Fann, J. (2011). Managing Depression, Anxiety, and Emotional Challenges. In Living Life Fully after Brain Injury: A workbook for survivors, families and caregivers, Eds. Fraser, Johnson & Bell. Youngsville, NC: Lash & Associates Publishing/Training, Inc.

Posted on BrainLine March 7, 2013. Reviewed July 26, 2018.

 

via TBI and PTSD: Navigating the Perfect Storm | BrainLine

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[Abstract] Poststroke Fatigue Is Related to Motor and Cognitive Performance

Abstract

Background and Purpose: Poststroke fatigue (PSF) is a common debilitating and persistent symptom after stroke. The relationship between PSF and motor and cognitive function remains inconclusive partly due to lack of control for effects of depression and use of insensitive measures. We examined the relationship between PSF and motor and cognitive performance using a comprehensive set of behavioral measures and excluding individuals with depression.

Methods: Fifty-three individuals poststroke (16 female) were included (median age: 63 years, median months poststroke: 20 months). Poststroke fatigue was quantified using the Fatigue Severity Scale (FSS) and cognitive performance was measured with the Montreal Cognitive Assessment, simple and choice reaction time (SRT and CRT) tasks. Lower extremity motor performance included Fugl-Meyer Motor Assessment, 5 times sit-to-stand test (5 × STS), Berg Balance Scale, Functional Ambulation Category, and gait speed. Upper extremity motor performance was indexed with Fugl-Meyer, grip strength, and Box and Block test. Spearman correlation and stepwise linear regression analyses were performed to examine relationships.

Results: Two motor performance measures, Berg Balance Scale and Functional Ambulation Category, were significantly correlated with FSS (ρ = −0.31 and −0.27, respectively) while all cognitive measures were significantly correlated with FSS (ρ = −0.28 for Montreal Cognitive Assessment, 0.29 for SRT, and 0.29 for CRT). Regression analysis showed that Berg Balance Scale was the only significant determinant for FSS (R2 = 0.11).

Discussion and Conclusions: Functional gait, balance, and cognitive performance are associated with PSF. Fatigue should be considered when planning and delivering interventions for individuals with stroke. Future studies are needed to explore the potential efficacy of balance and cognitive training in PSF management.

Video Abstract available for more insights from the authors (see Video, Supplemental Digital Content 1, available at: http://links.lww.com/JNPT/A287).

 

via Poststroke Fatigue Is Related to Motor and Cognitive Perform… : Journal of Neurologic Physical Therapy

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[BLOG POST] 10 Things My Doctor Didn’t Tell Me About Traumatic Brain Injury Recovery

10 Things My Doctor Didn’t Tell Me About Traumatic Brain Injury Recovery 

After my traumatic brain injury (TBI), a trauma doctor, a neurologist, and a brain surgeon watched over me while I was in the ICU and trauma wing of the hospital. I am extremely grateful for their help during that fragile and scary experience. However, when I left the hospital, they largely left me in the dark regarding traumatic brain injury recovery.

With help from others (mostly my mom) I was able to connect with resources to help me face the challenges I was having. Lo and behold my challenges were very common for TBI survivors. I had no idea that other people were facing the same thing.

I wish my doctors would have prepped me better for what life is like after a TBI. If you are new to the journey of at TBI survivor (or still trying to figure things out), here are 10 things I wish the doctors would have told me about traumatic brain injury recovery before I left the hospital.

1. No Two TBI’s Are the Same

Even when people have similar challenges as a result of their injury, the speed of a recovery, how much a person recovers (50%, 70%, or 90%), which medication can help resolve symptoms (if it works at all), and many other factors vary widely from person to person. You can’t see a person who recovered 100% and say “that will be me”. You also can’t see someone who faces significant challenges after a long period of time and think that you will not make any improvement.

2. There Are Groups with Resources to Help TBI Survivors and Caregivers

Lots of them. In the US, the Brain Injury Association of America is a great resource with branches in many states. The branch in California put me in touch with a doctor that really helped me. Another good resource are hospitals. They often host support groups for TBI survivors and their families. If not, they will be aware of the groups that do meet in your area.

Please take advantage of these groups! Everything changes so much for everyone involved, especially the relationships between them. The support groups give you a place to vent your frustrations and get support from other people walking the TBI road.

For some help with exploring the new relationships, I’ve written two articles, one for survivors, and one for family & friends that highlight some of the big changes and give ideas for addressing them.

3. There Are Some Very Common Deficits after a TBI

Since a TBI affects your brain, it can ripple into every part of your life. Some of it also depends on the part of the brain that is affected. Nevertheless, here are some common ways that at TBI shows up:

  • Memory problems, especially short term memory
  • Bad temper/mood swings
  • Balance
  • Visual processing
  • Motor control
  • Depression
  • Anxiety

If you are experiencing any (or several of) these effects after your TBI, know that it’s completely normal for TBI survivors. If you have any doubt about that, go to a TBI support group. You WILL find survivors there who will offer you encouragement because they dealt (or are dealing) with the same thing.

4. There is No Time Threshold for Recovery

The medical opinion used to say that said your recovery will happen within two years. It also said that whatever abilities haven’t returned by then will never come back. Some doctors who don’t specialize in traumatic brain injury recovery, continue perpetuating that myth. Over the last several years, doctors have found that our brains are capable of learning indefinitely after a brain injury.

I can tell you from my own experience that this seems to be true. My accident was nearly 6 years ago. Although my recovery was the fastest in the first two years, I still feel and observe occasional improvements in different things. Another example is of a woman I met recently at TBI support who is starting to learn to walk again. Her injury happened 13 years ago and has been confined to a wheelchair since then. It’s a long road. Don’t give up. Keep working at it.

5. Spend Some Time Investigating Alternative Approaches to Dealing with Your Symptoms

Medication did provide the biggest breakthrough to controlling my temper after my injury. However, I wanted to explore additional options to cope with it. I found exercising to be very helpful. Mindfulness meditation also provided some help. I still use both of these strategies on a regular basis. I haven’t used it myself, but some people in support groups mention that aromatherapy helps them. Explore the different options and listen to your mind and body to see what works best for you.

6. BEWARE of Overstimulation

Yes, I put beware in all caps. This is a big deal. I can’t believe that no one mentioned this to me when I left the hospital after my injury. Many TBI challenges are made worse once your brain is maxed out. An injured brain’s tolerance for stimulation is much lower than a brain that is not injured. Remember any outside input is stimulation.

For me, by biggest challenges were on my phone. Too much social media, YouTube, and too many games. I also watched to much TV. The stimulation from those activities accelerated me reaching my threshold. Once I maxed out, I became more irritable, had a harder time focusing on important tasks, and had a harder time remembering stuff. Give your brain the down time it needs to recover. Over time you will likely be able to tolerate more outside stimuli. But at the beginning, take it easy.

7. Balance Pushing Yourself and Allowing Down Time

I firmly believe that getting back to work quickly helped me recover as much as I did. However, in retrospect, I might have done it differently. For the first 6 months I didn’t know I needed to beware of overstimulation, so I would work like I was operating at 100%. But by 1pm everyday, I was maxed out, irritable, and extremely angry. Some down time during the work day, or taking on fewer projects would have helped me avoid that anger. Listen to your brain, your body, and those closest to you. Push yourself as much as you can, but back-off when necessary.

8. Physical Fatigue

Rebuilding a brain must take a lot of energy, because it can leave you very tired. During the first few weeks after my injury, I slept for 12-16 hours a day. I needed 10 hours of sleep per night until about 3 months after my injury. It’s normal, and it’s giving your brain the time it needs to heal itself.

9. You Will Be Living with an Invisible Injury

It’s quite likely that you have some physical injuries associated with whatever caused your TBI. Most of them will heal 6-12 weeks after your accident. Once the casts, splints, and braces are removed, people will stop asking what happened and assume that you are doing well. It’s hard to blame them, because there aren’t any visual cues telling them something is wrong. Any of us might do the same thing.

Of course, we know that we have an injury and we are healing. Since our injury is invisible to others, there will be times when we seem “off”. Maybe it’s a word that we can’t seem to find, or we are unusually forgetful or irritable. People will make a judgment, because they don’t have the whole picture. It’s tough to be on the receiving end of those judgments.

10. Accepting the new normal

After a TBI, we can’t hit an undo button. This is who we are now. I spent a lot of time worrying at the beginning of my TBI journey because I didn’t want to accept this. Once I accepted what was, it made it easier to look at what was in my control and start working with that. My post-TBI life became a re-start opportunity. Reframing the situation didn’t make my problems go away, but it did make it easier to face them.

Bonus: Give Yourself Time to Grieve

I nearly forgot to include this. The transition from the “pre-TBI you” to the “new-TBI you” is very real, and it’s a lot like mourning your own death. Sounds odd, I admit. However there is a real loss that happens after a TBI. Some of what we might experience includes the loss of cognitive function, the loss of your old personality, of your memories, the loss of physical abilities, the loss of relationships, the loss of employment, to name a few.

Note to the wives, mothers, girlfriends, etc of men who have experienced a TBI. Grieving does not equal crying. Crying can be part of the grieving process, but it doesn’t have to be. There are lots of ways to grieve. If your man grieves one way, and you grieve another, that’s perfectly normal. What’s important is that you support each other in the process, so you can prepare for the journey that is to come.

Note to men: Guys, we’re not always great about feelings. We’re tough, want to be independent, and have a hard time admitting when something is wrong with us. But this grieving process is important. It helps you process the changes that have happened, face what is, and prepare for the new journey into the future. And I am not telling you to cry. Crying might be part of your grieving (it was for me), but it doesn’t have to be. Find what works for you. If you’ve had a TBI, take the time to grieve what’s happened. It will do worlds of good to help you through the recovery process.

The grieving process also applies to those around us: spouses, children, parents, friends, and employers. You can check out this great article from Brainline about about the grieving process after at TBI.

Traumatic brain injury recovery is HARD, and it takes more grit that I thought I had. If someone had shared this information with me at the beginning, it would have really helped me regroup sooner, work smarter, and be more patient with myself.

Is there anything else you would have included on this list? Leave it in the comments below.

If you found this guide useful you can sign up here to get get ideas and support to help with your recovery from TBI. Starting tomorrow, you will receive my 4 part email series where I cover several techniques to help you (or your loved one) with the TBI recovery journey.

 

via Traumatic Brain Injury Recovery | 10 Things My Doctor Didn’t Tell Me

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[Quotation] I Feel Like I’m Already Tired Tomorrow

Relationships Quotes Top 337 Relationship Quotes And Sayings 120

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[WEB SITE] Hidden signs of depression: How to spot them and what to do

Recognizing the hidden signs of depression

 

Some people with depression may try to hide the signs from others, or they may not even realize that they have depression. Although the typical symptoms of depression, such as sadness or hopelessness, can be easy to recognize, there are symptoms that may be less obvious.

In this article, we discuss some of the possible hidden signs of depression. However, it is important to note that some of these signs can also indicate other medical issues.

We also cover what healthcare professionals believe to be common causes of depression, what a person should do if they think they or someone else has depression, and some sources of help for people with depression.

 

Appetite and weight changes

A man eating at his desk. A hidden sign of depression can include appetite and weight changes.

Hidden signs of depression can include appetite and weight changes.

These changes in food intake can cause a person to start gaining or losing weight.

Dramatic weight changes can also exacerbate depression, as they can affect a person’s self-esteem.

There may also be physiological factors at play. For example, there is a link between carrying excess fat and increased inflammation in the body. This, in turn, may play a role in the development or increased severity of depressive symptoms.

 

Changes in sleep habits

There is a strong link between mood and sleep. A lack of sleep can contribute to depression, and depression can make it more difficult to sleep.

According to the National Sleep Foundation, people with insomnia are 10 times more likely to have depression than those without the condition.

Sleeping too much can also be a sign that a person may have depression.

 

Alcohol or drug use

Some people with mood disorders may use alcohol or drugs to cope with their feelings of sadness, loneliness, or hopelessness.

The Anxiety and Depression Association of America (ADAA) report that in the United States, around 1 in 5 people with anxiety or a mood disorder such as depression also have an alcohol or substance use disorder.

Conversely, the same number of those with an alcohol or substance use disorder also have a mood disorder

Fatigue

Feeling excessively tired is a very common symptom of depression. Some research suggests that over 90% of people with depression experience fatigue.

Although everyone feels tired from time to time, people who have severe or persistent tiredness — especially if it accompanies other symptoms — may have hidden depression.

 

Forced happiness

Sometimes, people refer to hidden depression as “smiling depression.” This is because people who hide their symptoms may put on a happy face when in the company of others.

However, it can be difficult to keep up this forced happiness, so the mask may slip and a person may show signs of sadness, hopelessness, or loneliness.

 

Less optimistic than others

woman looking around in an office.

Studies suggest that people with depression may have more pessimistic tendencies.

People with depression may also be more pessimistic. Studies suggest that those with major depressive disorder often have a more negative view of the future.

Being more realistic or pessimistic than others may be one sign of depression, especially if the person has other possible symptoms of depression.

 

Loss of concentration

When a person trails off during conversations or loses their train of thought, it can indicate issues with memory and concentration, which is a common symptom of depression.

2014 study suggests that these difficulties with concentration and focus can worsen the social impact of depression by making work life and personal relationships more challenging.

 

Disinterest in hobbies

The National Institute of Mental Health list a “loss of interest or pleasure in hobbies and activities” as one of the telltale symptoms of depression.

Disinterest in activities that a person used to enjoy can be one of the first signs that other people notice when their loved one has depression.

 

Physical pains and health disorders

Depression is a mental health condition, but it can also have physical consequences. In addition to weight changes and fatigue, other physical symptoms of hidden depression to look out for include:

  • backache
  • chronic pain conditions
  • digestive problems
  • headache

Research also indicates that those with major depression are more likely than those without the condition to experience:

 

Being angry or irritable

Many people do not associate anger and irritability with depression, but these mood changes are not unusual among those with the condition.

Instead of appearing sad, some people with hidden depression may display irritability and overt or suppressed anger.

 

Low sex drive

According to Dr. Jennifer Payne, director of the Women’s Mood Disorders Center at Johns Hopkins Medicine in Baltimore, MD, some health professionals consider changes in sex drive a key indicator for diagnosing episodes of major depression.

There are several reasons that a person’s libido might decrease when they have depression, including:

  • loss of interest in pleasurable activities such as sex
  • fatigue and low energy levels
  • low self-esteem

 

Common causes of depression

Scientists do not yet know the exact cause of depression. However, many experts think that several factors play a role in its onset, including:

  • Genetics: Depression can run in families. Having a close relative with the condition can raise a person’s risk for developing it themselves.
  • Biological and chemical differences: Physical changes or chemical imbalances in the brain may contribute to the development of depression.
  • Hormones: Hormonal changes or imbalances in the body may cause or trigger depression. For example, many women experience postpartum depression after giving birth.
  • Trauma or stress: Periods of high stress, traumatic events, or major life changes can trigger an episode of depression in some people.
  • Personality traits: Having low self-esteem or being pessimistic, for example, may increase the risk of depression.
  • Other illnesses: Having another mental or physical health condition or taking certain medications can increase the risk of depression.

 

What to do if you think you have hidden depression

ladies socialising over food.

Spending time with others can help treat depression.

Other steps to treat depression might include:

  • reducing stress, such as through meditation, deep breathing exercises, or yoga
  • improving self-esteem through positive self-affirmations
  • socializing with others (though this can be challenging with depression)
  • engaging in activities that the person used to enjoy or attempting to identify new activities that they may be interested in
  • exercising regularly
  • eating a balanced diet
  • asking family or friends for support
  • joining a support group

 

What to do if a loved one has hidden depression

If a loved one appears to have signs of hidden depression, try to talk to them about their symptoms and offer nonjudgmental support and advice.

This can include:

  • encouraging them to seek treatment
  • offering to accompany them to appointments
  • planning enjoyable activities together
  • exercising together
  • encouraging them to socialize with others

People looking after someone with depression also need to practice good self-care in order to preserve their own mental well-being.

 

Getting help for depression

People with symptoms of depression should consider seeking help from a loved one or a healthcare professional, such as a doctor or psychotherapist.

Other sources of help for people with mental health conditions and mood disorders include the ADAA’s website and Mental Health America’s list of support groups.

Suicide prevention

  • If you know someone at immediate risk of self-harm, suicide, or hurting another person:
  • Call 911 or the local emergency number.
  • Stay with the person until professional help arrives.
  • Remove any weapons, medications, or other potentially harmful objects.
  • Listen to the person without judgment.
  • If you or someone you know is having thoughts of suicide, a prevention hotline can help. The National Suicide Prevention Lifeline is available 24 hours a day at 1-800-273-8255.

 

Summary

Not everyone with depression will display the typical symptoms of sadness and despair.

Sometimes, the only signs a person may show are physical, such as fatigue, insomnia, or weight changes.

Other signs of hidden depression can include using alcohol or drugs, acting irritable or angry, and losing interest in pleasurable activities such as sex and hobbies.

People concerned that a loved one has hidden depression should try talking to them about their symptoms and offering nonjudgmental support and advice.

Individuals who suspect that they have depression should consider discussing it with a friend or mental health professional.

There are also a number of organizations that provide support to those dealing with depression.

 

via Hidden signs of depression: How to spot them and what to do

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[BLOG POST] One Is The Loneliest Number – after TBI Traumatic Brain Injury Survivor

By Bill Herrin

TBI can make you feel isolated

One of the most unsettling things I see in the TBI community is when survivors feel isolated and lonely. There have been heart-wrenching posts and comments on our blog site about families that shun (or brush off) their own family members that have experienced a traumatic brain injury. Worse yet, I’ve heard people say that they are totally on their own because they just don’t have emotional support from family (or friends). There is no way that I can offer a solution that will work for everybody – for that matter, even for one survivor…but I’m gonna try to give some pointers that can alleviate some of the frustration and hurt that’s caused by loneliness and the things that can make it feel even worse.

It’s hard work

The very first thing I’ve recognized as the rallying cry of survivors is “you don’t know it unless you’ve experienced it” – and that surely is true. Letting people know how your brain injury feels is like describing the color and texture of an abstract painting to a blind person. They have no point of reference to even work with.  To many, the conditions, effects, and feelings experienced by a TBI survivor are inexplicable in words…although some are able to do it. I will be referencing a book offered by Lash & Associates Publishing to help find ways to combat the depression and anxiety that survivors experience, to find ways to cope, and to encourage caregivers as well.

In the book titled “Lost & Found” – a brain injury survivor herself, offers these succinct nuggets of wisdom:  “Healing and rehabilitating from a brain injury takes a long time. It continues long after formal rehabilitation has ended. It is the hardest work I have ever done. It requires endless courage, determination, motivation, and
support. It usually involves rebuilding multiple areas of not just your life but also your being – all at once. How could there be an easy solution for all of that!

Brain injury doesn’t have to be a destination. It is a journey. Let it be only part of who you are to become. “Don’t accept timetables for recovery.”

— Jill Bolte Taylor, Ph.D., Neuroanatomist

The Key is Incremental Strategy

Follow your heart...and find progress.

Strategies are key in making “baby steps” toward better cognition, a better mood, a better outlook, and a better life. Much progress can be made with encouragement from friends or family…but what about those that don’t have that kind of social “safety net”? Be encouraged. Your will to improve is the key to doing the right things and working to get the right results. As always, there will be naysayers that will immediately point out that “you’ve been this way for a long time” or “you’re wasting your time.” Well, with that kind of encouragement, you’ll be better off doing your best – one step forward at a time. Don’t even consider the steps backward…life hands those to everyone anyway!

Incremental strategies are the ticket to incremental change. Biting off more than you can chew is not a good plan! Start off small, find strategies that work for YOU, and repetition is a good thing. If you’re repeating a step, and you know that you are…that’s a great thing! If you recall how your brain used to process information, but you realize that it has changed…good for you! That is a baseline for working on your cognition. Remember, working in tandem with your doctors, therapists, caregivers, etc. is also very important. You’re not going to make measurable progress without someone that can see your “mile markers” and take note of them. Caregivers can also help with that.

Here’s an excerpt from Lost & Found that is a prime example of working toward healing: “Know that in time, as you heal, it won’t always be this hard. You won’t have to plan and strategize each and every little step you take. So remember you are healing, imagine yourself with a cast on your head and be kind to yourself. Treat yourself like you would any loved one with a serious health issue.

Remember to reward yourself for every successful task and effort, no matter how small. Pat yourself on the back and take a break doing something that will make you smile. We have to be our own cheerleaders now, like the supportive people in our lives were when we were growing up.”

Wow…that’s powerful, but also takes grit and determination. Believing in yourself is always easier when you have cheerleaders – but for those who don’t, that excerpt makes a lot of sense.

Believe.

Emotional healing can come through a combination of things – here are a few (a more detailed version is available in the book, Lost & Found), but here’s a brief Believe in yourselfoverview… Keep a grateful journal or victory log; Discover your “inner poet” by writing phrases that are meaningful to you; Journaling about your day can help you build confidence and see progress; Keep your perspective by noting improvements on a calendar; Challenge and learn from negative thoughts; Take time to smile; Forgive yourself – can’t do what you used to do? You’re only human! Remember that you’re still the same unique and valuable person that you always were; Try to have positive people around you…that supports your life moving in a positive direction; Work with art. Creative outlets are rewarding and fun. These are things that encourage and grow you as a person – with or without others’ approval.

Many times, people in your life are grieving the loss of the “old you” and trying to establish how to interact with the “new you” – just like you are. That can also make an awkward transition for family and friends. Seeking spiritual counsel can be a huge boost as well – if you attend a church, synagogue, etc., or want to…that could be a great way to grow your positivity in life and make some new acquaintances too.

Here’s another excerpt from Lost & Found:  “Keep in mind that your family members and friends may be grieving too. They have lost the person you used to be and the roles you used to play in their lives. They don’t know how much of your former self will return, or when.”

And a quote from the same book: “Honoring your feelings is what helps you move beyond the pain.”

— Janelle Breese-Biagioni

This last excerpt from the book really sums up what so many TBI survivors need to hear…

“Remember you are healing, even if you can’t see a wound! Think of your brain in a cast, as it would be if you broke any other part of your body. If you broke your leg, you wouldn’t expect yourself to run a marathon right away, even if you were previously a marathon runner. First, you would be in a cast and you would rest a lot. Then you would start walking with crutches on even surfaces. The next step might be walking with a cane. You get the idea; it would take a lot of healing before you could run again, never mind run a marathon! Most of us try to run marathons with our brains all the time!

Work to make good things happen.

You won’t be able to do everything you used to, at least not right away. Everything will be harder and take a lot longer to do than it used to. You can compensate by cutting back, simplifying and being kind and patient with yourself. Avoid the tendency to push yourself too hard. Rehabilitation is a delicate balance between challenging yourself enough to promote healing and not so much that you have discouraging setbacks.

So picture yourself with a cast on your head and remember to rest, celebrate the smallest gains and balance out all the hard work with something that makes you smile, every day. You are engaged in one of the toughest challenges of your life, if not the hardest but it will get easier in time.”

Root for the Home Team…YOU!

In closing, the hardest takeaway from all this is that “going it alone” is hard but doing it without positive people surrounding you may be even harder. Cheerleaders are great, but they have to be rooting for the home team…and you’re the captain of the home team! Make the best choices that you possibly can and be encouraged – knowing that if all else doesn’t go as planned, you can rely on yourself to try and make things better. And you can also claim all of the credit. As always, be sure to let your doctor(s) know your intentions, and hopefully, they’ll be excited for your long-term efforts to improve. TBI is tiring, overloading, depressing at times, and can cause irrational behavior. With all that said, there’s always room to plan for incremental change.

Here’s a great and inspirational quote from Beverly Bryant:

“Being a brain injury survivor = Being a stranger in a familiar place.”

Amen to that!

 

If you’d like to know more about the Lash & Associates book titled “Lost & Found”…just click this link!

via One Is The Loneliest Number – after TBI Traumatic Brain Injury Survivor

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[Abstract + References] Electromyographic indices of muscle fatigue of a severely paralyzed chronic stroke patient undergoing upper limb motor rehabilitation

Abstract

Modern approaches to motor rehabilitation of severe upper limb paralysis in chronic stroke decode movements from electromyography for controlling rehabilitation orthoses. Muscle fatigue is a phenomenon that influences these neurophysiological signals and may diminish the decoding quality. Characterization of these potential signal changes during movement patterns of rehabilitation training could therefore help improve the decoding accuracy. In the present work we investigated how electromyographic indices of muscle fatigue in the Deltoid Anterior muscle evolve during typical forward reaching movements of a rehabilitation training in healthy subjects and a stroke patient. We found that muscle fatigue in healthy subjects changed the neurophysiological signal. In the patient, however, no consistent change was observed over several sessions.
1. V. L. Feigin , B. Norrving , M. G. George , J. L. Foltz , A. Roth Gregory , and G. A. Mensah , “Prevention of stroke: a strategic global imperative,” Nat. Rev. Neurol., vol. 107, pp. 501–512, 2016.

2. A. Ramos-Murguialday et al , “Brain-machine interface in chronic stroke rehabilitation: a controlled study,” Ann. Neurol., vol. 74, no. 1, pp. 100–108, 2013.

3. A. Sarasola-Sanz et al , “A hybrid brain-machine interface based on EEG and EMG activity for the motor rehabilitation of stroke patients,” IEEE Int Conf Rehabil Robot, vol. 2017, pp. 895–900, Jul. 2017.

4. R. M. Enoka and J. Duchateau , “Muscle fatigue: what, why and how it influences muscle function,” J Physiol, vol. 586, no. 1, pp. 11–23, Jan. 2008.

5. M. González-Izal , A. Malanda , E. Gorostiaga , and M. Izquierdo , “Electromyographic models to assess muscle fatigue,” J. Electromyogr. Kinesiol., vol. 22, no. 4, pp. 501–512, Aug. 2012.

6. A. Sarasola Sanz et al , “EMG-based multi-joint kinematics decoding for robot-aided rehabilitation therapies,” in 2015 IEEE International Conference on Rehabilitation Robotics (ICORR), 2015.

7. P. V. Komi and P. Tesch , “EMG frequency spectrum, muscle structure, and fatigue during dynamic contractions in man,” Eur. J Appl Physiol, vol. 42, no. 1, pp. 41–50, Sep. 1979.

8. D. R. Rogers and D. T. MacIsaac , “A comparison of EMG-based muscle fatigue assessments during dynamic contractions,” J. Electromyogr. Kinesiol., vol. 23, no. 5, pp. 1004–1011, Oct. 2013.

9. B. Bigland-Ritchie , E. F. Donovan , and C. S. Roussos , “Conduction velocity and EMG power spectrum changes in fatigue of sustained maximal efforts,” J Appl Physiol Respir Env. Exerc Physiol, vol. 51, no. 5, pp. 1300–1305, Nov. 1981.

10. G. V. Dimitrov , T. I. Arabadzhiev , K. N. Mileva , J. L. Bowtell , N. Crichton , and N. A. Dimitrova , “Muscle Fatigue during Dynamic Contractions Assessed by New Spectral Indices,” Med. Sci. Sports Exerc., 2006.

11. N. A. Riley and M. Bilodeau , “Changes in upper limb joint torque patterns and EMG signals with fatigue following a stroke,” Disabil Rehabil, vol. 24, no. 18, pp. 961–969, Dec. 2002.

12. M. J. Campbell , A. J. McComas , and F. Petito , “Physiological changes in ageing muscles,” J. Neurol. Neurosurg. Psychiatry, vol. 36, no. 2, pp. 174–182, 1973.

 

via Electromyographic indices of muscle fatigue of a severely paralyzed chronic stroke patient undergoing upper limb motor rehabilitation – IEEE Conference Publication

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