Posts Tagged Caregivers

[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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[Abstract] Educational and Vocational Issues in Traumatic Brain Injury 

This article describes some of the current issues related to return to school and employment for individuals with traumatic brain injury. A strong, collaborative partnership between an individual’s health care providers and key stake holders is essential toa smooth transition back to school or work. Ways to improve current practices andensure more timely and appropriate educational and employment services and supports for individuals with traumatic brain injury are described. Some recommendations on areas for future research are also offered.

Source: Educational and Vocational Issues in Traumatic Brain Injury – Physical Medicine and Rehabilitation Clinics

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[BLOG POST] Rehab of the everyday – Broken Brain – Brilliant Mind

Rehab of the everyday

Source: W.I.P.

I’ve been giving a lot of thought, lately, to my recovery. I’m going to call it a recovery, because I do feel that’s what’s been taking place with me over the past years. I know that some ascribe to the idea that an injured brain cannot fully reverse its damage — what’s lost is lost. But I’m not entirely convinced. And I hope I never will be. As long as there is a shred of hope that the functionality I once had can be restored, I’m sticking with that.

One of the big reasons I’m sticking with the concept of recovery is what I’ve read about individuals who have sustained serious — even catastrophic — brain injuries, through stroke or accidents, and still came back to do amazing things. There’s the story I’ve read about the man in his 60’s who suffered a stroke, and then worked his way back from not being able to even crawl, to hiking and doing mountain climbing regularly — to the point where his final hours before he died were actually spent mountain climbing. When they autopsied his brain, it was discovered that the  region responsible for motor control had been severely damaged and 97% of the nerves that run from the cerebral cortex to the spine had been destroyed.

Yet, he managed to work his way back after a year to teaching full-time at the college level, and he remarried, kept working and hiking and traveling.

His brain and nervous system had sustained tremendous damage. Yet, he was able to get back on track and on with his life.

He recovered — his functionality, his participation in life, his physical capabilities… things and activities he desired and loved to do. He may not have been “the same person” he was before the stroke (not knowing him, it’s impossible to say), but he nevertheless restored his life to a fullness  that most — with or without brain injury — would value.

What struck me about this recovery, which I read in Doidge’s The Brain That Changes Itself, is how he worked his way back — with the help of others — through doing the everyday things. Learning to crawl after paralysis… then learning to walk again. Learning to type, one finger at a time, then with a whole hand. Bit by bit, gradually, with determination and consistency, he worked his way back. And he eventually ended up mountain climbing at 9,000 feet in Columbia, where he had a heart attack and died not long after.

I contemplate that man’s example, and I wonder how I can apply it to my life. I also see how my path runs parallel to his — despite what’s happened to me, despite the injuries and the setbacks, despite the false-starts and disappointments, I keep going. And I keep intent on my life. The thing with me is to not dwell so intently on my injuries or my difficulties, as I did before. The thing with me is to not get caught up in constantly second-guessing myself and trying to sort out what went wrong. I did that for years — decades, even. And all it got me was more self-doubt and insecurity. Now I have a much better understanding about the true nature of my difficulties, and I can see past the cloud of confusion and doubt, and focus on the goals, rather than the difficulties.

And in focusing on the goals, in focusing on the step-by-step process of getting from one place to the next, going from one phase of my progress to the next with deliberate mindfulness, I find myself getting better and better at the business of living my life. It’s like starting out with anything new — you have to really pay close attention to little details and little signs and signals, in order to refine and develop your technique. It’s like beginning a new sport — you have to pay such careful attention to your form and technique, sometimes for years and years, before you finally get to a place of mastery.

I’ve read that it takes 10,000 hours to become an expert. 10,000 of focused attention and practice on what it is you do. That’s 8 hours a day, 5 days a week, for about 5 years. Or 4 hours a day, 5 days a week, for about 10 years. That number is pretty widely agreed upon, and it’s the figure I’m using for my own purposes. In my case, it’s been over 5 years since my last injury, and I haven’t devoted 10,000 consistent hours to my recovery. I only really started focusing on it — realizing what it was — a couple of years ago. So, I’m feeling a bit behind. But I can’t let it get me down.

No, I need to just keep on keeping on. The things I want to re-learn and/or recover — my composure, my ability to manage my anger in positive, productive ways, my interactions with others, my ability to sustain relationships with people I care about, my ability to stay with a job, even when I’m getting pulled in a hundred different directions… those things take practice. It’s like starting over, in some ways — except that in some cases I never really had a first starting place. Those abilities never got fully and consistently developed with me, since I’ve had so many injuries throughout my childhood, youth, and adulthood. Arrested development? Perhaps.

But you know what? I’m still here. And I’m still willing to work to get to the place where I want to be. It’s tiring, often boring, frustrating, irritating work. But the payoff is huge. I want to recover the things I’ve lost — composure, focus, regular sleep and rest, physical fitness and strength — and it’s going to take work.

So, I’ll work. {shrug} I’ll pay close, even rapt, attention to the little things, put myself in situations that stretch me and teach me about myself, and I’ll leave time to recover, as well. I’ll treat this like any other sort of training — athletic training, especially — and follow the same guidelines I followed when I was first learning to run races and throw the javelin in track. You have to start somewhere, and it’s no good to blame yourself for not being an expert when you’re just starting out. Like it or not, in many ways, I am just starting out with recovering things I’ve lost. Patience is key. Yes, patience.

It’s hard work, but it’s worth it. In the end, I get what I pay for.

Visit BLOG —> Rehab of the everyday – Broken Brain – Brilliant Mind

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[BLOG POST] 10 Things People Don’t Realize You’re Doing Because You Have An Invisible Illness

Often, the hardest part of having an invisible illness is not the chronic pain or the constant discomfort or any of the other symptoms – it’s the fact that other people cannot really see or understand what you’re going through. Although the disability causes endless problems and challenges for the person experiencing it, the reality is that – unless they are specifically told – other people cannot easily grasp it or remember to adapt to it. So whether you’re suffering from depression or anxiety or Fibromyalgia or an IBD like Crohn’s Disease or any of the other number of invisible illnesses out there, here are 10 things others may not realize you are doing because of your illness.

1. Functioning in the midst of little sleep, lots of pain, and/or extreme fatigue. 

Not because you’re good at functioning in this state, or because it’s not a big deal, or because the discomfort isn’t really that bad. But because you literally have no. other. choice. It’s either ‘let this illness take over your entire life and swallow you whole’ or ‘keep the illness enough at bay that you live as normal of a life as you possibly can.’

2. Working your ass off. 

You have enough situations in your life already where you have little to no control over what is happening to you and/or your body, so you often find yourself working overtime, going the extra mile, and pushing yourself to the peak of your limit – just because it feels good to actually do something and take the reins when you can.

3. Having a hard time trusting others.  

It’s not necessarily that you have a hard time trusting others because they’ve let you down. Often, it’s the contrary – you have tons of people in your life who do nothing but support you. However, learning how to lean on others is still quite a challenge for you; you’re used to having to fight harder than everyone else, to take care of yourself no matter how exhausted you are, to make yourself get out of bed even when you really don’t want to or you feel like you can’t. Because you’ve had no choice but to be incredibly independent in everything that you do, it’s actually quite difficult for you to occasionally let someone else take care of you for a change.

4. Feeling awful, even when you ‘look fine.’

That’s one of the hardest parts about your invisible illness: having to explain to people why you have to go home from work, or skip the presentation, or miss your friend’s birthday party – and hoping they’ll understand and believe that you’re telling the truth, even though you might look healthy as ever on the outside.

5. Struggling to feel calm when you’re outside of your normal routine. 

You’ve learned how to cope with your illness and live a mostly regular life, as long as you stick to a certain way of doing things. Even when you’re feeling terrible, you can still get out of bed and go to work and be a person, as long as you make room for the things that help – doctor visits, go-to healthy meals, naps, relaxation techniques, extra sleep, whatever it is that helps you combat your particular struggle. So it’s incredibly hard for you to adjust when that routine is disrupted in any way whatsoever, whether it’s a vacation or a visit from a friend or a new job. You’re not afraid of change, but you are afraid of it negatively affecting the routines you’ve worked so hard to perfect.

6. Feeling anxious about ‘small’ things.

Car rides, dinner parties, enclosed spaces, a short walk, a guest in your home. The possibilities of what you will worry about are endless.

7. Doing the last thing people would ever expect you to do.

For the people in your life that do know you have an illness, they’re often surprised when you decide to run a marathon or go on a backpacking trip or sign up for a membership at a kickboxing studio. But in a way, your illness has been almost (alllllmost) a blessing in the sense that it’s caused you to be much more adventurous and to try many more things, simply because you’re so determined to not let it affect the quality of your life or to turn you into a passive person.

8. Trying to constantly reassure others that You. Are. Fine.

Because surprisingly, pity is one of the things you hate most about your invisible illness. You don’t like people feeling bad for you, you don’t want people treating you differently, and you really can’t stand when people walk on eggshells around you. Having an invisible illness often makes you feel different and isolated enough as it is, so you do everything in your power to convince everyone that you’re fine, just so that they’ll treat you like a normal person.

9. Stressing over stuff that most people never even think about. 

There are a lot of things that most people don’t even think about that end up causing you extreme worry, depending on how it affects your illness and your coping mechanisms. When you’re asking multiple questions about an impending situation, it can be uncomfortable or difficult when other people are looking at you like you’re crazy or high maintenance.

10. Being ten times more passionate about your dreams than anyone else. 

Because even if you can’t cure this disease, you can certainly make sure you still have an incredible and fulfilling life in spite of it. And if that’s as close to a ‘cure’ as you can get, then so be it.

Source: 10 Things People Don’t Realize You’re Doing Because You Have An Invisible Illness | Thought Catalog

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[WEB PAGE] 5 Tips and Tricks for TBI Caregivers

When someone you love sustains a serious traumatic brain injury often represents the beginning of a new season of life. As with any major change, it is rarely an easy journey.

Depending on the severity of the injury, you may find your loved one needs assistance with the most basic activities of daily life, such as feeding themselves, using the restroom, changing clothes and bathing.

In many cases of traumatic brain injury (TBI), the journey home comes after an extended stay in a hospital, skilled nursing or rehabilitation facility. For weeks — maybe months — life has been an emotional rollercoaster, and through it all you’ve had one goal in mind: getting your loved one home.

In the immediate aftermath of TBI, we often feel grief, fear, and concern. Family and friends flock to be by our side to lend support and assistance. This can mean picking up the kids from school, delivering meals to the house, or bringing snacks to the hospital. People want to help, and more than that they want to express their love and concern.

Unfortunately, even the dearest of friends will eventually have to shift their focus back to their own lives. It does not mean they don’t care or aren’t concerned, but life may seem a bit lonely compared to those earlier days in the hospital waiting room surrounded by people offering to help. Indeed, adjusting to life as the primary caregiver to a partner, spouse, child, parent or friend with TBI is difficult, but with these tips and tricks it isn’t impossible.

1. Stay honest

It is important to be honest with clinicians, family members, and your loved one with TBI about your own needs, fears, concerns and emotions. You may have thoughts or feelings that you’re ashamed of, and it’s important to remember that you are human and these feelings are normal. If, however, you find that these thoughts are impacting your ability to provide care to your loved one, you should seek input or guidance from someone you trust, like a therapist, close friend or relative or minister.

2. Work to understand

Understanding what your loved one with TBI is going through is almost as impossible as trying to show them what you are going through, but it is important to maintain perspective and patience. Rather than trying to understand, make a commitment to work to understand. Trying implies that you attempt and either achieve or give up, but working indicates a constant, ongoing period of growth and development.

3. Acknowledge limits

When you are staying honest you will likely find that you have to have some tough conversations about limits — your own, those held by your friends and family, and of course your loved one with TBI’s limits. Limits may not only be physical, but emotional and financial as well. These boundaries allow you and your family to adjust to and establish a new normal that works for everyone.

4. Seek input

As you adjust to the new normal of caring with someone with TBI, you will find that your circle of relationships grows rather rapidly. Remember to take advantage of these contacts and call on clinicians, your local or state Brain Injury Association, others you’ve met who have sustained a TBI, and certainly your fellow caregivers when you have a question, a concern or a need.

5. Ask for help

There is a difference between seeking input and asking for help. It is essential that you ask for help when you need it, and if you are staying honest you will know when these moments arise. Consider establishing a plan with a local respite care provider or other family members and friends so that if you find you need assistance, you have someone to call. Remember, you are the wheels keeping the bus in motion and, without you, things will come to a screeching halt.

Source: 5 Tips and Tricks for TBI Caregivers – Future of Personal Health

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[ARTICLE] Effect of a Caregiver’s Education Program on Stroke Rehabilitation – Full Text

ObjectiveTo evaluate effects of caregiver’s education program on their satisfaction, as well as patient functional recovery, performed in addition to daily conventional rehabilitation treatment.

MethodsThree hundred eleven subjects diagnosed with first-onset stroke and transferred to the Department of Physical Medicine and Rehabilitation of Inha University Hospital were surveyed. In 2015, caregivers attended an education program for acute and subacute stroke patients. Patients who received an additional rehabilitation therapy were assigned to the experimental group (n=81), whereas the control group (n=100) consisted of transfer cases in 2014 with only conventional treatment. The experimental group was classified by severity using the Korean version of the National Institutes of Health Stroke Scale (K-NIHSS), which was administered to all 181 subjects, in addition to, the Korean version of the Mini Mental Status Examination (K-MMSE), a Modified Barthel Index (K-MBI), and the Berg Balance Scale (K-BBS). Caregiver satisfaction and burden before and after education programs were assessed using the Canadian Occupational Performance Measure (COPM), as well as family burden and caregiver burnout scales.

ResultsNo significant intergroup difference was observed between initial K-NIHSS, K-MMSE, K-BBS, K-MBI scores, and times from admission to transfer. Those with moderate or severe strokes under the experimental condition showed a more significant improvement than the control group as determined by the K-NIHSS and K-BBS, as well as tendential K-MMSE and K-MBI score increases. Satisfaction was significantly greater for family members and formal caregivers of patients with strokes of moderate severity in the experimental group.

ConclusionThe caregiver’s education program for stroke subjects had a positive outcome on patients’ functional improvement and caregiver satisfaction. The authors believe that the additional rehabilitation therapy with the education program aids patients to achieve functional improvements for an optimal return to social life.

INTRODUCTION

Stroke is prevalent among the elderly and a main cause of severe chronic disabilities. The Korea National Health Insurance Service reported that cerebrovascular disease is the third most common disease following cancer and cardiac disease (48.2 persons per 100,000 of the population) in 2014, but mortality rates due to cerebrovascular disease were lower than in 2004. Regarding the latter, acute management including medical treatment (e.g., recombinant tissue plasminogen) and organized interdisciplinary care has improved, and mortality rates decreased accordingly [1]. However, despite such relatively successful acute medical management, the majority of stroke patients suffer life-long disability [2]. In a previous long-term study, it was reported that 25%–74% of stroke survivors required assistance to perform activities of daily living (ADL) including feeding, self-care, and mobility [3].

Considering the prevalence of cerebrovascular disease and residual disability, in stroke, interdisciplinary comprehensive rehabilitation intervention is considered a major management modality for poststroke care, so this type of intervention has increasingly been asked for [4]. The effect of interdisciplinary comprehensive rehabilitation is strengthened by reiteration and intenseness (high-intensive practice and repetitive task oriented training) [4, 5]. However, in Korea, a 5-day work week system has been adopted and most hospitals cannot perform rehabilitation therapy at weekends.

Previous reviews have reported that additional exercise programs by therapists at weekends could improve functional recoveries after stroke [6, 7]. Thus, it stood to reason that additional rehabilitation therapy based on a caregiver’s education program could improve functional recovery after stroke. Accordingly, the purpose of this study was to evaluate the effects of rehabilitation therapy on patients’ functional recovery by caregivers and the latter group’s satisfaction, in addition to daily conventional rehabilitation treatment.

Table 1. The education program of caregivers for physical and occupational activities

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