Posts Tagged Caregivers

[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

Continue —> KoreaMed Synapse

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[WEB SITE] The Real Truth About Brain Injuries – brainline.org

Dear Diary,

I’m ready to take a step back, to take time to contemplate, to reflect and to finally tell the truth.

I’m finally ready to put down my book, which has been all too consuming. To discretely slam or just close the pages, consciously smothering the content. Purposely, shutting out all the noise, the battering, the heartache, the horror, the never ending memories and the trauma of living with brain injury.

Yes, my son was one of the lucky ones. He survived.

But at what costs?

Over the years, I have read many, many books about brain injury, most trying to impart a positive twist to its horrors. And, even in the midst of my own chaos, I surprised myself by writing my own memoir which a publisher actually printed. Like other authors, I tried to write to give hope to others, which at the time was my intent. But my intention now is to write a final chapter without an audience in mind. With no anticipation that anyone will read it so that I can give myself permission to just write sincerely with no expectations to always have to be the strong one or to always have to be the one to try to see and share the silver lining amidst the tragedies.

I want to be unguarded. Truthful. Real.

There is no silver lining.

Yes, in my memoir, I wrote about my son Paul’s miraculous recovery from a traumatic brain injury. Do not get me wrong, it is an amazing story and he is an incredible being and will always be my hero. But in my book, I only wrote about his first year of recovery and there have been many, many more years. And there have been other thoughts and real struggles that have never put down on paper.

Most people, publishers, and readers only want to hear the “happy ending” parts to a survivor’s story, grasping for some kind of hope that their loved one could possibly — with determination and perseverance — conquer, too. So that is what I wrote about, partly because I needed that glimmer of hope myself. It has been almost five years since my books have been published, 15 years since Paul’s bike and the SUV collided. Did I really just type “collided”? I need to edit that to read: smashed, shattered, and crashed into our lives, changing everything forever. Wait, I need to also scratch out everything because I just looked in the dictionary and it say’s “everything” means the whole thing. Obviously, Paul is not a thing, but brain injury has changed the core of who he is and was and what his future could have been. The impact from brain trauma has altered Paul and tainted our entire family, derailing the “happily living after” course we had been on.

People often ask me if it was therapeutic for me to write about our family’s TBI “journey.” I usually answer with my standard comment, “Yes, very healing!”  And again, I usually promptly answer when others asked, “How are you, Paul, and your family?” and without hesitation I respond, “Fine thank you and you?”

I lie, often.

The reality of reliving, writing, editing and bringing visualizations and memories to life and ink to paper has depleted my spirit. And man, what about all the caregiving and caregiving and caregiving? Caregiving is exhausting! We have had to readjust to Paul’s needs as his situation has changed, which it has many times. There was the immediate aftermath of injury in the intensive care unit, the coma, the uncertainty of life and death. Then later, in the hospital, trying to grasp all that was happening, then the prolonged stay in a rehab setting not knowing if our son would ever walk or talk again. And then there was his return home when the list became even longer while monitoring his changing physical and emotional needs, cognitive issues and strategies, safety concerns, meal planning and preparation, medications, possible seizures, bathing, dressing, and personal care, structuring and planning activities, transporting to and from therapies, dealing with adaptive equipment, moods and more and more and more. The caregiving continued with his e-v-e-n-t-u-a-l reintegration back into the community and school trying to set up a special program to meet all his needs and later attending an unusual higher education program that would focus also on life skills and then working with so many organizations to help him find possible opportunities for employment. And the long-term issues of constantly advocating and advocating and advocating, seeking out possible resources for Paul and our family. And the finances, and especially all the paperwork and legal and insurance issues. And as anyone who is the midst of brain injury knows, the list is endless — and that’s only the list for taking care of the injured person. What about taking care of other family members or siblings and their activities? What about the emotional needs? What about the basics of daily living such as shopping, cooking, laundry, childcare, house work and yard work? And what about me? What about my needs and comforts, my job, my friends, my marriage, my emotional and physical well being?

Well, the reality is, I have written books, articles, and speeches. I have given presentations trying to bring awareness to this devastating injury, trying to put that optimistic twist to every piece that I write, every presentation that I give. But in doing so, I have stifled real thoughts, real emotions, and I have kept my secrets to myself.

At times, I have become isolated from others, so it can be awkward when I feel entrapped by friends or acquaintances as they sometimes persist on asking curious questions, when all the while I’m secretly thinking that they could never, ever, ever possibly understand the magnitude of the real answers. Besides, they just think I’m nuts anyway for having eight children. Yes, eight. (Maybe I am crazy?) But today I’m ready to take a step back, to take a moment to contemplate, to reflect and to finally tell the truth. It’s time for me to not sugarcoat brain injuries, to not pretend that this whole experience has not unhinged me or my husband and our children. How I wish that I could write or talk about something else, maybe a mystery novel or a love story or a comedy. I have not really laughed for a long, long time despite all the small and big victories we have fought for. The numbness that comes with trauma coats everything.

So, here is the truth about brain injury from a mother’s point of view, my point of view.

People often ask how am I. I’m tired! Really, really tired. And like other TBI caregivers, I never thought I would ever end up in an ICU, or rehabilitation hospital, or have the need to attend a brain injury conference, let alone be a caregiver for my son Paul who sustained his injury almost 15 years ago, when a car struck him while he was riding his bike — without a helmet.

I’m also neurotic! Now, whenever I see a kid without a helmet on, I scream out my car window, “Wear a helmet, you idiot!” which usually sends the kid tumbling. Anyway… how am I? I guess I’m mad sometimes that Paul was not wearing a helmet and for bringing traumatic brain injury into our lives. I guess at times I also feel guilty. I feel guilty for feeling mad, guilty for not being able to protect my son, guilty that I can’t change what has happened, guilty that I miss our previous way of life when my children’s biggest concern for the day used to be whether they were going to play on a swing or eat a peanut butter sandwich. Guilty that I cannot help them or be fully present. Guilty that I don’t have time for myself and my friends, and I’m worried that my husband and I talk and have sex so infrequently; we have become distant, like strangers.

I guess if you ask me how I am, I could say I’m often preoccupied, stressed, and depressed. I could say that I had absolutely no idea when I took my wedding vows years and years ago that my husband and I would really have to live out the “better or worse part,” let alone think that we would have ever had eight children! If anyone had ever truly told me about the teenage years or that I’d be dealing with traumatic brain injury, I would have run from that alter in a heartbeat. But the reality is that my children are everything to me and I fear for their safety and their emotional, physical, spiritual, and mental well-being. I miss our family’s carefree days. I miss having fun. I’m also burdened by domestic chores — cleaning, carpooling, cooking. Boy, do I hate to cook, and the kids always know when the oven is on because the smoke alarm is usually blaring. And I hate that Paul had a brain injury! I get sad, really sad and grief-stricken sometimes to have had to mourn the loss of what could have been. I hate all the medical appointments and therapies, and that Paul has had to struggle so much, and that our family has had to endure an abundance of heartache. My heart hurts, and most days my mind does, too. I cannot comprehend all we have been through, all the changes. I cannot understand why some friends and extended family members have not educated themselves about TBI and distanced themselves from us.

How am I? I’m often confused by all the medical words, equipment, procedures, and often the lack of communication between us lay people and the professionals. I’m dumbfounded that I feel like I’m reinventing the wheel day after day to try to find help and resources for my son and my family. How am I? How am I really? At times, very lonely; caregiving can be isolating, demanding, never ending and really, really hard. Sometimes, I have a big pity party for myself. It’s usually while driving in my car when I’m alone. Sometimes I scream at the top of my lungs, “Why did this happen, why Paul, why our son, why our family?” and usually this feels really good, except when I’m stuck at a red light and I realize that I have forgotten to put my windows up. How am I? Numb. Some days I don’t want to get out of bed to face the day, to face the reality that traumatic brain injury happened to me, to my son, to our family.

I would be lying if I told anyone that I have never thought about buying a one-way ticket to Hawaii. I would be lying if I mentioned that we have lived through our son’s brain injury without any scars or battle wounds. And I would be lying if I admitted that I love all the endless caregiving.

I lie a lot. I write books, articles, and speeches, and I frequently encounter people in the brain injury world at conferences and hear of their struggles and accomplishments and the many, many “miracles” like Paul’s recovery. But mostly, I am suffocated with the sadness, the grief, and the hopelessness that these families and survivors have to try to cope with. It reminds me that I’m one of them. Yet I’m supposed to be the pillar, the expert, the one who has all the answers.

I have no answers. There are none.

There is no silver lining to brain injuries. Brain injury does not go away. And can I say that I also hate the word “plateau”? I hate all the clichés I have heard over the years and even at times have repeated: Time heals all wounds. You’ve come so far. You’re son/daughter is such a miracle/blessing. Your family is so amazing and an inspiration to us all. You’re so strong. Good always comes out of bad. There are lessons to be learned through every experience. God works in mysterious ways. You’re so lucky your son is verbal or ambulatory or does not look any different. Your marriage and family must be so strong to have survived the unthinkable!

I’m finally ready to put my book down and to stop writing, at least for now. I’m ready to discreetly slam, or just close the pages, consciously smothering the content and clichés, purposely shutting out all the noise, the battering, the heartache, the horror, the never ending memories and the trauma of living with brain injury.

Our son who is now 26 has moved out of our “one-horse town” and our old colonial home to reside in the big city. Despite lasting repercussions and deficits from his crash, it is now time for Paul to revel in all his hard work and write the next chapter to his own life.

And it is time for me to begin to give myself permission to heal and to live.

Written exclusively for BrainLine by Dixie Coskie. Dixie is an award winning author who is passionate about her roles as a mother of eight and an advocate for all children and the disabled. Her books and talks inspire others with the ultimate triumph of hope and love.

Read a clip from Dixie’s memoir, Unthinkable, here.

Click here to learn more about Dixie.

Source: The Real Truth About Brain Injuries

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[BLOG POST] Home After a Stroke: It Isn’t Failure – It’s Rehearsal

Quotes like “If you’re not prepared to be wrong, you’ll never come up with something original” (Ken Robinson) are not really helpful.  A more practical way to see failure as positive is to call it rehearsal.  When struggling with a new challenge it does not help to feel bad about the mistakes I make.  The purpose of my 1st attempt is to give me ideas about how to make my 2nd attempt awesome.  To be honest, I feel frustrated the 1st time I try something new and may even quit.  When I was able-bodied I was totally unaware of how often I used both hands or needed good balance so I am often unprepared for the challenges a stroke creates. Trying the task again the next day accomplishes two things.  My frustration has receded so I am calmer and the mistakes I made the 1st time give me ideas about what to do differently.

I still get frustrated when I try something new BUT I quickly hear myself say “it’s a rehearsal.” This calms me down and reminds me that rehearsal has the potential to propel me to success IF I change the way I think about what is happening to me.

Source: Home After a Stroke: It Isn’t Failure – It’s Rehearsal

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