Posts Tagged Caregivers

[WEB SITE] The Top 10 Caregiving Blogs for Caregivers – Caring Village

Being a Caregiver can be tough and unfortunately, life doesn’t slow down to give you time to learn how to care for someone you love. This is why caregiver blogs, which provide resources and information (often from other past or present caregivers and/or industry professionals) can be extremely helpful in navigating your caregiving journey. Below is a list of the top caregiving blogs online including Caring.comThe Caregiver SpaceTransition Aging ParentsThe Caregiver’s VoiceCareGiving.comEldercareABCeCareDiaryDaily CaregivingCaring for Parents Made Easy, and Caring Village’s own resource section.

Caring.com

Caring.com is a leading online destination for those seeking information and support as they care for aging parents, spouses, and other loved ones. Their mission is to help the helpers. They equip family caregivers to make better decisions, save time and money, and feel less alone — and less stressed — as they face the many challenges of caregiving.

The Caregiver Space

The Caregiver Space provides a safe and open space—at no cost— where visitors can be real about what it’s like to care for someone dealing with a serious disability or illness. Use their community forums to ask questions, share experiences, get real answers, or just get things off your chest.

Transition Aging Parents

Transition Aging Parents is a blog written by Dale Carter, a respected voice for adult children of aging parents. Since facing her own mother’s health/life crisis in 2008, Dale has established herself as a voice of reason, as she has traveled around the country from the Midwest to Atlanta, through Florida and New York City. She shares her message of how to approach any change or crisis in your aging parent’s life with clarity and confidence. Since immersing herself with authors and experts in the field of gerontology, she has expanded her reach to adult children across this country. She wants to now show you how to guide your aging parent(s) so they can thrive and find joy in every stage of their life.

The Caregiver’s Voice

Founded in 1998 by Brenda Avadian, MA, TheCaregiversVoice.com serves family caregivers and professionals who work with adults with cognitive impairment or dementia caused by Alzheimer’s, stroke, related illnesses, or trauma.

CareGiving.com

Denise M. Brown launched CareGiving.com in 1996. The site features the blogs of family caregivers, weekly words of comforts, weekly self-care plans, daily chats, a Community Caregiving Journal, free webinars, and daily chats.

EldercareABC

The ‘ABC’ in EldercareABC stands for ‘About Being Connected’. So come in, get connected and have your say about what information you need. Most importantly discover a group of people that are here to support you and who you can support in your own way.

eCareDiary

eCareDiary is a web community created based on the founders experiences as caregivers for their parents who were diagnosed with chronic illnesses such as Parkinson’s, Type II diabetes, and dementia. Having backgrounds in the healthcare system, they found coordinating long term care to be difficult and frustrating because of the lack of good resources available online. They created eCareDiary.com as a centralized place to help families with care coordination by offering comprehensive online tools, expert content, and resources.

DailyCaring

DailyCaring is for the 43.5 million adult family caregivers who care for someone 50+ years of age. They’re perfect for family caregivers who use the Internet to find solutions for day-to-day challenges, help with important care decisions, and advice on how to plan for the future. They also cater to help professionals in the aging care industry.

Caregiving for Parents Made Easy

Caregiving for Parents Made Easy is a site designed to give you some tips and tricks for navigating the caregiver role. If you’re new to caregiving, this site provides places to turn for caregiving resources, as well as general resources for older adults.

Caringvillage.com

Caring Village is a caregiving assistance platform that makes caring for an older loved one safer,easier, and less stressful. The Caring Village suite of easy-to-use mobile apps, interactive dashboard, and marketplace allows families to easily communicate, collaborate and coordinate caregiving activities for their loved ones. With insightful content and preparedness checklists, Caring Village helps provide you with all the information you need to be the best Caregiver you can be.

via The Top 10 Caregiving Blogs for Caregivers – Caring Village

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

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

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

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

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

1. No Two TBI’s Are the Same

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

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

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

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

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

3. There Are Some Very Common Deficits after a TBI

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

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

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

4. There is No Time Threshold for Recovery

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

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

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

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

6. BEWARE of Overstimulation

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

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

7. Balance Pushing Yourself and Allowing Down Time

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

8. Physical Fatigue

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

9. You Will Be Living with an Invisible Injury

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

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

10. Accepting the new normal

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

Bonus: Give Yourself Time to Grieve

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

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

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

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

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

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

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

 

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

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[QUOTATION] EVERYONE MUST CHOOSE ONE OF Two PAINS: THE PAIN OF DISCIPLINE OR THE PAIN OF REGRET

Relationships Quotes Top 337 Relationship Quotes And Sayings 67

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[WEB SITE] Study Sheds Light on ‘Ableism’ Biases Toward People with Disabilities

ableism

Biases toward people with disabilities, known as “ableism,” tend to increase with age and over time, but people are less likely to show how they really feel publicly, researchers from Michigan State University suggest.

“Disabilities are a sensitive, uncomfortable topic for many people to talk about. Few are willing to acknowledge a bias toward people with disabilities,” says William Chopik, MSU assistant professor of psychology and senior author of the study, published recently in Journal of Social Issues.

“Because this is so understudied, the goal of our research was to characterize why – and which types of – people hold higher biases against those with disabilities.”

The research included data from 300,000 participants gathered over 13 years. Participants ranged from 18- to 90-years-old, and 15% classified themselves as having a disability.

Authors Jenna Harder, Victor Keller and Chopik used data from Project Implicit, a platform that allows users to learn and measure biases anonymously. The platform defined a disability as “some sort of physical, mental or emotional limitation” and asked a series of questions measuring feelings about people with disabilities.

The researchers also measured how much contact participants had with the disability community using a scale of one to seven, one being “knowing someone” and seven being “having constant contact” with a person with a disability, a media release from Michigan State University explains.

The researchers used the surveys to measure implicit attitudes and explicit bias.

An implicit attitude, Harder explains, are thoughts or feelings that happen automatically, which are hard to control, suppress or regulate. Explicit attitudes, she says, are the things people consciously agree with and are more controllable because it is how people express or portray their opinions about something publicly. One can think through what they are about to say and filter themselves if necessary, she adds.

The researchers suggest that implicit bias from respondents increased over time and with age, meaning that they had less-favorable feelings toward people with disabilities. But, when asking explicitly how much participants preferred people with disabilities to be abled, they shared more positive responses with time and age, meaning that they outwardly portrayed positive opinions about people with disabilities, per the release.

“This is a big mystery because people outwardly say they feel less biased, but in actuality the implicit attitude has been getting stronger as time goes on,” Chopik comments. “It’s not popular to express negative opinions about people with disabilities, so perhaps they feel inclined say nicer things publicly instead. Changes in explicit attitudes do not always lead to changes in implicit prejudice – sometimes becoming more aware of a prejudice might increase implicit prejudice.”

The findings also reveal that women felt less implicit bias, and that people who had contact with the disabled population had lower prejudice.

“Some of our findings related to women align with stereotypes: when you look at how men and women compare on bias, women are more compassionate toward stigmatized groups,” Harder says.

“Gender was one of the most consistent predictors in this study, supporting theories that women are particularly receptive to people who they perceive as needing help.”

Chopik explains that lower prejudice from people who had contact with disabled people was consistent with theories related to interactions with other stigmatized groups.

“As you interact more with a stigmatized group, you can potentially have more positive experiences with them, which changes your attitudes,” he comments. “You start with a certain bias, but over time those biases are challenged and your attitude changes because you have the chance to develop positive associations with the group and see them in a different light.”

Data gathered from disabled participants showed feelings of warmth among their own community and a more positive attitude toward their peers. The more visible a disability – like needing a wheelchair or a walker – the stronger the positive attitude toward the disability community was.

Chopik emphasized the lack of research on ableism and hopes to encourage more participation from academia, the release continues.

“There’s a broader goal of increasing inclusion and reducing prejudice and bias toward people with disabilities,” Chopik concludes. “I think we all want to live in a society where people feel welcome and not be constricted in doing things, and there are plenty of ways to try to change and challenge that by rethinking policies and making our everyday lives more accessible.”

[Source(s): Michigan State University, EurekAlert]

 

via Study Sheds Light on ‘Ableism’ Biases Toward People with Disabilities – Rehab Managment

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[WEB SITE] Will a robot look after you one day?

This is not a theoretical question. Robots are already widely used as “carers” in Japan, while the UK and other Western countries have rapidly ageing populations. In the UK, an average of 900 care workers per day are leaving the profession due to low wages and tough conditions and there is a severe lack of new care workers.

Enter the robots. The use of robotics and other technologies could help to alleviate these ever-increasing pressures by reducing staffing costs and relieving human carers of the physically demanding or more menial tasks, freeing up their time for face-to-face care of patients. Japan’s robot strategy claims that: “Robots will help release humans from cumbersome tasks and enrich interaction for a higher quality of life than ever.”

The potential is huge, and exciting. Robots, or robotic devices, can provide three types of assistance: physical, social and cognitive.

Physical assistance
One of the most strenuous tasks for carers, which they must do regularly, is lifting a patient from a bed into a wheelchair, which can quickly become a cause of lower back pain. ‘Robear’ is an experimental bear-shaped robot that lifts and carries elderly or frail patients from beds into wheelchairs, or into the bath.

‘Stevie’ is designed to look a bit (but not too much) like a human, with arms and a head but also wheels. This helps people realise that they can speak to it and perhaps ask it to do things for them, such as reminding them to take medication or turn off an oven. A room sensor on ‘Stevie’ can detect if someone has fallen over and a human operator can then take control of it to investigate the event and perhaps contact emergency services.  ‘Stevie’ can also regulate room temperatures and light levels to help to keep the user comfortable.

Then there is ‘Rex’, a robot for rehabilitation that can help people with multiple sclerosis or other neurological conditions to stand and to walk .

These are just examples of how robots can enable people to stay in their homes for longer rather than going into residential care. They can prevent hospitalisation through falls and can help keep people healthier for longer. And by doing the more mundane tasks of caring, robots can reduce social care costs and free up staff to do more personal caring.

‘Stevie’ deliberately only has a few human-like features, however ‘Chihira’ the robot very closely resembles a Japanese woman. ‘Chihira’ has been developed to do physical work with elderly people with conditions including dementia, but its human likeness is unsettling and raises interesting questions. Do all patients know they are dealing with a robot? Does the human likeness mean dementia patients are being deceived by a machine in some way? Or will it help dementia patients feel they have real company and help – a type of social assistance?

Social assistance
Robots can do more than simply detect and prevent falls, they can provide companionship and social engagement, monitor and improve wellbeing, or even help educate preschool children.

Paro’ a fluffy white robot seal is being integrated into care homes in the UK as a therapeutic intervention for people with dementia and learning disabilities. Pet therapy is widely used, so the idea of a robot pet is an obvious step. Research has shown that ‘Paro’ lessens stress and anxiety, promotes social interaction, facilitates emotional expression and improves mood and speech fluency.

Pepper’ is a widely used humanoid robot able to communicate at a very basic level with simple gestures. Cameras on ‘Pepper’ have shape-recognition software and microphones, allowing ‘Pepper’ to decipher voice tones and expressions in order to determine if people are happy. So in a residential home ‘Pepper’ can patrol around and seek out people to talk to. ‘Pepper’ has been trialled in Southend care homes already.

MiRo’ is another ‘pet’ robot, this time resembling a rabbit or small dog, specifically designed to engage emotionally with people, to combat loneliness and to offer reminders for tasks such as taking medicine.  The ‘Giraff ‘ robot developed at the University of Lincoln monitors the health of elderly people living alone, or those with dementia, and allows them to have contact through a screen with carers or family and friends. It has been trialled in isolated communities and homes in Scotland.

Some robots, with human features, have been designed to help children with autism who find it difficult to read emotions and interpret behaviour, by helping them to socialise and communicate. Probably best known is the child-sized ‘Kaspar’ robot, helping children to understand which tactile behaviours are socially acceptable and which are more inappropriate. ‘Kaspar’ effectively provides basic cognitive assistance.

Cognitive assistance
A doll-type robot, nodding ‘Kabochan’, has been found to improve users’ cognitive function and mental health in research trials in Japan.  Virtual robots have been successfully used to assess the cognitive abilities of children while ‘Zora’ has been shown to help the cognitive and communication skills of children with severe physical disabilities.

The benefits of robots are undoubtedly many and the push for their use in social and nursing care is powerful, but what are the costs?

Counting the cost
Currently, robots are expensive, which may present a practical barrier to their wider use in social care. However, they are still cheaper than people and can work 24 hours a day without contracts or complaining, and the outlay costs will fall over time.

So, what are other costs?  We can still only guess at this stage but here are some questions that need asking:

  • Will robots give us an excuse to palm off human care and interaction to machines? Will they make the next generation of older people more independent or more isolated?
  • Will the quality of social care diminish, or can robots fulfil the social and emotional needs of vulnerable care recipients?
  • Does mimicking the human form and actions deceive or help the elderly or patients with dementia? Or children with autism?
  • Will robots like Roho in Japan take over aspects of childcare? What do we think of our children making ‘friends’ with robot humanoids or robot pets?
  • What about autonomy, privacy, security and legal and regulatory concerns (such as the legal liability for decisions made by robots)? Or the risk of malicious hacking or cyber-attacks?
  • Who controls robots? What if a manufacturer or user (or a technical support engineer) creates or changes settings that move the robot’s behaviours outside of an ‘ethical envelope’?
  • What is the ethical governance of robots and their actions and purpose? Is any needed? Could we even create ‘ethical’ robots if we wanted?

Underneath all these questions lie the bigger ones on human dignity, care and community. Robots of the future will undoubtedly be able to perform many of the more basic, tedious and strenuous physical tasks currently done by humans. But human intervention will continue to be fundamental. There will always be a need for the calm, reassuring, empathetic, compassionate and caring bedside interactions and decision-making of professional humans, particularly when it comes to caring for patients, young and old, with complex needs. The high degree of social and emotional human intelligence is still beyond machines, and always will be.

The designer of ‘Stevie’ says:

None of this will mean we won’t need human carers anymore. Stevie won’t be able to wash or dress people, for example. Instead, we’re trying to develop technology that helps and complements human care. We want to combine human empathy, compassion and decision-making with the efficiency, reliability and continuous operation of robotics.’

Right now, the extent to which robotic innovations will assist or replace humans in the future remains unknown.

However, we must not allow inauthentic relationships with robots to replace human relationships or undermine human value or dignity in any way. The Bible is clear that we are made for relationships, first to God through Jesus Christ and then to each otherThe Bible teaches human interdependence.  A machine can never meet the emotional and spiritual relational needs of elderly citizens, patients or children, nor indeed any human.

It may seem obvious, but robots are not humans and humans are not robots. While robots may bring many benefits, any blurring of either of these boundaries may dangerously diminish the dignity and value that being made in God’s Image gives to every human being. We need to tread the path ahead carefully and wisely.

Philippa Taylor is Head of Public Policy at CMF. She has an MA in Bioethics from St Mary’s University College and a background in policy work on bioethics and family issues. Republished from the CMF blog with permission.

 

via Will a robot look after you one day?

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

By Bill Herrin

TBI can make you feel isolated

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

It’s hard work

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

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

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

— Jill Bolte Taylor, Ph.D., Neuroanatomist

The Key is Incremental Strategy

Follow your heart...and find progress.

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

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

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

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

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

Believe.

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

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

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

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

— Janelle Breese-Biagioni

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

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

Work to make good things happen.

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

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

Root for the Home Team…YOU!

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

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

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

Amen to that!

 

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

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

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[BLOG POST] MUSIC by Survivors/Caregivers

HOPE TBI

MUSIC by Survivors/Caregivers

Hope Survives – Cristabelle Braden

Into The Free – Lori Conti

Invisible – by Scottish Head Injury Music Support Group

Just Can’t Move On – Adrian Torbenson

Post Concussionist – A song about Traumatic Brain Injury – Vera Quijano

We’re Gonna Make It – Brain Injury Awareness Music Video – Cristabelle Braden

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[Review Article] Rehabilitation Technology: Assistance from Hospital to Home – Full Text

Abstract

Rehabilitation is essential for disabled people to achieve the highest level of functional independence, reducing or preventing impairments. Nonetheless, this process can be long and expensive. This fact together with the ageing phenomenon has become a critical issue for both clinicians and patients. In this sense, technological solutions may be beneficial since they reduce the costs and increase the number of patients per caregiver, which makes them more accessible. In addition, they provide access to rehabilitation services for those facing physical, financial, and/or attitudinal barriers. This paper presents the state of the art of the assistive rehabilitation technologies for different recovery methods starting from in-person sessions to complementary at-home activities.

1. Introduction

According to the World Health Organization (WHO), about 15% of the world’s population suffers some form of disability. Due to the ageing phenomenon and the prevalence of chronic diseases such as epilepsy, cancer, or mental health disorders, this percentage has incessantly increased. This fact leads to a growing demand for rehabilitation services since they play an important role in enhancing functioning, reinforcing the person’s autonomy, and improving the patient’s quality of life [12]. This demand far exceeds availability in terms of rehabilitation professionals (i.e., occupational therapists, physiotherapists, and speech therapists) such that the density of those professionals is greatly below the threshold required for providing adequate services (approximately a tenth of that required) [34]. Additionally, different barriers like low-income deny the access to the rehabilitation services required to live in health, comfort, and dignity. These deficiencies could be overcome with technology, reducing the need for formal support services, the time and physical burden for caregivers, and, consequently, their cost [56].

In this context, the key to technology success depends on its functionality and adaptability to the user’s needs and environment. However, rehabilitation is a broad concept covering a wide range of responses to disability. Generally speaking, rehabilitation can be defined as the step-by-step process designed to reduce disability and to optimise functioning in individuals with health conditions, enabling them to better interact with their environment. For that, rehabilitation commonly includes three aspects:(i)Physical, to regain strength, mobility, and fitness(ii)Occupational, to relearn the person’s daily activities(iii)Speech-language, to recover communication skills (i.e., speaking, understanding, reading, or writing)

The duration of the rehabilitation can vary depending on several factors such as the patient’s impairment level, the therapy intensity, or the individual activity and participation. For that reason, new ways without compromising patient wellbeing have been proposed. So, three different modalities can be found in the literature: (1) the in-person rehabilitation, where patients performs their program in presence of a therapist in an inpatient facility; (2) the combined in-person and at-home rehabilitation, where in-person rehabilitation takes place in an outpatient facility and is aided with at-home programs such that patients perform some therapeutic exercises prescribed by the clinician at home; and (3) the at-home rehabilitation, suitable for those requiring minor assistance or support, where a tailored therapy takes place entirely at home.

Focusing on the individual’s functioning, the technological solutions developed up to date have mainly aimed to physical recovery since mobility plays a main role in the independence and confidence of disabled people. More recently, research in occupational rehabilitation has emerged in response to Alzheimer’s disease and neurocognitive impairments.

This paper addresses the state-of-the-art assistive technologies for rehabilitation from the hospital to in-home programs. Despite its great importance in disabled people recovery, devices designed to replace the impaired limb (e.g., prosthetics and artificial limbs [78910] or smart wheelchairs [111213]) are not covered in this work.

2. In-Person Rehabilitation

One application of technology can be found as a support tool in the rehabilitation process. They help clinicians evaluate quantitatively the patient’s performance and progress while providing consistent training, specially for extended periods of time. This results in an increase in therapy access and a health-care cost reduction.

In this sense, Robotics has met this demand with a wide range of assistive products. For example, Andago [14] is a tool for overground gait training, bridging the gap between treadmill-based and free walking. With this technology, the patient’s fear of falling is considerably reduced while therapists focus on the therapy since they do not have to secure the patient. In a similar way, the G-EO System [15] assists therapists in patient’s motor recovery and, more specifically, in teaching patients walking again. Unlike the previous system, G-EO moves the patient’s legs when necessary to help the patient’s brain form new neuroplasticity pathways to replace the ones damaged by injury or disease. Kim and Deshpande presented in [16] HARMONY an upper-body robotic exoskeleton for rehabilitation. This exoskeleton provides natural coordinated motions on the shoulder for patients suffering from spinal and neurological injuries, including a wide range of motion and controllability of force and impedance. Several devices have been also developed for hand rehabilitation (e.g., [17181920]).

Although these robotic devices aid therapists in providing effective repetitive training and quantitative evaluation of patient’s progress, it is necessary to integrate any mechanism that makes rehabilitative exercises fun, challenging, and engaging. In this context, virtual reality (VR) and video game can fill the gap. That is, computer-based programs designed to simulate real-life objects and events in an attractive environment may engage patients to stage on track. In fact, the use of this kind of systems has been shown to be an effective mean for rehabilitation treatments since they offer clinicians the ability to control and grade tasks to challenge the user while providing them with an enriched environment to achieve high user’s engagement [2122].

From this starting point, a treadmill can be combined with VR technology. This is the case of C-Mill [23], a treadmill developed to train and assess patient’s gait and balance for a safe daily walk. It comes in three models: C-Mill, C-Mill VR, and C-Mill VR+ (Figure 1). Although he VR and VR + models use VR elements to stimulate and challenge patients, their final goal is different. That is, the C-Mill VR is aimed at training automated movements and dual tasking, whilst the C-Mill VR+ is a comprehensive solution for early to late rehabilitation with balance and body weight support.[…]

 

Continue —> Rehabilitation Technology: Assistance from Hospital to Home

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[BLOG POST] Intentional Living After TBI – Brain Injury Blog

Intentional Living After TBI

Finding your way after a stroke, ABI, MBI, TBI, Concussion, and related conditions is uncharted territory in every sense of the word. Intentional living not only defines the attitude that will help you work toward improvement, it also defines how you will continue to live going forward.

For every case that takes a definitive route, and a measurable outcome, others can spend a lifetime making even a portion of headway that others may achieve.

When anyone claims to know the way, it’s only because that’s the way that works for them. There’s no other way to say it. Rehabilitation after a TBI (no matter what variety) is always on a case-by-case basis, with progress being made according to many variables and factors.

Cognitive rehabilitation should be left to professional clinicians, and follow-up cognitive growth can be an independent venture – and best if applied in line with your doctor’s overall plan. I’ll be excerpting some information from the book “Brain Injury – It is a Journey” that is an excellent resource for families of TBI survivors that are helping someone they love to begin their journey.

*In the book, there are tons of resources, but one of the most poignant points are in these simple checklists:

Changes After Brain Injury

Changes in a person after a brain injury depend on which areas of the brain are affected and the severity of the injury. Use these lists to check mark affected areas.

These will change over time as the person progresses. Possible consequences of a brain injury includes:

Physical consequences

– Headaches

– Seizures

– Muscle spasticity

– Weakness or paralysis

– Balance and coordination difficulties

– Changes in vision or hearing

– Loss of smell or taste

– Difficulty swallowing

– Changes in appetite

– Increased sensitivity to smells, light or sound

– Changes in sensitivity to touch

– Fatigue, increased need for sleep

– Changes in sleep patterns

 

Cognitive (thinking and learning) consequences

– Amnesia

– Short-term memory loss

– Long-term memory loss

– Slowed ability to process information

– Difficulty organizing and planning ahead

– Poor judgment

– Inability to do more than one thing at a time

– Lack of initiating or starting activities

– Easily distracted

– Disoriented or confused to surroundings

– Shorter attention span

– Repeatedly says or thinks same thing

 

Communication consequences

– Slurred or unclear speech

– Difficulty finding the right word

– Difficulty staying on topic

– Trouble listening

– Dominating conversations

– Difficulty reading

– Rate of speech too fast or too slow

– Things taken too literally

– Difficulty understanding what is said

 

Emotional/Behavioral consequences

– Increased anxiety

– Depression

– Self centered behavior or thinking

– Easily irritated, angered or frustrated

– Overreacts, cries or laughs too easily

– Different sexual behavior

– Impulsive, acts or talks without thinking

– Mood swings

– Stubbornness

– Dependent or clinging behavior*

[…]

more —>  Intentional Living After TBI – Brain Injury Blog With Free TBI Information

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[Abstract] Acceptance of Tele-Rehabilitation by Stroke Patients: Perceived Barriers and Facilitators

Abstract

Objective

To explore the perceived barriers and facilitators of tele-rehabilitation (TR) by stroke patients, caregivers and rehabilitation therapists in an Asian setting.

Design

Qualitative study involving semi-structured in-depth interviews and focus group discussions.

Setting

General community.

Participants

Participants (N=37) including stroke patients, their caregivers, and tele-therapists selected by purposive sampling.

Interventions

Singapore Tele-technology Aided Rehabilitation in Stroke trial.

Main Outcome Measures

Perceived barriers and facilitators for TR uptake, as reported by patients, their caregivers, and tele-therapists.

Results

Thematic analysis was used to inductively identify the following themes: facilitators identified by patients were affordability and accessibility; by tele-therapists, was filling a service gap and common to both was unexpected benefits such as detection of uncontrolled hypertension. Barriers identified by patients were equipment setup–related difficulties and limited scope of exercises; barriers identified by tele-therapists were patient assessments, interface problems and limited scope of exercises; and common to both were connectivity barriers. Patient characteristics like age, stroke severity, caregiver support, and cultural influence modified patient perceptions and choice of rehabilitation.

Conclusions

Patient attributes and context are significant determinants in adoption and compliance of stroke patients to technology driven interventions like TR. Policy recommendations from our work are inclusion of introductory videos in TR programs, provision of technical support to older patients, longer FaceTime sessions as re-enforcement for severely disabled stroke patients, and training of tele-therapists in assessment methods suitable for virtual platforms.

via Acceptance of Tele-Rehabilitation by Stroke Patients: Perceived Barriers and Facilitators – Archives of Physical Medicine and Rehabilitation

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