Posts Tagged Caregivers

[WEB SITE] 10 things not to say to someone with a brain injury

10 things not to say to someone with a brain injury

 But you don’t look disabled!

Living with a brain injury presents a wide range of challenges, but one of the most difficult things for many survivors is the lack of understanding from the people around them.

Because of this, people with a brain injury often face comments from well-meaning family members, friends and strangers that only add to the frustration of living with a complex and often invisible condition.

To help address the problem, we asked our members to share their experiences of this and, judging by the responses we received, it’s clear this is an issue many people face! Here’s the top ten list of things not to say to someone living with a brain injury…

I know what you mean…I’ve got a terrible memory too!

For people who don’t have a brain injury, it can be difficult to imagine the reality of living with a memory problem. After all, we all forget things, but an injury to the brain can stop memories being stored and/or retrieved, meaning people genuinely can’t remember. Being forgetful and having memory problems as a result of brain injury are worlds apart!

Despite the best intentions, saying things like ‘I have a terrible memory too’ risks showing a lack of understanding and can come across as patronising and offensive.

But you don’t look disabled…

Brain injury is often referred to as ‘the hidden disability’ because the cognitive, emotional and behavioural effects can still be present long after any physical injuries have healed.

Don’t assume that just because someone looks fine on the outside, they’re not experiencing long-term effects. Comments such as: ‘It doesn’t look like there’s anything wrong with you’ and ‘But you’re better now, aren’t you?’ are unlikely to help!

Move on and stop dwelling on what happened.

One to avoid at all costs! The effects of a brain injury can last for weeks, months, years, or even a lifetime. Improvements may happen through the natural healing process, rehabilitation, hard work or a combination of these, but a person can’t simply decide to ‘get better’ and move on.

Encouragement and support are the best ways you can help people maximise their recovery after brain injury.

You should be back to normal by now.

Two big problems with this one!

Assessing the effects and likely outcomes of a brain injury challenges even the most experienced doctors, so receiving this advice is likely to result in an angry response. Yes, the injury may have occurred ‘a while ago’, but the recovery process is different for everyone and for some people the effects of a brain injury may last a lifetime.

At the same time, the word ‘normal’ can inadvertently cause offence. What is normal? Suggesting a person is not ‘normal’ again could lead to feelings that they are somehow inferior.

For someone living with a long-term condition, that’s not nice to hear!

You’re tired? At your age?!

A surprising number of people experience comments along these lines. Fatigue is a very real and very debilitating effect of a brain injury, but because it’s often almost completely invisible, it’s perhaps understandable that people don’t immediately pick up on the difficulties it can cause.

Living with fatigue is very different to the normal feeling of tiredness we all experience at the end of a busy day. It requires careful management and the support and understanding of friends, family and colleagues.

It’s all in your mind!

A brain injury does affect the mind, but unfortunately not in a way that means a person can just decide to get better. Damage to the brain cannot be repaired, and any recovery is a result of the brain adapting to change and finding new ways to work.

This isn’t something that can be controlled by simple conscious thought so there’s little more frustrating for a person with a brain injury than being told to ‘snap out of it’!

Chin up – there’s always someone worse off.

This common line is certainly well-meaning, with a clear intention to make the person with a brain injury feel better about their situation and encourage positive thinking.

But when dealing with everyday fatigue, memory problems, difficulty concentrating or anything else from the long list of brain injury symptoms, it doesn’t always help to know that some people are dealing with worse.

Instead of saying ‘It could’ve been worse’, a better approach might be simply to acknowledge their difficulties, offering help if it’s needed.

Are you sure you should be doing that?

An essential part of the rehabilitation process is relearning lost skills by pushing yourself to do challenging tasks. It’s often better to give things a go than simply accept defeat, so having your ability judged by someone else can be extremely frustrating. It’s great to offer help and support in case the person with a brain injury can’t manage a task, but tread carefully when judging ability.

One of the key aims of Headway is to help people regain as much independence as possible. Brain injury survivors don’t want people to do everything for them – they want help to be able to do things themselves.

I know someone who had a brain injury and they’re fine now.

This comes down to something many people don’t understand – no two brain injuries are the same! Even two people with very similar injuries may experience totally different effects, and while it can be a motivation to hear of other people making good progress, it certainly isn’t helpful to be judged for not recovering as quickly as them.

But you were able to do that yesterday…

People who say this don’t realise the fluctuating nature of a brain injury, which is often down to fatigue. In some cases it can be because they did a task yesterday that they can’t today.

Pushing too hard after a brain injury can cause difficulties for hours or even days afterwards, and this is a time when support and understanding is needed more than ever.


via 10 things not to say to someone with a brain injury | Headway


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

By Bill Herrin

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

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

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

Making The Holidays More Positive

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

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

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

A Little Empathy Goes A Long Way…

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

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

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

Some Suggestions

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

• Avoid alcoholic drinks (especially when using medications)

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

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

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

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

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

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

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

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

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

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

In closing…

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

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


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

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[WEB PAGE] I’m clawing my way back from a brain injury, so please be patient


First Person is a daily personal piece submitted by readers. Have a story to tell? See our guidelines at

I was 35 years old when the inoperable arteriovenous malformation (AVM) in my brain was first diagnosed.

After years of headaches and cervical pain (which I later found out were small cerebral hemorrhages), and after years of being told by doctors that I suffered from stress headaches, migraines and poor coping skills, the undiagnosed vascular grenade in my head finally blew.

I lost the feeling and movement on the left side of my body, and the vision in my left eye doubled – I saw two of everything. I lost my balance and my co-ordination. It was a hard thing for a previously healthy young woman – a mother, nurse, wife and go-getter – to deal with.

Time, rehabilitation, physiotherapy, a lot of sweat and tears … those losses all came back – maybe not as good as they had once been, but they came back.

That was 18 years ago. A lot has happened since then.

I hear voices, but I am learning to ignore them

Running nearly killed me, but it also saved my life

Over the years, as I experienced repeat bleeding, endured radiation and battled brain swelling, I lost and rebuilt many many things.

I lost my career (I was a military nursing officer), my husband to divorce, my confidence – and more than just a little bit of who I was.

Brain injury is a thief. A silent and invisible thief.

When the brain is first injured, little thought is given, in those first crisis stages, to feelings. There is just no time to worry about the emotional when the fight is on to save brain function.

However, in my all-too-informed opinion, the emotional fallout of brain injury can be just as important as the physical in the long run.

I don’t presume to speak for everyone. More than any other organ, the brain remains a mystery; it’s unique to each person. Some brain-injury survivors suffer no deficits at all, others simply never come back. And some, like me, get stuck somewhere between who we once were and who we are eventually going to be.

The first thing I want people to know is that I am still here. No, I am not the same. I have lost pieces of myself. I may never again be exactly who I was and who you knew, but I am still here.

I am still me.

I am, I have to admit, a little slower than I was. My processing speed is seriously messed up. I will no longer be the nurse who can juggle multiple patients or the mother who can hike and bike and keep up with her two busy sons. But I will always have that deep need to help others that all nurses have, and I will always love my sons and family as I always have.

Those parts of me remain.

So, have patience with the slower me. And have patience with the tired me.

Of all of the things that have proven unbeatable and intractable on this long journey is the fatigue. It is pathological and relentless and well … embarrassing. If you catch me napping in the afternoon (and I now must do so almost every afternoon), please do not go out of your way to make me feel lazy or indulgent. My brain – energy suck that it is – is simply working overtime, rewiring and rerouting signals; doing whatever a brain must do when its normal pathways have been obliterated.

I also ask that you forgive the new unpredictable me.

I will have good days and I will have bad days. There are days when I won’t answer the phone and days that an unexpected headache will send me into hiding. I will inevitably cancel plans. I will skip an appointment or bail on lunch or refuse an invitation.

Please, don’t take it personally.

I now have a hair-trigger head. Sometimes, it seems that any little thing can set it off. The weather can be my enemy, a certain type of food, too much activity.

With all that my poor brain went through, I now have to deal with this thing called “flooding” – which I’ve since learned is a common brain injury outcome for those like me. My normal brain filters are all but fried and can no longer muffle or regulate incoming (or outgoing, unfortunately) information as it once did. Too much noise, too many lights, too many people, too much anything is all amplified in my head. Too much unregulated input can all too quickly turn into a roar, a buzz that will shut me down, make me stutter and become so overwhelming that I can’t find words, I mess up and I lose things.

So please, don’t rush me.

Sit down and join me in my quiet, now slower world. I am good in the quiet – deserted beaches are my happy place – and still quite social when there are only one or a few people to interact with.

I may not always be able to join you in your world, but I do hope that you will choose to join me in mine every once in a while. For, while it may not be as exciting or as busy as yours, this is where you will find me – a little broken, perhaps, and with a few pieces missing – but you will find me.

I’m still here.

Brenda Lloyd lives in Frankford, Ont.

via I’m clawing my way back from a brain injury, so please be patient – The Globe and Mail

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[QUOTATION] Caregivers

Η εικόνα ίσως περιέχει: κείμενο

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[BLOG POST] 38 Ways to Relieve Stress Quickly

38 Ways to Relieve Stress Quickly

We all experience stress – sometimes a lot and sometimes not so much. Stress, your body’s reaction to change, can be related to positive changes like starting a new job or having a baby. But usually, when we talk about stress, we mean distress. This type of stress overwhelms your ability to cope and when it’s chronic or intense it can negatively affect your health, relationships, and emotional wellbeing.


Recognize the signs of stress

Stress, like many things, is easier to deal with when we catch it early. So, being aware of how stress shows up in your body and mind means you can use stress-relieving strategies before your stress gets out of control.

Common symptoms of stress include:

  • Irritability or anger
  • Headaches
  • Gastrointestinal issues (stomach aches, constipation or diarrhea, etc.)
  • Insomnia or trouble staying asleep
  • Excessive worrying
  • High blood pressure
  • Rapid heart rate
  • Grinding your teeth
  • Muscle tension (stiff/sore back and neck are common)
  • Lack of sex drive
  • Pessimistic thoughts
  • Fatigue
  • Forgetfulness
  • Trouble concentrating
  • Feeling overwhelmed

You may also find it helpful to identify situations that you regularly find stressful (such as meeting with your boss) and behaviors that you engage in when you’re stressed (such as overeating or biting your nails).

Ways to relieve stress in 10 minutes or less

Below, you’ll find a list of simple and quick ways to relieve stress. These are particularly helpful for acute stress and aren’t intended to be the solution to chronic or intense stress.

  1. Listen to your favorite music
  2. Get some fresh air
  3. Stretch or do some yoga poses
  4. Do a grounding exercise
  5. Disconnect from technology
  6. Talk to someone supportive
  7. Meditate
  8. Look at photos that make you smile
  9. Squeeze a stress ball
  10. Read for pleasure
  11. Walk, bike, or skateboard around the block
  12. Count to 10 slowly and repeat
  13. Dance
  14. Journal
  15. Write down 10 things you’re grateful for
  16. Doodle, draw, color, or Zentangle
  17. Chew a piece of gum
  18. Watch a funny video on YouTube
  19. Punch a pillow
  20. Slow, deep breathing (I like the “breathe bubble on the Calm app.)
  21. Read an inspirational quote
  22. Spend time with your pets
  23. Do 20 jumping jacks
  24. Do something nice for someone else
  25. Sit in the sun
  26. Visualize a safe, comforting place
  27. Pick some flowers (or pinecones or leaves or seashells or rocks)
  28. Give yourself a neck massage
  29. Take a shower
  30. Kick a soccer ball
  31. Diffuse essential oils or use scented lotions or candles (Bergamot, lavender, and yuzu are a few to try.)
  32. Tend your garden; water and talk to your plants
  33. Hug a loved one
  34. Knit
  35. Savor a cup of decaffeinated tea or coffee
  36. Repeat a mantra
  37. Do a progressive relaxation exercise 
  38. Make a list of your worries and identify which you can do something about

Make your own list of ways to relieve stress

When you’re feeling stressed or anxious, it can be hard to think of effective, healthy coping strategies. Having a list of stress-relieving activities at hand can be very helpful. This way, you’re ready whenever your stress level spikes.

I find it’s helpful to have a variety of stress management strategies. You will need to use different strategies when you are at work, school, or home. Sometimes you have more time and other times you are limited. And, of course, we have personal preferences and all find different strategies more or less helpful.

To get started, you can choose a few of your favorite ideas from the list above, write them down, and add or subtract ideas as you try them.

You can also print a PDF of my 38 ways to de-stress quickly and hang it on your refrigerator or bathroom mirror. You want to have healthy coping strategies readily available, so you don’t have to think too much about it when stress is at hand. The more you practice them, the more automatic they will become.

This PDF is available as part of my free resource library. To access 30 free emotional wellness worksheets, tips, and articles, just sign-up HERE for my weekly updates and free resources.


via 38 Ways to Relieve Stress Quickly | Happily Imperfect

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[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. 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, serves family caregivers and professionals who work with adults with cognitive impairment or dementia caused by Alzheimer’s, stroke, related illnesses, or trauma.

Denise M. Brown launched 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.


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 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 as a centralized place to help families with care coordination by offering comprehensive online tools, expert content, and resources.


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.

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


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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