9 things NOT to say to someone with a #BrainInjury, #ABI or #Stroke @fightingstrokes

A bit extra from me as this has post had over 700 Facebook shares on my very popular 1st blog – Arockystrokerecovery – so we must all be feeling the same!!

Which is why my 3rd book – I Am Still The Same (Ebook NOV 2014) will be a practical self-help God send for all stroke survivors and brain injured people. (I hope)

Please also take a look at ‘Running Free’ (Amazon) for some practical advice, based on my own horrific brainstem stroke experience with locked in syndrome. It’s internationally published and also hugely inspiring for ANYONE.’

Kate Allatt voluntary CEO Fighting Strokes
Internationally published author.
Twitter @kateallatt

SOURCE: http://strokerevelations.com/9-things-not-to-say-to-someone-with-a-brain-i-44952

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Brain injury is confusing to people who don’t have one. It’s natural to want to say something, to voice an opinion or offer advice, even when we don’t understand.

And when you care for a loved one with a brain injury, it’s easy to get burnt out and say things out of frustration.

Here are a few things you might find yourself saying that are probably not helpful:

1. You seem fine to me.
The invisible signs of a brain injury — memory and concentration problems, fatigue, insomnia, chronic pain, depression, or anxiety — these are sometimes more difficult to live with than visible disabilities. Research shows that having just a scar on the head can help a person with a brain injury feel validated and better understood. Your loved one may look normal, but shrugging off the invisible signs of brain injury is belittling. Consider this: a memory problem can be much more disabling than a limp.

2. Maybe you’re just not trying hard enough (you’re lazy).
Lazy is not the same as apathy (lack of interest, motivation, or emotion). Apathy is a disorder and common after a brain injury. Apathy can often get in the way of rehabilitation and recovery, so it’s important to recognize and treat it. Certain prescription drugs have been shown to reduce apathy. Setting very specific goals might also help.

Do beware of problems that mimic apathy. Depression, fatigue, and chronic pain are common after a brain injury, and can look like (or be combined with) apathy. Side effects of some prescription drugs can also look like apathy. Try to discover the root of the problem, so that you can help advocate for proper treatment.

3. You’re such a grump!
Irritability is one of the most common signs of a brain injury. Irritability could be the direct result of the brain injury, or a side effect of depression, anxiety, chronic pain, sleep disorders, or fatigue. Think of it as a biological grumpiness — it’s not as if your loved one can get some air and come back in a better mood. It can come and go without reason.

It’s hard to live with someone who is grumpy, moody, or angry all the time. Certain prescription drugs, supplements, changes in diet, or therapy that focuses on adjustment and coping skills can all help to reduce irritability.

4. How many times do I have to tell you?
It’s frustrating to repeat yourself over and over, but almost everyone who has a brain injury will experience some memory problems. Instead of pointing out a deficit, try finding a solution. Make the task easier. Create a routine. Install a memo board in the kitchen. Also, remember that language isn’t always verbal. “I’ve already told you this” comes through loud and clear just by facial expression.

5. Do you have any idea how much I do for you?
Your loved one probably knows how much you do, and feels incredibly guilty about it. It’s also possible that your loved one has no clue, and may never understand. This can be due to problems with awareness, memory, or apathy — all of which can be a direct result of a brain injury. You do need to unload your burden on someone, just let that someone be a good friend or a counselor.

6. Your problem is all the medications you take.
Prescription drugs can cause all kinds of side effects such as sluggishness, insomnia, memory problems, mania, sexual dysfunction, or weight gain — just to name a few. Someone with a brain injury is especially sensitive to these effects. But, if you blame everything on the effects of drugs, two things could happen. One, you might be encouraging your loved one to stop taking an important drug prematurely. Two, you might be overlooking a genuine sign of brain injury.

It’s a good idea to regularly review prescription drugs with a doctor. Don’t be afraid to ask about alternatives that might reduce side effects. At some point in recovery, it might very well be the right time to taper off a drug. But, you won’t know this without regular follow-up.

7. Let me do that for you.
Independence and control are two of the most important things lost after a brain injury. Yes, it may be easier to do things for your loved one. Yes, it may be less frustrating. But, encouraging your loved one to do things on their own will help promote self-esteem, confidence, and quality of living. It can also help the brain recover faster.

Do make sure that the task isn’t one that might put your loved one at genuine risk — such as driving too soon or managing medication when there are significant memory problems.

8. Try to think positively.
That’s easier said than done for many people, and even harder for someone with a brain injury. Repetitive negative thinking is called rumination, and it can be common after a brain injury. Rumination is usually related to depression or anxiety, and so treating those problems may help break the negative thinking cycle.

Furthermore, if you tell someone to stop thinking about a certain negative thought, that thought will just be pushed further towards the front of the mind (literally, to the prefrontal cortex). Instead, find a task that is especially enjoyable for your loved one. It will help to distract from negative thinking, and release chemicals that promote more positive thoughts.

9. You’re lucky to be alive.
This sounds like positive thinking, looking on the bright side of things. But be careful. A person with a brain injury is six times more likely to have suicidal thoughts than someone without a brain injury. Some may not feel very lucky to be alive. Instead of calling it “luck,” talk about how strong, persistent, or heroic the person is for getting through their ordeal. Tell them that they’re awesome.

Written by Marie Rowland, PhD, EmpowermentAlly: http://www.brainhealthconsulting.com.

via brainline.org

Posted 1 day ago by Billy Ethridge

An arm recovery stroke advance? @fightingstrokes

Ever since my own discharge from hospital in 2010, I was convinced that electrical stimulation (ES) was in part responsible for helping restore life to my paralysed left arm.

I was sure my totally ‘paralysed-but-with-sensation’ left arm responded well to the experimental ES treatment I received. I believed it actually helped REWIRE my brain.

It got me thinking, ‘Just think if it was offered to all suitable stroke survivors & was applied early, frequently and repetitively enough, then more people could restore arm function post any type of stroke.

ES (not to be confused with functional electric stimulation FES) or a high powered, inexpensive TENS type machines are usually available over the counter and could make a ‘Neuroplasticity difference’ I think.

Furthermore, can ES perhaps reduce pain and contractures too? We need proper stroke recovery initiatives, not just stroke prevention marketing messages.

In the 3.5 years running my charity – Fighting Strokes – I am more convinced than ever by this technology after looking back over all my Facebook comments:

I used TENS (transcutaneous electrical nerve stimulation) on my right arm also as this is my weaker side.’ Allison O’ Reilly, 52 Brainstem Stroke survivor diagnosed and recovered from locked in syndrome.

‘We use a microstim (Oddstock medical) on the arms which has helped.’ Paul Pickford Brainstem stroke and locked in survivor

‘My mum is having it on her forearm and it is helping.’ Steven Cassidy Son of a stroke survivor

‘Husband uses it on his hand and arm to keep his muscles strong. And yes, it does seem to help. He had stalled out and didn’t seem to be making any more progress with his hand. His coordination is improving and he seems to be getting stronger.’ Marlys Williams & wife of stroke survivor

Kati van de hoeven
I have maybe couple years after the stroke .Once a week for 6 months .In MY case it didnt help much but I know people who have found help from that so I say go for it.

Jessica Sarkis Congleton
My sister is having this on her arms, legs, shoulders and for facial muscles. She has regained movement in the right side of her body and her left facial muscles are getting better.

David T Bickal
i did for a long time successfully

Joanne Marie LaCombe
They used in on my brother’s right arm daily when he was in the hospital. And only sporadically on his left arm even though it was the weaker side. They now use it only occasionally on his left arm in outpatient therapy.

Sharon Oneal
I use it on my arm at physical therapy

Missy Dunn
I love it. Use it on my arm and leg. Even for my swollowing. Help me alot. Still use it in OT

Lisa Rathburn
It worked wonders for me used it for my arm and now I can move my figures and turn my hand over it took a few weeks but I can use my right hand some now.

Jeff Cecil
I used it in Rehad until insurance quit paying I should have bought it Yes I am a firm believer and do think it did make a difference. Im not 100 percent maybe 40, but believe it helped me get to that point

Han Wah
the therapist use it on my mum’s arm and leg. She can’t really tell if this get her recover amazingly, because at the same time, she is taking some supplement and she practice a lot what the therapist teach her, while she at home.

Karen Kelly-Stanton
I use it I’m at helps to keep the spasms down myself and I’m didn’t unfreeze my hand or anything

Zory Escobar
I use it and it works

Rona Morris
I have FES wish I’d got it earlier tho

Patti Wilkinson
Yes, it helps the pain and movement in my left shoulder.

Ray Hemphill
I bought a device called biomove that really senses what you are trying to do and takes it from there

Indigo Flemming-Powers
loved it! had it mostly on arms and face (swallowing & speech). I actually have a unit that I just started using myself.

Holly hales Carson
I have a Bioness for my left arm. It didn’t restore movement for me, but sensation. I no longer use it and am hoping to sell it. I used it 2 hours a say for about a year and a half. I tried both Bioness and Walkaide on my leg and the Walkaide is the best, for me. It allows more shoe options. I had some surgeries that improved my foot and leg that I decided I didn’t need one.

Nicky Collison
I have used a little tens machine on my wrist to get it to come back which worked well x

JennyHarris
i tried the fes and it never worked for me but i have heard of alot of success stories

Connie Phipps
e-stim on my hand for 3 weeks, e-stim on my face for 6 months – it helped so much that i think it should be a standard treatment.

Chris L
It works, I bought my own on amazon

Beet Reitsmer
E stim will work very well to assist wrist extension in an otherwise useful arm if there is not too much spasticity-it will produce a functional grip and eventually overcome the flexor tone in many cases. It needs to be used right. It can also help extension of the elbow. Walkaid often helps a lot if there is not too much spasticity-use Estim first on the dorsi flexors of the foot without walking and you can often begin the control that you won’t get if you just try to walk with it with too much tone the other way

Jessica Boone Faulkerson
I use one at home twice. A day.

Michelle Morgan
They used it on me in ot and pt. I am now walking u assisted and using my arm and hand.

But it’s not just us stroke survivors who think there is something in this, I found existing research on the use. of electric stimulation on upper limbs

For example,
http://stroke.ahajournals.org/content/41/4/821.full
http://www.ncbi.nlm.nih.gov/pubmed/22266658
http://www.sciencedirect.com/science/article/pii/S0004951414603536

It seems there is growing body of interest in this field and I would be absolutely ecstatic if our £250,000 research bid is formally approved soon.

Keep you posted👍😜

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Stroke recovery CAN be SEXY! @fightingstrokes

A stroke is absolutely NOT sexy, let me be clear so I don’t offend anyone!

HOWEVER,

Why have we still not made the subject of stroke with politicians, TV and newspaper editors SEXY?

How often do you see more than just a few column inches or online pages dedicated to stroke recovery?

CANCER CHARITIES have successfully given cancer a persona when they talk about giving the illness the ‘V-sign’ on TV.

Yet our national stroke messages seem so utterly boring and not newsworthy, well unless you are a well known celebrity. (Marr, Lauren Bacall, Tarrant, Devey, Jessie J, Sharon Stone,…..). give me strength.

While I’m ranting, why are other cancer charities and governments so preoccupied with stroke prevention?

Sure, prevention is very important, but what about those poor people who didn’t actually manage to prevent their stroke happening in the first place? What messages are out there to help us recover and contribute to society?

Change the record please and start ‘ass kicking stroke’ and redress your stroke marketing messages to help people try to recover more from stroke!

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So would Mrs Doubtfire have coped? #RobinWilliams @kateallatt

I loved the amazingly witty, sharp proviso, the serious actor and all round unique talent of Robin Williams. Fact.

However, with Iraq, Ulraine, Ebola, Eygpt….. should this really have been the number 1 news story on the BBC at 6pm?

Robin sadly took his own life and very abruptly, but it was HIS desperate choice, if not perhaps warped.

He, like a lot of people clearly struggled to cope with his dreadful demons, emotional baggage and resulting severe addictions.

I’m glad to see a switch in America’ press to reporting mainly on issues surrounding mental health and depression towards the end of Tuesday.

Like a lot of stand-out talent (& he absolutely did stand out) he was actually merely vulnerable human (and a very flawed one at that), as opposed to the ‘perfect human we all seemed to ‘celebrity’ worship.

I hope his legacy raises issues surrounding mental health and depression which affects people with stroke, though I have to say that I will be gigging out my old Mrs Doubtfire DVD! RIP.

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Top 12 inspirational quotes that have INSPIRED my stroke recovery!

They were gems of inspiration to me. Little upbeat quotes posted on-line were a big help when I was coping with a severe illness. I’d founded the charity Fighting Strokes, and set myself physical challenges to help me progress. But those words of wisdom on social media really helped me to achieve my aims.

The front cover for this ebook was inspired by my ultimate personal goal to run again. I always believed I would run again in my beloved Peak District. Though no one else did.

Well, true to my word, I did run again in February 2012, just two years following my ‘locked-in’ illness.

Social media became my emotional support, my crutch, as I scoured Twitter and Facebook for positive quotes each day. My dark times were very dark indeed. I struggled to cope alone with the emotional fall-out, so positive quotes were my metaphoric ‘crutch’.

However, as I ‘retweeted’ or ‘shared’ something extraordinary happened.

More and more people from around the world began drawing strength from my inspirational quotes too! All kinds of people – those progressing from illness; as parents; employees; athletes; grief-stricken loved-ones; lovers; or non-religious types.

This gave me yet another ‘light bulb’ moment.

The catalyst for action was Cheryl Clever who wrote on my Fighting Strokes Facebook page in December 2012,

‘Kate, when will you please publish a book of all your inspirational quotes?’

Well the fear of being sued prevented me going ahead with the ebook, but I chose 12 of my favourite ones for this blog.

1.
Success is not final. Failure is not fatal. It’s the courage to continue that counts.
Winston Churchill

2.
You only live once?
Wrong!
You only die once!
Unknown

3.
If I’d observed the rules I’d have never gotten anywhere.
Marilyn Monroe

4.
You only have 3 choices in life.
Give up
Give In
Give it everything you’ve got!
Unknown

5.
Start thinking wellness, not illness
Kate Allatt 2013

6.
Im-possible is 2 letters too long!
Inspirational Sayings and Motivational Quotes – Digital Subway

7.
Once you choose HOPE anything’s possible.
Christopher Reeve

8.
You never lose a neural pathway if it returns.
Kate Allatt 2011

9.
Time heals all wounds
Unknown

10.
Obsessed is the word the lazy use to describe the dedicated.
Unknown

11.
Perfection isn’t the goal of self-improvement..improvement is.@SoulSeedsCoach

12.
Do you ‘talk the walk‘ or ‘walk the talk?’Alcoholics Anonymous Chicago 1960’s.

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