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Affected by Dysphagia like me? Important new research! #stroke

Could New Research Into Swallowing Function Give Hope to Dysphagia Sufferers?

Swallowing difficulties, broadly categorised under the medical term

Dysphagia, are a debilitating problem for millions of people worldwide. Most commonly found in stroke victims and cancer patients, the condition can heap misery upon the life of its sufferers, unable to enjoy food or even feed oneself in many instances.

However, a new study has given a glimmer of hope to the many victims desperate to escape the confines that dysphagia brings, so what’s it all about?

Research carried out by Sonja Molfenter, assistant professor at Steinhardt School of Culture, Education and Human Development at New York University (NYU) has identified a correlation between size and height of a person and their swallowing function. The paper, entitled Use of an Anatomical Scalar to Control for Sex-Based Size Differences in Measures of Hyoid Excursion During Swallowing, develops upon the widely accepted theory that gender has an effect on the biomechanics of swallowing, by considering height as a determining factor as well.

Broadly speaking, men tend to have a greater movement in swallowing ability than women and Molfenter’s study reinforced this finding.

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However, the paper also explored whether the gender of a person having an effect on swallowing function could be attributed to their height as opposed to just being a biological difference between men and women.

The results were conclusive in proving size is just as important as gender when it comes to determining swallowing function and this has left the door open to further research into analysing how we tackle the symptoms of dysphagia.

There has long been a need for more targeted, specialist treatments for those with difficulties swallowing tablets, food and even liquids so there is hope that Molfenter’s study could see further breakthroughs in what we know about the way the human body can and cannot deal with swallowing.

With new ideas come new hopes for the many sufferers of the debilitating condition of dysphagia and there is renewed optimism that this study could yet prompt further research into new methods and treatments to help tackle what is a crippling problem for so many stroke victims and other patients unlucky enough to suffer with swallowing difficulties.

With the report’s findings only just having been released, it is too early to determine just how much of an effect they will have into the research around dysphagia and the recovery process for stroke victims and cancer sufferers.

However, there is certainly positivity to be taken from the fact that this study has taken steps to address our understanding dysphagia and it can only provoke further investigation into the root causes of the condition and how we ultimately treat it.

 

Sharer @KateAllatt 

Internationally published author ‘Running Free’ (Amazon) http://www.amazon.co.uk/Running-Free-Breaking-Locked-Syndrome/dp/1908006641.  Speaker – http://www.kateallatt.com/  Founder Fighting Strokes. http://www.fightingstrokes.org/

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Shock, disbelief & denial – immediately after a severe stroke has struck.

A friend wrote:

‘Hi,
I just got an email from a friend to say his wife has had a stroke and is paralyzed. I’ll put the email below.
Can you please advise me on anything you think I can do, or any information that I could share with my friend that might be of help to him. Please help me, I don’t know what to do or say….
Kind regards,

Below is his email:
(My wife) had a stroke on Saturday. The doctors think she will be paralyzed for life and that the best case scenario will be that she has right arm movement..

She is fully conscious of her surroundings and has full mental function, but is trapped in a body that can’t do anything.

She won’t walk again…but i’m hoping and praying for a miracle. She might not survive, but I find it hard to accept. My life is falling apart after everything was going so well. I also have a 3 week old baby amongst all of this….

Life is totally unfair.’

Our Fighting Strokes response:

Hello

There is always hope and I mean real hope. Some people do better than others. That's true. But some people don't eg. 'The Diving Bell & Butterfly'. This is far too early to know what her long term prognosis will be.

How long ago was it?

There are no promises just possibilities. (My charity strap line).

Incidentally my husband was told that I would never speak again and now you can't stop me. Every stroke is different. Every individual is different and every set of loved-ones and access to and quality of therapy is different.

No one knows I am not God nor are the doctors. Doctors are universally negative about this very early on. They worry about giving 'false hope' to desperate families. They worry about litigation if they say a patient will progress further than they actually do. Ultimately, like the MND disease, they often fear treating locked-in and locked in syndrome in my opinion.

Who is helping with the baby? That's incredibly tough. Are there parents, sisters, brothers around, good friends, what help/advice are the authorities giving?

Where does she live?

Was the damage a Brainstem stroke?
How substantial was the damage eg were the multiple clots, dissection across the whole left/right pons in the basilar artery?

Please read Running Free (Ebook amazon) it's very practically helpful.

Is there a clinical team established or neurologists, neuro physio, occupational therapist, speech therapist and psychologist?

Most importantly you MUST try to establish a method of communication.

Eg. Eye roll up and down for yes and no.
A blink for no and two blinks for yes.
Moving a certain digit.

Download the lingraphica ICU app. You can use it to establish of she is in pain, not sleeping, hot, cold, unhappy etc and all she would need to do is blink once or twice to communicate with you as you read down the pre-prepared list.

Practical ideas to help the emotional pressures on her and her boredom.

Pictures and phone video images of you and your baby. I can tell you from experience that baby will give her the best fight ever, which should give her the best chance of improving. The separation anxiety was dreadful and torturous for me.

A docking station with her favourite music on
DVDs or films
Talking books

Do you have some sort of visitor timetable – it's very lonely is the baby being brought in?

This is gonna be a long process. It will be very demanding and there will be huge highs but severe lows too.

Read Norman Doidge 'the brain that changes itself.' It's all about very early intensive, frequent and repetitive actions. This is called Neuroplasticity and will help to re-route the brain around the damaged parts. (Unless the damage is completely right to left across the artery in my lay- opinion)

This is about establishing bite sized goals focus on trying to think about what needs to be done today, tomorrow and next week. Do not look too far ahead it's completely overwhelming.

For example you might have to make a decision for her to have a tracheostomy or a stomach feed. That's normal and doesn't necessarily mean it's permanent
Is she on life support? If so, your goal would be to try to start the process of weaning her off it.

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Join my closed Facebook groups
'Tips Brainstem stroke locked in syndrome'
'Fighting strokes – the loved-ones

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

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6 tips to spot a devastating brainstem stroke

Brain stem strokes can be difficult to diagnose and complex,  according to Dr. Richard Bernstein, assistant professor of neurology in the Stroke Program at  Northwestern University in Chicago.

Brain stem stroke can cause:

  1. Vertigo
  2. Dizziness
  3. Double vision
  4. Slurred speech
  5. Severe imbalance and
  6. Decreased level of consciousness.

So what does the brainstem do? Well it controls all basic activities of the central nervous system: consciousness, blood pressure, and breathing. All the motor functions are controlled by it. It’s like our body’s control box.  Brain stem strokes can impair any or all of these functions. “These complications are often predictable and, with prompt recognition, can be treated,” Dr. Bernstein says. “If complications are dealt with quickly, there is a good chance of recovery.”

More severe brain stem strokes can cause Locked in Syndrome -http://cirrie.buffalo.edu/encyclopedia/en/article/303/ a condition in which survivors can move only their eyes.

“It is important that the public and healthcare professionals know all of the symptoms of a stroke and are aware that some brain stem strokes heave distinct symptom,” Dr. Bernstein says. “Patients need to receive treatment as soon as possible to promote the best recovery.”

Like all strokes, brain stem strokes produce a wide spectrum of deficits and recovery. Over time, these symptoms could result  in mild to moderate and short to long term difficulties.

Risk factors for brain stem stroke are the same as for strokes in other areas of the brain: high blood pressure, diabetes, heart disease, atrial fibrillation and smoking. Like strokes in other areas of the brain, brain stem strokes can be caused by a clot or a hemorrhage. There are also rare causes, like injury to an artery due to sudden head or neck movements. This was my actually the cause of my injury.

“Dramatic recovery from a brain stem stroke is possible,” says Dr. Richard Harvey, director of stroke rehabilitation at the Rehabilitation Institute of Chicago. “Because brain stem strokes do not usually affect language ability, the patient is able to participate more fully in rehabilitation therapy. Most deficits are motor-related, not cognitive. Double vision and vertigo commonly resolve after several weeks of recovery in mild to moderate brain stem strokes.”

 

 

Resources for Locked-in Syndrome

Running Free: Breaking out from Locked in syndrome Allatt/Stokes http://www.amazon.co.uk/Running-Free-Breaking-Locked-In-Syndrome-ebook/dp/B008G5LRZS

 

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Locked In: A Young Woman’s Battle with Stroke. Mozersky, Judy. The Golden Dog Press, 1996. ISBN 0-919614-64-7.

The Diving Bell and the Butterfly. Bauby, Jean-Dominique. Random House Value Publishing, 1995. ISBN 0-517409-31-3.

 

Information Sources

Adapted from “Surviving a Brain Stem Stroke”, Stroke Connection January/February 2003 and http://www.strokeassociation.org/STROKEORG/AboutStroke/EffectsofStroke/Brain-Stem-Stroke_UCM_310771_Article.jsp#mainContent

 

By @KateAllatt 

Internationally published author ‘Running Free’ (Amazon) http://www.amazon.co.uk/Running-Free-Breaking-Locked-Syndrome/dp/1908006641.  Speaker – http://www.kateallatt.com/  Founder Fighting Strokes. http://www.fightingstrokes.org/

6 tips if you are socially withdrawn after stroke

1. Understand your insecurities.

Learn to pay attention to negative thoughts and distinguish the rational thoughts from the irrational ones.

Until you’ve addressed your insecurities and told yourself you’re a worthy person, you won’t be able to truly socialise.

Do you constantly tell yourself you’re unattractive?
Do you tell yourself you’re ‘not normal’ now? That you are misunderstood?
Unhinged or irritable or emotional?

Negative thoughts like these are what keep you from feeling confident enough to be a social person.

2. Recognise & compartmentalise away your negative thoughts.

First, acknowledge that the negative thought is there. Label it as a “negative” thought, and then let it slowly dissolve until it disappears completely.
Turn a negative thought into a constructive one. For example, I can’t walk anymore independently. So you tell yourself you are ‘disabled’ (like I did) Instead tell yourself ‘I’d like to walk and get my strength back so that I can do the things I once enjoyed & be more social. This way, you can turn a negative thought into a positive goal for the future.
For every negative thought, think of three positive thoughts.
Being positive makes you more socially approachable.

3. List your positive qualities.

Unfortunately, we spend so much time trying to improve ourselves that we forget to acknowledge our accomplishments, our talents, and our good nature. Why not ask yourself the following questions to get you started:

What have you done in the past year that you are proud of?
What is your proudest accomplishment of all time?
What unique talents do you have?
What do people tend to compliment you on?
What positive impact have you made on other peoples’ lives?

Most of the time it’s hard to remember your past achievements, so why not write them down on a piece of paper as they happen, and put them in an ‘achievements jar’ in your kitchen?

4. Stop comparing yourself to others.

Keep in mind that behind closed doors, everybody experiences pain or suffering from time to time. If you find yourself wondering why certain people seem happier than you, remind yourself that happiness has little to do with external circumstances, and everything to do with attitude.
Life is challenging for everyone
In different ways and we all have different coping thresholds.

5. Remember that you’re not the center of the universe. (This was my thinking in 2011!)

I felt invisible and insecure also tend to feel like they are constantly being watched, criticised, and laughed at.

I thought strangers were constantly staring at you and waiting for you to mess up or judging me on my obsessive passion. They did privately question whether I was actually moving on, though now realise I had to do what I did.

Remember people are so involved with their own lives that they have little time to notice if you do or say something embarrassing.

Get over the fact that everyone is judging you. Like you, they are more concerned about themselves than the people around them.

6. Get over your fear of rejection. (Hard I know, as I felt I’d lost my place socially because I was no longer perceived as ‘normal’ by others, but now I know no-one is perfectly normal!)

But think about all of the amazing relationships you can form if you just put yourself out there more.

Hope this helps make you feel more social.

Adapted from:

http://m.wikihow.com/Become-a-More-Social-Person

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Do you really know if someone is conscious? @kateallatt

As I emerged from my medically induced coma in February 2010, I had periods (in amongst my severe hallucinations) where I slowly became aware that I was on a life support machine in hospital, following a stroke. But I was completely unable to physically communicate that fact to anyone – for two weeks.

I was experiencing what people describe as ‘locked in’ syndrome.

It was terrifying. My response to seeing someone who loved me coming to visit me was to cry tears. But there was no noise, just tears rolling down my face. People assumed they were involuntary movements – but it was genuine emotion. My friends, family and doctors assumed I was in a vegetative state – but I was there the whole time.

I could see and hear, and feel anybody touching me and yet my brain couldn’t instruct any part of my body to move.

I couldn’t develop any communication signal, which is the key thing with anybody locked in – either an eye gaze or a blink. But I couldn’t do that. There was no outward sign that I could understand anything.

It was like being buried alive. There was no TV turned on for me – all I had was a clock on the wall and patients screaming around me. I had three kids who were six, nine and ten at the time who hadn’t been to see me so the separation anxiety was beyond belief. I was so bored, fearful, upset, angry, in denial, scared and hot – I couldn’t regulate my temperature.

I was in constant fear that the conversations my loved ones were having were that I wasn’t worth being saved.

Above all it was frustrating because the doctors made no attempt to try to formerly establish any communication signal at that point, something I’m still struggling to understand. Instead, it took my proactive friends to try to find a way to communicate with me using a rudimentary communication board, because they wanted to unlock the person they believed to be still inside.

In two weeks my consciousness improved and my friends were able to get me to blink to answer questions (blinking to spell out letters, which was a long process). I was still locked- in but I was able to blink to communicate.

My experience has taught me that we should always assume that a patient is conscious until we have absolutely proven otherwise. Beyond that, we must be truly compassionate in our care for patients who are in a vegetative or minimally conscious or locked-in state.

Patients need to be kept alive and I am personally so very grateful for the skills of my medical and nursing teams in giving me my second chance of life, but treat the human being too, it’s not just about patient SATs and vital signs.

Is the Glasgow Coma Scale (GCS) score, which is used to assess consciousness, always reliable and interpreted accurately? Indeed, is it performed on a patient every hour?

For anyone ITU is a very scary place. People die. Inappropriate conversations are overheard. Patients are often in pain and scared for their own survival. ITU is boring, so patients tend to over think and stress about what may happen to them. It’s also incredibly lonely.

All brain injuries are different, but we must start being truly patient-centred in our care of such patients and start treating the whole person – that’s both physically and emotionally.

Health professionals need to start treating people like they themselves would want to be treated.

My determined self-belief and hope against all the odds was ultimately what got me through and why my charity strap line is ‘no promises, just possibilities.’

Lets make stroke sexy!

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A stroke is anything but sexy, let me be clear so I don’t offend anyone from the outset!

However, why have we still not made the subject of stroke with politicians, TV and newspaper editors SEXY enough to write about?

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 messages an even higher impact 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. (Andrew Marr, Lauren Bacall, ChrisTarrant, Hilary Devey, Jessie J, Sharon Stone,…..) give me strength. Normal people have strokes. In fact anything with a brain can have a stroke, so that includes unborn children in the womb!

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 self-manage our own recoveries and possibly contribute to society?

Change the record please and start ‘ass kicking stroke’ and redress your stroke marketing messages to help people try to aspire to recovering more.

ass

 

Stroke & mental ill-health – we are failing survivors

As most now know Robin Williams committed suicide. I think the immediate comments on Twitter summed up the widespread ignorance of the impact of severe depression and anxiety in our society when one wrote, ‘So What has Robin Williams got to be depressed about?’

Within 24 hours attitudes changed and the fantastic Mrs Doubtfire initiative went viral and is positively helping raise awareness of mental health issues globally.

 

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But when someone has a stroke, individuals suffer residual physical disabilities but the long term emotional impact is often extreme. One woman even blogged on a closed group in Facebook, ‘I was always very independent. Now walking from one room to another wears me out. My friends & sisters turned their backs on me. I hate living. I wish my stroke had killed me.’

Because of these often widespread and desperate views, I feel very passionately that we must raise awareness of stroke and severe depression. Furthermore, we must not make stroke campaigning always about stroke PREVENTION an F.A.S.T.

‘It amazes to see how selfish some people can be. They can try to justify it by saying it’s just too hard, or that the stroke patient isn’t the same, but that’s just life. Life gets hard and things happen that flat out stink. That in no way should affect your commitment to a loved one. My husband’s family rarely come to see him (maybe one person will come once every 3-4 months and stay for maybe an hour) and they only live about 30 minutes away. I know it bothers him that they don’t come, so I continuously invite them, but they always say they’re just too busy. I understand being busy, but if you can’t make time once a month or so to come and check on a nearby brother or son that needs you, then you need to look at your priorities.’

‘We have similar problems and I look at in that they have the problem! What bothers me is when they come and try to tell me and Paul how we should be doing things! That’s none of their concern they should simply come and visit your relative, and show support in that way. But nothing stranger than folk! Xxx’

‘I can’t count the number of times I was told, ‘Don’t ask me to go back it’s was just too hard,’ like it happened to them. I had to release my demons & digest my trauma, I was felt muzzled.’

‘…people need to get over themselves and think of how the stroke survivor feels. You don’t like hospitals? Neither does the stroke survivor. Visit them anyway. It’s hard on you to see a loved one in this condition? It’s hard on the stroke survivor to be in this condition. Be there for them anyway. To show true love is to put down your own feelings and hang-ups and be 100% there for the one you love.’

‘People are just selfish though how do they think we feel looking at our Loved Ones in their new post stroke conditions? It makes me mad I would rather they just said I can’t be arsed, at least you would know where you stood. People just can’t be honest, scared of hurting our feelings, well compared to what we have been through their opinions are nothing!’

‘Sometimes I feel as though it’s me and the boys up against the world. All I can say is thank god we’ve got amazing friends! Family gave good support at first but now we rarely see them, the majority haven’t visited for over 6 months which shows no support to my husband or our kids. People seem to think that sporadic text messages and emails are sufficient to keep in touch with my husband whilst my uncle who’s in his 70s and has just had heart surgery comes to see my husband from his home 20 miles away every couple of weeks. I think I’m better without the support and quite frankly the irregularity of it totally pisses me off. I hold grudges, a bad trait I know but that’s just how it is!’

 

Charities and government please LISTEN to these views from  anonymous patients and people above affected by stroke.

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Locked in syndrome diagnosis – think again about the prognosis!

The brain stem controls all basic activities of the central nervous system: consciousness, blood pressure, and breathing. So after a brainstem stroke some patients will be formerly diagnosed with Locked In Syndrome. This doesn’t necessarily mean a death sentence for the individual which results in the fatal pneumonia, like the poor chap in depicted the film – The Diving Bell & Butterfly.

Over time, these symptoms could result in being mild to moderate and short to long term. I believe it is possible to positively influence the future patient outcome and prognosis, especially if therapeutic therapy is offered early in ITU (as opposed to only passive therapy), the health professionals remain open-minded about the improvement possibilities early on, the loved-ones are proactive and informed, but most importantly the patient is physically able to try to concentrate cognitively to work hard on improving.

If you don’t believe me why don’t you read this…

‘Hi Kate!

I’m approaching you on behalf of my boyfriend, or husband to be actually. Hope you have time to read my message!

My name is Rikki, I’m 29 and from Finland. Last summer, 5th July to be exact, my boyfriend Tommi suffered a massive brain stem stroke. Only symptoms he had were a headache day before and nausea. When we went to ER doctors suggested Tommi might be suffering from vertigo. CT scan revealed that it was not the case. Tommi basilar artery was completely clogged. Doctors tried to dissolve it but failed, and after that they inserted a microscope netlike tube structure inside the vein to keep it open. For a moment it seemed to help, but Tommi did not wake up after the operation and new CT scan showed that the vein had clogged again.

He was rushed to a new operation and doctor told me that he had to think very hard what he would do, or was there anything left to do. After some painful hours doctor managed to dissolve the clog a bit so that Tommi survived. When he eventually woke up however he was in complete locked-in state.

I saw that ‘Tommi’ was present when I looked in his eyes. ‘Tommi’ has two boys, X 12 and Y 10 who are really close to me, from previous relationship, it was Alex who asked Tommi to blink twice if he hears us and means yes, and blink once if he means no. After couple of weeks the alphabetic board was introduced. I became quite fast speller, but then again nobody else, including nurses and doctors did not know how to use it. First weeks were really hard, ‘Tommi’ had sepsis and pneumonia but survived. When he’s condition was stable he went to a rehabilitation center in Helsinki. It has a good reputation they treat people with spinal cord injuries, brain damages and also stroke survivors.

Rehabilitation lasted 6 months and I was with ‘Tommi’ the whole time, every day, trying to help him as much I could.

‘Tommi’ is very determined and stubborn person. He says he is going to walk by next autumn. This is of course not what doctors or therapist told him. When we went to rehab ‘Tommi’ had regained some movement to his head. Rehabilitation concentrated in the beginning to improving communication. All sorts of buttons and switches were introduced to Tommi so that he could use Computer, communicator and also electric wheel chair with them. Tommi wrote to me that they could all be thrown into trash can because he is going to speak and move around in a wheelchair using his own hands. I was in a minority believing that.

Today Tommi speaks and uses his hands to move around in a wheelchair. His tracheostomy was removed in January. He is going to get electric aids to his wheelchair that help him when his arm muscles tire. His speech is still sometimes blurred by phlegm that was a real issue in the beginning, but that is a small problem. He has activity in his muscles all around the body, they are weak of course but still there’s action. Therapies still go on and were living in a temporary apartment at the moment. Our own home is being renovated so that Tommi can move around there in the chair. We are planning to get married next autumn.

I would like to thanks you for telling your story. (Running Free Amazon http://www.amazon.co.uk/Running-Free-Breaking-Locked-Syndrome-ebook/dp/B008G5LRZS/ref=tmm_kin_swatch_0?_encoding=UTF8&sr=&qid=) I found your web page – http://www.fightingstrokes.org/ – when I tried to look for information about locked in syndrome. When you google locked in syndrome and recovery there is not a lot that comes up. But your story was there and it gave us hope! I told to Tommi that it is possible to recover, and he is proving me right. I did not talk to him about all the other horrible stuff I found while googling. And I did not think about it myself, instead I thought about your story. So thank you, on my and Tommi behalf! You are very strong and inspirational person! I wish you all the best and hopefully spring is as sunny there as it is here there too!

Yours, Rikki

Ps. If you have time, it would nice if you could write something to Tommi as a sort of surprise.. I almost forgot where could I safely buy your books? They are not sold in Finland!

The moral of the story is that there is always…

hope

 

Want to help Crowdfund our stroke recovery documentary film?

We are looking to supplement the grant we’ve been awarded with crowdfunding, if you fancy getting involved?

Get involved why not help Crowd Fund the Georgia’s documentary film?

This is not just a documentary film about the world hearing the other side of the ‘LockedIn Unlocked’ stroke recovery story.

My story will join other remarkable stories where individuals haven’t ended up like the poor chap in the award winning film – The Diving Bell & Butterfly. Yes, sadly some individuals pretty much remain in a desperate state similar to his, but others simply don’t. My charity offers ‘no promises, just possibilities’

Indeed, this will hopefully raise awareness of some of the myths surrounding potential to improve after having suffered a brainstem stroke with or without locked in syndrome.

Quite a lot of people recover significantly and far more than the often very premature health professionals would formally suggest especially in the early stages of the illness.

I hope we kick ass with awareness, attitudes & treatment, but also explore the ways we can optimise the well-being of those who don’t enjoy significant improvement gains.

I hope Georgia’s film will give people, like I once was, an important VOICE!

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Is stroke recovery sexy? Strokerecovery tips.wordpress.com

@KateAllatt:

Stroke recovery CAN be SEXY! @fightingstrokes http://t.co/4qqz02VWQJ

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