So how do I get INVOLVED with the 2nd tweetchat @Fightingstrokes @Stroketattler ?

 

  1. Have a think about what #strokerecovery means to you.
  2. Then click on http://www.tweetchat.com
  3. Enter the hashtag #strokerecovery and click GO
  4. Click Authorise Tweetchat – after inputting your @Twitter handle & password
  5. Then start by saying ‘Hi at5pm GMT on 10th February & tweet if you are a #stroke patient, carer, clinician, doctor, charity or researcher. But REMEMBER to always include the all-important hashtag #strokerecovery on all tweets!
  6. We will try to respond to your questions or comments sequential especially if you write which tweet you are responding to eg T1, T2 or T3 etc, hopefully our #strokerecovery community can not only be better informed but crucially influence #strokerecovery for others.
  7. Towards the end of our hour long Tweetchat, we will call for your ideas on future #strokerecovery topics to discuss, share and influence.
  8. We will also ask for any recommendations of key guest bloggers to invite at the end of our 2nd Tweetchat on 10 th February 2015 at 5pm GMT.
  9. Finally, we will tell you when our next Tweetchat will be.
  10. Enjoy we are so excited @FightingStrokes & @StrokeTattler !! (You can always follow us in the meantime?)
  11. Thanks @kateallatt

     

    NEW EBOOK!

    I Am Still The Same -Self help stroke recovery tool

    Internationally published author ‘Running Free’ (Amazon) .  Speaker –   Founder Fighting Strokes

     

A Brainstem Stroke? 6 tips to spot one. @fightingstrokes

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

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NEWS FLASH!!! New book November 2014

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Do we know the locked in syndrome prognosis in the 1st weeks weeks after the illness?

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

‘To see the world’ or ‘for the world to see you?’

…. a great quote I read on Twitter recently, don’t you agree?

Truthfully, I was so proud of what I personally did to recover, against all the medical odds in hospital and beyond, for a few months back in 2011/12 that for a while I unhealthily ‘believed my own Kate Allatt press’.

However, I have to say that still during that period I very much harnessed that global media attention to voluntarily (and very cheaply) build my international & credible internet-based stroke charity – Fighting Strokes.

All my back-to-back press interviews,TV & Radio appearances surrounding the launch of my 1st book – Running Free – made it possible to launch my global charity ‘all-in’ for less than £480!

So was that all bad?

I am absolutely passionate about stroke recovery and locked in syndrome, (to the point my own loved-ones have never understood it, though increasingly they seem to now.)

Worldwide there has been so much positive progress for others touched by Fighting Strokes, since January 2011.

I will always try to represent patients who now suffer like I once did, by trying to influence stroke recovery for all; and visiting patients & their families; to reaching out over social media; to writing self-help stroke recovery books/apps etc.

I’m committed to influencing working-age, stroke survivors by helping them return – should they want – back to paid employment, (As opposed to the often having to returning to voluntary work in a local stroke support group.)

I would love frontline GPs and A & E doctors to be better trained to spot early Brainstem stroke before it completely destroys yet another life, but as well as helping them to be less ignorant of the wide range of short & long term patient outcomes.

Furthermore, I want to conduct research with Joanna on the use of early intensive, repetitive, frequent Electrical Stimulation on upper limbs, of all types of stroke survivors who present physical arm impairment.

Yes, I want the world to see the impact of Fighting Strokes, so for that I make absolutely no apologies!

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