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

     

#strokerecovery tweetchats 4pm London Time 13th January 2015 – Here’s why……..

Stroke is global healthcare problem. In developed countries, it is the third or fourth most common cause of death.  However as 80% or more people now survive the initial stroke, the largest effect of stroke is through the long-term residual difficulties, daily living activity limitations and reduced social participation/interactivity.  Stroke is the main cause of adult disability.  Physical and emotional  impairments from stroke affect the whole family, not just the person with stroke.

Most stroke survivors and their families want get on with the rest of their lives after stroke —in other words their goal is #strokerecovery. This doesn’t not mean the stroke survivor or family will fully recover like they were pre-stroke. Rather, our #strokerecovery tweetchat aims to practically advise, help and inspire people to make progress in the daily living activities, socially and professionally.   This includes motor, communicative, cognitive and emotional recovery. In other words, it is possible for  stroke survivors and their families can live satisfying lives with impairments.

What is #strokerecovery ?

#strokerecovery is a vibrant community of people interested in exploring stroke recovery in for themselves and in stroke recovery. Sharing, learning & improving from each other.

Our first chat is held on 13th January 2015 at 4pm London time.

Why #strokerecovery ?

Fighting Strokes is a global patient advocate charity which was founded primarily to help inspire and support anyone affected by stroke. We try to help people make progress improvement both physically and emotionally. We also have a special interest in inspiring families and patients affected by brainstem stroke and diagnosed with locked in syndrome to improve.  See here Fighting Strokes.

Who takes part in #strokerecovery ?

Anyone and everyone delivering and receiving health care who is interested in open conversation to help improve quality, access, value and effectiveness of stroke recovery. This includes: patients, caregivers, patient advocates, healthcare professionals, not-for-profit health organisations, educators, heath content providers, health institutions, health administrators, health systems and networks, government and health policy makers.

Join us.

How to take part in #strokerecovery tweet chats.

  1. Get a Twitter account!!
  2. Go to twubs.com or tweetchat.com.
  3. Enter the #strokerecovery in the box that says “Enter a hashtag” and press Enter.
  4. Sign in to participate in the chat. (note the hashtag #strokerecovery will automatically be added to your tweets.
  5. Review this week’s topics.
  6. Be online at 4 pm London time on the 13th of each month.
  7. Chat!

Our next tweet chat will discuss:

T2: What the strengths are in our current #strokerecovery systems?

T3: What are the weaknesses in the current #strokerecovery systems?

T4: What should we concentrate on in the initial Tweetchats? 

Tweet Chat Etiquette

  1. At the beginning of the Tweetchat or when you join, briefly introduce yourself.
  2. Please use #strokerecovery in your tweet.
  3. The Tweetchat will be for active for 1 hour, but you can add to the Tweetchat transcript by including #strokerecovery in your posts between chats.
  4. The moderator will introduce the questions. Please respond to the current questions.
  5. You can respond and add to others posts by replying or favouring.
  6. Be kind to others and have fun.
  7. Suggest future tweet chats if you like ?

We are including several academic papers for your information. They include evidence based reviews on motor, communication, and cognitive recovery and Aura Kagan and colleagues (2008) framework for “Counting what Counts” in #strokerecovery.

Motor recovery

Peter Langhorne, Fiona Coupar, and  Alex Pollock (2009)  separated motor recovery into three areas:

  1. Upper-limb movement and function/arm and hand function;
  2. Lower-limb movement and function /Walking ability
  3. Balance
  4. Mobility (which combines upper-limb function, lower-limb function, and balance to enable normal movements) also been defined as
    1. ‘activity of moving from place to place, generally by walking or using a wheelchair’ (Busman & Stam, 1998)’
    2. ‘an individual’s ability to move about effectively in his surroundings’ (The WHO International Classification of Functioning, Disability and Health, 2001); or
    3. ‘Stroke- mobility’ –‘Out-of bed physical activity, which may include transferring on or off the toilet, sitting out of bed, standing and walking’ (Bernardt et al., 2009).

Communication recovery

Koenig-Bruhin and colleagues (2013) note that this is mainly referred to as aphasia recovery (language), but includes many different functions, such as verbal communication and activities involving daily life and self-organisation.

The vast majority of aphasia patients have the potential to recover, if they do not suffer from dementia. In the acute phase, different types of therapy have their merits, including group therapies or treatment involving families, but they:

  • must be adapted to the type of aphasia;
  • must be adapted to the patient; and
  • often require a minimum of intensity (between three sessions per week and once a day during the acute phase) and of duration (at least three months).

Focused interventions in the chronic phase have also demonstrated their effectiveness.

Cognitive recovery

Many survivors of stroke complain about cognitive impairments, such as attentional impairments, diminished concentration, memory loss, and mental slowness (brain fog) yet Loetscher & Lincoln’s (2013) review of cognitive rehabilitation concluded that effectiveness of cognitive rehabilitation remains unconfirmed.

Emotional recovery

‘If the part of your brain that normally controls your emotions becomes damaged by a stroke, the result can be a change in how you think, feel or behave. Don’t be surprised if you feel anxious, depressed, frustrated, angry or bewildered. Emotions tend be depression, anxiety, emotionalism, personality changes and anger.’ The Stroke Association. We can try to help our emotional #strokerecovery by:

  • Letting go of rejection
  • Avoid ruminating
  • Turn failure into something positive
  • Avoid letting guilt linger
  • Using positive affirmations to counter low self esteem *

Counting what Counts

Focus groups with a range of stakeholders including health professionals, stroke survivors, and their families highlighted the need to focus on real-life outcomes. They indicated that existing classifications and models were not necessarily accessible and/or user friendly for clinicians, researchers, policy makers, funders, and those living with aphasia.

Tweet Chat Timezones:

Add to calendar

Location Local time Time zone UTC offset
Edmonton (Canada – Alberta) Tuesday, January 13, 2015 at 9 :00:00 AM MST UTC-7 hours
London (United Kingdom – England) Tuesday, January 13, 2015 at 4 :00:00 PM GMT UTC
Perth (Australia – Western Australia) Tuesday, January 13, 2015 at 12 :00:00 am AWST UTC+8 hours
Corresponding UTC (GMT) Tuesday, January 13, 2015 at 16:00:00

Check World Clock for the corresponding times for your location: http://www.timeanddate.com/worldclock/

By @kateallatt

NEW EBOOK!

I Am Still The Same -Self help stroke recovery tool

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

References

Bussmann JB, Stam HJ. Techniques for measurement and assessment of mobility in rehabilitation: a theoretical approach. Clin Rehabil 1998;12:455–64.

Bernhardt J, Thuy MNT, Collier JM, Legg LA. Very early versus delayed mobilisation after stroke. Cochrane Db Syst Rev 2009, Issue 1. Art. No.: CD006187. DOI: 10.1002/14651858.CD006187.pub2

Kagan, A.Simmons-Mackie, N.Rowland, A., (…),Threats, T.Sharp, S. Counting what counts: A framework for capturing real-life outcomes of aphasia intervention  Aphasiology 2008; 22(3): 244-53

Koenig-Bruhin, M.  Kolonko, B.At, A.Annoni, J.-M.Hunziker, E.   Aphasia following a stroke: Recovery and recommendations for rehabilitation  (Review) Schweizer Archiv fur Neurologie und Psychiatrie 2013; 164(8):292-298

Loetscher, T.Lincoln, N.B.   Cognitive rehabilitation for attention deficits following stroke.  (Review) The Cochrane database of systematic reviews 2013; 5: CD002842

* http://articles.mercola.com/sites/articles/archive/2013/08/15/emotional-pain-recovery-tips.aspx – As the featured article reported, Guy Winch, author of Emotional First Aid: Practical Strategies for Treating Failure, Rejection, Guilt and Other Everyday Psychological Injuries, recently shared five tips for healing your emotional pain.

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