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Saturday 21 April 2018
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Stroke: A view from the inside and help for caregivers

by Justina Hurley

Screen Shot 2014-06-17 at 11.43.18

A stroke of insight

Jill Bolte Taylor got a research opportunity few brain scientists would wish for: She had a massive stroke, and watched as her brain functions — motion, speech, self-awareness — shut down one by one. Her stroke was catastrophic but she did recover and her view from the inside and the very fact that she recovered has led Jill to become a very influential voice in challenging current treatment approaches to stroke.

Watch her amazing and very inspiring story below then read on to find out more about strokes and on the rehabilitation insights Dr Bolte Taylor found while recovering from her own stroke.

What is a stroke?

There are two types of stroke:

Ischemic stroke: This happens when a blood clot forms and travels into an artery in the brain. When the artery becomes too small for the clot to pass any farther, the flow of oxygen containing blood is blocked and cannot reach the brain cells beyond the region of the clot. The brain cells become traumatised and can die. 83% of all strokes are Ischemic.

Haemorrhagic stroke : This is where blood escapes and bleeds into the brain. As blood is toxic to neurons, the direct contact that happens between blood and neurons during a bleed damages the brain cells in that area. 17% of all strokes are haemorhagic.

Haemorrhagic strokes can come from leaks or vascular tears or from aneurysms. An aneurysm happens when there is a weakening in the wall of a blood vessel. The weakened area can begin to fill with blood and balloon out. If the balloon ruptures, then a large amount of blood can pour into the brain and skull. Any type of hemorrhage is often life-threatening.

A rare form of hemorrhagic stroke is called an arteriovenous malformation (AVM). This is the type of stroke Jill had and it is a congenital condition. Although the AVM accounts for only 2% of all hemorrhagic strokes, it is the most common form of stroke that strikes people during their prime years of life (ages 25-45). Dr. Jill was 37 when her AVM blew. For full details on this see Jill’s page here.

Understanding the brain hemispheres

The brain is one unit make up of two parts. The right hemisphere and the left hemisphere. Both hemispheres connect in the middle via the corpus callosum. The corpus callosum integrates the two hemispheres to provide a multi layered and rich experience that uses both hemispheres to translate our experience of the world around us.

Each hemisphere is very different though. The right hemisphere is more sensory. According to Dr Jill “the right hemisphere functions like a parallel processor.” In every moment a rich tapestry of sight, sound, sensation, touch taste and smell is processed by the right hemisphere. She says:

“Our right hemisphere is designed to remember things as they relate to one another. To the right mind no time exists other than the present moment and each moment is vibrant with sensation. The moment of now is timeless and abundant when everything and everyone are connected together as one. As a result, our right mind perceives the big picture, how everything is related and how we all join together to make up the whole. Our ability to be empathic, to walk in the shoes of another and feel their feelings is a product of our right frontal cortex.”

The left hemisphere processes information in a completely different way. Like a computer programme, it orders information in a timely way. It is the practical application in a sense. The part that has a sense of past, present and future and which understands that certain details have to be in place before the next part happens. Dr Jill explains:

I look at my shoes and socks and it is my left hemisphere that comprehends that I must put my socks on before my shoes.

While the right hemisphere thinks in pictures and sees and senses the big picture, the left hemisphere is detail focused. The left brain uses language to define and communicate and to dissect. The brain chatter we hear in our minds comes from the left brain. This brain chatter is like a programme that runs all the time to remind us of the details of our live and who we are, where we live, what we do. It is the ego centre and the part that describes us as self, separate to others.

If we were wholly functioning from a right brain perspective we would just sit in a never-ending state of experience, oneness and feeling, but we might forget who we were and even forget day to day function such as eating and getting dressed. If, on the other hand we were functioning only from a left brain function, we would be detail oriented and lacking any ability to empathise or even interpret subtle emotions.

The amazing power of the brain is that, via the corpus collosm, both hemispheres work together to provide the rich experience that combines detail and emotions, the place where the world of feeling meets the world of practical application.

No two brains are the same however and so everyone’s brain can potentially run at different speeds and strengths in the various areas.

How a stroke can affect the brain

A left brain stroke can often damage the language centres and so the person may not be able to create or understand speech. However they can be incredibly sensitive and know immediately what mood someone is in, how that person is feeling or if a person is lying or telling the truth because the right hemisphere ability is even stronger without the filters of the left hemisphere.

The left hemisphere also defines the boundaries of the body so if that area is affected the person may feel no sense of self and instead experience a boundless, selfless state.

A right brain stroke can affect the ability to read or understand emotional cues. Without the bigger picture, the person has only a literal understanding of what is being said and may not have an ability to really get the emotional content or the more subtle meanings of expressions, slang or humour.

But again it can be different for everyone, depending on what areas of the brain are being affected. Taylor’s book My Stroke of Insight is invaluable in describing what a stroke patient is feeling, especially in the early weeks and months and for caregivers and family of the patient it provides a handbook of what to do and what not to do to help the patient recover.

Recovery

For Dr Bolte Taylor full recovery took eight years, but she did fully recover and that is the most important lesson from her experience. She says:

I believe I recovered completely because I had an advantage. as a trained neuroanatomist, I believed in the plasticity of my brain – its ability to repair, replace and retrain it’s neural circuitry. In addition, thanks to my academics, I had a ‘roadmap’ to understanding how my brain cells needed to be treated in order for them to recover.

As she had a left brain stroke which affected her language centres but which made her very sensitive to emotions and feelings, she says that the most important thing for her was to understand she was ultimately the one in control of her own recovery and that it was her decision to show up and cooperate with her team or not. However, the attitude of the team working with her was vital to her wellbeing. This is a valuable insight that can help anyone working with a stroke patient who at times may be unwilling to cooperate. She says:

I chose to show up for those professionals who brought me energy by connecting with me, touching me gently and appropriately, making direct eye contact with me and speaking to me calmly. The professionals who did not connect with me sapped my energy so I protected myself by ignoring their requests.

Ten Assessment Questions

Dr Jill devised the following list of assessment questions that she feels should be used when assessing a stroke patient:

1. Have you had my eyes and ears checked to make sure you know what I can see and hear?

2. Can I discriminate colour?

3. Do I perceive three dimensions?

4. Do I have any sense of time?

5. Can I identify all of my body parts as mine?

6. Can I discriminate a voice from background noise?

7. Can I access my food? Can my hands open the containers? Do I have the strength and dexterity to feed myself?

8. Am I comfortable? Am I warm enough? Or thirsty? Or in pain?

9. Am I oversensitive to sensory stimulation (light or sound)? If so, bring me earplugs so I can sleep, and sunglasses so I can keep my eyes open.

10. Can I think linearly? Do I know what socks and shoes are? Do I know that my socks go on before my shoes?

Forty Things I needed the Most – Things caregivers should know when dealing with a stroke patient

1. I am not stupid, I am wounded. Please respect me.

2. Come close, speak slowly, and enunciate clearly.

3. Repeat yourself—assume I know nothing and start from the beginning, over and over.

4. Be as patient with me the 20th time you teach me something, as you were the first.

5. Approach me with an open heart and slow your energy down. Take your time.

6. Be aware of what your body language and facial expressions are communicating to me.

7. Make eye contact with me. I am in here—come find me. Encourage me.

8. Please don’t raise your voice—I’m not deaf, I’m wounded.

9. Touch me appropriately and connect with me.

10. Honor the healing power of sleep.

11. Protect my energy. No talk radio, TV, or nervous visitors! Keep visitation brief (five minutes).

12. Stimulate my brain when I have any energy to learn something new, but know that a small amount may wear me out quickly.

13. Use age-appropriate (toddler) educational toys and books to teach me.

14. Introduce me to the world kinesthetically. Let me feel everything. (I am an infant again.)

15. Teach me with monkey-see, monkey-do behavior.

16. Trust that I am trying—just not with your skill level or on your schedule.

17. Ask me multiple-choice questions. Avoid Yes/No questions.

18. Ask me questions with specific answers. Allow me time to hunt for an answer.

19. Do not assess my cognitive ability by how fast I can think.

20. Handle me gently, as you would handle a newborn.

21. Speak to me directly, not about me to others.

22. Cheer me on. Expect me to recover completely, even if it takes twenty years!

23. Trust that my brain can always continue to learn.

24. Break all actions down into smaller steps of action.

25. Look for what obstacles prevent me from succeeding on a task.

26. Clarify for me what the next level or step is so I know what I am working toward.

27. Remember that I have to be proficient at one level of function before I can move on to the next level.

28. Celebrate all of my little successes. They inspire me.

29. Please don’t finish my sentences for me or fill in words I can’t find. I need to work my brain.

30. If I can’t find an old file, make it a point to create a new one.

31. I may want you to think I understand more than I really do.

32. Focus on what I can do rather than bemoan what I cannot do.

33. Introduce me to my old life. Don’t assume that because I cannot play like I used to play that I won’t continue to enjoy music or an instrument, etc.

34. Remember that in the absence of some functions, I have gained other abilities.

35. Keep me familiar with my family, friends, and loving support. Build a collage wall of cards and photos that I can see. Label them so I can review them.

36. Call in the troops! Create a healing team for me. Send word out to everyone so they can send me love. Keep them abreast of my condition and ask them to do specific things to support me—like visualize me being able to swallow with ease or rocking my body up into a sitting position.

37. Love me for who I am today. Don’t hold me to being the person I was before. I have a different brain now.

38. Be protective of me but do not stand in the way of my progress.

39. Show me old video footage of me doing things to remind me about how I spoke, walked, and gestured.

40. Remember that my medications probably make me feel tired, as well as mask my ability to know what it feels like to be me.

How to Recognise a Stroke

On the left is a poster from the www.stroke.ie that helps to recognise the symptoms of a stroke.

On the right below is a mnemonic device, created by Dr. Jill created in order to help people remember the most important signs of stroke. Please commit these to memory and share them with everyone you know!

recognise a strokeS = Speech, or problems with language

T = Tingling, or numbness in your body

R = Remember, or problems with thinking

O = Off-balance, or problems with coordination

K = Killer headache

E = Eyes, or problems with vision

Stroke is a medical emergency. Dial 911.

 

 

my stroke of insightJill’s book is an amazing read for everyone, not just for caregivers and people who have recovered or are recovering from a stroke. It provides a fascinating glimpse of what is it to experience the self from the inside, how as energetic beings we affect and flow with each other and how a deeper understanding of our true nature could really influence how we go forward in life as a species.

However it is an even more vital read for anyone who is working with or is close to someone recovering from a stroke as it highlights and explains the many recovery steps that were devised to help Jill and which could be applied to others. The book is available from Amazon and in book stores.

Amazon link

 

Additional resources:

Jill Bolte Taylor  drjilltaylor.com

Interview with Jill on caring.com

Watch Oprah interview Jill here

Ireland: www.stroke.ie

UK: www.stroke.org.uk

USA: www.stroke.org

Australia: strokefoundation.com.au

New Zealand: www.stroke.org.nz

Canada: www.heartandstroke.com

 

 

 

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