Thoughts on our visit to the stroke unit today
As the evening has worn on I have been feeling more and more shocked at the lack of support we have had. We were sent home from hospital with no speech therapy and no advice. We are now nearly onto the third week and have been told John wouldn't recieve speech therapy for six weeks. As you know we have been working hard at home and John is making a lot of progress.Nevertheless this appointment was distressing and undermining, we both felt that John was spoken to as if he was stupid and it was all very negative.Even telling John there was a 1 in 10 chance of developing epilepsy.
A lot of people would be waiting for the "experts" to help and would not really know how to go about helping themselves.But imagine if we were people who waited for the experts to help, the speech therapist we spoke to told us that most of the progress is made in the first nine to twelve weeks, but in almost the same breath she was telling us it would be nine weeks in all before John saw a speech therapist. How sad, someone could be left on the scrap heap, disabled and unable to work yet the potential is there, also economically that same person would be left needing state support for the rest of their life, it must economically be so much cheaper to give the help intensively as soon as the stroke has happened.
Here is a better way to treat a stroke survivor.
Recommendations for Recovery: Forty Things I Need Most
By Jill Bolte Taylor
Original Content | June 04, 2008 Comments (0) | Like This | Print
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.
Here is some good advice that would help someone to begin the process of recovery.
Peter G.Levine
-Recovery is hard work. If it’s easy, you’re doing it wrong.
-The absolute foundation of recovery from stroke is neuroplastic rewiring of the brain.
-What drives recovery are relatively simple concepts that have been used by athletes (and other hyper-skill learners), since the beginning of time.
-Recovery is best served by
Repetitive practice of movements…
…that are related to a task or tasks…
…that is/are important to the stroke survivor and that are practiced…
…many hours a day…
…and are made more challenging as skill is acquired.
A lot of people would be waiting for the "experts" to help and would not really know how to go about helping themselves.But imagine if we were people who waited for the experts to help, the speech therapist we spoke to told us that most of the progress is made in the first nine to twelve weeks, but in almost the same breath she was telling us it would be nine weeks in all before John saw a speech therapist. How sad, someone could be left on the scrap heap, disabled and unable to work yet the potential is there, also economically that same person would be left needing state support for the rest of their life, it must economically be so much cheaper to give the help intensively as soon as the stroke has happened.
Here is a better way to treat a stroke survivor.
Recommendations for Recovery: Forty Things I Need Most
By Jill Bolte Taylor
Original Content | June 04, 2008 Comments (0) | Like This | Print
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.
Here is some good advice that would help someone to begin the process of recovery.
Peter G.Levine
-Recovery is hard work. If it’s easy, you’re doing it wrong.
-The absolute foundation of recovery from stroke is neuroplastic rewiring of the brain.
-What drives recovery are relatively simple concepts that have been used by athletes (and other hyper-skill learners), since the beginning of time.
-Recovery is best served by
Repetitive practice of movements…
…that are related to a task or tasks…
…that is/are important to the stroke survivor and that are practiced…
…many hours a day…
…and are made more challenging as skill is acquired.
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