Patient and caregivers taking control of stroke recovery
Have you or a loved one had a stroke? Were you confused and unprepared for how your life would change?
On 13 November 2007, my husband had a transient ischemic attack. I recognised the signs of stroke and called an ambulance. He was in the emergency department within 90 minutes. Sometime within the next 24 hours, whilst in the hospital, he had a "real" stroke that left him paralysed on his left side.
Both of his carotid arteries were badly blocked at the time of the stroke. One closed totally, causing the TIA, some plaque dislodged from the other, and lodged in his brain causing his stroke. Over the next month, he had some preliminary rehabilitation and a stent inserted in his left carotid artery. He was discharged from hospital before Christmas and started an outpatient rehabilitation program for about five months.
At that point, the rehab doctor had decided that he had achieved all he was going to, and didn't want to see him again. Basically, we were on our own when the program ended. He could walk, albeit for short distances and awkwardly. He could talk. But his left arm and hand were pretty much useless. And I knew that there were other subtle changes that I didn't know how to describe properly. I had asked for a cognitive test and the occupational therapist did some very simple testing that told us nothing.
With no ongoing rehabilitation activities, his physical capabilities declined. We searched around and found a number of therapies that we could do ourselves. We got him into a public rehabilitation program, where he saw a rehab doctor every few months. He continues to monitored by the neurosurgeon and neurologist annually.
But my overriding concern was:
Why is no one offering a coordinated approach to the rehabilitation effort?
The physiotherapist works on something for a while, the occupational therapist works on something else. Maybe they chat, but it doesn't seem to be the case - and this is in our experience at three hospitals!
The rehab doctor might talk to the physical therapists, but doesn't seem to do anything apart from have a chat with us and say you're making a reasonable recovery. I bet it would be different if THEY were the ones who had the stroke! I bet then they'd be a lot more focused on a coordinated care effort!
We also read a book that inspired both of us. It gave case study after case study of stroke patients making a big recovery. This led to further reading and research. The interesting topic of brain plasticity came up again and again. This is the brain's ability to adapt and work around a brain injury. What continues to stagger me, is that no one in the medical profession gave us a glimpse of this! I heard about the book whilst listening to an interview on the radio!
It was incredibly hard to find useful information to support both my husband and I. We needed to understand what was happening and what the stroke recovery approach was. But information from the stroke support services was high level and non-specific. Information from the medical people and physical therapists was specific to their own domain - despite them being caring and well intentioned.
This lens brings together the information that I've found about stroke recovery. I hope it can make a difference to you or your loved one.
On 13 November 2007, my husband had a transient ischemic attack. I recognised the signs of stroke and called an ambulance. He was in the emergency department within 90 minutes. Sometime within the next 24 hours, whilst in the hospital, he had a "real" stroke that left him paralysed on his left side.
Both of his carotid arteries were badly blocked at the time of the stroke. One closed totally, causing the TIA, some plaque dislodged from the other, and lodged in his brain causing his stroke. Over the next month, he had some preliminary rehabilitation and a stent inserted in his left carotid artery. He was discharged from hospital before Christmas and started an outpatient rehabilitation program for about five months.
At that point, the rehab doctor had decided that he had achieved all he was going to, and didn't want to see him again. Basically, we were on our own when the program ended. He could walk, albeit for short distances and awkwardly. He could talk. But his left arm and hand were pretty much useless. And I knew that there were other subtle changes that I didn't know how to describe properly. I had asked for a cognitive test and the occupational therapist did some very simple testing that told us nothing.
With no ongoing rehabilitation activities, his physical capabilities declined. We searched around and found a number of therapies that we could do ourselves. We got him into a public rehabilitation program, where he saw a rehab doctor every few months. He continues to monitored by the neurosurgeon and neurologist annually.
But my overriding concern was:
Why is no one offering a coordinated approach to the rehabilitation effort?
The physiotherapist works on something for a while, the occupational therapist works on something else. Maybe they chat, but it doesn't seem to be the case - and this is in our experience at three hospitals!
The rehab doctor might talk to the physical therapists, but doesn't seem to do anything apart from have a chat with us and say you're making a reasonable recovery. I bet it would be different if THEY were the ones who had the stroke! I bet then they'd be a lot more focused on a coordinated care effort!
We also read a book that inspired both of us. It gave case study after case study of stroke patients making a big recovery. This led to further reading and research. The interesting topic of brain plasticity came up again and again. This is the brain's ability to adapt and work around a brain injury. What continues to stagger me, is that no one in the medical profession gave us a glimpse of this! I heard about the book whilst listening to an interview on the radio!
It was incredibly hard to find useful information to support both my husband and I. We needed to understand what was happening and what the stroke recovery approach was. But information from the stroke support services was high level and non-specific. Information from the medical people and physical therapists was specific to their own domain - despite them being caring and well intentioned.
This lens brings together the information that I've found about stroke recovery. I hope it can make a difference to you or your loved one.
Reader Profile - Tell us why you're interested in stroke
Loading poll. Please Wait...
Stroke Recovery Advocate Blog
Patient and Caregiver: Taking control of stroke recovery
On our blog, we feature:
- News about new advances in stroke recovery
- Insights from real experience
- Information about interesting resources to assist with stroke recovery.
- News about new advances in stroke recovery
- Insights from real experience
- Information about interesting resources to assist with stroke recovery.
Fetching RSS feed... please stand byWhat is a Patient Advocate?
And why you need one !
When someone has a stroke (or indeed suffers any major illness or physical accident) we react. We trust the medicos who offer us advice and guidance. Most of the time, we believe that they know what's best.
But the problem is, you're just the next person for them to deal with. When you walk out the door, there is still a queue of people waiting to see them, and they've already seen a queue of people before you. No matter how caring they may be, they have little choice but to push you through the system and to move on to the next person.
Medicine, to a large extent, has been reduced to treating patients as numbers - both in terms of the volume of people to be treated, and by the application of "averages" to the treatment options.
We were told that "most" people achieve all that they will in terms of physical recovery in the first three months post stroke. Had we accepted that advice, then the significant progress we have achieved after that time would not have happened.
Indeed, our health insurer allowed five months of outpatient rehab, then turned off the funding. In the next two months, function degenerated. We didn't know what to do. That's when we read "The Brain that Changes Itself" - I heard the author interviewed on radio and caught his name.
This pointed us in the right direction for our research. And that was pretty hard. There are more stroke websites around now, but very few mention Constraint Induced Therapy. If you google CT, you'll mostly find medical journals, so this really isn't in the mainstream.
Another book that I read, courtesy of a friend, was Stephen Schneider's "The Patient from Hell". He was diagnosed with a relatively rare form of cancer. His story is about how he and his wife managed the medicos to get the most appropriate treatment for him, instead of the "by the numbers" treatment that they wanted to give him.
There is a link to Stephen Schneider's book on this lens.
But the problem is, you're just the next person for them to deal with. When you walk out the door, there is still a queue of people waiting to see them, and they've already seen a queue of people before you. No matter how caring they may be, they have little choice but to push you through the system and to move on to the next person.
Medicine, to a large extent, has been reduced to treating patients as numbers - both in terms of the volume of people to be treated, and by the application of "averages" to the treatment options.
We were told that "most" people achieve all that they will in terms of physical recovery in the first three months post stroke. Had we accepted that advice, then the significant progress we have achieved after that time would not have happened.
Indeed, our health insurer allowed five months of outpatient rehab, then turned off the funding. In the next two months, function degenerated. We didn't know what to do. That's when we read "The Brain that Changes Itself" - I heard the author interviewed on radio and caught his name.
This pointed us in the right direction for our research. And that was pretty hard. There are more stroke websites around now, but very few mention Constraint Induced Therapy. If you google CT, you'll mostly find medical journals, so this really isn't in the mainstream.
Another book that I read, courtesy of a friend, was Stephen Schneider's "The Patient from Hell". He was diagnosed with a relatively rare form of cancer. His story is about how he and his wife managed the medicos to get the most appropriate treatment for him, instead of the "by the numbers" treatment that they wanted to give him.
There is a link to Stephen Schneider's book on this lens.
The Patient from Hell
A patient advocate case study
Our experience with the medicos, and our research, has led us to believe that if the medicos were the patient, then they'd be expecting a lot more and be taking a lot more interest in the recovery process well beyond when the stroke occurs.
We've written an ebook to offer advice and the alternatives for people who are caring for a stroke patient. You can read about it here.
We've written an ebook to offer advice and the alternatives for people who are caring for a stroke patient. You can read about it here.
Constraint Induced Therapy
Real hope for stroke recovery
We found out about Constraint Induced Therapy when we read "The Mind that Changes Itself". If you or someone you care for has had a stroke, we strongly recommend that you buy and read this book. The book is featured elsewhere on this lens.
Dr Edward Taub created Constraint Induced Therapy. He researched the potential of the brain to adapt after injury. (There is quite a long story about his professional career, some of which is described in the book.) If you want the short version of his research, see our website page.)
After his animal research, Dr Taub developed Constraint Inducted Therapy (also called CT) as a therapy for stroke patients who had lost use of a limb.
Constraint Induced Therapy should be focused towards activities of daily living (ADL). This means things like picking up a cup, combing hair, using an eating utensil.
The therapy is based on three principles:
Supporting Evidence
There are numerous verified trials of Constraint Induced Therapy delivering significant improvement for stroke patients. This therapy, and derivations of it, appear to offer the best results at the moment.
The Downside
The application of the principles of Constraint Induced Therapy result in the downside. Patients are required to attend day-long therapy sessions for consecutive days. The repetition can be frustrating and tedious.
In addition to treatment, the patient is required to constrain their "good" limb for all waking hours, further adding to the discomfort and frustration.
Further the therapist effort is significant, with potentially one therapist for each patient. This is a high cost, which is typically not covered by medical insurance.
Many patients choose not to undertake this therapy, and a good proportion of those who do choose to do it, drop out before the treatment period is finished.
Dr Edward Taub created Constraint Induced Therapy. He researched the potential of the brain to adapt after injury. (There is quite a long story about his professional career, some of which is described in the book.) If you want the short version of his research, see our website page.)
After his animal research, Dr Taub developed Constraint Inducted Therapy (also called CT) as a therapy for stroke patients who had lost use of a limb.
Constraint Induced Therapy should be focused towards activities of daily living (ADL). This means things like picking up a cup, combing hair, using an eating utensil.
The therapy is based on three principles:
- Constraint - use of the affected limb is physically constrained
- Forced use - the patient is forced to use the affected limb
- Massed practice - the patient does intensive repetitions of the activity.
Supporting Evidence
There are numerous verified trials of Constraint Induced Therapy delivering significant improvement for stroke patients. This therapy, and derivations of it, appear to offer the best results at the moment.
The Downside
The application of the principles of Constraint Induced Therapy result in the downside. Patients are required to attend day-long therapy sessions for consecutive days. The repetition can be frustrating and tedious.
In addition to treatment, the patient is required to constrain their "good" limb for all waking hours, further adding to the discomfort and frustration.
Further the therapist effort is significant, with potentially one therapist for each patient. This is a high cost, which is typically not covered by medical insurance.
Many patients choose not to undertake this therapy, and a good proportion of those who do choose to do it, drop out before the treatment period is finished.
Youtube video on Constraint Induced Therapy
We've discussed Constraint Induced Therapy above. Here is a link to a Youtube video from TV stations KCAL9 with the story of someone who has used the therapy successfully.
powered by Youtube
Modified Constraint Induced Therapy
Making it more practical for patients
Modified Constraint Induced Therapy (mCIT) is an evolution of the original concept of Constraint Induced Therapy (CT) that is less onerous, yet appears to offer similar potential for improvement.
Both CT and mCIT are relevant for recent and long term (chronic) stroke patients. Most of the research to date has been conducted on stroke patients who suffered their stroke years before.
The difference of mCIT over CT is that most of the therapy is conducted at home by the patient, with only three x half hour sessions with the therapist each week. Typically, the treatment occurs over a ten week period.
A key researcher in this area is Steven Page. He has extended the research to include "mental practice" and found that guided mental practice can also significantly improve the improvement achieved.
See our website for more info.
Both CT and mCIT are relevant for recent and long term (chronic) stroke patients. Most of the research to date has been conducted on stroke patients who suffered their stroke years before.
The difference of mCIT over CT is that most of the therapy is conducted at home by the patient, with only three x half hour sessions with the therapist each week. Typically, the treatment occurs over a ten week period.
A key researcher in this area is Steven Page. He has extended the research to include "mental practice" and found that guided mental practice can also significantly improve the improvement achieved.
See our website for more info.
The Brain that Heals Itself
Offers hope for stroke patients
When we found this book, it gave us hope for the future. Basically, the book describes new learnings about brain plasticity, or neuroplasticity. This is the brain's ability to adapt.
Stroke is brain damage. Neuroplasticity means that the brain can work around the brain damage and reorganise so that the function lost through stroke can be re-learnt with other parts of the brain taking on the responsibility for that function.
This book is written in an easy-to-read manner. It has also become a best seller.
Stroke is brain damage. Neuroplasticity means that the brain can work around the brain damage and reorganise so that the function lost through stroke can be re-learnt with other parts of the brain taking on the responsibility for that function.
This book is written in an easy-to-read manner. It has also become a best seller.
The Mind & The Brain
Neuroplasticity and the Power of Mental Force
This book is a more complex read than "The Brain that Changes Itself". It takes information about neuroplasticity to the next level of detail. I would recommend reading "The Brain that Changes Itself" first, and then, if you're ready for more taking on this book.
The depth of information is greater and, if you can get through it, it really offers even more hope and encouragement! This goes beyond "constraint induced therapy" to adding the power of mental force through visualisations to effect recovery.
The depth of information is greater and, if you can get through it, it really offers even more hope and encouragement! This goes beyond "constraint induced therapy" to adding the power of mental force through visualisations to effect recovery.
Visit the Stroke Recovery Website for more information
www.stroke-recovery-advocate.com
Our Stroke Recovery Advocate website contains heaps more information about stroke.Information is categorised around:
- The early days post stroke
- Brain recovery
- Physical recovery
- Emotional recovery
- Alternative therapies.
There are advice pages, and you can add your advice to share with readers too.
What do you think of this lens?
Give us your feedback and let us know what else you'd like to see
We'd like your feedback, particularly on what works and doesn't work and what info you'd like to see so that this lens can be as helpful as possible.
submit
-
Reply
-
Mary-Jane Francis
Jun 22, 2009 @ 1:48 am | delete
- There is nothing like this out there for people who have suffered stroke. Really useful and relevant information and advice
-
-
Reply
-
bmpaa
Jun 21, 2009 @ 6:43 pm | delete
- I am delighted to see a site that offers stroke patients hope for being the best they can be.
-
-
Reply
-
jacsha0
Jun 21, 2009 @ 6:13 pm | delete
- What a brilliant and helpful site. Thank you
-
-
Reply
-
Maggie
Jun 21, 2009 @ 5:09 pm | delete
- Brilliant Bronwyn.
Typo in required in The Downside para:
In addition to treatment, the patient is reuqired to constrain their "good" limb for all waking hours, further adding to the discomfort and frustration.
Regards - Maggie
-
by stroke-recovery-advocate
stroke-recovery-advocate
Bronwyn's background is in IT and project management. She and her husband ran a successful business consulting firm.
In November 2007, Peter her husb...
more »
- 1 featured lens
- Winner of 2 trophies!
- Top lens » Stroke Recovery Advocate
Feeling creative?
Create a Lens!
Explore related pages
- Science Podcasts Make Learning Fun and Relevant : Science for Kids Science Podcasts Make Learning Fun and Relevant : Science for Kids
- Mindsight - A Book Summary Mindsight - A Book Summary
- Mind Fitness - Improve Your Brain Power Mind Fitness - Improve Your Brain Power
- The Brain That Changes Itself The Brain That Changes Itself
- Free Games Online Free Games Online
- Brain Injury Treatment Brain Injury Treatment
