The Overcoming Stroke Resource (OSR) is a shared resource for stroke survivors and their advocates, loved ones, and caregivers who will accept nothing less than “Like It Never Happened”. Organized by stroke survivor Bob Butler to bridge the gap between medicine’s minimalist focus on Activities of Daily Living (ADLs) and a full – like it never happened – recovery. Read more about Bob Butler’s pre-stroke career and a magazine article about his stroke recovery. Check out the Videos page for before and after videos of Bob’s continuing recovery. Follow Bob’s athletic training progress on Strava.
OSR is specifically intended as a resource for people with severe strokes who one way or another have been determined by insurance, government, and medicine that further recovery is not deemed medically necessary. Even though they may have stopped helping, government and medical institutions can have a lot to say about anyone else that tries to help. Therefore, we feel it is prudent to offer the following legal notice:
Nothing in or about OSR is intended to diagnose, treat, cure or prevent any injury, disease, or medical condition.
Generally, OSR operates where medicine ends and fitness and wellness begins. We are not practicing medicine, offering medical advice, or offering any other professional (legal, financial, etc.) advice or service. No accountant, doctor, lawyer, therapist, trainer, or any other professional relationship of any kind is established by the offering or use of anything in OSR. If you have access to professional support, OSR is meant to compliment that support, not replace it. Anything learned at OSR should be discussed with professional support and reviewed in comparison with other authoritative sources whenever possible.
OSR is not for everyone who has had a stroke and we do not focus on all dimensions of stroke, such as causes, prevention, and critical care. OSR’s focus is people who have a significant stroke disability, have reached the limits of their medical support, and who will settle for nothing less than a full recovery, no matter how long it takes. For many, full recovery is an ambitious goal that requires a realistic and on-going self-assessment of your overall health, resources, support, perseverance, and patience.
We are sharing personal experiences and knowledge we have accumulated from our own journey toward full recovery from a severe stroke, plus the contributions and comments of our participants. Contributions and comments from participants are moderated only for compliance with courtesy and decorum. OSR does not moderate for the truthfulness, accuracy, or usefulness of participants contributions or comments. As with any attempt to learn from the experiences of others, there is a risk of less than desirable outcomes from using this knowledge because of unknown, or not fully understood, differences in circumstances among individuals.
Bob Butler is not a doctor, therapist, scientist, researcher, or any kind of health professional, although their experience and expertise will be well represented in his footnotes and references. His primary qualification regarding OSR is that he is making remarkable progress recovering from a severe kind of stroke, a vertebral artery dissection, (VAD) resulting in hemiplegia (completely paralyzed on one side). Sometimes referred to as the “athlete’s stroke” (at least Bob likes to think of it that way) VAD is rare causing only 2% of all ischemic strokes and is a leading cause of stroke in young and otherwise healthy patients. In addition to actually living a full recovery effort, Bob has a solid record of innovation and a background in technical and scientific publishing, which gives him with a deep respect for the pros and cons of both the scientific method and the anecdotal approach. This particular background and experience is proving useful in sorting through the largely confusing, contradictory, and mostly inadequate information available on stroke full recovery.
As you have undoubtedly heard over and over again as you tried to get information on how your stroke will play out, every stroke is different and no one can say what exactly will result from any particular recovery effort. Frustrating, but true, this also means it is very unlikely your requirements and results will precisely match Bob’s. It is best to think of OSR as a tool kit containing many tools, some will help you, some will not… and some just should not be used in your situation. You must at all times remain responsible for the choice and use of the tools used in your recovery.
In addition to the health and personality prerequisites, support and resources are an important aspect of a full recovery program. OSR is going to share ideas that will involve expenditures not likely reimbursable by government or insurance. OSR believes stroke survivors should be prepared to face the sad reality that, if the total costs from onset of a stroke to full recovery were calculated, the portion covered by government or insurance is the smallest by far of any major medical condition. If you think you’re entitled to have all the costs of a full recovery covered and you should not have to spend out-of-pocket, have a heart attack instead. OSR is fully aware that very few people have extra financial resources just laying around. But the sooner the necessary changes are made to free up the resources you’re going to need to fully recover, the better.
Bob Butler has an extraordinary advantage regarding stroke recovery. Karen, his wife of over 22 years, is an expert in stroke recovery and wants her husband back the way he was. She is a physical therapist (with a hospital administration MBA) specializing in stroke and head injury. Her 30-year career includes being the head of the physical therapy department of a 200-patient hospital specializing in head injury and stroke long-term rehabilitation in Boston. She was also the author of a chapter in a well respected reference book on the management of spasticity due to stroke and head injury. She is a tireless researcher and will endeavor to keep Bob aware of the latest developments in science and medicine. She also keeps Bob aware of the challenges faced every minute of every day by the professionals and caregivers undertaking their best efforts to help stroke survivors.
Granted, having a top therapist at home daily may seem like a recovery scenario that will be difficult to replicate. But 90% of these benefits can be realized by anyone who understands and truly believes that full recovery is a 24/7 (yes, while you sleep too… more on that later) multi-year process. Full recovery does not happen in a few months of a few hours of therapy a week, even with the addition of a few hours of daily therapy homework. This is what you learn from living with your therapist. The other 10% can be made up of whatever therapy, recovery support, and knowledge resources, such as OSR, you can buy, beg, borrow, or steal.
In OSR, the science and medicine will be interpreted and communicated through the experience of someone actually going through a tough recovery. The idea here is to make the information on the science and medicine of recovery more usable. As a result it is likely some, hopefully small, degree of the precision of the pure science and medicine will be lost for the sake of the usability of the information by stroke survivors. This will most likely occur where there is a lack of consensus, conflicting results, or inadequate information from science and medicine.
OSR is organized differently than most stroke recovery resources. Traditionally, stroke resources are organized by the part of the body that is affected, such as speech, gait (walking), balance, etc., or by professional discipline such as physical therapy, occupational therapy, speech therapy, etc. (which are themselves organized by the part of the body affected). OSR believes this is appropriate for initial professionally-directed acute care, but may not be the best approach for long-term stroke survivor-directed full recovery. We believe the stroke survivor will benefit from a better understanding of the underlying systems causing the deficit in a particular body part. This may enable them to better customize their therapies and fitness plans, and better interpret the results.
Therefore, OSR will focus on the 5 what we call “actionable areas” that we believe will have the most impact on a full recovery; alleviating Atrophy, correcting Compensations, taming Tone, nurturing Neurons, and solving Sensory deficits (ACTNS – remember it as “actions”). OSR will have a category for each of these 5 actionable areas, plus supporting categories, such as Videos, Living for Full Recovery, Tips & Tools, Resources, Research, and Glossary.
Every severe illness has its own set of complications, frustrations, and disappointments and we don’t mean to suggest in the following discussion that strokes are any more traumatic than cancer, heart disease, and the long list of horrible things that can go wrong with the human body. However, stroke recovery has some special dimensions that contribute to the need for the kind of support envisioned by OSR.
The Science is Lagging – Although there is a lot of exciting research underway on the brain, the sad truth is that the brain is currently one of the least understood areas of the body. Because of its complex structures and elaborate electrochemical processes, brain research is largely a slow, groping-in-the-dark process, fraught with profound ethical and moral issues, and heavily dependent on slowly emerging megabuck technology.
A Vast Scope of Injury – Stroke recovery is the direct result of the location and extent of the injury to the brain. There simply is an astronomical number of combinations and permutations of locations and extents of the brain injury resulting from strokes. Therefore, there is an enormous range of types and extent of disability that needs to be treated by the stroke recovery professionals and institutions. This requires stroke therapy to be very customized and very hands on by highly skilled practitioners, and as a result, very expensive over the full recovery term.
Modern medicine has been coping with this for years by consistently lowering standards for what passes as stroke recovery. It has now gotten to the point that if you can perform the minimal activities to sustain your life (the so-called ADLs), most medical care stops. Imagine if you needed a quadruple bypass heart surgery, but the cost-control-driven standard of care was to replace only one artery, instead of replacing the four arteries needed to restore you to full health, because one good artery is all you needed to dress yourself, feed yourself, use the bathroom, and sit in the recliner all day. It’s a good thing the incremental cost of repairing the additional arteries is low. If only the same were true for stroke recovery.
Recovery is Slow, Slow, Slow – The brain and related neuromuscular systems have a remarkable ability to recover, but they are not in a hurry. These systems are many times slower to heal than the other healing processes we have all become familiar with growing up. It might take 6 weeks to heal a broken arm and 6 years to fully recover from a stroke. That’s just the way it is. Accept it. Slow healing translates into stroke recovery being very long term, frustrating and again expensive as even the most frugal budgeting adds up over a long time.
Misguided Perceptions – Stroke is thought to be a disease of the old (“…they were 80 something and had a good life”), or those who didn’t take care of themselves (“…they were overweight and didn’t exercise”), or both. Bob was very surprised to see in his 15 months of inpatient and outpatient care working alongside dozens of patients, the majority of his fellow patients were relatively young, ranging from 30 to 60 and relatively fit. Recent statistics support his observations that there has been a not well understood dramatic increase in strokes in people under 80. Perhaps these misperceptions are the reasons stroke recovery does not get a priority in the recruitment of talent, research, and funding.
Big Medicine and Missing Metrics – Whatever your view on who will be running medicine in the future, whether private insurers or government, or any combination of the two, one thing seems inevitable… medical organizations, institutions and agencies are getting larger at an extraordinary rate. The larger the organization, the more bureaucratic and structured its internal processes become. These internal processes absolutely require an objective measurement of results. One thing 30 years in business, some of it as a c-level executive of a global company, has shown Bob is that without performance measurement metrics, you can’t calculate the internal rate of return (IRR) of an investment. As a result, no IRR, no funding. The systems for measuring the performance of stroke recovery therapies are crude, unreliable, and generally not effective. The future of funding for stroke recovery is likely to suffer the same fate as mental health care, another area of medicine troubled by ineffective measurements of treatment performance.
In business as companies get larger, the argument is made they get more efficient. However, the downside is decision makers get more and more removed from their customers by layers of organization and impersonal metrics. The result is often products and services become less and less what the customer wants and needs, and there are fewer choices. It would be hard to argue that the same thing is not happening in modern medicine. Because stroke recovery requires so much decision maker attention and doesn’t lend itself to performance metrics, it is particularly vulnerable to the downside of big medicine.
These special dimensions of stroke recovery will have a direct impact on your recovery. The bottom line is that for reasons no one can really change or control, the financial resources, professional expertise, and institutional support you need will run out long before you have fully recovered. More than virtually any other major medical condition, the extent of your recovery will be largely dependent on your commitment and ability to acquire support and resources on your own, and your commitment and ability to educate and motivate yourself. The OSR intends to be a productive part of your efforts toward full recovery.
OSR will be filled with ideas for improvements in stroke recovery of varying degrees of reliability and usefulness. We expect the participation of readers will help us make these ideas better. Also, it is often difficult to suggest improvements without implying criticism of the status quo. However, OSR has no interest in criticizing or vilifying any people, practices, or institutions and ask our participants to refrain from doing so as well. Almost without exception, in our experience people are doing their best to help stroke survivors under very complex and difficult circumstances. While we will point out what we believe are areas for improvement, we at all times believe people are working in good faith with a genuine desire to help stroke survivors (with the possible exception of some of the claims processors at the medical insurance companies).
Use of OSR is an acknowledgement and acceptance of these statements.
Welcome and thanks for joining us. We look forward to your ideas, experiences, feedback, and participation.
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