I was 51 years old when I had a massive stroke that left me with left side paralysis. prior to the stroke I was a classroom teacher and very athletic. I ran the LA marathon twice and every summer would backpack in the mountains of California. Mr. Bacter's story has inspired me to keep working hard to reinvent my life.
Thank you for this inspiring story. I think folks are getting too hung up on the fact that had “resources”.
I think the key was his determination to get 100% better, and he worked very hard to make it happen.
I am 66 and had 2 strokes on March 23 of this year.
1) Medicare paid for my hospital of choice, for time in a rehab center and home health folks who came to my house for: physical therapy, occupational therapy and speech therapy. And I believe they will pay for some out patient therapy tomorrow too.
2) As part of my therapy (that I made up): I read a couple of New York Times articles out loud every day, I read free instructions and do the art projects (not always great, but I do them) from Pinterest, I do laps in my house. All of these activities are free.
3) Every stroke is different and each person is different, so what you can accomplish and how long it takes will vary. But if you don’t believe you can improve, you will be right. Believing you can improve and trying even the smallest things are the key to progress and improvement. And it may take years, as in this article, but amazing things are possible a lot of cases.
2
My son was born with aphasia (or, more accurately, global dysphasia: the inability to process expressive or receptive language). His speech therapist said it was as though he had had a stroke in utero. He started therapy with her at age 4. Special schooling plus her private therapy for five years put him on the right track; now, at the age of 37, we like to say "if you didn't know, you wouldn't know." He was also born with central auditory processing disorder, a learning disability.
He is doing wonderfully, married, a college graduate, well-employed, very happy. No, we didn't have tons of money. We were fortunate in both our health insurance and in the therapist who had seen exactly one patient similar to him before. "Although," she said, "not nearly as bizarre" referring to his speech, or lack thereof. She knew just how to word the letter to the insurance company, to change their verdict from "he's done with therapy" to open-ended therapy. One day, it was all over. His school said he had outpaced them, and his therapist said he no longer needed her. Fly, little bird. Now he talks incessantly. And he has a lot to say.
12
37 years ago, in his early 60s, my late father was recovering from his second stroke. Not quite as severe as Mr. Baxter's, he was weakened by it, had slurred speech, an inability to judge the volume of his own voice and, most distressing to him, impaired balance, which the neurologist told him he'd never get back. We brought him for a consult with the wife of my graduate advisor, a rehab-medicine specialist. She had had great success with some patients during stroke recovery, using high-intensity vibratory stimulation. She asked him to carry out some movements, noting where his balance difficulties were. It would take him about 8 steps to turn around. She shoved a vibrating device in his right hand, cranked up the intensity, and asked him to repeat the movements. He still shuffled along, but nimbly pivoted on one foot to turn around as if he had been lying to us all this time, his balance restored. As close to an instant miracle as I've ever seen. He never used a cane again, for the rest of his life. The therapist felt that it could have actually been ANY intense stimulation, but vibration was a modality that didn't demand or impair attention like a loud noise, bright flashing light, or strong smell, was not socially disruptive, and could be applied privately (he kept the vibrator up his shirtsleeve). Remarkable. I wouldn't have believed it without witnessing it myself.
12
I think this and similar types of columns would be much more useful if the authors cited medical specialists and research. Without that, this is simply the personal story of 1 individual--admittedly inspiring, but not necessarily adaptable or applicable to others.
13
@Howard Kay,
It is more than inspiring to many of us I believe as we know the recounting of the "personal story" is in fact a truth. It gives us the tool to speak to the therapists and Doctors that have our loved ones care about these findings.
I don't know many people in the general public that would be able to site the things you are asking for, unless they are a professional in the field themselves.
1
@Howard Kay
The important thing about the story of recovery (and others related in this comment section) is that it provides an example of what is possible. A lesson infinitely preferable to summary declarations about its improbability.
I had a stroke on 8/7/15 playing golf with my son at the age of 58. A blood clot of unknown origin was blocking an artery to my brain and my son saw the right side of my face droop. Thankfully, I was in the ER within 45 minutes and a neurosurgeon was on duty who performed a procedure where a wire was inserted in my groin, threaded to my brain where the clot was pulled out. This person saved life as I know it today.
The clot broke apart when pulled and it unnerves me to think it may still be in my body. This happened during a time when the company I worked had been sold along with my job.
My right frontal lobe was significantly damaged and I have moderate weakness on my left side. So very fortunate.
What drives me crazy is when longtime friends tell me I look just fine without understanding how scrambled my thinking feels. Trying to concentrate knocks me out.
Made the mistake of filing for SS disability on my own and was denied. An attorney said I had done too good of a job in preparing the app and an appeal was a long shot. I need income and plan to file at age 62 in October and have found another lawyer who has filed a new disability application which he says will also be denied. Then he plans to appeal that decision and get in front of a judge. I'm not confident about the outcome.
11
@JP,
I wish you good luck. I had dealt with SS Disability and it takes persistence to get to a satisfactory conclusion on your case. In my predicament it was about two and a half years, but keep at it you can do it.
This is what happens for rich people. For other people, they can’t work anymore, when they can’t afford to live in their house anymore, there is only one thing left to do. I had a stroke caused by a pfo. I don’t have any resulting medical bills, yay Australia, but yeah.
34
What perfect timing! A friend of mine suffered a severe aneurysm 5 weeks ago and just got moved from the hospital to a full-time rehabilitation center. A huge move, step in her recovery! Looking forward to the next article and will definitely buy the book. Thank you NYT and thank you Ted!
5
I had a cerebellar stroke 20 years ago. Did a lot of rehab and yoga. Went back to work. And yes, my heavy German accent helped me hide my severe speech impediment. In fact, 3 days into the hospital stay, I told a medical student who interviewed me that prior to my stroke I spoke perfectly unaccented English but now people told me I had a German accent.... How could that have happened?
18
My life was good. I was an award-winning communications specialist and writer, I was in the midst of a dream project on a documentary film; my children were launched and, after 32 years of marriage, my husband and I had finally mellowed into two Baby Boomers enjoying the ride. My son would be getting married in eight weeks on Martha’s Vineyard. There was much to look forward to.
When I went to pick up my 86-year old mother that Easter Sunday morning, traffic was light on Interstate-95. It had built up by the time we were back on the highway, chatting about the day’s family gathering at my and the upcoming wedding. Then, ten minutes into the trip, I noticed my right hand suddenly shaking. As if the car were driverless, it veered on a curvy trajectory across the highway. Thinking fast, my mother hijacked the wheel and crashed the car into a safety rail that kept cars from going off a bridge that ran over a small tributary of water.
So began my journey into Strokeland. I was buoyed by the love and support of family and friends, from ICU to acute in-patient care to relearning how to speak and walk. Simple things like cooking, eating and bathing, this time with one hand, were just a few of my challenges. There were struggles and triumphs as I transformed my fears and pain into patience and profound joy, Though it was two years ago, and there are days when I'm hindered by a feeling of "strokiness," I continue to claim my new, yet very changed, life.
50
This makes me wonder if I did the right thing in refusing a gastric feeding tube for my husband (aged 72). It was in his Advanced Directives not to have one, and his stroke caused him to be unable to walk, swallow or use the right side of his body. In addition his central vision was gone, so reading and watching TV wasn't much fun either. He said he didn't want to go to a nursing home, so we arranged for hospice care and he died three weeks later. His grown children from his first marriage wanted him to live and haven't spoken to me since. The neurologist said there was no hope of recovery, but it is a tough decision to make and I will be haunted forever by "what if?"
29
@EmmaMae You did the right thing. It's hard to have to make those decisions, but clearly you did what he wanted and he is very fortunate you were strong enough to make them.
40
My husband died at 51 of a massive stroke. If he had survived it (massively disabled) and needed a gastric tube as part of long term care, I wouldn’t have allowed it. He had been adamant about not being subjected to that kind of life sustaining treatment. It was devastating to lose him, but would have been equally as devastating for him to have survived.
28
@EmmaMae Don't let the success of one very stubborn, very young and well-supported individual undermine your support of your husband's choice. The stroke patient has to WANT recovery very very badly. Many don't regain much function and linger for years in nursing homes. His kids should visit a nursing home and talk to the staff about what life is like for most stroke victims.
29
“Family members and friends never gave up on my recovery, nor did they ever treat me as if I were lost, and because of that, I never felt lost.''(NYT)
You also were lucky to have had the money to afford all the numerous health specialists who helped you recovered, as well as the people who drove you and took care of your daily toilet and health care, cleaned your house, paid your bills and took care of everything around the house. Otherwise you would have lost everything you had before your accident. That is why a universal health and medical insurance is necessary. Otherwise you loose everything because of the costs of the medical bills let alone the fact that you are powerless when you can't speak nor understand what's going on in your own life because of you medical condition.
I congratulate you for the help you provide patients who suffered a condition like yours. Your contribution to making this world a more humane place for our children is a good example of what it means to be your brother's keeper.
70
Many here have already commmented on how untypical this story is and how this recovery would have been impossible without lots of money - isn't everyone already tired of rich people writing books and articles about their amazing recoveries? I'll add that I'm tired of people saying their lives got better after a stroke, or cancer, or what have you. These are narratives we devise to help us through serious illness, but let's not try to fool others as well. Because nobody is fooled.
44
I speak from personal experience here. One’s life objectively may get worse, but often you feel better about it because you are grateful for what remains. No more whining that you have to get up and go to work, but thankfulness that you lived through the night. As my father used to say, “every day I wake up is a good day.”
22
@S North
"....and how this recovery would have been impossible without lots of money..."
Doesn't this just pertain to the average NYT reader? My impression is that NYT's readers are mostly well-heeled, well-educated, individuals with reasonable means (look at which advertisers run on the site).
Most of the NYT articles are so to say "preaching to the converted". But isn't that the case with all media - most media consumers only read what they already believe and what pertains to "their values", or approximately the social milieu in which they live?
Wow! Congratulations Mr. Baxter and thank you, Mrs Brody.
4
I started a (continuing) blog about my experiences -"Geoffrey Winn had an ischemic stroke results from a sudden cessation of adequate amounts of blood to the brain. He had an acute left middle cerebral artery (MCA) stroke caused by a clot in his mechanical aortic valve ." I have had a lot of feedback of how I learned to write about my feelings and to read again with aphasia, and the difficulty of learning. I wrote them because there is not a lot written by a stroke victim. Although Jane Brody is a great writer about her wellness articles, I wish more victims wrote about their feelings. Much more about recovery is what it feels like to have a stroke, not just the mechanics of recovery.
20
@Geoffrey well said!
3
After TBI, the useful advice i never received was this: "the life you had is gone and will not come back. You can have a good life, a productive life, a happy life, but you cannot have that life. Let go of it and build a new life."
Letting go of the fantasy of "full recovery" (reclaiming what was lost) and accepting the reality of rehabilitation (building anew on what remains) is liberating. When I looked back to my 18 year old self constructing my adulthood, and listed the personal characteristics that contributed (intelligence, optimism, grit), I was able to see the probability of a life built on what I was still able do using those capabilities.
35
@MizLoo I did not have a stroke but I had a catastrophic illness that has left me disabled. My nurse gave me the same useful advice. Some days it is hard to remember it, but for the most part I do have a very good, if different life than I imagined. I wish it were not so, but I am thankful to be alive and for the many blessings I do have.
9
I had a massive stroke - and almost died - at the age of 25.
Like Mr. Baxter’s stroke, my stroke was on the left side of my brain. A year and a half later, my aphasia is an enduring struggle and frustration. I cannot handwrite or type quickly or fluently. I lost my long-sought job in finance and my driver’s license, perhaps in perpetuity. I still have some trouble with my working memory and have anxiety and panic attacks when similar symptoms to my stroke present themselves.
In many ways, my life before my stroke has been lost to me forever.
However, I consciously choose to embrace this adversity for I know it is the wisest course. I completed my speech-language pathology, occupational therapy, and physical therapy program, enrolled in three university courses, and volunteered every week in the year since my stroke. I am now applying to programs that will propel me into my childhood dream job. Although I don’t speak as effortlessly as I once did or type or write as quickly as I once could, I am improving every day and soon hope to get back to my ‘new old self’.
45
@Tristyn
It's great to hear that you have come through this adverse situation so well and have courage to face future with such optimism. Your story shows human spirit at its best. Good Luck, may you become your 'new old self' at the earliest!
10
What an amazing, inspiring and touching story of surviving a stroke. After reading it, I noticed that many commenting here are not actual stroke survivors; they read his story and seemingly assumed that all strokes are the same, and that all survivors have a similar experience & outcome. And to add insult to injury, took him to task because he had the resources and post-stroke medical options unavailable to most. That said, I am a stroke survivor (2012), who had very little extra resources and no professional therapy — but I was able to teach myself how not to drag my foot; how not to slur certain words and how to slow down and REST whenever I felt (feel) overwhelmed. While having undiagnosed High Blood Pressure played a role in my ischemic stroke, being a Type A personality was also deemed a stroke-stressor. What I know for sure is that no two strokes are the same and everyone has a different outcome. I’m blessed that I’m still here to verbalize & explain all of this coherently — while continuing to live my best life-after-stroke.
30
Reading the article and comments raised myriad emotions. I had a "mild" brain injury with major consequences, physical, cognitive and emotional. Each injury is unique, as are each person's life circumstances. Many, many factors influence recovery, including access to high quality healthcare, financial and emotional support, education about brain injury, and having an advocate or the ability to advocate for oneself. Even with ideal care and circumstances not everyone can make the kind of progress this patient made. What I learned as a TBI survivor is that if you have met one person with a brain injury, you have met ONE person with a brain injury. To try to compare one to another is like comparing apples to oranges. We are each our own hero.
24
Mr. Baxter is very fortunate and a good attitude with excellent therapy is always important, but stroke prognosis and brain physiology is extremely complex and poorly understood. Recent studies using functional MRI and PET scans now show us that stroke recovery and the potential to recover from aphasia has mostly to do intact neural networks. Network assessments can predict long-term treatment response and will likely change the way we practice rehabilitation medicine in the future. We should give Mr. Baxter credit, yet in doing so, acknowledge that not everyone will recover with hard work, sports, and art.
Some individuals may have damaged neural networks that no amount of hard work or financial resources can fix. Let's not stigmatize those who have persistent struggles with aphasia or weakness as having less commitment to rehab themselves. Let's not pretend that anyone who throws enough money or energy into their neurologic recovery will always be rewarded.
25
@CM
As long as you're gainsaying the personal narrative of the story, I might as well gainsay your gainsaying by noting that knowledge of cell biology and neurology is advancing by leaps and bounds- and will continue to advance, as long as the needed resources aren't sapped by the sort of major catastrophes that stop or impede the progress of human civilization, like massively expensive wars and ecological devastation.
Given the continuing advances in modern biology and medicine (some of which are quite dramatic, with breakthrough potential) I don't see any compelling reason why even severe stroke patients should be advised to resign themselves to the inevitability of a lifetime with no hope of improvement or recovery.
I understand the merits of tempered and reasoned realism. But beware of carelessly using language in ways that that reify or reinforce the illusion of Stasis; that's a trap. What is now is not necessarily what is fated to be, always and forever.
1
In fairness to Mr. Baxter, he clearly admits that he had the financial resources and personal support to aid his recovery. The article does highlight the fact that what you can afford often determines how much you recover. But I think the larger point here is that recovery in some circumstances is technically possible -- and that's what a lot of stroke survivors are never told, regardless of their level of resources.
In my experience, many people with chronic conditions are just brushed off by the health care system, because recovery takes too long and is too cumbersome for the system to deal with.
25
Mr. Baxter brought incredible determination and fortitude, along with the healthcare opportunities afforded by his financial resources, to not only survive, but thrive in his subsequent life.
As many other commentators have pointed out, he had the financial resources to utilize the best that medical care and and support services can provide. This is the most important information that this column teaches us.
Mr. Baxter obviously can provide hope and a roadmap that can help stroke victims recover. But like many highly motivated and successful people, he doesn’t seem to recognize his good fortune in overcoming the challenges he has surmounted. More importantly, he has appears to have no conception of the challenges people without his means face in accessing rehabilitation facilities, from finding facilities people can afford, arranging transportation to and from rehab everyday life, getting occupational physical therapy at home, and even arranging shelter to accommodate his disabilities.
Mr. Baxter’s life has been restored, Think about all the other people whose lives can be improved and restored with an adequate healthcare system. It might also save the government lots of money by not having to pay disability, when those people could be returned to a more productive status.
28
I am a speech language pathologist who used to work with stroke patients. The gentleman in this story was indeed blessed to have the means to afford therapy. He also deserves credit for his incredible drive. Unfortunately, insurance and Medicare do indeed limit the amount of therapy available to patients. Recovery can be quite slow, making it difficult to show rapid enough progress to satisfy insurance plans. I was interested to read that part of the therapy forced Mr. Baxter to use his weak side. There is science behind this approach. Thankfully, there are now treatments for strokes that limit the damage to the brain if the patient receives immediate medical attention. I would encourage a follow up column that describes these.
33
at age 71 I had a stroke. On day 3 after my doctors discussed my therapy options and suggested an acute rehabilitation hospital, I agreed whole heartedly. The next day came and passed with no transfer to the rehab hospital. I was told the company providing my Medicare advantage insurance recommended I go to a nursing home. This was appealed and denied and I languished in the hospital for a total of 8 days until I was discharged to home with out patient therapy planned. The rehab hospital appealed the decision which was overturned by an independent reviewer and I was granted time in the rehab hospital This proved to be very beneficial because I was able to walk without aid when I left rehab hospital.
2
Mr. Baxter was very very lucky. His odds of having a SECOND stroke in the first 5 years after his first stroke was 15 times greater than the odds of a first stroke for the general population.
In addition, it appears that Mr. Baxter did not have other health issues. 75% of first strokes occur in people over 65. Often there are serious medical problems inhibiting recovery.
His persistence and dedication to recovery are remarkable. But he had several factors on his side, including high income.
Income and resources played a great role in Mr. Baxter's recovery.
16
@elained
It is wise not to generalize from this story to others as an example of what can be accomplished.
3
@elained-yes, as he said he was lucky and is grateful for the luck, love and other financial resources he had to
aid his recovery- everyone should have that, but they don't... nevertheless, his story is one of hope for others.... and I think it was beautiful generous of him to share it...
2
@Karen
having just had a a stroke 2 weeks ago I am pleased to hear it can get better, because it just feels so bad
I had a stroke in Oct., 2014. Physically I was 100% but it left me with aphasia. Through these years I have talked to three neurologists: the first told me that I couldn't speak so I needed to learn to listen; the second told me that I needed to learn to be happy; and the third told me that because I was over one year, I was done ... again, be happy. I had six months of therapy and after that I have done my rehabilitation by myself: reading newspapers (NYT's, etc.), brain puzzles, and physical exercises. I have read many books about brain/stroke difficulties ... very slowly and now normally fast. Yes, I still have aphasia but I can speak, write (I am a good editor with my own writing), and read. Sometimes you can rehabilitate yourself if you work really hard everyday by yourself. I am still planning to get it all!
53
@john baxter yes absolutely! I have done extensive studies myself professionally regarding brain injury, including stroke, and neuroplasticity. You are the example of the hope I have always tried to share with people I know who are recovering their lives. It is not so much about the finances or locale that helps others, but the love and hope from family and friends that will inspire a person to keep going and growing and rebuilding/recovering the brain pathways that will enable communication with others again. Thank you for sharing your story!!!
6
@john baxter
I suffered aphasia (in what I call "the right word department" of my brain) after a car accident head injury. I had no therapy at all (no insurance) and it took years (at least a decade or more) but I slowly regained all of my ability to find "the right word."
The brain has the amazing ability to form new neural pathways after injury. It is an accepted medical fact now; so even if you don't have access to professional therapy, yes, you can recover and "be happy!"
10
As a Rehabilitation Medicine specialist (a physiatrist) I’ve seen myriads of folks following stroke and learned that much of what I was taught in med school about brain injury was wrong. Stroke recovery does not end at 18 months post-stroke. Oh yes, insurance coverage for useful and necessary therapy might but Mother Nature’s efforts to heal do not. That frustration voiced, it must be said that to achieve max results takes time, work in the form of exercise, both to involved body parts, cognitive activity and aerobic exercise which turns on genomic healing processes. The results can be amazing as in this testimonial. Physicians need to both be better educated and better educators to see better stroke outcomes.
29
@Bruce E. Becker, MD Dear Dr. Becker, I had a fall and consequent concussion in August 2006. The standard statement is that the patient will get what's going to come back by 24 months out, and then nada.
Here we are, in July 2019, and my experience has been that pieces of my pre-concussion brain still come back into function every now and then. The major recovery was within 36 months, but several distinct mental skills have returned from after 36 months to...well...this evening, when I realized that a long-lost pattern of thinking had returned! :-)
3
I read a very interesting book called The Brain that Changes Itself by Doidge. He discusses some cutting-edge therapies based on brain plasticity that can help people regain abilities lost to strokes.
8
Great article. So important to get the truth out there that many scientific studies have been done in recent years to confirm that most often with aphasia that might come with a stroke the person does not lose intellect. Only the ability to speak or read fluently is lost. But the intellect remains the same.
2
aided by financial resources not available to most others
18
@J actually, aided by love and hope of friends and families.... usually available to most others if you find the right friends and families
2
@J Perhaps but also aided by incredible drive.
3
Rehabilitation like his (such as it is) costs many many millions of dollars. That he could afford to finance it for many years through a combination of insurance and personal resources while not working, then go through what must have been a very expensive divorce, then move to Newport Beach (easily as expensive as Greenwich, CT) suggests financial resources far beyond what the rest of us, the 99.9% of us, have.
The simple fact is such a stroke would leave me bereft within months. The only realistic rehabilitation therapy open to me then would be suicide.
22
The story here is not Mr. Baxter's recovery. It's the fact that so many like him will have neither the resources nor the support to recover, even if they have the will. All three are necessary.
35
I am an osteopathic physician who did a residency in rehabilitation medicine.
We were taught that after a year the window for real return of function for stroke patients has passed.
That is the prevailing attitude of many physicians.
But it is not mine.
I diagnose and treat using classical osteopathic methods. And with this approach I have been able to help restore function to many stroke patients well after a year.
One case.
A male hemiplegic who came to me in a wheelchair two years after having been discharged from the National Rehabilitation Hospital where I did my training.
He had lost most vision in the right eye, had no smell via the right nostril as well as other complaints.
Today he is walking without a cane, has a return of most of his original vision and can smell via both nostrils.
The only treatment has been applied anatomy to restore normal physiology ( function). This is what osteopathy is and why it has helped so many patients of all ages in my practice.
Every physician learns anatomy in the freshman year.
Then most promptly forget it except to pass boards and classes.
Anatomy/ physiology are the basis of medicine, our ABC's.
We ignore their application at our peril.
Sometimes the simple things are the most powerful when skillfully applied.
30
@simon sez
You would be much more convincing if instead of citing one case, you could cite an adequately-powered randomized, controlled trial in a peer-reviewed journal.
Without a RCT, you can't tell whether your patients actually are improving as a result of your treatment, or whether you've just convinced yourself that they're improving.
2
I had a TIA with a minor result physically. Two years later I had a stroke and physically came through fine. I definitely had a loss verbally. I still have to some amount. Four years later it is a regular battle to get the words found in my mind to say what I intend. Words that sound the same show up in my writing. I now read every word I have written to be accurate in meaning. Used to be glib. Quick at playing with word. That speed is not present now. Have gone through the garbled words and asked if English was a second language.
15
Thanks so much for sharing this! My Dad had a stoke at age 85 that left him with mostly speech deficits. He recovered for the most part in a few months with some therapy but he was never quite the same. Ie, he had lost some of his verbal and mental sharpness. Maybe more therapy might have helped?
1
@richard I'm no doctor but I would suppose it's much much easier to recover when you have a stroke at 55 than it is at 85.
7
Not only does a stroke damage different parts of the brain, but it also can make biochemical changes, even in parts of the brain not directly damaged. At 74, I had a hemorrhagic stroke which almost killed me and am incredibly blessed that I recovered almost totally. But I am not quite the same person that I was 3 years ago. Not necessarily a bad thing.
14
@richard Accept your father as he is. You don't mention if you ever asked him how he feels about his speech deficits or the fact that he was never the same. Leave your father alone. Enjoy him for who he is now. I sounds like you're having a problem adjusting, not him.
1
Great article! I read his book that came out last year Relentless and I have shared it with others because it gives an insight into many things we take for granite. It took a serious impact on Teds life to turn around as he says for the better.
I am so glad he has survived such a massive stroke and Gods plan now is for him to share it and bring awareness about strokes and aphasia! I love the tips he shares. Art therapy sounds great. I am sure at Michaels one could stock up on all the art supplies themselves and not have to pay for an art therapy session. I am sure I can find a golf ball and golf club from a friend or my husband. So the tips he shares can be done with someone on a budget.
I hope the book becomes a movie someday. We need more topics on health and stroke recovery stories. God Bless.
8
I applaud the author's success. And it's admirable he is now helping others with aphasia.
My friend had a stroke three years ago, due to a blood clot, at age 57. Her friends and family knew nothing about aphasia before this. We were shocked to discover that a huge number of people are dealing with aphasia every day. It's a hidden disability. And sadly, we found that health services available for the average person are miniscule. For the stroke survivor, suddenly in unknow territory, I suspect mental health therapy is desparatley needed on top of speech, physical, and occupational therapy.
My friend is experiencing some recovery, slowly. "Recovery" is a loaded word; becoming the same person as before the stroke is not likely. Three years post-stroke, she is just now beginning to take initiative for improving her language skills. Previously, she responded to her therapists, but with impatience; until recently, she rarely practiced language skills on her own.
Every stroke survivor has a story different from all others.
Many, many more columns on stroke, and other common and debilitating brain ailments such as Parkinson's disease, are needed!
20
Like at least one other commenter, I’m glad to see the NYTimes cover strokes, which are way too common and often so devastating. Even the experts don’t know all the factors which determine why some people recover better than others. I had a major stroke 2 years ago and recovered remarkably well without any unusual effort on my part. One neurology resident attributed my recovery to my being left handed. His theory was that in a lefty, brain functions aren’t so localized and this makes it easier for non-damaged parts of the brain to perform the functions of the damaged parts. I don’t know.
12
Relative youth: age matters a lot.
22
This is an inspiring story: it's also singular. To me, the biggest takeaway is that it is one more reason to be FLEXIBLE - willing both to struggle AND to accept our limitations, to live after a catastrophic personal setback.
The it is also:
-A lesson about how intensive medical and rehab services are integral to improvement post stroke ( and in many other disabling conditions).
- A reminder that good insurance, and wealth increase access to medical care and rehab.
- NOT a lesson for everyone. 14 years of recovery: How would that go for a more typical older stroke victim?
What about a person on their own without strong family supports? No one even gets attentive care in hospital settings without a dedicated advocate.
From the Institute of Aging: "Of the older adults ... living outside nursing homes or hospitals in 2010, nearly 1/3 (11.3 million) lived alone. Older women are twice as likely as older men to live alone (37% [vs] 19%,). In 2010,.. . only 42% of older women [lived with a spouse].
A person whose funds would have been sucked dry in the first year of care, is likely to be living courtesy of Medicaid in a nursing facility, not at home in Newport Beach, CA, undoubtedly a place of beauty fitted out with the best in universal design.
I'm 72 and luckily in good health. If I were hit with such a massive stroke at my age, with a similar prognosis, I think I would have rued being "saved." Not type A enough, I guess.
17
All your points are well taken and valid, but imo can frankly be seen as negative. The fact is, that this guys brain recovered over a long period of time and that should be encouraging news for any stroke patient. The brain can repair itself and whether you are paying for PT or motivated enough to keep trying on your own, one should not ever be discouraged. My partner had a second stroke in two years and this last time he was left side paralyzed , he is also 70 and not 40. I saw this article as a beacon of hope that stroke recovery does not just stop and it will happen as long as you keep pushing, the Drs told us that to our skepticism and this guy is proof that it’s true. Frankly, I find it comforting and inspiring to hear such stories. God knows we met some very inspiring people in our journey through rehab hospitals and PT Clinics as well. So maybe this guy had some things in his favor to make it easier overall, but his brain did the recovering not his money, access to health insurance or support system. This is a very positive article and should only be seen in that light, he even acknowledges is own privilege but that is not what allowed his brain to recover, his brain recovery is the miracle of the human body and everyone has access to such.
19
I appreciate your honesty and I’m a believer that your comments re the brain rather than financial resources are really true!
2
@ Cheryl
I completely understand & agree with your statements. I’m also an older, single female; adult children, but out of state. Resources low average. As a retired Nurse, I’m well aware of the most likely outcome if I were to have a stroke or similar event. It’s why I have a very specific advance directive in place; no long term care facility for me.
1
Since it is important to move on a plane, the flight crews could lead with exercises once an hour. A lot can be done in seat belts with chair exercises, moving arms around, pumping and rotating ankles, lifting knees towards chest, tightening butt muscles, looking from right to left, up and down, stretching shoulders etc.
Airports could put exercise bikes in waiting areas. Five or ten minutes on the stationary bike with your suitcase beside you will move more blood than half an hour walking pulling your suitcase. It would be easy to try a exercise bikes in the waiting areas and see if travelers used them.
54
$$$$$$. Goes a long way
22
This story taken strictly as the personal journey of one person’s recovery from a debilitating stroke is inspirational. It does take a great deal of fortitude to keep going in the face of one physical and/or mental disability, let alone multiple ones. He has my congratulations on his achievement.
However, to completely disregard the glaring fact that this person had, and presumably still has, immense financial privilege that allowed for his ten year journey of top tier medical care is irresponsible journalism. This article is written up as an example of what we could all reach for if we only try and try.
As if. Not in this country. Medical care is a luxury here. Not a right. Even with insurance or with being a veteran, decent (let alone excellent, top-of-the-line) medical care isn’t a guarantee. This man’s level of medical care is available only to the very, very wealthy. That point should have been made, several times, in this article.
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@Molly my stroke helped me out of a failed marriage. thank you stroke.
7
Congratulations to Mr. Baxter. He has used his resources and his privilege to maximize his results, and that's great. But other stroke survivors without his assets struggle to get any rehab, much less enough rehab, of the right kind, for long enough, to make a difference. Insurance covers minimal therapy, and cuts back on services after a month or two, when research demonstrates that prolonged intensive therapy makes a difference. But Medicare and private insurers don't care what the evidence shows. So most stroke survivors end up with submaximal gains, dependent on family or friends or expensive supportive living services. This needs to change.
41
Great article, thanks for sharing.
My husband had similar stroke at the age of 58. The neurologist in our small town didn't know too much, but somehow we found a wonderful speech therapist and they worked and worked until my husband could go back to work as a Pharmacist, albeit 3/4 time.
19
I think the lesson should be about never giving up because he never did, even though he probably wanted to. My older brother struggles with blood clots in his lungs and in his legs. He wants to give up everyday but we push him to do his best. Recovery is possible like the article says, but for you to recover you have to want and try to recover.
11
Strokes. So common, so under-reported vis-a-vis heart disease or cancer in the media. Thus, I'm glad to see the NYT covering strokes at all.
Responding to one comment, strokes are always "massive" in these stories because they ARE. You should've seen my husband's CAT scans and MRIs. Deeply frightening. But we got lucky - there was a genius interventional radiologist who went after the clot manually - they didn't know when the stroke occurred, so no TPI - and that made all the difference.
Is he 100 percent? No. Is he a vegetable? No. He went back to work almost a year afterwards, and he was 74. Are we grateful? Yes.
27
i also had a much milder stroke. In the aftermath came countless insights I would have had no access to prior, relating to how the apparently unitary physical self we are is in fact composed of parts. once you lose the integration of these parts with each other, I found, a deep appreciation of the extraordinary intricate and effortlessness of even tiny simple things followed. And now two years on, while there are losses that I accept are permanent, I genuinely feel the loss is worth the insight into the things I can do. But I did not suffer what he suffered, and my admiration for his journey is real and deep.
That said, the underlying privilege that makes his journey even possible - how many of us, after showing an interest in art through a therapeutic process leverage that into a seat on the board of a museum? - makes something of an indictment, however unintended, of this article. I also have immense privilege, but mine is to be Canadian, and have the benefit of unquestioned , immediate access to top flight medical care.
Discounting that difference makes this story perhaps just another example of the way America recreates a cruel and anti democratic myth of initiative and personal strength, through the examples provided by the rich and fortunate. in a country where inhabitants of different sides of the same city may have life expectancies as far apart as 20 years, who this story is meant for, and how it will be read by others is a symptom of the deeper, social illness.
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@dan donaldson
You know I think you're right. Maybe our country suffers from a deep social illness.
What else can explain the very great disparity that exists between the uber wealthy and the poorer of our citizens. And the very wealthy trying to keep it that way and being very successful at it.
Everyone that I know is scratching their head, asking themselves how did T do it.
Perhaps T is just the latest example that shows our societal decay.
How else to explain states refusing take medicaid money even though their population needs it.
How else to explain his coddling the prince of Saudi Arabia even though it has been proven that he was behind the plot to kill the Washington Post journalist. I was waiting today to see how the journalists would react to T's unforgivable behavior. Nothing. Not a word.
If you've thought you'd seen T at his worst, tomorrow he comes up with another new worse behavior and his followers accept everything he says and does. Which came first the chicken or the egg?
30
@dan donaldson
You know I think you're right. Maybe our country suffers from a deep social illness.
What else can explain the very great disparity that exists between the uber wealthy and the poorer of our citizens. And the very wealthy trying to keep it that way and being very successful at it.
Everyone that I know is scratching their head, asking th
emselves how did T do it.
Perhaps T is just the latest example that shows our societal decay.
How else to explain states refusing take medicaid money even though their population needs it.
How else to explain his coddling the prince of Saudi Arabia even though it has been proven that he was behind the plot to kill the Washington Post journalist. I was waiting today to see how the journalists would react to T's unforgivable behavior. Nothing. Not a word.
If you've thought you'd seen T at his worst, tomorrow he comes up with another new worse behavior and his followers accept everything he says and does. Which came first the chicken or the egg?
1
What an amazing read, I was smiling the entire time I read it. To read how Ted Baxter never gave up and worked extra hard to go back to his normal life prior to the stroke is truly inspiring. It teaches me that anything in life is possible if you just put your mind to it. It truly is inspiring that He never allowed the results of this striker deter him from getting better. Thank you for giving back to others and paying it forward! You’re an angel on Earth.
17
I agree it is inspiring. But some people have brain injuries that affect their ability to motivate and persist. This man was lucky that these skills remained intact. It is very difficult to “just put your mind to something” when “putting your mind to something” is the problem.
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It’s an exceptional story and I’m simply pinpointing how this mans unique story was truly inspiring for me personally. No need to criticize an optimistic comment and generalize it with individuals who have had a stroke. If you have nothing constructive to say please don’t say it.
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@Jennifer Glen
Thank you Jennifer. With regard to Erin's comment, I have found, in at least 100 if not many more examples, that clinicians - medical doctors, psychologists, nurses, therapists, etc - far too often make assumptions based on limited diagnostic tools (most of our tools, to be honest) that end up confining patients to restrictive treatments.
For example, brain scans may appear to reveal that "the" areas of the brain which "control" motivation ('putting your mind to something") have been damaged and therefore, a patient will be assessed as being unable to be self-motivated and persist without immense support.
It is a very sad fact that all too few clinicians are aware of first class research showing the astonishing plasticity of the brain, such that an area which normally is associated with such persistence may be damaged, and then another area - which may not be involved with motivation normally - may take over.
It may be that our limiting beliefs are more dangerous to us than the absurd cruelty of the US healthcare system and it's lack of availability to people with few financial resources.
6
Ms. Brody should interview some patients with stroke who are average Americans. I took care of patients with stroke who were middle or lower income in a prior position and their situations were quite the struggle.
I contrast it with my aunt's situation in Canada after she had a stroke. My aunt is not rich but average in income. The government there provided her with home health aides that not only did occupational/ physical therapy but also with help for meals, dressing, etc. There was a bus that took her to adult day care twice a day. She received this care for many years and now is about 85% recovered. My cousins did not have to worry as much about lack of care, bankruptcy, etc. and they did not have to fight for services in the way we have to in this country.
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I had a stroke on April 29th, and like Ted Baxter, I think of it as a blessing in disguise, not only because it was a fairly minor one, but more importantly, because it alerted me to change my unhealthy lifestyle before it became too late.
I knew I had all the risk factors, but I treated none of them. My late husband took excellent care of himself. He had perfect blood pressure, pulse, and cholesterol readings, but he died of cancer anyway at 57. After that, my attitude became “Why should I take care of my health since it didn’t help him?”
I no longer think that self-destructively. In general, I am happier because stupid, everyday things upset me less. As with any health crisis, It’s not a straight line up, and my recovery comes in waves, but I know I am more patient and empathetic, and I feel both emotionally and physically healthier
since my stroke.
43
I'm sorry but I don't think ant cataclysmic health event is blessing in disguise. I think it's a tragedy.
7
@Keevin I agree - my life would be much easier without my stroke, which was acute - not as above Patricia's "fairly minor". It left me in rehabs and recovery therapy for years. You said it well.
My mother had a stroke as an allergic reaction to dye used in an exam for something I don't recall. She was offered no rehab and did it all herself painstakingly doing NYT crosswords over days rather than minutes and knitting. Boy I have some strange sweater gifts from her that I wouldn't trade for anything in the world.
96
I had a hemorrhagic stroke at age 31 and also struggled with universal aphasia. I recovered,
but changed. Age and good health in the first place helped. My dedicated mother — a retired elementary school teacher — spent months working with me with flash cards and my old children’s books. Then I finally made my way to inexpensive community art classes. For four years I spent my free time taking painting and drawing classes. It felt as if my hardworking brain shifted away from the challenging verbal tasks into the visual. Over time, my career shifted toward design work — and a lifetime dedication to balance. I suspect my life has been richer and more fulfilling than it would have been as a hard-driving former Capitol Hill staffer. I look forward to reading Ted’s book and hope others will find creative approaches to recovery and acceptance in plot-shifting life changes.
69
My father had a massive stroke (why are strokes always "massive"?) in 1985 when he was 65, very seriously physically and mentally debilitated. So much has changed in stroke treatment in the ensuing years that I am sure he could have recovered much more than he did. The general feeling was, "well, there's not much we can do in these cases except for physical therapy to get some basic function back." I believe he could have regained some use of his left arm (he was left handed) and perhaps more brain function if we knew what we know now. The only problem may have been that the damage changed him so much that he became a very different person than he was before. As it was, his care so wore out my mother that I know it contributed to her early death (along with the effects of a lifetime of smoking). After that it was nursing homes and Medicaid for dad.
32
@Stevenz Sorry about your parents' hardships. Indeed, illness doesn't always change us for the better. But I have the same question as you regarding "massive" -heat attacks also tend to be accompanied by this adjective. I wonder every time if this is ever a medical term.
2
I think the lesson is that perseverance, a positive attitude, problem-solving, and activities like art therapy and sports are helpful. Yes, he had financial resources so chose options he could afford. I did not have a stroke but I did have major cognitive challenges and at one point had to teach myself to comprehend written words again. I too have persevered over many years with amazing results.
There are many low-cost options for art or sports (start coloring or drawing or check out your local "Y" or rec center) and the cross-crawl movement of simply walking is something I still return to when I need to help my brain re-program. I realize that some who have had strokes cannot walk, but if family and friends can move limbs in a crawling motion (that is free, requiring only time) and could have significant benefits. After recently losing my spouse, walking will again be very good for me.
39
@Suzanne
Thank you, Suzanne. I felt quite wary about suggesting that low cost options can be found, given the overwhelming critical attitudes expressed in the comments.
I do agree with basic view that it is shameful - beyond shameful - that the US doesn't have universal health care.
But for now, your comment is immensely helpful, reminding people that in fact, with very little external resources we have far, far more capacity for rehabilitation than conventional medicine (or conventional research in general) would have us believe.
The research showing astonishing potential is there - but so many medical professionals are still burdened with a 19th century mindset, that few people learn about our amazing potential - potential that has been scientifically validated.
Here's just one example. I was treating someone (using psychological methods such as mindfulness, among others) with severe pain associated with multiple sclerosis. In the course of this work, she mentioned that her hands were so stiff she had not been able to write for over 2 years.
I taught her an exercise for sensitizing the fingers I had learned as a pianist, and within 2 minutes, observing closely both the "texture" of her hands and her facial expression, I said, "Here, take this pen and start writing." She did, and started crying as she continued to write - crying for joy.
A neuropsychology professor later simply refused to believe this could happen. This is typical of mainstream scientists.
14
My family member had a stroke, but worked for the city. Insurance barely covered anything and left them with tremendous debt. They tried hard to regain their speech and motor function but could not afford the top of the line support the gentleman in the article had. Unfortunately my relative passed away from complications. If anyone is considering having a stroke it really helps to be rich first.
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@Danny It always helps to be rich--that's why the rich live longer than the rest of us. It's great to have determination and hope, but those aren't sufficient to get a damaged person back to health. Maybe the USA will have a proper system of medical care for all someday, when the self-absorbed conservatives are no longer in charge.
71
Vote early and often . We need Canadian health care!! The comments about Canada in this article so firm that!
33
Wow. When I read this article definitely makes me want to focus on a more balanced lifestyle or at least try to. Its easy to get so absorbed into ones career and then it can put a damper on your health. Ted had the tremendous mindset to get himself better. Glad your now able to share your journey with others.
18
My mother spent 9 years in a vegetative state after a hemorrhagic stroke before succumbing to another. My sister has now spent two years in the same condition in her 80s. Never the slightest improvement despite attempts at therapy.
20
That's an amazing and admirable recovery. But what happens in the United States when you don't have the money to buy the medical facilities and support you need? It's free at the point of need in the UK and I have reason to count my blessings for the National Health Service here.
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@Bill Hendry
And here in Canada there would be no charge for treatment
25
Good for Ted, I’m happy that he is doing well. Now, imagine what a wonderful world it would be, if everyone that needed AND wanted this level of care could actually get it. But we have more important things to spend Money on, like Tax Cuts for the Rich, more Military Misadventures and weekend golfing trips plus loyalty Rallies plus foreign jaunts.
What a Country.
226
Until the stroke associations acknowledge that everything in stroke is a failure, they will never try to get survivors to 100% recovery. Full recovery using tPA is only 12%, full recovery after stroke rehab is only 10%. Since the WHO now states that 1 in 4 will have a stroke your chances of ever getting to full recovery are nil. I'm 13 years out from my stroke and assuredly will never completely recover. I explain what needs to be done for stroke in my blog, Deans' Stroke Musings. But since I'm not medically trained, non existent stroke leadership will never listen to my ideas.
22
Who says money can't buy happiness?
62
I'd like to know more about the intensive aphasia program.
My mother has aphasia combined with dementia (Not Alzheimer's). After she started intensive physical therapy after she fell and broke her hip, I and her physical therapists noticed an improvement in her speech. I'd like to see more research on the connection.
28
@Valerie
Your point is very important.
PT is limited. Many patients who end up in long term care get no exercise ( appropriate to their abilities). Some can still walk on their own; others cannot.
It is bad for all the body systems.
But the brain might be the biggest loser of all. No exercise means reduced blood flow, the brain cannot operate at its optimum. We even know that people without any cognitive problems function better mentally when they exercise.
Along with failure to provide hearing aids, and dental care, the restriction of exercise routines as a regular intervention definitely contributes to making those those with MCI or dementia ( especially vascular) much worse that they would be with movement.
8
Money makes the world go round. It also allows for the intensive therapy that Ted was able to afford. It also allowed for the marvelous recovery Ted has had. How many of us have the money to afford that type of recovery?
133
@Mary R. Look at life expectancy differentials by class, and you'll get your answer. Only Rich Lives Matter.
13
A wonderful story of overcoming incredible hardship, its hard to convey that to those who have not had similar experiences.
As a physician who had a life changing series of life altering complications from procedures, I can attest to the challenges faced by those in similar circumstances. I truly applaud Mr. Baxter for all he has overcome and the giving life he has found!
However, as he admits, the level of financial securities/preparedness he had was a huge benefit. The costs are immense, and for the most part out of reach for those who are not super prepared with disability insurance (the good kind, not just workers comp etc...), a financial nest egg and empathetic employers. Medical related bankruptcy is a huge problem in the US. I was lucky—-I had pretty good personal and work related disability insurance and health care that helped keep my family afloat. Its a big problem in the US yet it is something most working families can do something about. But, one has to think about the unthinkable to get there.
If you are reading this article and the comments, it’s worth assessing your own life and how prepared you are if that unlikely event happens—because thinking about and preparing for the unthinkable could be the best thing that ever happened to you.
85
Many of my patients where I work have had strokes. Despite adequate physical therapy their rehabilitation remains fairly benign, if not meaningless. But how wonderful to be rich as well as motivated? If only that were the case for all.
88
@Susan What is "adequate physical therapy?" Since my stroke a year ago I have worked with 5 different physical therapists, each with a different training background. Only recently have I found PT with training specifically in neurology. He is the first who has tailored exercises to connect my affected side with my central nervous system. Medicare has paid for my treatment. But the treatment I think would really help me, the PONS device, is available only in Canada.
10
Sitting for more than two hours on a long flight predisposes to leg clots.....but most people seem to sit without moving, and the flight crew discourages walking around. I think there may be many cases of strokes, embolisms and heart attacks that occur within a few days of long flights. It appears tht no one is monitoring for this hazard of long flights.
105
@MN I always make it my business to get up and walk (on a train or plane) and get out of the vehicle (in a car) on any long trip. Sitting too long is just terrible.
21
Does anyone know why they don’t screen people for PFO hole in heart. I know of around three people who had this and had strokes at a very young ages. I wonder what it’s costs.
12
@Fisch -- Unfortunately, the health care industry in the US, and possibly other places, is reactive rather than seeking to minimise risk. Screening for various serious conditions is often not covered by insurance. For them, there is more money to be made in a pound of cure than an ounce of prevention.
21
@Fisch When you use the word "screen" in medicine, it means checking people who don't have any problems or symptoms currently. In order for a screening to be considered two major considerations are:
a) If found early, will early repair help prevent illness/ death/ complications down the line?
b) What are the risks of screening?
The answers are not easy to come by and is not necessarily positive. For example, if you took x-rays of people's backs, you would find a huge % with abnormalities yet have no and will never have symptoms. Making them get treated for that would results in more complications than help. Similarly for prostate cancer screening, we used to screen elderly men regularly until it was found that b) most cancers detected they would not even suffer effects from and b) surgery comes with high risks of death, infection, incontinence, erectile dysfunction. That's all besides the matter of cost.
I've also taken care of young people with strokes so have read the literature directly from that perspective. Extrapolating from a few cases to screening all young people does not make medical sense.
10
@ms
I disagree. Early screening is critical. I smoked for well over 20 years and have a family history of lung cancer. I managed to quit 20 years ago and am not in the category of "high risk" for lung cancer. Therefore no screening. I took it upon myself to have a lung scan and they found a nodule. Now it's a question of monitoring it. Lung cancer almost never "presents" until it's too late to treat. How can you discount screening in this context?
7
What a inspirational story. It helps to remind us that in the face of adversity we need to persevere and persist in finding out how to live.
18
Golly, if only I could afford art therapy and golf lessons for my mom the former bus driver who has had a stroke and now had vascular dementia!
Sadly, I had to leave grad school to take care of her 24/7 and my spouse was let go in October, so I guess we will have to just watch her decline and eat beans and rice together for the next few years.
But really, good for the rich guy.
178
@American
Yeah, really. Not to take anything away from him and all his hard work, but it's a whole other ballgame if you weren't a high-powered financier before your stroke. When my late boyfriend had a similarly massive stroke that left him paralyzed and unable to speak, his family got told bluntly, "which of you will be able to stop working and become his 24/7 caregiver/care coordinator?" He was poor and after his health insurance ran out, he would be on Medicaid. There is no way Medicaid pays for the kind of intensive rehab a patient like that needs to have any chance of regaining function. No one in his life was in a financial position to spend hours and hours every day caring for him, inspiring him, and working with him. All of us had to work full time to pay the bills, except possibly for his 76-year-old mother, who was in failing health herself. So he was doomed to a life in a motorized wheelchair, with a feeding tube, most likely never to speak again. Mentally he was completely still there. So when he learned of his prognosis, he chose to stop dialysis (his kidneys also failed after the stroke) and die rather than live like that. The possibility of a massive stroke while poor is one reason to have a living will explaining your wishes in advance.
170
@Nikki -- In these kinds of cases, Medicaid isn't about curing, it's about warehousing. But even that's too much 'care' for a certain political class.
53
@Stevenz
The completely disabled are also eligible for Social Security Disability and Medicare. It can take years of fighting with SSA (getting a lawyer at the outset may be costly but most accept cases on contingency) and while it won’t pay for the fancy stuff, it can be a big help.
35
Ted is a real hero!! CONGRATULATIONS. His courage and persistence inspires me.
13
Maybe he will.be a real.hero of he devotes some of his fortune to ensuring that ALL Americans have access to universal.health care so.ordinary folks have a chance to represented notgo.Into bankruptcy.
6