Venting

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Trying to Keep Up


RonA

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I have learned a lot since my wife had a stroke 20 months ago. I've learned to care for her, to modify things in our house, to find new gadgets and devices to help her be more comfortable and independent. Those are the good things I've learned. The not-so-good thing is that people who treat stroke patients are a very fragmented group whose members don't pay nearly enough attention to what others in the group are doing.

I have yet to find a neurologist, physiatrist or therapist who is really up to date on the many technological advancements being made in stroke recovery. There are high tech boots being developed in Japan and robotic braces coming out of MIT and a slew of other promising products but the people who care for stroke patients don't seem to know much about any of them. If you mention reading about something new or promising they are likely to respond with a two-part reply: "Oh really? I don't know anything about that." It's as if each therapist or physiatrist or what have you wears blinders and concentrates only on their respective pieces of the vast stroke puzzle. No one seems to be putting the puzzle together or even thinking about ways to do so.

For some time now I have been trying to learn more about hyperbaric oxygen treatment for stroke patients. There is a study out of a reputable Tel Aviv hospital that suggest such treatment could be very helpful in treating stroke patients years after they have a stroke, which his really exciting if true. But for the most part that study is ignored in this country and even experimenting with HBOT for treating stroke injurty is shunned. Since it is off label, hospitals won't touch it. Since insurance won't cover it, private practitioners usually avoid it. I can't even find a decent clinical trial in this country. What I have run across, however, are several so-called clinics that appear to be run by men and women with webbed feet. Yet it still seems possible that HBOT could help stroke victims recover. It's just that investigating it thoroughly and sensibly is a daunting if not impossible task. Why on earth would that be?

There's a guy named Paul Harch down at LSU who seems to be very deeply involved in HBOT and who appears to have excellent medical credentials. But you can't get him to respond to an email when you seek information beyond his web site and book. If you contact a neurologist at a major medical center to investigate HBOT you are waved off as if you have just proposed sacrificing an infant to a volcano. I've even tried to persuade one such practitioner to take a stab at conducting a clinical trial and got no response. That which is new is not quickly embraced in the conservative field of medicine, I'm afraid. So we continue to wander around in darkness.

When you run across a new high-tech device that you think may be useful you once again find information a bit hard to come by. The people who know the most about such devices are usually the same folks trying to sell them, which is always suspicious. I was once considering forking out $20K for a high-tech arm brace but never could get a credible price quote. The people I asked knew but they wouldn't say. They had no real reason but I firmly believe it had something to do with no letting insurance companies know what they would be willing to sell their products for without any price negotiation whatsoever. Call me cynical. As it turns out, the device wouldn't work for my wife so my pursuit ended, at least for now.

Of course, deciding what high-tech product is best for the patient is yet another frustrating process. Usually the therapist or doctor will run like a scalded dog when you bring up something like that, be it a functional electrical stimulation device or a robot that helps patients walk. If pressed, the professionals will typically admit that they don't really know much about such things. Really? If you are in the business of treating stroke patients at one level or another doesn't it stand to reason that you would be constantly scooping up all the information about stroke treatment that you can lay your hands on? To me, not staying current is a form of malpractice for any healthcare professional. But perhaps I'm being harsh.

I realize that many professionals who work with stroke patients feel protective of them. They don't want to encourage them to spend money on hopeless pursuits of miracle cures. Fine. I get it. But it seems to me that such protection too often goes over the top and ventures from protectionism to paternalism. Both get in the way of educating the information-seeking patient. An informed professional, meaning one who keeps up with anything and everything in his or her field, can help guide the gullible patients away from products and services that might exploit them. Failure to do so only makes it more likely that the con artists will prey on the patients. When a desperate patient can't find a credible resource to investigate a product or a therapy or a medicine, he or she is likely to give it a try anyway, sometimes with unfortunate results.

I remember on this very web site a few months ago there was a young man determined to try a truly bizarre "treatment" for his stroke. It involved injecting a medicine into his spine with his body upside down. With only a little investigation it was easy to find many red flags about that treatment and the doctor providing it. Still, the young man in question chose to ignore all of the red flags and forked out a handsome sum to try it anyway. Not surprisingly, it didn't work.

I'm a former journalist so I am pretty good at checking out information and sniffing out con artists. My problem tends to arise later, when my own efforts don't fully shoot down a possible treatment or product. That's when I really hunger for good guidance from a smart, reputable, well informed professional so that I can make a good and well informed decision. I rarely find such a source. Folks in the know are so afraid of guiding a patient down the wrong path that they decline to guide at all. Pursuing things that reach beyond the realm of conventional medical wisdom also flies in the face of the prevailing tendency to avoid giving hope to stroke victims for fear of stopping them for accepting their situation. And never mind that acceptance can at times be self-fulfilling and has rarely produced any bold, impressive advancements in any field.

So what is needed, I think, is some kind of comprehensive clearing house of information. I realize that various sources, including this very good web site, provide such a service in various amounts but I don't think anyone quite does what I have in mind. I'm talking about a source, most likely a web site connected to a foundation or association, that gathers up all of the latest products and services and uses skilled professionals to evaluate them for the lay public. In simple terms this clearinghouse would answer the following questions: what does it supposedly do? what does it actually do? who is it designed to help? what is the evidence that it works? who is providing it? what does it cost?

Of course, more information could be included but that would serve as a nice minimum. It would also be nice if the clearing house maintained a directory of people and institutions on the cutting edge of all things stroke, including rehabilitation. Remember, information is power, even for folks who have had a stroke.

The present means of gathering and evaluating information is akin to a Chinese fire drill. It is way too scattered and it leaves too many people with too little information. It also leaves folks who might have hope lacking any hope at all. Finally, it costs the gullible and the desperate a lot of money. We can do better. I'm sure of it.

OK, I am through venting. Have a nice day.

Ron

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I am, by no means, an investigative reporter, but, I wholeheartedly agree with you in the dearth of information available for the survivor/caregiver. Why do they all seem to have blinders on? Nobody ventures an opinion, a referral, a recommendation, nothing. All the sites for stroke I have been to are telling me how I can avoid getting a stroke. Too late! Now I need tools to help me get better.

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You may not be an investigative reporter but you sure have a way of saying things in plain, simple language, which is what good reporters do. I'm glad to learn that I'm not the only one who has run into this problem with blinders. Maybe if we do enough bitching the professionals will start looking around and thinking.

Thanks for the response. And good luck with your own recovery.

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Ron, in every country it is the same, what is available and what you have access to are two different things.  I once heard a health commentator talk about a new course available to caregivers, I rang the number and found out there were 30 places available, all in capital cities and some university students were doing it as a project.  So also we need to be aware of the quality and quantity of anything we are going to try.

 

Good luck with your research, anything you find useful post it on the forums as well as in your blog so that more people see it.

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Yes, I know. Information is in short supply in most any country. That's why we need some kind of clearinghouse to sift through it all and help us make sense of it. In the meantime I will indeed pass along anything I happen to uncover on my own.

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RonA,

 

Wish I could read what you wrote but my eyesight won't let me  when it's together like you wrote it, but that's OK, I understand my conditions in trying to read....

 

The big thing is you have learned to care for your wife, that's most important than anything else to me...

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I get more information from the Bulletin Boards at Bruce's Stroke Clinic than anywhere else. I have taken to asking for permission to check the Bulletin Board in the therapy Charting room (employees only.)  Caregivers always seem to have to be aware, on deck, on the search. And then the follow up phone calls to see if it is anything that will help and then the paperwork and calls to see if Bruce qualifies. Never ends.

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I've never heard of Bruce's Stroke Clinic. What is it? Where is it? And thanks for the feedback.

Ron

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LOL! Gaylord Hospital in Wallingford, CT

 

Bruce is my husband and the clinic is just one part of the entire facility.

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