Snakeoil or Revolutionary Treatment?
New treatments for stroke related conditions are coming out all the time. And with the deficits some folks live with, we desperately need them. Unfortunately, that also means there are a lot of scam therapies out there, too.
Or even if they are not scams, there are still treatments that just don't work. The research doesn't support them and for many people the represent a waste of time and money.
How do you tell the good from the bad? This is the framework I use.
First, who is recommending it? Is it your doctor, therapist, or other member of your care team? If so, there's likely some validity to it. They have a vested interest in recommending safe and effective treatments to you, and they want you to get well.
Or is it a random poster in an internet forum or a YouTube video? Those could still be good, but it pays to be skeptical. You need to go deeper into the scientific research or talk about it with your doctor or care team.
Second, will insurance pay for it? If your insurance will pay for it, then it's pretty likely the data shows the treatment is effective for many people because the insurance companies don't like throwing away money.
If insurance won't pay, well that doesn't tell you too much. They might be stingy or the data might show it doesn't work. or there might simply not be enough data yet.
Third, Is it FDA approved (or approved by the appropriate standards body in your country? If so, that a positive sign. If not, then it likely hasn't been shown to be safe or effective and you ought to be cautious.
So when we have that data, what else should we consider?
First, look at the therapy to see if it's safe. What does the research show? Often this is the first phase of research. The recent Stanford study on stem cells, for example was about determining if it was safe, not determining if it was effective. We talked about this research last year with Dr. Nirav Shah.
Second, is it effective?
Has the research demonstrated scientifically that it is effective? Does it actually work for more than one or two people and how often does it work? Earlier this year, I talked with Dr. Michael Bennett, one of the world's leading experts in Hyperbaric Medicine. This is a therapy that is known to be safe, and it's effective for lots of other conditions, but the research does not demonstrate that it is effective for stroke.
But if it's safe and only maybe effective, isn't it worth a shot?
Maybe. But that brings us to the question of Opportunity Costs.
Few of us have unlimited funds. And none of us have unlimited time. Spending time and money on one therapy means not spending time or money on something else.
The traditional therapies like PT, OT, and Speech Therapy have evidence showing they are effective. Skipping them in favor of an unproven therapy can actually delay your recovery.
So go into new and alternative therapies with a clear view of the risk if you opt to pursue them They may not work.
A Day in a Life with Spasticity
A few months ago, the American Heart Association reached out to me about participating in a video about tone and spasticity. I initially talked about tone and spasticity way back in Episode 3 -- Tone 101.
You can see the new video here or just play it below:
Share it with other folks in your life who might want to learn about spasticity.
Language
A member of the Strokecast community sent me a private message on Twitter politely taking me to task for something I said last week.
When I talked about "The Diving Bell and the Butterfly" I initially referred to Jean Dominique Bauby as a victim. I ought to have referred to him as a survivor.
Language matters as we rewire our brains. If you have had a stroke, and you're reading this today, you are a survivor. You are not a victim. Victims are folks who did not survive their stroke.
Now Bauby ultimately passed away due to complications from his stroke nearly 2 years later. In that time, he learned to communicate despite his locked in syndrome and even wrote a book by blinking his eye. He seems to have lived well beyond the victim stage.
Links
| Spasticity Video | |
| Episode 048 — Hyperbaric Oxygen Therapy with Dr. Michael Bennett | |
| Stem Cells on Strokecast | |
| Thought on The Diving Bell and the Butterfly | |
| Tone 101 | |
| Strokecast Facebook Group | |
| American Heart Association |
Where do we go from here?
- What alternative therapies have you tried? Did they work? Let us know in the new Strokecast Facebook group or in the comments below.
- Check out the spasticity video from the American Heart Association.
- Help a friend, colleague, or relative subscribe to the Strokecast for free in their favorite podcast app.
- Don't get best...get better.
Strokecast is the stroke podcast where a Gen X stroke survivor explores rehab, recovery, the frontiers of neuroscience and one-handed banana peeling by helping stroke survivors, caregivers, medical providers and stroke industry affiliates connect and share their stories.
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