A long sad day

Yesterday I drove my parents to the memorial service for a neighbor from my childhood. It was a 330 mile round trip. By the time I got home it was nearly 9pm and 12 hours from when I left the house. I don't travel so well these days so I made a point of getting a lot of sleep last night.

Susan died last fall from breast cancer, six weeks after her diagnosis. She had ignored pain in her ribs last spring because she thought she had strained something. She was a farmer and very active. Also her tumor was so far back and so close to  her ribs, it may not have shown up on a mammogram. It wasn't until she started feeling many more symptoms did she end up in the emergency room and got some very bad news.

Her mother was also diagnosed with early stage breast cancer in early 2014. So in speaking with her two remaining sisters, I made a point of telling them both they should consider themselves high risk for breast cancer. They agreed and said they had already spoken to their doctors about it.

It was a nice memorial service and internment of her ashes followed by a family gathering at their house on the ocean. I got to catch up with both her sisters, mother, and another friend from 4-H back in the 1960s.

I also met a woman who has the same rheumatologist as me. Her rheumatoid was more advanced than mine and she has had six joints replaced - both ankles, knee, and hips. I can't remember them all. She has refused to go on to a biologic and has been on methotrexate for 14 years. She was in a wheelchair because of her recent surgeries. I never want to be in a wheel chair. Another sad reminder of the implications of my ailments.

Between a memorial service, a long drive, and seeing the implications of rheumatoid. It had an emotional as well as a physical toll. I need a day off today but have too much to do.

Who is with me on this?

I was totally disgusted but also happy when I read this article about this moron oncologist, Farid Fata, who told over 500 patients they had cancer and treated them unnecessarily. Or even if they had cancer, they continued to receive chemo long after they were in remission. The result? Hundreds of people with lasting health issues and even some deaths. Then I found this article with more background.

He also over billed Medicare and insurance companies for millions of dollars as patients received over 9,000 injections or infusions. Some received unnecessary chemo for over five years.

The only thing more despicable than people who claim they have cancer and don't to raise money for themselves, are doctors who mistreat patients like this.
I just want to get in line with all these other patients and smack him in the face for his lack of morals and crimes.Who is with me on this?

Research hope and hopes dashed

I do follow the latest breast cancer, thyroid cancer, rheumatoid arthritis and fibromyalgia medical research. Some inner child is waiting for the cure to all of these ailments. I have learned a great deal about these ailments through reading the advances and get hope that some day a cure will be there. I also welcome the access to medical and other research across the board.

When I was first diagnosed with thyroid cancer in 1981, if I wanted to find information I had to go to a university's research library and read medical text books. It was confusing to say the least. In those days research was left to scientists and published in technical journals that were dense and textbooks for those learning the science or medicine that were no easy read.

Times have changed and I can find research every where. I can browse scientific journals online, set up Google alerts to send me the latest news, review the disease information on association websites, and have access to advances as soon as they are announced. However they all seem to be followed with the disclaimers 'more research is needed' and 'FDA approval is 5-7 years away'. Which can be frustrating, to say the least.

Every so often, I read some research that makes me wonder if I am over thinking, and perhaps the rest of us are too. I read this article on the impact of stress hormones on breast cancer recurrence or progression due to treatment resistance. It starts out by saying progesterone may stimulate that growth of cells that make cancer resistant to estrogen based treatments. Then it goes on to talk about the role of CK5 and goes on from there...

I admit it, I got lost. My breast cancer was ER-/PR- so do I have to worry about this at all? Well once I read it three times, I figured it out and could follow along.

But it made me wonder (which can be a bad thing), should I try to NOT follow all this research? Am I over thinking the hope that there is a cure out there? Should I leave this research to the scientists and not get myself bogged down in the details? I mean I do get the sense of hope from all the research that some day that cure will show up.

But is it worth letting myself get excited about the potential in the research and then get let down by the fact that the ending is 'more research is needed' and 'FDA approval is 5-10 years away'. Am I contributing to my own emotional medical roller coaster by trying to follow the advances and ensuing waiting?

A big part of any medical ailment is the emotional roller coaster that becomes part of your life after diagnosis. Learning how to cope with the roller coaster can be very difficult. And am I aggravating my own stress levels by accessing all this research? I will have to do some more thinking on this.

Am I an expert at anything?

I can no longer work full time. I struggle to work 15 hours/week. But I don't have enough money. Cash is tight in our house. I mean I have savings in the bank but they are in nice safe IRAs so they will stay there and grow until I retire. Anyway, I am trying to come up with more ways to make money.

My first thought is I will promote my knitting and crocheting and be proactive and sell more. The more I sell, the more I can knit. This keeps me busy and out of trouble on days when I am not up to going to work. So I have added a new page to my blog which I will fill with more information and keep my Facebook page updated with pictures of my latest creations. I can take credit cards or checks (if I know you) and will ship in the US.

My second thought is perhaps I can sell my services as a cancer consultant and help people navigate the medical maze of a cancer diagnosis. So I am asking, for feedback here:

• Would you want a cancer consultant to help you with the medical maze and cancer roller coaster on where to find support and help locally to you?
• Would you pay for this? Either on the phone or in email? 
• What kinds of questions do you/did you have?

I have no medical experience so I would not provide any medical guidance. I am not a social worker so I am not providing emotional support. But I do think I can help people find local emotional resources and additional information on their cancer.

My background is two cancer diagnoses so I have walked the walk so I think I can talk the talk.

What do you think? Am I on to something here?

Here Come the Vendors

I do a lot of talks about stroke recovery. About 100 per year. I learn so much from the therapists I talk to. Many of them are committed, caring, bright and motivated. I like the fact that I'm doing my talk to good people.

But there is one segment of therapists that can be tough to love. 

Attending my seminars have been lots people from a variety of companies. These companies usually represent products. Sometimes they represent services, clinical trials, organizations, etc. But usually it’s products. And for me, these people can be very dangerous. They either want to know what I'm saying about their product or want me to promote their product. Those who want to know what I'm saying about their product never voluntarily tell me where they work. Those that want to promote their product are just the opposite. At some point in the seminar they'll approach me and talk up their product. And it's always uncomfortable. 

Many of the products have little or no scientific evidence behind them. Doing the research to provide evidence for a product is expensive and laborious. It's quicker, cheaper and less fraught with danger to put your product to market, and promote it. And I become a part of their promotion. So when I'm approached, it usually feels like hucksterism. It feels like I'm being sold on a product so that my seminar might become a platform for promotion.

People will hand me their card, and talk about the product. That card will become a reminder to look at product up. So how do I look it up? I try to strip away the product name in order to get to the core of the product, and then research core. For example, let's say somebody is selling Stroke-A-Way. If I look up Stroke-A-Way all I'll find is what Stroke-A-Way wants me to find. So instead, I look up the "active ingredient" (concept, or exercise, or whatever). I try to see if the active ingredient is scientifically based.

But what if it doesn't work? A lot of times I can go straight to clinical research sites during the seminar and look the "active ingredient" up. I can also send out a quick e-mail to experts in the field (I've been in research for a long time; lots of contacts) and ask their opinion.

So: What if the product sucks?

If the product has no evidence, I don't advocate it. And if you're a vendor, and I say your product has no evidence, you'll be pissed. But you shouldn't be. You're at the course, you read the course description, and you know I'm in research. So... I'm going to do the research.

I wish these folks would read their diploma. On there some place is the word "science." It'll be an Associate of Science, a Bachelor of Science, a Masters of Science, or Doctorate of Science. When you got your license you dedicated yourself to providing treatment options based in... science.

So bringing it up in the seminar is not just dangerous for me, it's dangerous for the vendor. They try to sell me on a product, and make me aware of the product. Then I do the research. What if there is no evidence it work? The next time somebody asks me about the product I'll say there's no evidence behind it. I have to. It's my job. It probably would have been better had they not talk to me about it at all.

You know what the most widely read entry in this entire blog is? The entry on neuroaid. I only became aware of the product because they copped the name of this blog; The Stroke Recovery Blog. The theft got my attention, and made me do the research to find out that it...

• had a very low level of evidence behind it
• was available in a less expensive form
• used researchers who had a clear conflict of interest to promote it.

So if you get my attention, be prepared for the inevitable question: Is it evidence-based? This is my job. And I talked to  a lot of stroke survivors who want it to be the job of every clinician. Figure out what works, and then do it. And the stuff the doesn't work. Don't do it.

BTW: Frankly, I don't necessarily advocate the products advertised on this blog. However, I will not accept advertisement for products A) that clearly don't work or B) competing products exists which better provide the "active ingredient."

 

By: "stroke recovery blog" "stroke blog"

Gotcha. Can't win, don't try.

Bill a stroke survivor has trouble putting on headphones. 

He is able to get the headphones on using just his "good" side. Here's how he does it: First an earpiece on the "good" side and then use the same hand to move the other over to his "bad" side ear. 

Now let's say instead of using only the "good side" he uses both sides. His "good side" hand picks up the headphones, and then his "bad side" hand grasps the other side of the headphones and he puts them on. But in order to get the "bad side" involved he has to do a bunch of weird movements. He hikes up his shoulder, pulls his arm away from his body, and uses an awkward grasp to put the headphone on his ear.

Which do you think would be better? Which would be better in the short run? Which would be better in the long run?

In the short run it may be better to do it with just the "good" arm. It might be quicker, and take less effort. 

But in the long run what would be the effect? First of all he'll never learn how to use both arms for that skill. Also, since he's only using the "good" side for that movement, all the other tasks that use similar movements would not be practiced. And a lot of things use that same movement (Brushing teeth and hair, shaving, feeding, etc.) So he'd have less practice specific to putting on headphones, and then less carryover of that task to other tasks.

But here's the funny part: There are a lot of therapists who believe that he should do it one-handed. The thinking is this: The movement needed to complete the task of both arms is "bad" movement. 

And, so the thinking goes, the more "bad" movement that you use, the more that "bad" movement will be "ingrained". Like a bad habit.

This idea, that "bad" movement should not be encouraged always struck me strange on the face of it. This is the thinking: "The more you move the worse you'll get." 

But everything we know about the brain suggests exactly the opposite. The more you practice something the better you get.

There is a weird assumption that is made: You will never try to move better, you will only use the "bad" movement forevermore. The idea is, survivors don't know what good movement is. Because survivors don't know what good movement is, you need a therapist there to correct you. Which... I don't know about you... sounds like it'll cost you a lot of money.

But let's say they're right. Let's say that if you do the task with both arms you would never do it "correctly." Now you have a decision to make. Do you do it "incorrectly" for the rest of your life, or do you not try to use the "bad" arm?

It was me, I would make the decision to use the "bad" arm. Why? Well first of all I stand a much better chance of learning to move the "bad" side better if I use it in every day tasks... every day. Second, movements from one task can feed forward to other tasks that used similar movements. So I might retrain not just for one task, but for a whole bunch of tasks. Third, I don't let the whole portion of my brain "lie fallow" and not do anything. The brain hates not doing anything. The brain goes through what's called "a pruning of the dendritic arbor." It's a fancy way of saying "use it or lose it." If a portion of the brain is not used, the neurons in that part of the brain start to shrink -- or "prune."

But there's another important reason to use any movement you have. Maybe, at the "end of the day" the task remains awkward and uncoordinated. So what? How many people play golf, enjoy it, but don't play perfectly (all of us)? How many people ski, and enjoy it, and don't have perfect form? What about music, or painting, or writing...

Bart: You make me sick, Homer. You're the one that told me I could do anything if I just put my mind to it.
Homer: Well now that you're a little bit older I can tell you that's a crock. No matter how good you are at something, there's always about a million people better than you.
Bart: Gotcha. Can't win, don't try.

 

 This is my suggestion: Continue trying to do everything. And every time you do it try to make it a little bit better.  

Everybody wants to be an expert before they start. But to become an expert involves a lot of hard work. May as well begin now...

 By: "stroke recovery blog" "stroke blog"