Falls. Bad.

Here is your challenge: 

In the comments section, write everything that this survivor could do better in order to get up the stairs more safely. 

We all know that falls are bad. 

Falls can kill you. For survivors, falls are especially bad. Stroke affects balance, coordination, strength, and any number of other things that can lead to an increased risk of falls. On top of that, survivors tend to fall towards their affected side. In the affected side tends to be more osteoporotic. So have at it. This is good place to start as anywhere. What is this gentleman doing wrong? How do you do differently? What can you suggest?

Young Survivors: You may look great AND struggle.

A couple of bits of bad news for younger stroke survivors. First, a look at this video (on the right side of the site).

My interpretation: Young people who have insomnia are at a much higher risk of stroke. And by much higher I mean more than 8 times the risk. 

That's valuable information. But. There's a not-so-subtle intimation in this video that a lot of young stroke survivors complain about. Namely, that young people are out doing drugs (and other bad things) which keep them awake. 

The second bit of bad news

There's a new article out with a not-so-subtle name "Poor Long-Term Functional Outcome After Stroke Among Adults Aged 18 to 50 Years." Its bottom lines may come as some surprise to clinicians: many young survivors stroke survivors struggle with everyday tasks. 

After 10 years, 1 in 8 patients (12.9%) was not able to function independently. 

When interviewed the author's seem to suggest that, young survivors often don't show severe outward signs of problems related to stroke. For instance, they would struggle much less with walking than older survivor. But that does not mean that these everyday tasks are not problems. One author Frank-Erik de Leeuw, Ph.D., put it this way "Even if patients seem relatively well recovered with respect to motor function, there may still be immense 'invisible' damage that leads to loss of independence." 

I've heard this before from young survivors. People will come up to then say "You look great!" And they think to themselves, "I don't feel great." 

 One interesting note: Almost all the popular press has reported that this article suggests that "one-third" of young stroke survivors are having problems. I've read the article. It's one in eight. I'm not great at math. I'm pretty sure that's not one third.

Institute of Neurological Recovery. B-level scam.

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Anyone looking online for a magic bullet to help reverse stroke will end up with the same group of scams. There's the neuroaid scam. The wheatgrass scam. The Neuro-IFRAH scam.

There's two kinds of "stroke recovery" scams:

A-level scams: I sell you a "treatment." Does it work? Who cares!? I'm Selling! A-level scams tend to not last very long. If it doesn't work and it's harmless, the public will soon lose interest. And if the "treatment" hurts people the scammer will be sued into oblivion.

B-level scams: I sell you a "treatment." I really really really really believe it works. But I have no legit whatchamacallit... science... science behind the "treatment." How do I prove it works? A video! And a lot of stories from a lot of people that really like it a lot! 

What's so fun about all the B-level scams is that they're so easy to investigate. Really, this inter-web thing is great!

(I Think B-level scammers think we don't have access to the interweb!)

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Institute of Neurological Recovery 

Up until now my favorite scam has been neuroaid. And not just because my blog entry on neuroaid is the most read blog entry in SAS-blog evah! No, neuroaid was my fav because their conflict of interest was so obvious (the people on their scientific advisory board were also doing the research).

But my new fav is the Institute of Neurological Recovery. Although I feel a bit lame here because so many before me have pointed this scam out. Here as well. Hilarious radio commercial here.

Basically the scam is, you come in-- even years past your stroke-- they give you a shot (1st shot ~ $6,800- info from a recent patient) and you're better (video here) (another here). And they have research. Check out their "research" page. See the first 3 links? They all point to articles whose lead author is one Dr. Tobinick.

Dr. Tobinick owns the Institute of Neurological Recovery. Done!

Where's the challenge in that? They're not even trying! They even suck at obfuscation! Does the injection work? I don't know! But neither do they!

BTW, their "big" study involved looking at charts of patients and, based on no standardized tests said, "Yeah, all these people got better."

In some ways, B-level scams are worse. B-level scammers are often clinicians, and clinicians should treat using things that have scientific evidence specific to that treatment. Occasionally there are treatments that are missed by science, but shortly there reaches this critical mass of interest in the treatment. Once that critical mass is met, researchers get very interested, and they investigate. So, a good indication that a scam is a scam is that only the folks involved in the scam have investigated. So the scam is never investigated with anything close to science because, they're scammers, not scientists.

B-level scammers posture as scientists. But they're not scientist. The first thing a scientist would do when they say "my thing works" is to recuse themselves from the testing. It's called blinding. It's science 101. You want to make sure whoever is doing the testing is unaware which group (control/expiremental/different dosages, etc etc) the participants are in. Otherwise there's a clear conflict of interest. Otherwise, they'll say "My thing works great! I just tested my thing! And my thing works great!"

P.S. The Institute of Neurological Recovery has tried this before, with Alzheimers. Here is an article on it. My fav line? "Edward Tobinick ... has been active in laser hair removal prior to developing an interest in the use of etanercept for CNS indications. The hair removal clinic at which Tobinick is medical director, the Institute of Laser Medicine, is in the same building as the Institute for Neurological Research..."

EXTRY! PT HELPS SURVIVORS RECOVER!

So here is a bit of good news: PT helps survivors recover. Which you woulda thought had already been proven, but here's some funny: Very little has been proven with rehab vis-à-vis stroke. And then there is the little problem of a pretty long tradition of clinicians in rehab deeply believing in therapies that, once examined in the light of well run research, looked very meh. And speaking of such...

This article reviewing the effectiveness of PT on stroke recovery is a gem (and not just because it references more than 10 articles on which I'm a co-author!). It doesn't just comment broadly on PT post-stroke, it nuances it. Some things work, some things don't. Guess what goes in the "doesn't work bin?" Guess. Here's a hint, this blog has said this for a long time... Like here. And here. Thats right...

NDT!

As the authors put it:

NDT has an unfavorable effect on length of stay, motor function (synergy), muscle strength of the arm, walking speed, spatiotemporal gait pattern functions like stride length, muscle tone, range of motion, balance, walking ability, arm-hand activities, and basic ADL. Insufficient evidence was found for NDT benefiting muscle strength of the leg, grip strength, muscle tone, brain activity, walking ability. 

But. The overall message of this article bodes well for PT and for survivors. Namely: There is strong evidence for PT interventions... in all phases poststroke.

An Open Letter to "Payers" Regarding Stroke recovery: You're Doing it Wrong

Dear Insurance Providers, 

I'm sure you want to help stroke survivors. A survivor that is home in the pursuit of happiness is healthier and cheaper. 

But there's a problem... The systems that insurance companies and Medicare ("payers") have developed is a hodgepodge based on a patchwork of incorrect assumptions and old science.

The following are some recommendations to better align insurance regulations with the aspirations of survivors.

1. Make immediate screening for TPA mandatory, even in the most rural hospitals.

2. Where a survivor goes for therapy matters. Unfortunately, the decision determining where the lion's share of recovery will take place is made within the first few days post-stroke— way too soon. Given the emerging healing in the brain acutely there is simply no way for any clinician to predict where that survivor is going to be, functionally, in a week, let alone a month – or several months out. 

There are some who believe that future movement can be predicted within the first week post stroke. However, those predictions are accurate only because they force a self-fulfilling prophecy. Based on the algorithmic prognosis, survivors are put in less than optimal rehabilitation settings. Thus, they do not reach the highest level of recovery  providing justification for the original in-hospital prediction.

Instead of forcing therapists to make this decision in the first few days, wait until day 14. By then the resolution of the penumbra will have revealed true future potential-- at least in ischemic strokes. Hemorrhagic strokes take even longer to predict.

3.  Clinicians are forced to discharge survivors once they have plateaued. However, given the massive potential brain plasticity, it is now known that plateau is a slowing, not an ending, of recovery. Given the potential for recovery into the chronic phase of stroke, complete disengagement from therapy is a mistake. I would strongly suggest maintenance visits with therapist, introduction to well-trained stroke specific exercises at local gyms and workout facilities, as well as distance (i.e. phone calls) with therapist.

Sincerely,

Peter G. Levine

Gifts for Stroke Survivors: A list compiled with the help of the stellar Young Stroke Survivors Facebook group!

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The most important gift you can give a survivor is your time.  Often months and years later, the thing survivors remember

most is the company they received. A phone call, a visit, a text.... seems so simple but not to the stroke survivor whose mobility is limited. Social interactions will also help the survivor recover.

For survivors with children, organizing play dates for their kids can be a big help!

Gift that survivors often cherish include

• The gift of Food and Drink!
• Chocolates or any other delicious food. However, be aware that stroke can often affect the ability to swallow so yummy food will be a tease!
• Survivors often worry about their family eating well. Friends can organize and help by over dinner for my husband/ wife and kids every night.   
• Clothes
  
  • New comfy pajamas
  • Comfortable snugly sweat pants (elastic waist!)
  • Shoelaces that you don't have to tie like the Yankz! Sure Lace System
  • Slippers
    
  • baseball cap to wear (to cover unwashed hair)
  • sweats with the person's favorite team logo
  • Comfy therapy clothes
  The gift of help
  Survivors will certainly appreciate the little services you can provide. These include...
  
  • A manicure/pedicure (A trip to the hair salon for a cut, color and pedi is often a favorite post-stroke gift. Survivors often feel so much better after a trip to the salon)
  • Massage of the affected with a hand/body cream
  • Hair styling
  • Clean clothes
   Useful gifts
  • A journal for all the millions of thoughts that buzz around the survivor's head... great stress management
  • Stuffed animals, especially ones that remind the survivor of their own pets
  • A "grabber" to pull tray over, pick up the phone, or pull the tv over. Survivors are sometime left alone for extended periods.
  • Video games
  • Dry shampoo and leave in conditioner
  • a new toothbrush
  • Electric shaver for face or legs. Survivors are often afraid to use a razor
  • Flowers
  • A fluffy comforter
  • Books and for survivors with trouble reading, books on tape. Or, read to the survivor!
  • Photos of loved ones. A photo album with lots of pictures, where they were taken etc. (Survivors often forgot a lot!) Positive sayings in there as well as written prayers and messages from other friends
  • An attractive medical ID bracelet that fits with the person's personality (jewelry-style, paracord, beaded, Velcro (like Road ID).
  Music
  Music gets its own category because music helps recovery, especially during the acute phase (~the first 7 days after stroke)

Flaccid or spastic; what strategy works best?

Here's a recently email question I got....

Hi there,

I recently read your article about spasticity located here. 

The article seems to focus on therapies and treatments for patients who still have some motor control over muscles -- i.e. the brain is still in the loop.  Would the same treatments apply to a patient with little or no muscle control over muscles. i.e. muscles remain mostly flaccid post stroke.  Or is there little in the way of physical therapy that can be applied in this situation?

Specific patient is currently being treated with ativan and tizanidine, with the resulting effect that their ability to remain active is significantly deteriorated due to drowsiness.

Thanks,
(Name withheld)

Muscles hate to be overstretched, so if the brain is not online (as is often true after stroke) the muscles rely on the spinal cord to take over the job of protecting the muscles from being overstretched. But the spinal cord is a dumb brain. It can only tell muscles to tighten. The bottom line is: once the spinal cord takes over you end up with tight spastic muscles.

There is emerging research that suggests that if you can reestablish brain control over spastic muscles, the spinal cord will get it out of the way, and spasticity will decline.

So, as you can see the question, above, is a bit confusing because the writer asks, "Will the same treatments apply… in muscles that remained mostly flaccid post stroke?"

When the muscle is flaccid, there is no brain control over the muscle. If that's the case early in recovery (the first few weeks) you may find that the survivor becomes spastic or regains voluntary movement through the arc of recovery. But if the survivor is flaccid for more than a few weeks, the only thing that may have potential is electrical stimulation.  

(Note: because tizanidine -trade name Zanaflex- in particular is used specifically for spasticity, the person you are talking about is spastic. In that case they would have voluntary control into flexion - i.e. if you passively stretch the fingers to "open" the hand, they can squeeze your hand. If this is true, then I'd follow this strategy. It is a common misconception that everyone who is spastic has no control over their muscles. If they can squeeze, have them squeeze over and over and over and over... Tough to do when "their ability to remain active is significantly deteriorated due to drowsiness.")

If you want to see all this blog's entries on spasticity click here.

Recovery is done in three phases.

Recovery from stroke is done in three phases.

ACUTE    SUBACUTE    CHRONIC

1. The acute phase (~day 1 to day 7 [note all time periods are highly variable]). This is usually done in the hospital. In terms of recovery your main responsibility is to keep yourself healthy. Therapists will typically focus on helping you do what you can do. This is a time for convalescence.

2. The subacute phase (~day 7 to 3 months). This is usually done with some help from therapists. You will experience the most recovery during this phase. This is the time that rehabilitation should "put the pedal to the metal." This is where the hard work begins. During the subacute phase the brain is "primed" to recover. Make the most of this phase because it is a window of opportunity to reach the highest level of recovery.Squander it and squander the highest level of potential recovery.

3. The chronic phase (~3 months to the end of life). Typically the survivor has very little contact with rehabilitation professionals during the chronic phase. This is the time to implement a "do-it-yourself" plan for recovery. Recovery comes at fits and starts and is much more difficult than during the subacute phase. Still, important gains can be made during this phase. Up to very recently it was thought that no recovery could be made during the chronic phase. We now know, however, because of the brain's amazing ability to rewire itself, essential progress can be made during the chronic phase.

A blog entry about football-induced brain injury.

There is a problem when it comes to the issue of football and brain injury....

The people that know about football know nothing about the brain, and the people who know about the brain know nothing about football.

I know a little bit about both. Here's my 2¢:

I played football all through high school from freshman to senior. During my sophomore year, I never left the field. Kickoff, kickoff return, punt, punt return, every play on offense, every play on defense. I played pretty much every position on the field from nose tackle to linebacker and defensive back to quarterback to receiver.

Are you interested in having your kids play football? Are you wondering if the years you played may have left a residual affect on your brain? Here are a few things that you should know:
 

Other sports have head injuries. A lot of the popular press points this out. They say "Well, you hit your head in soccer when you head the ball." "When you play hockey you can get checked, that can cause a head injury." Of course they're both true. You could potentially have a head injury in almost any sport. Absolutely. No question. You could hit your head a few times a game.

What most folks don't realize is that in football you hit your head on almost every play. You are either blocking someone, trying to run over someone or falling. When you fall in football it is not a controlled fall. There's a variety of forces -usually other peoples bodies-- that impact the trajectory of your fall. All control is gone. Also, a lot of the time your hands are full, usually with somebody else's jersey.

As you fall your head hits the ground. It may hit many other things on the way to the ground, but it will almost always hit at the ground. When your head hits the ground the skull stops, but the brain keeps going. In fact, during any hit to the head in football, the brain keeps going...

And because the brain keeps going players cannot be protected by any kind of helmet. This is because, once again, the head will stop, the skull will stop, but because the brain is in fluid (cerebrospinal fluid) the brain will keep going. And you might think, who cares? So it keeps going but the skull is really smooth and so it hits a smooth area and it kind of sloshes around a little bit. So what? The impact wouldn't be significant enough to damage the brain. This is where a pretty intimate knowledge about the anatomy of the skull is important. People think of the skull they think of a really smooth surface. In fact, only the top half of the skull is smooth.

The bottom half is so convoluted and has pieces that are so sharp, that if you pressed your hand into it with a few pounds of force, you would  open the skin. So as the brain continues to move forward it is scraped against these many sharp edges that stick up into the bottom of the brain. And because there is a head hit in every play (okay not every play, you may be a decoy and not have to hit anybody. But for most positions almost play the head will get hit. I played QB for a year. I took the worst hits that year) the brain will be scraping every time. There is no good data on what this does to the brain. Everybody is focused on concussions, but because this ("scraping)" is done over and over and over to the brain, it may actually be more damaging in the long term.

So how many hits do high school player take to the head?

A high school football player may take anywhere from 200 to 1,800 hits to the head during the course of a single season. 

So if you think your precious game is above the organ that most makes us human, you can pretty much kiss my...... 

Spasticity After Stroke III: Options for Treatment

      What else works? BOTOX® (botulinum toxin type A) can be injected directly into the spastic muscles to provide months of spasticity relief. Intrathecal baclofen (ITB) therapy delivers spasticity medication to the intrathecal space (fluid flows around the spinal cord) corresponding to the spinal level of the spastic muscles. Oral medication, dorsal root rhizotomy, orthopedic surgeries and other treatments do reduce spasticity. And if you think that these medical interventions have nothing to do with therapists, think again. Physiatrists and neurologists believe that spasticity that limits function is one of the triggers for appointments for these experts in spasticity reduction. Who better than therapists to gently guide patients to these doctors for spasticity treatment?    
        A word of caution here: Once directed to a doctor who specializes in spasticity interventions, patients sometimes forget what to say and end up saying something vague like, "I want to move better." Prior to sending patients with spasticity to these doctors, tell them in clear and concise terms exactly what muscles you want the doctor to work on. If the patient has trouble with dorsiflexion because of spastic triceps surae, having the doctor BOTOX® the finger flexors is not going to help.
       The Holy Grail for spasticity reduction is a melding of doctor-prescribed medical interventions and therapist-delivered neuroplastic treatment options. The proper mix of these interventions is emerging as research goes forward. Guiding patients back to neurology and physiatry and accepting neuroplasticity as the substrate for authentic spasticity reduction are good first steps.

Spasticity I: The "Magic" "Cure" for Spasticity Reduction?

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Why do I have spasticity? What can I do to get rid of spasticity? When will it go away?"

        People who have any number of pathologies can suffer from spasticity. Spinal cord injury, multiple sclerosis, amyotrophic lateral sclerosis (Lou Gehrig's disease) and other pathologies have spasticity as a sequela. This column will discuss spasticity as it relates to acquired brain injury which includes traumatic brain injury, cerebral palsy and stroke.

     Most clinicians provide patients with overly simplified, incomplete and often inaccurate information about what spasticity is, its etiology and its cure. Therapists generally believe that patients don't want detailed explanations. But patients need to understand their spasticity. Why? Having patients understand their spasticity is essential because spasticity will only reduce if executive control over the spastic muscles, by the brain, is restored. And executive control over muscles will only happen with repeated firing of the muscle in question, and repeated firing will only happen if the patient wants it to happen.

Stop the therapy cap!

Addendum 9.18.14: 
As of today 220 members of the 435 congressmen have signed on as co-sponsors of the House bill to repeal the therapy caps. --Thank you Rebecca Dutton!

Let's say you've had a stroke. Not much of a stretch, huh? Now imagine a federal algorithm that determines the amount of therapy you'll get before you even have a stroke. Can't be done you say? Every stroke is different and so would need a different amount of therapy. 

You'd think the amount of therapy you'd get would be based on what the clinicians sitting in front of you think you need. But yeah, no. That's not the way its done. 

For stroke survivors the amount of rehabilitation available has progressively fallen as subacute stroke inpatient stays have dropped to an average of less than 16 days and as Medicare has capped the number of outpatient therapy sessions to 15/year.

And what really confuses me is why the Federal guidelines are not in concert with what the research says! 

So, if you're with me on this, click the red image above and let 'er rip. 

PS, the congressman who had a stroke, how much therapy did he get given the insurance provided congress? "...nearly a year of intense, grueling physical and occupational therapy." 

Exercising the Brain after Stroke

What drives stroke recovery? This question is both complicated and profoundly simple. It’s complicated because recovery involves rewiring the brain, and the brain is...complicated. It’s simple because the brain rewires in response to very simple instructions. In fact, these instructions have been known to athletes, musicians and other skilled workers for thousands of years. 

In the rehab clinic, exercises are called "thera ex (short for therapeutic exercise).

Therapists usually want to know which are the best thera ex for helping stroke survivors recover.       Beyond exercising, the other big option used in clinics are collectively called handling techniques. Handling techniques are just like they sound, the therapist moves you. Handling techniques, if you believe the research, don't much help. (If they did, I'd pay someone to "handle me" into being a better skier!). Exercise, for its part, is great! Exercise makes the muscles that need strengthening, stronger. The problem is, exercise is only mildly effective at changing the brain-- and stroke is a brain injury. Let me put it this way: a muscle can be strong, but useless because it does not know what to do. "Muscle memory" does not exist. The brain controls while muscles can only do two things: contract and relax. It's the brain stupid. 

Consider the one stroke recovery option that has consistently done really well in research, constraint induced therapy (CIT). In CIT, there are no specific exercises. Movement is required, however. The movements required during CIT very little resemble thera ex because focus is on repetitive practice, not muscle strengthening. And there are no handling techniques. In fact, CIT is decidedly and pointedly hands-off. It is cause of some curiosity among researchers why this hands-off philosophy is so difficult for therapists to accept. The only way of driving cortical change towards recovery is through volitional efforts by the stroke survivor. These efforts are actively encouraged no matter how ugly, synergistic or uncoordinated they are. Edward Taub, the person who developed CIT is a psychologist. As he was developing CIT in animal models, handling techniques and exrcises may have been the furthest thing from his mind. The closest, certainly, was operant conditioning which does appear to change the brain. Stroke is a brain injury, not a problem specific to muscle weakness. The term “neuromuscular re-education” is used a lot in PT and OT. In fact, you can bill for it. But the term is a misnomer. If it was an honest term it would be "motor-cortical reduction", or "movement reeducation." Relearning how to move after stroke has little to do with the muscles and everything to do with the brain. Stroke recovery involves brain reeducation. Different focus, different organ, different paradigm, different rules, different outcome measures. 

Okay, I just don't like or respect the guy

A few days ago I wrote about the drug whose cost was going from something reasonable $3.50 per pill to $750 because the new company owner wanted to. Due to pressure, they have now said they will reduce the price but didn't say when or by how much.

This same person has a history of filing frivolous lawsuits to interfere with FDA approvals and also hedging against the company stock. So he ends up making a bundle while slowing down drugs reaching the market. So this lovely gentleman has a history of doing this:

"Until this week, Shkreli was largely unknown beyond Wall Street and the pharmaceutical industry.He gained sudden notoriety for jacking up the price of Daraprim, a drug used to treat life-threatening infections, just two months after his company, Turing Pharmaceuticals, acquired the medicine.
Initially defiant in the face of an onslaught of criticism, the 32-year-old chief executive agreed on Tuesday to lower the price, although he has not indicated when or by how much."

But wait there's more!

"Shkreli employed a similar pricing strategy at Retrophin, another drug company he ran before its board of directors booted him from his executive position. Last month, Retrophin accused him in a lawsuit of using company funds to repay investors after his hedge fund became insolvent."

Isn't this illegal?

"Shkreli also has a track record of betting against pharmaceutical stocks — a practice known as short selling. And in at least two cases he pressed federal regulators to reject the companies’ product at the same time he was betting the stocks would go down."

I think I have a nasty name for him now.

"In 2010, while running his hedge fund, Shkreli wrote a letter to the FDA urging the agency to turn down an application from MannKind, a company he was shorting that was seeking approval for an inhaled insulin product, according to news accounts. The agency initially had multiple issues with the drug but eventually approved it last year."

And again:

"In 2011, Shkreli then turned his attention to Navidea and its cancer diagnostic, called Lymphoseek — this time going so far as to a file a “citizen’s petition,” a more formal kind of regulatory complaint. Shkreli has no formal medical or scientific training. But while shorting the firm’s stock, he argued there were problems with the design of clinical trials used to evaluate the radioactive agent.

He publicized his complaints and financial bets against Navidea, which caused the company’s stock value to drop by nearly half, to about $250 million, leaving the drug maker in turmoil.

By filing the petition, Shkreli “almost derailed the Lymphoseek program,” said Steve Brozak, who heads WBB Securities, which helped raise money for Navidea (which was known as Neoprobe at the time). “He created an illusion there was an issue [with the trials], but the only thing he did was make money by shorting the stock. Meanwhile, patients could have been penalized.”"

What a 'nice' guy. He is lining his pockets with complete disregard for the patients who might actually benefit from these medical developments. He is young (32), but I am not sure he will ever grow out of this, unless he ends up in jail.

It is people like this who contribute to the expenses of pharma companies who are trying to bring new life saving treatments to market.

There is no good cancer

I cannot tell you how annoying I find this. To many people state that thyroid cancer is a good cancer. It is not good, its cancer.

A woman in Alaska who has had three cancer diagnoses stated:

""Thyroid cancer takes a long time to grow, so it's a great cancer to have," Zaverl said."

Okay, what is so good about it? After treatment, the patient is left without a thyroid which requires medication and monitoring for the rest of their life. That is not so great.

I do not understand that people who think thyroid cancer or any cancer is a good cancer.

Read more here: http://www.kentucky.com/2015/09/27/4055913/three-time-cancer-survivor-becky.html#storylink=cpy

Keeping secrets

Everyone keeps secrets - like how much I weigh. That is known to me, the scale, and my doctor's office. Its no one's business but mine and, truth be told, I really do not like the number but that's another story. There are other instances where keeping secrets is okay. Like a secret family recipe. Or a medical history.

These secrets are just information we want to keep private for whatever reason. It is fine that they are kept private and not shared indiscriminately.

Then there is the issue of secrets vs. transparency. This is when secrets are kept between groups where they should not be. Transparency is important between groups so that honesty leads and there can be understanding and appreciation of the other side. Without transparency, dishonesty can be suspected and with suspicion comes distrust. Which leads to bias and anger.

A big area where there is no transparency is in drug pricing. The pharmaceutical industry has a problem with this. Yesterday (was it yesterday or the day before?) I blogged about that 'gentleman' who jacked up the pricing of an existing drug for no given reason.

And for an industry already struggling with an image problem over the rising costs of prescription drugs, companies are going to have a hard time distancing themselves from one of the most controversial men in America.

The reason is a lack of transparency. Drug makers do not really want to explain how medicines are priced and, as a result, they have adopted an air of secrecy in which one cowboy can create havoc for an entire industry.

“The [Shkreli] episode is really an extreme manifestation of an attitude that has taken over the industry,” said Bernard Munos, a former corporate strategy adviser at Eli Lilly who is now a senior fellow at FasterCures, a medical research think tank. Most drug companies “are not raising prices by 5,000 percent, but large prices will leave patients with the same impression.”

It’s certainly true that funding drug discovery is expensive. The latest estimate of what it costs to get a drug out the door is, on average, $2.6 billion, according to a 2014 Tufts University report that was funded in part by industry.

Yet pharma leaders have done a poor job of explaining how the cost of R&D translates into a need for climbing prices or the sky-high sticker prices that are commonly set for new medicines from the get-go. Rather than opening their books, drug makers continually repeat the refrain about increasing development costs, and they avoid any candid discussions about cost that may invite more interest in setting price controls.

This is not a good thing. We need transparency to prevent more 'greed based' actions. Honesty and its partner transparency should rule. Secrecy and suspicion should be

The big reveal

I have worked at my  job for almost 6.5 years and am leaving in five weeks. Well I will work remotely one day a week and come in once a month until my replacement is found. Which I assume will take until spring.

I have made friends at work as I have been there so long. They make fun of  my health regularly. And they only know half of it. Yesterday's joke was that I have more ailments than all the patients on the first floor of the local hospital combined. We laugh about it. They wonder how I can laugh about it and I say I have to laugh about it because I really do not have any other choices.

But they really do not know all about my health. They know I have a bad back, fibromyalgia, and rheumatoid arthritis. They do not know about cancer and all the rest. I have decided what I will do when I am done working there is I will give two of my co-workers a link to my blog so they can keep in touch and follow along with the rest of the disasters in my health (unless I miraculously get cured).

In the past, I have never shared my medical crap with my co-workers. I have always felt it doesn't belong in the workplace and I might some day want a reference for another job. At this point, I am retiring and hope to apply for disability social security. I don't plan on needing another job reference because I don't think I can continue to work at all.

So finally I can reveal my medical history to anyone I want to with out fearing any impact on my professional life. I mean who wants to hire someone as unhealthy as me?

Taking charge once again and chaos

I usually go along with the flow of medical care and go to my appointments like a good girl. But every so often I take a step back and make some changes.

When my therapist retired at the end of last year, I switched to a new one who I didn't like. Then I switched to another. I really don't like her and find her pretty useless to me. So I think she is getting the ax when I see her next week.

She also sent me to a fibromyalgia support group, one of the most useless meetings I have ever been to. I will be opting out of that as well. One of my big reasons is that I feel I get no support from it. And as its an official 'group' at the hospital, I have a $20 co-pay every time I go. I sometimes go to the breast cancer support group at the hospital and there is no co-pay so I have no idea why I have to pay for this one. But not any more.

Right now I have enough going on with out wasting time and money on useless meetings. Our house is a disaster right now. The only things in the living room are a sofa, a sideboard, two lamps and the tv on a tv stand. Everything else is stuffed into another room. The master bedroom is empty of everything but two dressers. We are sleeping on the mattress and box spring in the guest room which is packed full of boxes and other stuff. The kitchen is also a mess. This is all because we are having the walls painted. We hope they will be done today so we can put everything back tomorrow.

The exterior paint is being touched up. We had it painted nine years ago with a 'lifetime' paint that hasn't lasted. The manufacturer is providing new paint free of charge that was supposed to arrive Tuesday. I called yesterday and found out he 'forgot' to ship it. He swears he would ship it yesterday so we should have it next Thursday (it comes from British Columbia). I will be on the phone with him later today to make sure it shipped. Now it looks like the house will be painted the day before it goes on the market on 10/15. 

I don't need any more stress. Grrr.

Once again its Pinktober

Except I do not celebrate Pinktober. At this time of year I look forward to apple picking, Columbus Day weekend, leaf peeping, and Halloween (which is the best annual excuse for a sugar high).

I am braced for the onslaught of pinkness and really do not care for it. I will not be walking, running, shopping, or donating for anything pink. Because of Pinktober, I actually resist contributing to anything pink for the month.

And it is also Liver Cancer Awareness Month.

I think this year I will support Liver Cancer instead of pinkifying anything.

Breast Cancer Research Topics

In the middle of pinktober, after Metastatic Breast Cancer Day (October 13), I have some thoughts on breast cancer research I would like to share:

My first wish is that more money, time, and focus would be on metastatic breast cancer research. Breast cancer does not kill, metastatic or late stage breast cancer kills. The proportion of funds spent on metastatic breast cancer is minuscule. This needs to change or more and more women (and men) will continue to die from this disease.

My second wish is that more research would be done on DCIS to determine which cases are more likely to develop into potentially fatal disease vs. those which will remain benign. The vast majority of cases of breast cancer which are diagnosed are DCIS. Many of these patients are subjected to extensive surgery without really knowing if it was necessary or not. This needs to change.

Finally a cure for cancer would be quite welcome as well. According to Star Trek, a cure for cancer was discovered in the 21st century.....

When your body lets you down

It happens to all of us - you reach for something and your back twinges, you get a bad cold, or whatever, they are part of life. But then sometimes your body really lets you down.

This became very clear to me one day when I was skiing about ten years ago. I was having a wonderful time and then I fell on one run. I thought I was fine but some man stopped and said he friend had gone for the ski patrol. I thought he was crazy but since he insisted on waiting with me, he could help me untangle my skis. Then when I put weight on my knee it bent side ways and I knew he was right. I ended up with a torn meniscus and a partially torn ACL which meant knee surgery and the beginnings of knee problems.

My body has since let me down in other ways. I seem to have collected ailments that won't go away. Tennis elbow, lymphedema, bad back, rheumatoid, fibromyalgia, and that cancer crap. They just keep piling up. Yesterday afternoon I got very frustrated with myself. I try to be a normal person and then my body protests.

Sometimes I feel I should be in a geriatric ward some place with all my aches and pains. But then I try to tell myself that I got through cancer twice so I can cope through all this. But its the continued emotional spiral of coping with aches, pains and scars that is difficult.

I haven't been getting enough rest recently. Nor enough sleep. This makes it harder for me to physically and emotionally deal with life. And since we are at the worst part of the chaos of putting our house on the market (which means I will take our toaster oven with us today so it will not be in the way while they take pictures of the house). I will bring it back tonight so we can have toast in the morning and then take it with us again as they show the house. This is on top of the list of everything else I have to do today to make the house picture perfect.

My biggest problem is with everything I cannot do. I can't carry stuff around (one of my doctors told me that I cannot pick up everything after I told him we were moving). I have to wait for my husband to be home to carry stuff around for me. I get stuck and have to wait for help so often. My body is failing me too soon. And it drags me down and I constantly have to fight back.

Okay, enough whininess this morning. I will go back to being positive.