Tuesday, April 23, 2013


Did you read yesterday's post?  The One Where We Get To Say "I Told You" is a must read for some of this to make sense. I'm going with a building block theme this week.

Let's review the three important foundation blocks upon which todays post is perched.

  1. Neuroplasticity.  The Omega workshop which will be held in June has a quick and excellent description which always works for me.  Miss Wordy.  Don't want to click?  OK....  The high points:  For a long time, scientists believed that our brains stopped growing by the time we are 21.  (There's a definite wise crack in there which I will ignore.) Recent discoveries have shown that our brains continue to evolve and neuroplasticity refers to the brain's ability to reorganize itself by forming new neural (nerve cell) connections.  MedicineNet.com does a fine job of outlining the process with specific reference to injured brains.
  2. Listen To Us!   The study published last week which I wrote about yesterday adds to the body of evidence to let the medical community know, "Hey, it's okay to listen to us!"  Dr. Ganz designed a study that provides compelling evidence.  My Rockstar "Bud," Idelle Davidson, did a terrific job of outlining the study on her blog.  The take away, Stay With Me Here: Patient Reported Outcomes surely appear to be reliable measures when assessing chemobrain.
  3. Biological Understanding is NOT Necessary to Attempt Intervention.  That statement stands on its own merit. Our chemobrain issues may be addressed without a complete understanding of the hows and the whys.  That is HUGE.
Enter, Jean Alvarez.  There was a wonderful article published yesterday in Cleveland.com and I PROMISE, that link is a definite clicker.  The scientific publication can be found in Integrative Cancer Therapies.  And here's MY disclaimer.  Jean DID contact me several months ago to ask if I would be interested in taking a look at her study.  I jumped at the chance to read what was being prepared for publication.  As we communicated, Jean asked if I would be interested in trying the method used in the study.

She has a colleague in NYC who agreed to give me a "sample session."  I met with Catherine Boyer at her office and I did NOT do a sample session.  Instead, we discussed the method of intervention (I'm GETTING TO IT!) and I set up a training schedule with Catherine.  Very important:  I paid for my sessions.  No "enticement" and no bias.  My plan was to show up and see what might happen.  I was intrigued and quite curious.  I was also a milli-second from pleading with my doctor for a prescription for nuvigil and I was armed for the fight with my insurance company to cover the cost of the medication.

Jean's study was designed using patient reported assessments to attempt an intervention by providing the brain with a means to reorganize itself.  Take that statement in and go read those three key points one more time.  Do you see every one of them in one sentence?  Yes, You Do!

The study used a neurofeedback (NFB) system.  The beauty of this system and the method of training appealed to me. Traditional feedback requires active participation from the person with the things taped to their head.  It also requires a highly trained professional to identify the specific area of the brain where there is a problem.  Once identified, the brain is nudged to move in a different direction.  Think of it as a detour except there is no clear path and  if the coaxing isn't precise there might (emphasis on might) be a new path which is worse than the original path.  Not making sense?  Not necessarily important to this conversation and here's why.

I have enough problems in my head (I can line up many, MANY people who will vouch for that).  I think I would be a bit fearful of allowing someone to decide where they feel the problem lies and which path is the best way out.  The NFB that was utilized in this study does not require any assessment of specific problem areas.  Instead, it relies on the brain's own ability to reorganize itself.  It looks at the brain as a whole rather than targeting any one area.  It does not force or suggest or nudge or coax.  The NFB simply signals the brain.  "Hey, you're getting distracted" or "You're about to nod off" and then, the brain takes the information and decides for itself if it is going to transition to another place or stay right where it is.

Okay, once again with the grossly oversimplification of a highly sophisticated system but this process is just that: Simple. I am seated in a comfy chair, feet up.  Two sensors are placed on my scalp and two others are on my ears.  Music begins to play and images are on a large computer monitor.  What's my role in this whole procedure?  Consciously?  Nothing.  I can zone out.  Or concentrate on the music.  I can fall asleep.  When the sensors pick up that my brain is about to exit, stage left, there is a brief interruption in the music.  My brain decides what to do.  I have no clue what decisions are being made and no choice is "suggested" by the system.  I've been awake for the entire time, I've fallen asleep other times.  Some times I bounce between semi-asleep and VERY relaxed.  After 33 minutes, the sensors are removed and I skip happily to my car.

Although the results in this study are promising, there were only 23 participants.  Please DO go back and click the Cleveland.com link to read the details.  Jean shares her hope that these results are impressive enough to design a study that incorporates a control group, a larger and more diverse patient population, pre and post NFB MRI, the use of "sham" (fake) NFB in a double blind setting (where neither the technician or the patient know if the NFB is real or not).  The company that developed this system may be developing a program that would allow for such studies.

It starts with an idea.  Jean had an idea.  It may work.  What have I noticed after ten weeks?  I am still suffering from severe distracted brain.  I'm all over the place.  I'm beginning to wonder if I'm taking on a bit more than I should and that is causing some of the distraction.  To be fair, I must say the staying on task is still a problem.

HowEVER....  some of the things I did notice.... and it wasn't until well afterward that I looked back and realized, "whoa.... what the heck just happened?"

I was at the hospital waiting for a meeting to start.  I was seated in the lobby at a particularly busy time of day.  I opened my iPad and began to answer email.  Attached to one email was a scientific publication that I started to read.  It was fairly complex and I was more than halfway through the thing before I looked up and saw the commotion going on within eight feet of where I was seated.  Two women alternately arguing and then getting on and off a cell phone.  They were seated within five feet of my chair.  Off to the side, a group of three people, one of whom was very upset and being consoled by the other two.  And I tuned ALL of this out as I was reading.  I recall glancing up at the commotion and going right back to the paper.  Suddenly, I stopped and took a good look around and then glanced back down at the iPad with a bit of a grin on my face.  What was THAT all about???  I need total silence and no view of the outside world to concentrate.

That whole color code post it note organization thing I blogged about...... That was after a few sessions.

One evening, we were at a hockey game.  I'll spare the details except to say there was a commotion on the ice, a commotion in the stands and a fairly complicated math issue on the time clock.  And penalties and a goal scored and I blurted out the math without thinking AND I questioned something else that I KNOW was logical.  Considering my numbering system only works in increments of 100, the fact that I was able to tick the time off the clock by mentally doing a quick subtraction of two numbers from 60? That was yet another, "WAIT, what just happened?" moment.

I still feel somewhat overwhelmed but I do feel less foggy.  I did the same assessments that Jean administered in the study and she did provide me with the 7 week comparisons.  I've improved in all areas.  I'm still training with Catherine and hopefully, I will continue to see improvement.

This feedback certainly appears to have tremendous potential to be restorative, to help the brain find new pathways.  It's unknown if these results will hold up over time or if "booster sessions" might be necessary.  There are more questions than there are answers but the great thing?  There ARE questions and there is something that may provide at least some of the answers.

Considering the conversation last night during our #BCSM chat about finding ways to involve patients in helping to frame the research, I'm sticking with Jean.  This is absolutely worthy of a long hard look with all the proper controls in place.  I hope to help make that happen.


  1. I'm glad it's working for you, and I hope wider access becomes available sooner rather than later.

    The Jean Alvarez study is available to patients through RightsLink for $3.50. It can be accessed by using the "patient" link at the bottom of the order page.

    The Journal of the National Cancer institute also provides patient access, but they make it harder to obtain.

  2. AnneMarie, so glad the neurofeedback has helped you. I know there are different methods of neurofeedback out there (UCLA is still working on their study with a different kind) but it sounds like this one may be really effective. I find that quite exciting!

    So glad you're out there writing these wonderful posts!

  3. Amazing progress, Ann Marie! Neuroplasticity is a fascinating concept. Thanks for sharing your experience.

  4. dear annemarie,

    i am thrilled for you on so many counts - validation from such respected sources and people like
    jean alvarez, the hope of a study with a control group and many more participants. but most of all, the excitement you felt at those moments when you and your brain were able to do mental gymnastics you've not been able to do for a long time, PLUS, the evidence provided from your training that you have improved in all areas. thanks so much for this post - i'm sure it's ratcheted up the hope factor for so many "in the fog".

    love, XOXOXOXO,

    karen, TC

  5. Fascinating post, AnneMarie. Logically, it seems to make sense - if the brain can be retrained after a stroke then why not after chemo too? I look forward to hearing more. Good luck! ~Catherine


Something to add? Do Share!