Sleepless in Wilmette…and that’s bad

For the past month or so I’ve been on steroids to address this little sight issue that landed my sorry butt in the hospital. (See my “Pick Your Own Caption” posting on Thursday, January 26, 2012)

I got my sight back when I was put on steroids.  The great thing about steroids is that that it cleared up my short-term vision issue.  The worst thing about steroids is that I couldn’t sleep much.  When I mean “much”, I mean for weeks I got maybe three hours a night, and possibly another cat nap or two during the day.  Now that I’ve just finished my steroid taper, I’m hoping to sleep like a normal personal, or at least like I used to sleep.

According to a recent Lumosity posting, sleep is critically important to forming long-term memories - http://www.lumosity.com/blog/sleep/

It makes me wonder if the Lumosity I was doing at 3am was any good at all and if I’ve forgotten something important that I thought I learned during that time.

Brain Maintenance, Stress Management & Mindfulness

I’ve been reading a particularly good book on brain building entitled The SharpBrains Guide to Brain Fitness by Alvaro Fernadez and Dr. Elkhonon Goldberg.  The book is billed as a guide to brain fitness and features interviews with scientists, product reviews and just plain practical advice.

It’s a hopeful book. It tells you that the “the latest scientific research shows that specific lifestyles and actions can, no matter our age, improve the health and level of functioning of our brains.” Isn’t that good to know? 

I really liked reading that “the nice thing about discovering that our lifestyle can affect brain functions is that it puts our brain health largely under our own control.” They emphasize that getting to your own best brain health takes a “multitude of approaches” which they summarize as the four pillars of brain health:

1. Balanced nutrition
2. Stress management
3. Physical
4. Mental stimulation

Having read that, I decided that I have programs in place for three of these four pillars.  I physically work out on a regular basis.  I mentally work out my brain with Lumosity and the two games I bought from Marbles’: ColorKu and Block Builders (although I’m thinking of getting some more). And I’m trying hard to eat healthy – more veggies. 

I haven’t, though, doing anything about stress management.

So I just bought Mindfulness: An Eight-Week Plan for Finding Peace in a Frantic World by Mark Williams and Danny Penman. So what’s “Mindfulness”?  According to the authors, based on the techniques of “Mindfulness-Based Cognitive Therapy” (MBCT) the book offers “simple and straight forward forms of mindfulness meditation” that can be done by anyone.

The operative word here, is “meditation”.

I’ve been bumping into the idea of meditation as important for brain health in a variety of places…and haven’t yet really tried it. I've thought about trying it. I've written about trying it. Now that I’ve actually bought a book, instead of just getting it from the library, I’m hoping that I’ll actually do some meditating.  At least, I’m going to read the book.

If you’ve meditated, send me a note and let me know if it’s worked or not.

Here’s a link to the SharpBrains guide: http://www.amazon.com/Sharp-Brains-Guide-Brain-Fitness/dp/0982362900/ref=sr_1_1?s=books&ie=UTF8&qid=1330443423&sr=1-1

 

And here’s a link to the Mindfulness book: http://www.amazon.com/Mindfulness-Eight-Week-Finding-Peace-Frantic/dp/1609611985/ref=sr_1_1?ie=UTF8&qid=1330443330&sr=8-1

My favorite brain tumor, cancer and traumatic brain injury memoirs

There is something about having a brain tumor that leads to interesting, provocative and brutally honest tales of brain tumors and injuries.

Here’s my top six. I’ve read every book on this list with the exception of Curveball, which I just got in the mail yesterday.  I like them all and, somewhat surprisingly, like them for different reasons.

Cancer Vixen by Marisa Acocella Marchetto brings unexpected glam and style to the genre. I found the graphic novel format powerful and emotionally involving. After finishing this book I wanted to have a beer with her husband who, for all his restaurant fame and fortune, seems like a really likeable guy. All the same time, it’s a bit “New Yorky”.

Curveball: When Life Throws You a Brain Tumor, by Liz Holzemer, is something I’m looking forward to reading. Her blog - http://wwwascrewloose.blogspot.com/ - is completely different from the usual brain tumor rant. I’m also a fan of her personal commitment to “give back” through her 501(c) (3) not-for-profit organization, Meningioma Mommas - http://www.meningiomamommas.com/donations

Gabby’s book, Gabby: A Story of Courage and Hope by Gabrielle Giffords, Mark Kelly and Jeffrey Zaslow - is at one and the same time horrifying and inspiring. You just gotta love her and her husband.

I also loved Suzy Becker’s book - I Had Brain Surgery, What's Your Excuse? - and her unrepentant honesty about her disease, her emotional roller coaster ride, her tenacity and her drawings. (I also have a soft spot in my heart for bikers and those who give back – and Suzy is both) She blends her writing and drawings into a complete story that words alone just couldn’t tell.

My Stroke of Insight by Jill Bolte-Taylor is, for me, the seminal work in the arena which combines personal journey with incredible scientific insights. I also want to start a fan club for her unbelievable mother.

Ms. Wisenberg’s blog and resulting book seems to have been on the vanguard of cancer blogs and, as you would expect given her literary background, creatively written. If you have a chance to listen to her speak in person, grab it. The time I saw her she brought the little statue/avatar her publisher made for her which, by itself, was worth the price of admission.

What have I missed?  What should I read next?  I’m interested in everybody’s comments, suggestions and recommendations.

Food for Thought: “What the Ultimate Organ Needs to Stay Healthy”

I’ve just read a nicely comprehensive article of the same name that summarizes the different aspects of brain food and their potential/hoped for impact on brain health.  The article is entitled “Food for Thought: What the Ultimate Organ Needs to Stay Healthy” and I found it on The Doctor will see you now website: http://www.thedoctorwillseeyounow.com/content/nutrition/art3258.html?getPage=1

It’s a nicely readable article that walks you through the pantheon of current thought about what you should be eating to help your brain, including omega-3 fatty acids, the B family of vitamins, vitamin D, and phytochemicals, which are plant-derived compounds that often act as antioxidants.

It also taught me a bit about Curcumin, an indian spice. According to the article, “Indian populations suffer from Alzheimer’s disease much less than Americans. New research has outlined the mechanism by which curcumin actually fights the development of amyloid-beta plaques in the brain.”

Since I love Indian food, the idea of loading up on some curcumin sounds delicious to me. I’m looking for any excuse to go to the Udupi Palace Restaurant on Devon Avenue in Chicago and try their Mysore Masala - http://www.yelp.com/biz/udupi-palace-restaurant-chicago – which a friend just told me was to die for. 

Yes, I’m easily distracted by food.

In terms of the article, give it a read and tell me what you think.

My favorite therapists

I’ve been thinking about what makes for a really great therapist, because I’ve had two therapists that I thought were great: Ms. Violet Potocki and Ms. Beth Sullivan.

And as I think about it, it’s a tough job.  Most have the technical skills required for the job, i.e. what task to assign at what time in a patient’s journey given the issue they’re tackling. I found, and I think the literature agrees, that the task should be a bit challenging without being overwhelming.  I once had a therapist who gave me a homework assignment that was way above my ability – it took me five hours to complete one “find-the-words” exercise.

There’s also the coaching side of the job which is part street-smarts and part good listener and requires somebody with a pinch of empathy in their soul. They’re the type that knows that a smile and positive encouragement greases the gears. Just like in an athlete, if you think you can do it, you’re halfway there.  If you think your therapist doesn’t think you can do it, whatever “it” is, it’s a lot, lot harder.

This is another way of saying that I’ve also had the local equivalent of Nurse Ratchet proctoring me.  If you’re not familiar with Nurse Ratchet, try this link: http://en.wikipedia.org/wiki/Nurse_Ratched b

I’m also partial to therapists who know how to let you make an assignment fun.  While working with Beth, she gave me an assignment of plotting a cross-country trip from our house to the west coast.  She wanted to see if I could parse it into drivable chunks and figure out a route that made sense. I took that assignment and added an overlay of stops at Drive-in, Diner and Dive restaurants from the TV show of the same name. My first stop would have been Big Mama’s in Omaha because anybody who loves sweet potatoes and ice cream is alright with me - http://www.bigmamaskitchen.com/page/1h0l9/Home.html   

Beth genuinely liked that. She didn’t fake interest or somehow feel that it was frivolous.  I now use that example in my patient presentations because it hits on so many of the high notes that a good therapist weaves into her inspiring rehab song.

Some of the videos of Representative Giffords going through rehab also show a therapist who also seems to have all the temperament and vision and technical skills you’d love to have in your therapist. Here’s one example - http://www.youtube.com/watch?v=a16UBv9gEt0&feature=related

I’d love to hear more from everybody on this.

John

I hated my driver’s evaluation this morning

I had the indoor assessment this morning and just hated the whole experience.  The process seems set-up to be demeaning and negative.

I just love the question at the beginning:

1. Do you still have a brain tumor?
2. What happened during that incident earlier this month? What was that? (feel free to add the appropriate lilt to your voice)
3. Have you improved? (Said with a uncertain and probing tone)
4. Do you still have a slow processing unit? (Ok, maybe she didn’t ask it exactly this way, but this is how I felt she asked it)

I find the entire process negative.  You walk in the door and you are guilty until proven competent. Of course, her eyes I am guilty of still having a brain tumor – that came through loud and clear.

My recent visit with my ophthalmologist was totally different – he was upbeat, positive and encouraging. He made me feel like I could go forth and conqueror dragons.  And he wasn’t blowing smoke, he just looked very professionally at my eyes and eyesight and noticed some improvement. 

Of course, I didn’t help myself.  Still on steroids, I slept like crap last night and was in a daze when I got to there.

On top of that, I find it odd that the therapist wants to do another visual field test my hand rather than just rely on the very accurate visual field test that I just had from my ophthalmologist. I mean, really, what is she going to learn from poking a pencil into my visual field from different sides that the professional test results can’t tell her?

In spite of my daze and less than impressive results, I asked for another test when I was off steroids. So, of course, she said “no”, that she wants to proceed directly with a road test. I find this confusing.  I will be off of steroids by the test and should be able to react much better.  Will she trust the over-the-road results without a very strong indoor assessment? 

This whole process gives me gas.