Sunday, January 31, 2016

It's the moments that matter … part 1

By Monica Vest Wheeler
Retreat & Refresh Stroke Camp Staff Volunteer

One of the most precious elements of Retreat & Refresh Stroke Camp is witnessing moments that are memorable and that matter. I have been so blessed to be in just the right place at the right time to see priceless human connections unfold before my camera lens. This week and for the next couple of weeks, I want to share the stories behind some of my favorite photos that in some small way tell the story of Stroke Camp and why this organization is so vital to so many folks.

During evening activities at our Living Springs camp in 2014, I was mesmerized by watching music therapist Kyle Wilhelm, right, interact with stroke survivor Mel. Mel has severe aphasia, which has hindered his ability to speak, but it has not dampened his enthusiasm for life and the odd ability to say two words, "hot dog!"

I love Mel and his devoted wife and caregiver Dora, and I stood off to the side for about 10 minutes watching Kyle work with Mel to bring some rhythm to his speaking efforts. We've seen some amazing miracles with music therapy at camp, which is a whole other subject. What I loved about this moment was the human bond these two men are sharing to learn new ways of communicating.

The roots of Stroke Camp are based on pure and simple human connections. It's truly what camp is all about, whether it's a survivor or caregiver getting personalized attention on ways to improve their daily life, or reminding them that there IS life after stroke.

Yes, there IS much more to be discovered about life after a stroke … much more laughter to be shared … much more love and friendship to be revealed. And that's the ultimate beauty of Stroke Camp …

Sunday, January 24, 2016

The Whole Brain Nothing But The Brain.

This post is about the brain. Strokes and brains are closely related (thank you Mister Obvious). The brain is more than a glob of tissue in your skull. It is so much more complicated, and consisting of so many parts that it defies comprehension. Cutting the blood supply (aka; stroke) to any of these parts will have dire consequences. 

I'm going to tell you about a mobile app that will show you every part of the brain plus explanations giving you a better understanding of the complexity of this organ. 

This is a free app called 3D Brain (by DNA Learning Center) that I found on the Google Play Store. I would be willing to say that it is free on the iTunes - Apple Store, too. Just bring up the store app of your choice and do a search on 3D Brain.

3D Brain was produced by the Dolan DNA Learning Center at Cold Spring Harbor Labratory, 1 Bungtown Road, Cold Spring Harbor, NY 11724:

The following is taken from the info tab of the 3D Brain app itself as it appeared on my Android tablet. If you don't want to read all this then scroll down to where I show you the graphics and how to use the app.


The brain is a remarkable structure that defines who we are as individuals and how we experience the world. Recent advances in neuroimaging have allowed researchers to look inside the brain, providing vivid pictures of its subcomponents and their associated functions. The gross structure of the brain is familiar to most. The outer layer of the forebrain constitutes the familiar wrinkled tissue that is the cerebral cortex, or cortex for short. The large folds in the cortex are called gyri (from the Greek, ‘circle’). The small creases within these folds are fissures (from the Greek, ‘trench’). Each hemisphere of the cortex consists of four lobes— frontal, parietal, temporal, and occipital. Other important structures are the brainstem, cerebellum the limbic system (which includes the amygdala and hippocampus).

The G2C Brain consists of 29 interactive structures that can be rotated in 3-D space. Each structure contains information on associated functions, disorders, brain damage, case studies, and links to contemporary modern research.

Case studies
Perhaps the most well known-case study in neuroscience is Phineas Gage, who suffered severe damage to the prefrontal cortex following a railroad-related accident in 1848. An explosion drove a large iron rod through Gage’s skull, and he was later reported to have severe social impairments. Although the extent of these impairments remains controversial, his case study was a landmark in that it correlated specific cognitive functions with a specific brain area. Since then, tens of thousands of case studies have sought to associate specific brain regions with specific functions, and many of these are documented in G2C Brain structures. However, it is important not to overstate the point. All cognitive functions result from the integration of many simple processing mechanisms, distributed throughout the brain.

Associated functions
many others

Associated cognitive disorders
Almost without exception, cognitive disorders correlate to multiple regions in the brain. Just as the genes and biochemicals associated with cognition are expressed throughout the brain, gross structures that correlate with cognitive disorders are widespread. This is certainly true of the six disorders covered in G2C Online: ADHD, Alzheimer's autism, bipolar disorder, depression, and schizophrenia.

Associated with damage
It is possible for the brain to repair damaged neural networks or to compensate for the loss of function in particular structures. Common impairments resultants from brain damage include deficits in attention, emotion, language, learning, memory, movement, perception and sensation.

basal ganglia
Broca's area
cingulate cortex
corpus callosum
dentate gyrus
entorhinal cortex
frontal lobe
inferior temporal gyrus
limbic system
middle temporal gyrus
occipital lobe
parietal lobe
perirhinal cortex
prefrontal cortex
premotor cortex
primary motor cortex
somatosensory cortex
superior temporal gyrus
temporal lobe
Wernicke's area
and many others

Here I will show you the steps to use the app.

1. When you start the app you are presented with the following screen. You can tell your in 3D View mode because you can see the blue line under the words 3D VIEW near the top left of the screen. You can touch the brain and rotate it left and right by sliding your finger.

2. From this first screen you can bring up the list of parts as shown below by touching the word Brain that appears just under that blue line. The list will look like this:

3. Touching any of the items in the list as shown above will show you a 3D image like this one below. I selected Amygdala. Again, touching the image and sliding your finger left or right will rotate the image:

4. Now, if you touch the word LABELS near the top of the screen that is just to the right of the words 3D VIEW, you'll see the following with the blue bar now under the word LABELS, and lines pointing to each area for that part. This image does not rotate:

5. Next, if you want to see more information about this part, then touch the word INFO that is to the right of the word LABELS near the top of the screen.

This is what you'll see. A detailed description of the item:

6. To position to another brain item, touch 3D VIEW again and start over. That's all there is to it.

Research reviews

Harrison and Weinberger (2008) review schizophrenia by integrating research on genes, gene expression, and neuropathology (Pubmed ID number: 15263907).

Malenka and Bear (2004) review the processes underlying long-term potentiation and long-term depression (Pubmed ID number: 15450156).

Selkoe (2002) reviews evidence that Alzheimer's disease begins with subtle alterations of synapses in the hippocampus, caused by assemblies of the amyloid beta protein (Pubmed ID number: 12399581).

Sudhof (2004) reviews the synaptic vesicle cycle (Pubmed ID number: 15217342).


Sunday, January 17, 2016

How I Got an Extra 100 Hours of Rehab

The following article is part two of two parts written by Clay Nichols. Part one is in last week's post titled "Busting Recovery Myths". Clay, as you learned last week, is co-founder of MoreSpeech and Bungalow Software. Both provide Speech & Language Software.

I encourage you to visit his site by clicking on this link: Speech & Language Therapy Software for stroke and brain-injury survivors 


by Clay Nichols

Specific steps I took to get extra, personalized rehab treatment (free) after an injury and made a full recovery.

Previously, I explained how your brain recovers from an injury such as stroke or TBI, and why insurance sometimes doesn't provide enough therapy to make that recovery, then denies additional therapy... because you didn't make progress (what I call the Insurance Catch-22). So, if recovery is possible, but you need more than what insurance typically provides, what can you do?

Here’s what I did.

My Rehab

A year or so ago I had a shoulder problem from too much computer use. (I’ve been creating speech therapy software for over 20 years. All that time on the computer caught up to me.) So off I went to the PT.

She had me do a bunch of exercises to strengthen my shoulder but it was tough to remember the exercises. How high should I rotate my arm, here? I know, you're saying hey, you're overthinking this. If it doesn't hurt you're OK. Well, some of the movements I made caused my tendons to pop. It didn't hurt but when she cringed I knew it was a Bad Thing. And as I did the exercises, she corrected my form quite a bit. If I did those exercises wrong they wouldn’t have the desired effect, or worse, they’d cause further damage.

So, I couldn't remember the exercises and wasn't even following her directions perfectly in therapy. And I'd need over 100 hours of treatment for full recovery. I didn't have an extra $10,000 to spend on having the PT guide me through each of those 100 hours. Also, I'd rather not spend an extra 100 hours driving to and from the PT and sitting in the waiting room.

I'm not complaining. Stroke & TBI survivors have it much worse.

Why Deliberate Practice is the key to improvement

Just Do It is not as effective as Do It Right

Before I explain my nifty solution, I want to point out why I didn't follow Nike's advice and Just Do It. If I wanted the exercise time to have maximum effect I needed to do the exercises the right way, and not just going through the motions (quite literally in this case). Doing 100 hours of exercises improperly wasn't going to help me much.

In his book So Good They Can’t Ignore You, Dr. Cal Newport studied how people improve significantly at a skill. He demonstrated that exceptional skill is rarely due solely to luck and natural gifts, but due to what’s termed deliberate practice.

Put another way, if you just show up and work hard, you’ll soon hit a performance plateau beyond which you fail to get any better. We all hit plateaus. Cal Newport, PhD

Plateaus? Sound familiar? It’s what survivors in speech therapy run up against all the time, as I described previously.

What Dr. Newport calls Deliberate Practice, would translate, in Rehab, to Treatment. If you have apraxia following a stroke, and can't speak, you don't simply try harder to speak, you consult a speech therapist. They would then provide you with specific exercises for the Apraxia. An excellent example of treatment in speech therapy is the the Rosenbek Hierarchy, which is a very specific treatment protocol which research has shown is effective for Apraxia treatment. The idea behind it is that the patient starts with success (getting as much assistance as needed) then that assistance is gradually reduced as the patient improves.

Don't sacrifice socializing!
Practice is preparation, not replacement, for socializing.

Speech & language treatment should not displace social interaction: don’t give up enjoyable time with the family to sit in a room doing drill practice. But don’t expect social interaction, alone, to improve your speech and language as effectively as treatment. Treatment can also provide confidence, which makes socializing more relaxing.

How I Multiplied PT by 2000%

So….can you guess of how turned my few hours with the PT into 2000% more treatment?

I had her video record me with my phone while she told me how to do the exercises, with feedback just for me, like "how high do I raise my arm? This high."

Viola! I had a personalized training video. So, I had clearer instructions, with feedback included as voice-overs during therapy, and I could just watch it while doing the exercises.

I went in a few more times, for a total of about 4 or 5 hours of PT. And those videos let me turn that into over 100 hours of practice.


Sunday, January 10, 2016

Busting Recovery Myths

The following article is part one of two parts written by Clay Nichols, Co-founder of MoreSpeech and Bungalow Software which both provide Speech & Language Software. It was originally published in their free newsletter in August 2015. Clay has given me permission to re-post his article on our blog. 

Clay has spent the last 20 years helping patients, caregivers and speech pathologists with speech & language software. He's picked up a lot of tips and tricks along the way and he shares them in his free newsletter.

I encourage you to visit his site by clicking on this link: Speech & Language Therapy Software for stroke and brain-injury survivors 


What you need for speech & language recovery. And why you might not get it.
Stroke and TBI survivors talking to Clay:

"They told me the window for my recovery had closed." - Stroke Survivor

She said I had plateaued, and that I was as good as I was ever going to be," recalls Ms. Hervey, in a Wall Street Journal article (11/28/2006)
I’ve had lots of stroke and brain-injury survivors recount similar stories. And then their therapy ended. 

But, it’s a myth.
The origin of this myth is complicated. I don't think any speech therapist is saying "No patient can improve beyond X months". But that's what patients hear. Some survivors truly can't make progress, either because their deficit it too severe, or they are not motivated to do the work to improve. But that's on a case by case basis, not because there is some arbitrary "recovery window". 
Here’s what Dr. Jim Lynskey, PT, Ph.D has to say in Stroke Smart magazine:

"In truth, study after study shows that the so-called 'window of recovery' does not exist. Although the time shortly after a stroke occurs is important, most stroke survivors see the effects of recovery for the rest of their lives. Continuing physical, speech, and occupational therapy for years after a stroke can still yield positive results." (emphasis added)

The National Institutes of Neurological Disorders and Stroke (part of the NIH) agrees:

“For some stroke survivors, rehabilitation will be an ongoing process to maintain and refine skills and could involve working with specialists for months or years after the stroke."

Brain-rewiring, called Brain Plasticity, continues into Adulthood.

Scientists have discovered that the ability of the Brain to “rewire” itself doesn’t end in childhood, as was once believed.

“Today we recognize that the brain continues to reorganize itself by forming new neural connections throughout life. This phenomenon, called neuroplasticity, allows the neurons in the brain to compensate for injury and adjust their activity in response to new situations or changes in their environment.” writes Stephanie Liou at Stanford University.

Insurance Catch-22

Many get less therapy than insurance will provide. What you can do to get more.

We know the brain can continue to recover, even years later. So why do I hear from caregivers that they are being told the patient plateaued and (most importantly) insurance has not pre-authorized a follow-up visit to assess that expected readiness for more therapy? 

If the expectation from the insurance company is: You need to go home and practice until you’re ready for more therapy. Shouldn’t the insurance company pre-authorize the follow-up to confirm their assumption?

Yet, no caregiver I’ve ever spoken to has had that follow-up prescheduled. I don't think this is anything nefarious. It's just a flaw in the system. This may explain why therapy more often ends due to lack or progress rather than exhausting benefits. The data from speech therapists confirms that therapy ends 400% more often due to lack of progress than lack of benefits. Insurance is prepared to provide more benefits if you can make more progress.

The root cause of this seems to be the policy of many insurance companies that they will pay for additional therapy only when the current therapy produces results. That seems like quite a reasonable policy aimed at putting resources where they will do the most good. That’s certainly not the effect it has.

Patients need 2 to 8.8 hours of therapy per week

A review of research studies indicates that treatment of 8.8 hours 
of week is effective. Conversely, 2 hours per week is not effective.

Click this link to see: Code, C, Petheram, B 2011.
Most caregivers and patients I speak with tell me insurance is providing 3 or fewer sessions and most sessions are 45 minutes. Do the math. That's maybe 2.25 hours a week.

In a peer-reviewed medical journal article: Code & Petheram report:

“Average hours of treatment for aphasic people in the developed world ranges between 1–5 hours per week, with a great deal of variability, although recent research suggests that intense
treatment of 9 hours per week over a relatively short period is needed in order to be effective. It is concluded that there is a signi´Čücant gap between what the research suggests is the appropriate amount of treatment and actual provision throughout the English-speaking world. (Code and Petheram, 2011)." (emphasis added)

The same article reported a study that showed two hours was not enough weekly treatment to be effective. These are statistical averages and every patient is different. Some may need less or more than the average. Ask your therapist how many hours of practice you need.

Speech Therapy May Not Be Appropriate

Just as there is not rule that says recovery stops after X months or years, there is no guarantee that a patient will make progress. Some patients don't have a good "starting point" for therapy. Perhaps
they have no language whatsoever and have not made progress after 20 or 30 hours of speech therapy. Or patients may prefer to spend their time on something other than speech therapy. I tell
caregivers that stroke recovery like the old TV Detective Shoes: You have to show Motive and Opportunity. If the patient is motivated then the caregiver can provdide the opportunity. Some
patients seem unmotivated but are actually just blocked by some obstacle (fear of failure, difficulty in getting to therapy, etc.). We can remove obstacles, but we cannot provide motivation.
I'll be discussion that in an upcoming article of these Rehab Resources.

Your speech therapist's hands are tied

Your therapist has no control over the insurance company's policies. They became therapists to help you, but their hands are tied. The insurance company decides what they will pay for. If they'll pay for only 10 sessions, your treatment ends in 10 sessions. You could pay out-of-pocket but therapists understand that most people can't afford that. If you pulled out your checkbook it would cost $100 to $400 per extra hour of therapy. FYI, I'll be covering some suggestions for much more affordable therapy in a future Rehab Resource. Also, if they suggest that you need more therapy than insurance will provide then patients are likely to expect the therapist to appeal to the insurance company, a faceless bureaucracy. And your therapist would have to do that on their own time. The insurance company certainly won't pay the therapist to advocate for more money from the insurance company.

Avoid the Plateau & get more therapy

If the patient gets the additional 6 or 7 hours of weekly practice the research shows is needed, then they could make enough progress to avoid the problematic plateau and avoid therapy ending prematurely. It's a double-win: you make more progress and get more therapy, increasing the odds of even more progress.

So, now we know:

Recovery is possible even years later (From Resource #1) If...
1. The patient can get enough therapy, but...

2. The Insurance Catch-22 means that patients often do not get enough therapy....

3. You just need to find a way to get more treatment.

So, if insurance won’t pay for additional therapy unless you make progress, but doesn’t provide enough therapy to make that progress, how can you get the extra 6 or 7 hours of weekly treatment to make the progress insurance is looking for? I'll cover that in the next issue.

My Solution... in an upcoming issue

I’ll tell you how I overcame the Insurance Catch-22.

I'll also tell you how you can use that same approach to improve your odds of getting all the insurance-provided therapy you deserve and likely increase the speed of your recovery, and your odds of getting all the insurance-provided therapy you deserve (and need!).
Blog editer note: I will post the "Solution" next week but, if you don't want to wait, go to Rehab Resources site and look for "How I got 100 extra hours of rehab" :
Clay Nichols

Co-founder of MoreSpeech and Bungalow Software which both provide Speech & Language Software

For over 20 years, Clay has helped patients, caregivers and speech pathologists with speech & language software. He shares the tips & tricks he's picked up along the way.

He is not a speech pathologist.

But he consults with the speech pathologists he works with. You should consult your speech therapist regarding any tips you read anywhere, including the Rehab Resources.

Monday, January 4, 2016

Stroke caregivers are survivors, too

By Monica Vest Wheeler
Retreat & Refresh Stroke Camp Volunteer Staff

A while back, I wrote a post entitled, "We're Survivors, NOT Victims," in hopes of ridding the word "victims" from the stroke world vocabulary. I haven't met a stroke "victim" yet in the 75 Stroke Camps I've attended as a volunteer. Every one of them has been a survivor in every sense.

I've also learned much about stroke caregivers. They are survivors, as well, as they've spent countless hours in worry and care over a loved one who has had a stroke. They heard every bad scenario and prognosis in the book, and yet, they never gave up the most unique of human emotions: hope. 

Stroke caregivers run on some invisible adrenaline that can't be mass produced or even replicated by the finest chemistry labs in the world. You can't manufacture love. 

I've met caregivers of all ages, from young children whose parents have endured a stroke … to adult children caring for parents … to spouses withstanding a dramatic evolution in their relationship … to retired parents suddenly taking on a caregiving role for their adult children … to siblings, nieces, nephews, cousins and dear friends stepping into the position of caregiving with little warning or preparation.

Just when you think you've heard or seen every imaginable situation, I meet new people and witness new memories in the making at every camp I have the privilege to attend. Even those folks I've known for several years continue to evolve in their caregiving role through time. I wanted to share just a small sampling of the beauty and perseverance of caregiving I observed through my camera lens in 2015.

And I can only imagine what I will see this year … what images will inspire and stay with me forever …