Saturday News

Contents of This Week Saturday News May 2nd, 2015:

• Definition: 2015 Neuro Film Festival

      A Film Festival is an organized, extended presentation of films in one or more cinemas or screening venues, usually in a single city or region. Increasingly, film festivals show some films outdoors. Films may be of recent date and, depending upon the festival's focus, can include international and domestic releases. A longer definition comes from Wikipedia.

• Video: 2015 Neuro Film Festival

    -- 2015 Neuro Film Festival - How it is done...
    -- "A Bleeding Brain: A True Story" by Andrew S. Bloom (#02 - Stroke)
    -- 2015 Neuro Film Entry Ataxia SCA8 (#07 - Ataxia)
    -- Extraordinary Life (#08 - Epileptic Seizure)
    -- Sallie Arbuckle's Neuro Film Festival Entry (#09 - Aphasia)
    -- My Story of Stroke (#10 - Brain Stem Stroke Syndrome)
    -- Friedreich's Ataxia Research (FARA) (#11 - Ataxia)
    -- Unique Jeff (#12 - Traumatic Brain Injury)
    -- Unique Melvin (#13 - Traumatic Brain Injury)
    -- Looks Like Laury Sounds Like Laury (#14 - Aphasia)
    -- Invisible War Wound for Soldiers & Silent Epidemic for Anyone (#15 -
        Traumatic Brain Injury)
    -- Neuro Film Festival entry - Hope after a TBI (#16 - Traumatic Brain
        Injury)
    -- The Hidden World of FND (#17 - Ataxia)
    -- Then and Now (#18 - Traumatic Brain Injury)
    -- A Family Effort (#19 - Ataxia)
    -- Focus and Be Patient in Part 1 - An entry in the Neuro Film Festival (#22 -
       Aphasia)
    -- Heather's Fight (#26 - Stroke)
    -- What I Have Does Not Define Who I Am (#32 - Stroke)
    -- From Underneath the Rubble (#33 - Traumatic Brain Injury)
    -- Dan Oosterhous - Always Moving Forward (#37 - Stroke)
    -- Tabitha's Story (#41 - Stroke)
    -- 40 Months of Stroke Recovery (#42 - Stroke)
    -- Striving Through Sarah (#43 - Epileptic Seizure)
    -- Mallory's Hope (#44 - Epileptic Seizure)
    -- The Curse, Bhutan Epilepsy Project (#48 - Epileptic Seizure)
    -- Neuro Film Festival (#51 - Stroke)
    -- 4 Paws for Oliver (#53 - Epileptic Seizure)
    -- Chloe's Story (5 Minute Version) (#54 - Traumatic Brain Injury)
    -- Luke's TBI (#56 - Traumatic Brain Injury)
    -- Living with Epilepsy: Dan Dougherty (#57 - Epileptic Seizure)
    -- You Can Survive (#58 - Stroke)
    -- E-Action® Leader - Ann (#61 - Epileptic Seizure)
    -- Thriving Through TBI: The Charlene Fontaine Story (#65 - Traumatic
        Brain Injury)

• Headline Blog: 2015 Neuro Film Festival
• Social Media
• Music Magic?
• Coming Soon: "After Words," A Film about Aphasia
• In the Limelight, Part 2
• Stroke Recovery Documentary – Wanna Help Crowd Fund It?

• Eclectic Stuff: Many articles from many Guest Bloggers about Stroke
• 50 Shades of Stroke – Change
• A Physiatrist Has My Back
• Don't Confuse 'Game of Thrones' Character With Reality
• The AFO and Toes,         aka There's Nothing Cute about Curly Piggies
• Tricky Brain
• John Nash Interview-Commentary
• Tweetchat on Aphasia Recovery
• "I’ll Just Move In With You!" Speech And Language Stimulation Aphasia/Children
• I Miss My Old Self (Too)

• Weekly Columnists:
• Musing: NDT-bobath Method in Post-stroke Rehabilitation in Adults Aged 42–55 Years – Preliminary Findings
• Sunday Stroke Survival: The 2015 Neuro Film Festival
• Caregiver: Stuff
• Jackie The Jester: Financial Planning
• TED Talks - Neil Burgess: How Your Brain Tells You Where You Are
• Rick Mercer Report: Visiting the The Royal Canadian Mint
• Laid-Back Administration: No Posts This Week

• Daily Comics: For Better Or For Worse, Dilbert, Mayes, Doonesbury

• Future Topics in SSTattler:

Saturday News	Future Topic
May/09/2015	Treadmill Desk
May/16/2015	Receptive Aphasia (or Wernicke or Fluent...)
May/23/2015	Falls in Older Adults in Stroke!
May/30/2015	Sticky Keys & Keyboard Shortcut

Definition: Film Festival

Film Festival
      From Wikipedia, the free encyclopedia

A film festival is an organised, extended presentation of films in one or more cinemas or screening venues, usually in a single city or region. Increasingly, film festivals show some films outdoors. Films may be of recent date and, depending upon the festival's focus, can include international and domestic releases. Some festivals focus on a specific film-maker or genre (e.g., film noir) or subject matter (e.g., horror film festivals). A number of film festivals specialise in short films of a defined maximum length. Film festivals are typically annual events.

The most well-known film festivals are the Venice Film Festival, the Cannes Film Festival and the Berlin International Film Festival, the latter being the largest film festival worldwide, based on attendance. Venice's festival is the oldest major festival, and the longest continually running one. A 2013 study found 3,000 active films festivals worldwide—active defined as having held an event in the previous 24 months.

History

Video: 2015 Neuro Film Festival

We will have the topic of "Aphasia , ..., Stroke, Traumatic Brain Injury",  a sub-set of the 2015 Neuro Film Festival. If you want to see the all the movies look at YouTube - 2015 Neuro Film Festival Entries.

We will use the YouTube Neuro Film index #nn with corresponding Wikipedia:

• (#nn - Aphasia) 
• (#nn - Ataxia) 
• (#nn - Brain Stem Stroke Syndrome)
• (#nn - CADASIL Syndrome)
• (#nn - Central Pain Syndrome)
• (#nn - Epileptic Seizure) 
• (#nn - Moyamoya Disease) 
• (#nn - Stroke)
• (#nn - Traumatic Brain Injury) 

2015 Neuro Film Festival - How it is done...

Published on Sep 22, 2014

Submit your video now to the 2015 Neuro Film Festival! Video submission deadline is February 25, 2015. The Neuro Film Festival is a contest by the American Academy of Neurology and the American Brain Foundation to raise awareness through video about brain diseases and the need to support research into preventions, treatments, and cures. Learn more at NeuroFilmFestival.com.

Standard YouTube License @ neurofilmfest

Headline Blog: 2015 Neuro Film Festival

Definition: Blog (noun). Add new material to or regularly update to a blog. (Origin 1990s: blog shortening of weblog)

Social Media

Amy Shissler
My Cerebellar Stroke Recovery

August 19, 2014

The internet was created for the sole purpose of creating and sharing cat videos.  That’s it.  The why Al Gore invented the internet.  It’s very strange that Al Gore has been mentioned on my blog 2 days in a row.  Ummm, WTH?  But some other people have figured out some useful things to do with the information superhighway, like e-mail and Facebook and stuff.  You can also get some really good information on the internet, and some not so good information.  I recently deleted my Facebook page because it was making me crazier than I already am.  Seeing other peoples’ lives and obsessing about comments and ‘likes.’  Bah, I’m quite obviously not ready for that yet.  But don’t let social media affect your feelings, it’s not real.  I was starting to let it affect my feelings and that’s why I had to delete it.  If you can handle it, just use it for staying in touch with people, I can’t handle that yet.

SSTattler: More images of a beautiful cat in the original

Social Media in My Cerebellar Stroke Recovery.

See the original article:

Social Media

in

My Cerebellar Stroke Recovery

Music Magic?

Steven H. Cornelius
Music and Stroke

Posted on April 13, 2012

A couple of days ago, two different colleagues sent me a video link showing music’s effect on “Henry,” a mostly disfunctional elderly gentleman residing in a New York City nursing home [http://www.youtube.com/watch?v=fyZQf0p73QM]. Henry’s response to music is remarkable. When the music plays he is mentally alert and motorically active. Clearly, for Henry, this music is activating many cognitive connections.

All this is very interesting, maybe even wonderful, but I need more details. First of all, I want to know about the long-term effects of Henry’s continued exposure to music. Does his newfound alertness last a significant amount of time after the music has stopped?

Dr. Oliver Sacks states, “The effect of this doesn’t stop.” But there is little evidence of a lasting effect in the scene before Henry gets the earphones. Surely what we see is was not the first time Henry plugged in.

Coming Soon: “After Words," A Film about Aphasia

Grace Carpenter
My Happy Stroke

Wednesday, January 30, 2013

If you're reading my blog, you probably know what aphasia is, and how devastating it can be. But so many people have never heard the word. Raising awareness of aphasia--what it is, and how it can radically change a person's life--is important. It will help more people to get the support they need to lead a productive life.

So I'm really happy that After Words, a film about living with aphasia, is airing on many PBS stations, including WGBH in Boston. It will air in Boston on February 3 (Super Bowl Sunday) at 3pm. If  your local PBS station isn't on the schedule that the National Aphasia Association has published  here, ask your station to air it.

Please watch it, talk about it with friends, and use the word "aphasia." Talk about how Gabby Giffords has it. Or how common it is: more than 1 million Americans are estimated to have it, and countless family members are affected, too.

In addition to the PBS showings, there are two special screenings in Boston (March 3) and New York (April 10). The screenings include conversations with cast members, the directors, producer, and (in New York only), Oliver Sacks.

In the Limelight, Part 2

Pamela Hsieh
Rehab Revolution

15 September 2010

After my interview, they struck down the set and we moved to another place in the same building, I think, to lunch together before my neurosurgeon, Dr. Yamini, was due for photographs with me (unplanned ones, but the marketing rep was certainly quick to seize the opportunity!) and filming.

The catering was rather tasty, and as everyone ate, I got to further expound on stuff I hadn’t been asked about during interview to sate other crew workers’ curiosity. And tangentially, I learned a bit more about the film production process.

Dr. Yamini was brought in shortly after lunch. I was invited out into a more picturesque part of the bridgelike hallway and photographed very, very close to my doctor. (I had never seen him this up close before, but I think for him this was among the least invasive ways he’s viewed me, as this is the man who’s literally rearranged the inside of my head before.)

It might be worth mentioning that this was also how we were reintroduced. I hadn’t seen him in ages, for natural reasons like no longer needing follow-up appointments, living away at school or being abroad, and also because I never seem to be able to get ahold of him whenever I try to visit randomly. I imagine his workday being ever so slightly more demanding than my own (I spent most of my day today in my kitchen). Ha!

Stroke Recovery Documentary – Wanna Help Crowd Fund It?

Kate Allatt
Stroke Recovery Tips

September 17, 2014

We are looking to supplement the grant we’ve been awarded with crowdfunding, if you fancy getting involved?

• Get involved why not help Crowd Fund the Georgia’s documentary film?

This is not just a documentary film about the world hearing the other side of the ‘LockedIn Unlocked’ stroke recovery story.

My story will join other remarkable stories where individuals haven’t ended up like the poor chap in the award winning film – The Diving Bell & Butterfly. Yes, sadly some individuals pretty much remain in a desperate state similar to his, but others simply don’t. My charity offers ‘no promises, just possibilities’

Indeed, this will hopefully raise awareness of some of the myths surrounding potential to improve after having suffered a brainstem stroke with or without locked in syndrome.

Quite a lot of people recover significantly and far more than the often very premature health professionals would formally suggest especially in the early stages of the illness.

I hope we kick ass with awareness, attitudes & treatment, but also explore the ways we can optimise the well-being of those who don’t enjoy significant improvement gains.

I hope Georgia’s film will give people, like I once was, an important VOICE!

See the original article:

Stroke Recovery Documentary
– Wanna Help Crowd Fund It?

in

Stroke Recovery Tips

Eclectic Stuff

Definition: Eclectic(noun) a person who derives ideas, style, or taste from a broad and diverse range of sources.

50 Shades of Stroke – Change

Sas Freeman

April 27, 2015

change

Those of you who have had a stroke are no strangers to the fluctuations regarding good days and not so good days. In this case I’m not talking about emotionally but physically. How, following a good day the next day you can wake up feeling really quite unwell, yet reflecting on the previous day there isn’t anything that immediately jumps out at you as being the direct cause for this change.

You mull things over, being really honest with yourself, trying to get to the route cause so as to be able to eliminate days such as these, and still nothing comes to mind. This is one of the many complexities and frustrations of stroke, that despite your determination and will to do all the right things to improve your situation, some days it is simply totally out of our control and impossible to fathom out as to why.

If you are like me, even after several years you find this difficult to accept. I still wish to achieve things each day, however small they may be. When I go to bed at night, I want to be able to reflect and think I achieved something, whether it was a little more physio, some painting, make something in the slow cooker.

A Physiatrist Has My Back

Rebecca Dutton
Home After a Stroke

April 26, 2015

When I was an OT I did not realize stroke survivors deal with challenges for years after treatment ends.  Eleven years after my stroke I am grateful I still have access to a physiatrist (doctor who specializes in rehabilitation medicine).  (1) Dr. Terry, a physiatrist, has a deep understanding of my situation.  He listened attentively when I expressed concern about the increasing tightness in my hemiplegic (paralyzed) hand.  Instead of ignoring my concern he talked about when muscle tightness helps or interferes with function.  I did not have to explain why I wanted to go back to OT.  A physiatrist is one of the reasons I do not go downhill when a new challenge appears.

Here are five more reasons to see a physiatrist.  (2)  Regular in-patient meetings mean the staff have to think clearly about my case in order to present it to the physiatrist and to each other. (3) Physiatrists keep up with research on rehab.  It was reassuring to hear Dr. Terry talk about EMG guided Botox shots that can target a single muscle.  Without reading current rehab research, neurologists feel free to pronounce conclusions about your rehab potential (e.g. "you will never walk again.")  (4)  Physiatrists know how hard clients work to become independent.  Dr. Terry is one of the few doctors who does not try to undress me like I am a child.  After he asked to see my hemiplegic foot he hesitated for a moment.  This gave me a chance to take off my leg brace.  (5)  He asks about my personal life because he sees me as more than a paralyzed arm and leg. (6)  He knows the buzz words insurance company adjustors are looking for.  He has never given my insurance company an excuse to deny coverage for services he has ordered.

Don't Confuse 'Game of Thrones' Character With Reality

Jeff Porter
Stroke of Faith

Tuesday, April 21, 2015

I'm not a fan of the HBO series "Game of Thrones," but apparently, I'm in a distinct minority.

So I was surprised when I started reading that one character supposedly has aphasia, a language condition that affected me during and after my stroke, and many, many others. Maybe even you.

Now, aphasia does NOT diminish one's intelligent. You've got all those thoughts in there, and aphasia is often a barrier to get those thoughts out through speech.

So I did a little research, and instead of this being an instance to educate the public about aphasia, the talk that the character Hodor has aphasia - which is incorrect - has bolstered the mistaken impression that aphasia effects intelligence. Again, it does not.

The AFO and Toes, aka There's Nothing Cute about Curly Piggies

Joyce Hoffman
The Tales of a Stroke Patient

Apr 21, 2015

I was in the 7th grade of Junior High School (they call it Middle School now), when I first learned from Lydie Miller during a pajama party that I had funny-looking feet--teeny, tiny toes like my rather portly father and sharp bunions like my mother.

Tweens are more sophisticated today, with conversations about getting higher on E, listening to the "good kind" of rap, or deleting unwanted photos on Instagram. But 54 years ago, it was feet. It wasn't the first time that I said, "I have rotten genes."

Anyway, Lydie was right. After that bit about my feet, I never exposed my toes to strangers again. I always wore shoes, never sandals, to the pool, and covered my feet with a towel. On the beach, I dug my toes into the hot sand. I had my bunions straightened, but there was nothing I could do for the exceptionally short toes. That realization changed my being. I always stare at feet to evaluate them: better or uglier than mine. It's a slam dunk. "Better" always wins.

After the stroke, the only news that made me happy was I could only wear sneakers. My toes' secrets were safe forever.

Tricky Brain

Tim Seefeldt
Brain Food Cafe for the Mind

Posted April 23, 2015

A brain under extreme pressure is a tricky thing.

In my experience, it does one of three things.

• It shuts down completely, leaving the man or woman it serves unable to function or at the very least, it badly cripples how they function, or;
• The screws tighten, increasing pressure, pumping up stress and making it run rougher than the ’74 Dodge Duster that I drove in grade 11 , or;
• It makes a Rocky Balboa type 15th round comeback.

But without a Hollywood scriptwriter pulling the strings, how do you end up like Rocky, bloodied, bruised but victorious?

I’ve thought a lot about the role stress may have played on my 2010 stroke. I have no family history of stroke and had no known risk factors. Yet, my brain didn’t seem to care about this when it started to fry early on the morning of March 10 five years ago.  I’ve come to the conclusion that I’m a stress junkie. I feel like I have the most success when I’m under the most personal pressure. I even think I kinda like the buzz I get from stress. And I don’t think that’s a good thing.

John Nash Interview-Commentary

Bill Yates
Brain Posts

Posted 12th December 2009

Hat tip to Mind Hacks for pointing out a recent two part interview with Professor John Nash. Dr. Nash is the subject of the film a Beautiful Mind that reached a significant level of popular and critical acclaim. The interview by Riz Khan is part of the Al Jezeera productions.

Here are some of my comments on the interview:

Dr. Nash is 81 years old but feels he can still contribute to the academic community. He conceives of his working age as 56. This is 81 minus 25 years of not being able to work due to mental illness.

He has been diagnosed with schizophrenia. He had an active paranoid delusional phase but now reports not taking any psychotropic medication. This is not uncommon clinically, as early hallucinations and delusions may give way to what are more clinically known as negative symptoms.

Dr. Nash has some difficulty in answering many questions. He does not have much insight into emotional developmental issues. He is unable to explain much about his relationship to his father or mother. The interview shows some poverty of content. Responses are limited and he does little to extend answers and initiate new areas for discussion.

Tweetchat on Aphasia Recovery

Sharon D. Anderson
Stroke Survivors Tattler

April 27 / 2015

Often when I reveal that my husband John had a stroke in 1997, the first question people ask is: “Has he recovered?” That is a difficult question to answer.  The short answer is: “Yes, he has made a remarkable recovery.” The next question is often, “Is he back at work?”  As all of the impairments from stroke have not miraculously disappeared, the answer is no.  John still has aphasia.   So how do we talk about an incomplete recovery from aphasia?

When John first had the stroke, the therapist in acute care was bound and determined that I needed to understand that John would “never recover”.  Somewhere in my files I still have the Xeroxed booklet that she gave me with the words, “this is no longer in print, but it is the best explanation of aphasia that I have found.”  As I read it, I thought, ‘there is a reason why this booklet is out of print’—it was very dour.  The bottom line: don’t expect much recovery.   I still thought therapy would be useful.  Then when I started to ask about John’s work insurance coverage for therapy, I was surprised to find that physiotherapy coverage was unlimited as long as there was progress, but insurance would pay only $500 towards speech therapy.  I asked why there was such a difference.  The answer was that people with aphasia rarely return to work, because they didn’t recover from aphasia. I wondered whether this was a chicken and egg scenario; there was limited recovery because of lack of therapy or lack of therapy because of limited recovery.

"I’ll Just Move In With You!" Speech And Language Stimulation Aphasia/Children

Mark A. Ittleman
Teaching of Talking

April 26th / 2015

The Meeting

A number of years ago, I was approached by a group of people who wanted me to work with their loved ones; all of which had strokes, aphasia, no speaking.

The Question

These were people who wanted to know what could be developed if “price was no object” for their loved ones.  I was in shock, and thought for a moment.

“You can think about it and get back to us.” they replied.  Before I knew it, they were standing up and walking towards the door….

The Answer

“Excuse me, I have thought about it, and have a very simple solution to this.”  I could not believe the words escaped over my tongue and palate, before I even consciously even thought about it.

I Miss My Old Self (Too)

Peter G. Levine
Stronger After Stroke

Sunday, April 26, 2015

I feel grrrreat!

One of the laments that I hear a lot from survivors is "I miss my old self." But please, survivors, keep in mind – we all miss our old self.

We often tend to look at the past fondly simply because we were young. But we're all getting older, slower, achier – and- as if tipping our hand of our aging interior – our looks take a hit.

I am as indestructible as I feel!

So let's say a stroke survivor had their stroke 10 years ago – when they were 40. Now they're 50, and they "Miss their old self." It is true that stroke ages you immediately. The estimate I read recently is that the stroke itself ages you at least five years. That is, your brain is five years older, your body is five years older, etc. – all within the first 24 hours of stroke. So when survivor say "I miss my old self," I can dig it.

Doing well!

I haven't had a stroke, but I can tell you, 50 ain't 40. That is, you wouldn't be how you remembered irrespective of the stroke. So when you compare, compare to the projection of yourself given the added age.

So, like the rest of us, as you work against the deficits of the stroke you are also working against father time.

Crap I didn't even
know I had aches.

I do know some stroke survivors who are in some of the best shape of their life after their stroke because this was really the first time in their life that they look after themselves.

See the original article:

I Miss My Old Self (Too)

in

Stronger After Stroke

Weekly Columnists

Definition: Columnist |ˈkäləmnist| (noun). A blogger or a journalist contributing regularly to a blog or newspaper.