Sunday, April 28, 2013

Music Therapy Part Two - Drum Circles


by Chuck Jones

For May and June I am going to try to work in some blog articles on drum circles and some more on music therapy.  We have been doing drum circles at our camp retreats since we started, and at first, I looked at them as thirty and as many as sixty people with drums or other sound producing instruments, sitting in a circle led by our music therapist to help break the ice and as a vehicle to introduce everyone. Later, to my amazement, I discovered that drum circles, and other types of music, have real therapeutic value and that Music Therapy is a board certified profession.   

Another thing that I discovered is that there are many different kinds of drum circles and they are used for many different reasons. I'll cover the ones that I have found through research on the internet and present them as accurately as possible. There is some controversy regarding the structure and intentions of some drum circles just as there seems to be in about every aspect of life, so please forgive me if I have offended you or your version of a drum circle and know that I will work with you, if you wish, to present your version as accurately as you see it. The majority of this particular article comes from Wikipedia.  As a computer user I'm sure you've heard of Wikipedia. I like using Wikipedia because their definitions are free of copyright issues, mostly accurate, and I can cut and paste them into these articles easily. You'll see my added comments as bold italics like this. Here is Wiki's definition of a drum circle.        

Drum Circle
 "A drum circle is any group of people playing (usually) hand-drums and percussion in a circle. They are distinct from a drumming group or troupe in that the drum circle is an end in itself rather than preparation for a performance. They can range in size from a handful of players to circles with thousands of participants. 

"In 1991, during testimony before the United States Senate Special Committee on Aging, Grateful Dead drummer Mickey Hart stated:

'Typically, people gather to drum in drum "circles" with others from the surrounding community. The drum circle offers equality because there is no head or tail. It includes people of all ages. The main objective is to share rhythm and get in tune with each other and themselves. To form a group consciousness. To entrain and resonate. By entraining, I mean that a new voice, a collective voice, emerges from the group as they drum together.'"

I had to look up the word entrain to see what Mickey Hart was trying to say and the best I could figure out was he meant join.  

Types of Group Drumming and Drum Circles
According to the Wikipedia definition, the term "Drum Circle" originated in the United States during the late 1960s and early 1970s for any group of people, particularly counterculture groups, who gather (informally) to play music together. The terms "drum jam" or "jam session" could be substituted. Settings include beaches, parks, concert parking lots, festivals, and retreats. Do not confuse this definition with that of the Drum Ceremony, such as those done by Native Americans,  which we all know, originated way before 1960. The determining criteria for a drum circle is that the music is improvised and co-created by the participants. Drum circles may or may not be open to the public, but the music is always a group expression, not constrained by genre, instrumentation, or directed by one person or sub-group.

In Western countries, drum circles have developed into two main types:

Community - free-form drumming, often open to the public and entirely improvised in-the-moment.

Facilitated or Conducted - group drumming that is musically directed by a specific person, often called a facilitator. It is this one that more closely resembles what we do at our camps. I am planning to publish an article on this blog in the near future, written by one of our Music Therapists, that will address our drum circles as well as other forms of music therapy.   

All forms of drum circles are used in a variety of settings and applications including; team building, recreational music making, wellness, education, celebrations, spirituality, personal growth, etc.

The Community Drum Circle
Community drum circles are informal gatherings of people who meet for the purpose of playing drums together. They often take place in public settings such as parks or at the beach, but may also be organized via a community center or similar body. 

Instrumentation centers around drums and percussion, but may include other instruments, such as flutes, didgeridoos, and other non-percussion instruments. Practically anything that can be banged on to make noise can be used as a percussion instrument such as cans, buckets, pipes, etc. One need not possess or purchase a drum to participate. Community drum circles differ from facilitated or conducted drum circles in that the music is entirely improvised through a process of group interaction. 

There may be a facilitator or moderator who acts to shape the experience through discrete actions, such as helping to maintain a steady beat, helping those who need it, and generally managing the environment to see that everyone is able to participate fully. The participants make up the music as they go along, using their listening and playing skills to make musical connections and express themselves in any and all ways that feel right. Participation is voluntary and often includes drumming, singing or chanting, dancing, and listening. 

Community drum circles often attract both regular and drop-in participants of all ages and can take place just about anywhere. Community drum circles are the original and most popular form of improvised community drumming.

The Facilitated or Conducted Drum Circle
A "facilitated" drum circle is a form of group drumming in which a person seeks to focus the intent and improve the quality and effect of the activity, making it easier for people to effectively participate by taking a more directive approach. The facilitator (leader) takes responsibility for the physical space, arranging chairs and instruments to optimise communication and connection in the group. He or she may provide a range of instruments to create a full and balanced percussion orchestra. In this way, the experience can be thought of as a "standardized drumming circle," as opposed to the more free-flowing and open community drum circle. 

The facilitator is constantly monitoring the music in the group, and generally being encouraging and accepting of participant ideas. In this way, the facilitator takes on a role similar to that of a music teacher or drumming instructor whose goal it is to empower the participants and encourage them to share their ideas. At the beginning the facilitator directs the music through verbal and non-verbal cuing. Cues, which often mirror the movements of an orchestral conductor, are directed at the participants, who respond to the leader. This creates a leader/follower dynamic between the facilitator and participants. Actions such as rolling (rumbling), starting, stopping, raising/lowering the volume, accents, and when to play/not play are often given by the facilitator. 

Conducting is not normally part of a traditional (community) drum circle, and therefore makes this type of circle a unique experience and very different from a community circle. Facilitators with training and experience in other areas and professions, such as music education, music therapy, and corporate training, may use a range of tools and approaches that enable them to work with diverse populations. These types of experiences are more accurately referred to as 'drumming programs,' rather than drum circles, in the traditional sense. 

Contrary to that last statement, at our camp retreats, we do refer to the group as a drum circle and we do use only board certified music therapists as facilitators. 

Other forms of drumming that are related to drum circles include
- "Guided Interactive Drumming" - highly structured 
    drumming-based programs that are led by an individual or group
    to reach non-musical goals.
- "Drum Classes" - education-based drumming for the purposes of
    building musical skills and knowledge.
- "Drum Ensembles" - performance-oriented drumming groups who
    practice and perform music on drums, often for dance.
- "Clinical Improvisation" - a drumming group within a Music 
    Therapy session, led by a certified Music Therapist. (I
    highlighted this one because it also refers to what we do at
    our camps.)

Group Drumming with a Spiritual focus
Neotribalism
Is an inclusive way of life that is focused on creating a positive enhancement of self of identity while enforcing a no harm to the collective group attitude. Neotribalism belief system is evident in the music of Neotribalism; the postmodern drum circle where the only leader is the preservation of the groove or music consciousness. This development of musical consciousness takes the participation of the individual to create a collective more powerful and beautiful display of sight and sound. "In beat, life begins and it is only the maintenance and sacred keeping of the beat that life will endure".

Neopaganism
Neopagans have created another type of drum circle. At Neopagan festivals, people gather around a large bonfire, the drummers generally sitting on one side to encourage better listening. The musicians sit together and play while dancers dance and circle around the fire. Often, those present will stay and play throughout the night until dawn, treating the evening as a magical (or alchemical) working. Sound is not limited to drumming alone; there is also chanting, singing, poetry, and spoken word pieces. This type of drum circle is not usually facilitated.

Shamanic Drumming Circles
This type of circle tends to center around Native American Cultural Drums and rattles but is primarily focusing on the spiritual rather than the musical aspects of the culture. They are a facilitated ceremony but the leader is facilitating a shamanic journey type process rather than a musical event. Shamanic drumming is generally simple and repetitive, often considered as a form of prayer or method of trance induction, rather than as music or entertainment. During a shamanic trance or shamanic journey, the shaman uses the steady beat of the drum as a "lifeline" to find the way back to the world of ordinary consciousness. Note that in these cultures, the term "Drum Circle" would certainly not be used. Rather, the terms 'drumming ceremony" or "ceremonial drumming" would be more accurate. 

Medicine Wheel Drumming and Prayer Ceremony
This description is really not of a drum circle either, in the sense that the term is commonly used. It is a drumming ceremony that takes place in a circle, but very different in content and form than a drum circle (improvised community drumming jam). This type should probably be listed under shamanic or spiritual drumming and not under drum circles.

Practiced by various groups, and outlined step by step in the book, "Finding Sanctuary in Nature: Simple Ceremonies in the Native American Tradition for Healing Yourself and Others," by Jim PathFinder Ewing (Findhorn Press, Scotland, 2007), (page 147), "the medicine wheel drum circle prayer ceremony" recognizes the four directions—east, south, west, north—as spiritual Powers that can help balance and heal. The ceremony has four rounds, with drumming by all participants at the instruction of the leader allowing the energy of each direction in each round to come into the circle to facilitate prayers and healing. It has been described as "like a sweat lodge without the sweat" (page 148, Finding Sanctuary). Ewing held these ceremonies each month for seven years, as outlined in the book, in addition to shamanic drum circles, and at various sites from coast to coast in the United States since the late 1990s. 

Groups based on his example and the instructions outlined in the book have resulted in other groups forming worldwide. 

I have experienced a version of this one, first hand, at a local Native American Christian church. Their drum ceremony is very spiritual and uplifting. I was impressed. This one differs from the Shamanic one in that trance inducing is not part of the ceremony, instead, the drum is used to offer praise and prayer to God the Great Spirit and Creator.   

The Growth of Drum Circles
Commercial drum circle groups and companies exist in most countries to serve various markets. There is also a growing body of people working in places such as hospitals, prisons, and hospices using drumming as a form of recreational and supportive music making. Music therapists often use various forms of group drumming (including improvised drumming) in their work to reach therapeutic goals and objectives.
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Monday, April 22, 2013

Music Therapy Part One - Recovering Memory and Speech of Stroke Survivors

by Chuck Jones

 As you will see, this article has many interesting points and touches on results that we have actually seen, first hand, with our stroke survivor campers. I need to point out, though, that in order to get the results described in this research article, a board-certified music therapist needs to be involved. We have board certified music therapists who work with us at our camps. They are producing these very results with stroke survivors. 

For a music experience to be called music therapy, it has to include a board certified music therapist, a client, and music experienced within a therapeutic relationship. Music is used by other types of therapists, but they don't call it music therapy. Music can also be used by caregivers in many ways to help stimulate the healing of the brain, and the best results would be achieved by working with a board certified music therapist who can prescribe music for a therapeutic outcome. 

You can contact the American Music Therapy Association to find a music therapist near you or go to their website at:  musictherapy.org

Here is the American Music Therapy Association's definition of Music Therapy: "Music Therapy is the clinical and evidence-based use of music interventions to accomplish individualized goals within a therapeutic relationship by a credentialed professional who has completed an approved music therapy program." 
The following article originated on a blog hosted by an online site called X8-Drums (www.x8-drums.com) and posted by their blog moderator Kristen.
  
Music therapy is used widely for rehabilitation of patients that have had a severe stroke. A study out of Finland reported that incorporating music into standard stroke rehabilitation treatments helps improve recovery of speech and memory. The music had a more significant impact on recovery than the use of audio books or no additional stimuli at all. The study also showed that the music lightened the spirits of patients as well.







After six months of therapy, the music listeners' verbal memory improved by 60% and focused attention improved by 17%, much higher than the results noted in audio book listeners or patients with nothing. Furthermore, the music listeners were happier and less confused than members of the other groups. The research was carried out on adults who had suffered an ischaemic middle cerebral artery stroke with no prior history of neurological disorder.

Strokes occur when blood is unable to reach the brain, killing brain tissues.

This can cause disability in movement and cognition, as well as death.

Medical treatment includes medication to thin the blood that will prevent further clotting, and restrictions on the patient's diet will help to improve cholesterol levels. The stroke even causes weakness, loss of coordination, and pain. The aftermath of the event includes memory loss, confusion, depression, difficulty speaking, paralysis, and sensory loss.

While listening to music, the brain boosts alertness, mood and attention due to stimulation of the dopaminergic mesocorticolimbic system, which moderates feelings of pleasure and memory, among other emotions.

By stimulating this system, you trigger the wires for other parts of the brain through a neurological crossing effect. Doctors believe that the combination of music and lyrics leads to this cross over effect, which helps to recover losses in other parts of the brain.

Many therapists already use music as a tool. Singing songs can boost speech recovery in stroke patients. By putting words to a familiar song melody, the patient has an easier time of forming words and phrases. Rhythm and clapping, also used by therapists, aid in the recovery of movement and muscle control.

After a stroke, it's important to begin music therapy early, during the acute post-stroke stage. During this period, the brain undergoes many changes that relate to movement, memory and speech that can be augmented by stimulation. The largest benefit of musical therapy is that it fits in well with every day life. Music is everywhere, so with proper guidance you can treat yourself or your loved ones outside of the hospital, maintaining ongoing recovery and a routine of incorporating healthy brain stimulation.

Music can be a worthwhile therapeutic addition to a stroke patient's care, and is cheap and easy to provide. Patients may also respond to live performance music or by playing on simple instruments themselves. Experiment with recorded music, live music and present the patient with an instrument like a small djembe or shaker.

When selecting the type of music, choose something that is familiar to the patient. Playing something that they recognize will improve results of the therapy and improve memory development. Interesting enough, this study of music therapy on stroke patients showed that songs by Kenny Rogers delivered the most significant response from the patients. However, you should allow the patient to choose the music him or herself, or use music that you know the patient likes, as the familiarity of the music is frequently the key to memory retention. Selecting the type of music that stimulates the brain to craft thoughts is the technique used in music therapy to recover speech and recollection.
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To view the original X8-Drum article go to:
http://www.x8drums.com/v/blog/2009/07/recovering-memory-and-speech-of-stroke.asp

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Sunday, April 14, 2013

Do you want to buy a Copier?

Chuck Hofvander is a stroke survivor and fellow camper. Here is one of many essays he wrote outlining his experiences. Some of those he has written deal with his life before his first stroke, some deal with life after. Chuck likes to write essays as therapy while recovering from his strokes. He has had two, his last one very recently after a bicycle accident.  This essay, although written after he had his first stroke, tells about a time before he had that stroke. 

Do you want to buy a Copier?
by Chuck Hofvander

What comes to your mind when someone says “I want a copy of…? “? What do they say next; Canon, HP, Toshiba? No Xerox! I worked for Xerox as a Document Expert; I had been the head of a document management area at CNA Insurance for two years, but I didn’t know anything about printing except I knew about printing was that it came out of a printer.

Our focus was insurance because of my illustrious career. Our mission was to consult on projects that ended in printing. I got the job after an interview in Rochester NY with Brian S and his staff of document experts; none of whom had any insurance experience except as it was required to buy a car.

After consulting on a printing project in Buffalo NY the VP announced that since his whole group had worked so hard as a reward he was going to take us all to Lake Placid. So early one morning me and a colleague flew from Chicago to Albany. In Albany we rented car, picked up a woman; I know what you’re thinking about the woman but she worked with us, and then traveled to Lake Placid; really it’s on Mirror Lake which is a stone's throw from Lake Placid if you're a very good stone-thrower". Just thought you’d like to know

There the VP had arranged a half hour meeting in the morning at the Inn and then unleashed us Xeriod’s on the un-suspecting populace of Lake Placid..

Our insurance group got together to plan our day and we agreed on our plan of attack. We’d drive to the Bob sled run and ski jumping site. Followed by a drive back to Lake Placid to go to the ice hockey arena, relax at the hotel, go to a party arranged by the VP and then finally to sleep. Little did we know there was a really amateur hockey in store for us.

We drove to the Bob Sled run and there three of us backed out using excuses such as "too tall" or "too fat" or "no change of underwear in case we peed our pants,"’ I was too tall to ride in the sled, thank God; and too scared. But a few brave souls were thrilled to ride. Among them was Mister K.

Mister K was born a natural-born leader of other men. He was the type of man that if you wanted something done he asked somebody else to do it. If you asked him a question and if he didn’t know the answer, Mister K would make one up. He was that type of man. He was my hero.

I looked forward to him being stuffed into a sled.

We non-riders went to a club and drank coffee and the others went to the top of the course. There the riders got their turn, started their run, and put their heads and limbs down. They were scared but not Mister K.  

Mister K was the last person in the sled, he stood straight up until the first turn then he realized he should be scared. His first instinct was to jump out of the sled, bad idea. Next he thought of dragging his feet behind the sled, worse idea. In the end he along with the riders sat, scared, crouching in fear until the end of the run.

When the riders came to join us in the coffee shop they were all shaken except Mister K he was petrified.

After Misters K’s recovery we went to the jump. Do you know how high  a ski jump is at the top of the jump, well I’ll tell you it’s 295 feet; just to compare the Great Pyramid of Gaza is 481 feet. We went to the top in a glass enclosed elevator. We like a bunch of frigid robots, got out of the elevator and went outside to face a howling wind and cold.

At the top the angle is very steep as calculated by the following:

Calculate the vertical height h from the starting gate to the bottom of the ramp. The skiers push off hard with their ski poles at the start. They typically have a speed of 2.0 m/s as they reach the gate. The skiers should have a speed of no more than 30.0 m/s when they reach the bottom of the ramp. You determine that for a 80.0 kg skier with good form, friction and air resistance will do total work of magnitude 4000 J on him during his run down the slope.

If you can’t understand that I’ll translate: its [freaking] high!

The others weren’t brave enough to face the frigid temperature and the gale-force wind but yours truly was. They went inside but I stood firm, I took off my shirt and dared the elements to defeat me! Elements one Chuck zero! (Come on, if you believe that I’ve got a copier you might be interested in).

After we thawed out we went back to Lake Placid and went to the hockey arena where in the 1980 Olympics a bunch of amateurs U.S. beat a pro level team from the Soviet Union. There nothing special happened except me crying like a baby. It brought back memories of my wife and I sitting in my parent’s living room watching the victory of the U.S. beat the Soviet Union. Fooled ya, we were at my parents place but I didn’t cry and we didn’t watch the game.

There was nothing unusual at the arena except the usual souvenirs and nothing special at the hotel. Then came the party.   

The party was boring, we sat around like muffins in a pan waiting to be put into the oven then Mister K appeared.  He was dressed in a white vest and pants and a black shirt; think John Travolta in Saturday Night Fever, and a hockey helmet.

He needed the hockey because Mister K had been putting up Christmas lights on the gutters of his home and fell off the ladder. His solution was to wear a hockey helmet to prevent further damage to his cranium, if that was possible.

When Mister K appeared the party came to life. He jumped onto the dance floor and, well he was not Travolta. He jumped, wiggled, drooled like a wild man on the dance floor! People were scared of him. The hotel management was about to have him put away when he collapsed and we took him back to his room. I went back to my room and went to sleep.  

There I dreamed that a beautiful blond woman came into my room, got undressed, climbed into my bed, crawled up next to me, began hugging me and said “Do you want to fool around.” Of course I said yes but then gorgeous blond said “Not before you do you’re chores, get to it!” It was then Brian walked into the room, saw me hugging the pillow and said “what do you think you are doing, I’ve arranged a hockey game with the VP of the financial group and it starts in 10 minutes”.   

Yikes what a nightmare! But it wasn’t a nightmare it was two o’clock in the morning, I’m hung over and tried. I got up, put on whatever clothes I thought would be good for a hockey game at 2:00 o’clock in the morning and joined other sleepy and drunk Xerox’ers. The hotel didn’t have an indoor rink so we went outside to Mirror Lake where it was -8 below zero.

Brian is in an amateur hockey league and knows what to do with a puck but none of us others did.  Brian tried to organize an offense and defense but we were hopeless. I couldn’t move backwards, others couldn’t get on skates, some couldn’t get moving once they had their skates on, some skated forward but couldn’t stop, and some just fell down!

But the other team was worse; they went outside, stood there observing and went back inside. So we played with ourselves for about a half hour, we had a lot of staying power. But eventually it was Brian who gave up just when we were getting the hang of this hockey thing.

In the morning I and Mister K left Lake Placid; he behaved.

This experience left me with some things I’ll never forget Lake Placid is beautiful but it’s on  Mirror Lake,  Ski jumping is hazardous to your health; Ski jumpers have to be crazy, I’m too tall for most of anything except basketball, I’ll cry at anything,  I can’t skate, I’m grateful that Mister K is my friend but you always have to be on the lookout for his drooling.


Good night Chet. Good night David. 

Please feel free to post any comments or questions by clicking on the red word Comment following this article. If you have any questions or comments about anything that you would like to share with us please feel free to do so on any of our articles. Don't worry about being off topic. Any question or comment is welcome on any of the articles' comments section.

Sunday, April 7, 2013

The Cost of a Stroke

by Marylee Nunley, Executive Director
Retreat & Refresh Stroke Camp

Anyone who has had life interrupted by a stroke likely knows that it comes with a price. Sometimes a very high “price”. There are many things in life that pose challenges for us. Among the top things on that list is when personal finances take a hit. Stroke is one of those things that arrives quite without warning, interrupting life as you’ve known it and causing a complete re-frame of “normal”. Of course, care for the stroke survivor is primary at onset, but it doesn’t take long before the financial challenges start to appear. This is especially true if the stroke occurs while the patient is still working. Some employers have short and long term disability insurance and often folks have taken out their own policies, but the vast majority of people suffering a stroke while still working will take an enormous financial hit.




A recent article from Stroke Smart Magazine provides some good information about where the money goes with relationship to stroke. It can be mind boggling to see the actual cost incurred at a time you are already vulnerable. To see the entire article click on the pie chart.






Need a Budget Worksheet?

I have included a link below called "Family Budget Worksheet" that will take you to an online site that you can use to set up a personal budget to help you see how your finances can be managed.  Maybe you already have a budget set up, but if not, then you might find this tool useful. It is an easy-to-use printable budget worksheet. This site also has several other different worksheets you can start out with, or you can even create your own. All of these worksheets are fully customizable. The "Family Budget Worksheet" that the link below will take you to is ready for you to use right now. Click here to go to ->> Family Budget Worksheet
If you decide use the worksheet, make sure you "bookmark" it or make it a "favorite" in your browser so that you can easily return to it later. The site asks you to register for free so you might want to do that also so that you don't lose your work and have to re-enter everything.   

What About Government Financial Assistance? 

The Social Security Administration (SSA) has two programs that provide financial assistance for those who are unable to work.

The first is Supplemental Security Income (SSI), a federal assistance program to help seniors and the disabled who have little or no income on their own. This program is not funded by Social Security taxes but by general tax revenues.  The SSI program provides recipients with money for everyday needs such as clothing, food, and shelter. Follow this link to Social Security's SSI page ->>  Supplemental Security Income Home Page

The second program is called Social Security Disability Insurance (SSDI). SSDI is funded through payroll taxes and provides supplemental income to people who are physically disabled and their eligible family members. Because SSDI is funded by Social Security taxes, recipients must qualify by showing the government they’ve been working for a certain amount of time and have contributed to Social Security taxes over the years. Follow this link to Social Security's SSDI page ->> Qualify for SSDI Benefits

There are two books that we have found to be very helpful for those who are seeking this avenue for financial assistance. They are:


One is "Nolo’s Guide to Social Security Disability: Getting & Keeping Your Benefits" by David A. Morton III, M.D. This book may be found locally at your nearest book store or online. Call your local book store and ask if they have it in stock. For online searches, use the book title and you'll get several sites with offers ranging from $11 to $40 depending on if the media is paperback or e-Book. 
 
 
The other is "How To Get SSI and Social Security Disability: An insider’s Step by Step Guide" by Mike Davis. Again, do a search on the whole title and you'll get a list of site to order from. For this book, you can click on the image at the right and it will take you to Amazon.com where the book is listed at around $10.


Here’s hoping this article will be helpful to anyone dealing with the effects of stroke in the early stages. As time goes on and life settles down, you may want to consider the job of applying for long-term disability.


Sunday, March 31, 2013

Charlotte, North Carolina, AANN Conference

by Lauren Kramer
Retreat & Refresh Stroke Camp Coordinator  

Larry Schaer, Retreat & Refresh Stroke Camp's Associate Director, and I got the privilege of going to beautiful Charlotte, North Carolina for the AANN conference.  AANN stands for the American Association of Neuroscience Nurses.  Lucky Larry drove the entire way there, but I flew down because I had to conduct a Chime Strokers concert the day that he needed to leave with our supplies.  

If you haven't heard of the Chime Strokers before, be sure to check out our website - www.chimestrokers.org


You can also listen to some of our songs on  
YouTube: http://www.youtube.com/user/Strokecamp

Anyway, so Larry drove and I flew.  He timed picking me up from the airport on Saturday perfectly, and we headed off for downtown to the Charlotte Convention Center.

You might ask why we went to the conference - well, we wanted to talk with the conference attendees about our DVD and our camps. The DVD is called "You've Had a Stroke, Now What? Insights from Survivors and Caregivers."  It is designed for hospitals, stroke centers, rehab facilities, etc... to distribute to their patients at discharge.  The DVD is over three hours long, but is broken up into 15 different topics that you can select and watch at your leisure. Of course, if you want to have a movie marathon and watch the whole thing you can do that, too - just be sure to have lots of popcorn on hand!  The categories on the DVD are:

1.) The New Normal: Life After a Stroke
2.) Family & Friends: Changing Roles & Relationships
3.) I Need a Nap!: Fatigue & Stroke
4.) Darnit! I Know That Word: Dealing with Aphasia
5.) Walking in Your Shoes: Advice FOR Caregivers FROM Caregivers
6.) Facing the Public: Going Out in the World Again After a Stroke
7.) Lean on Me: Stroke Support Groups/Stroke Camp
8.) Five Dark Clouds: Depression, Anger, Frustration, Sadness, Anxiety
9.) True Grit: Perseverance in Recovery
10.) Just One More Time: The Role of Exercise & Repetition in Recovery
11.) Creativity: Music & the Arts After a Stroke
12.) Faith & Inspiration: The Role of a Higher Power
13.) Don't Forget to Laugh: The Power of Humor in Recovery
14.) Attitude & Motivation: Finding Joy Again
15.) Out Takes & Credits

Here are a couple of photos of our booth that we set up at the conference.


In addition to our DVD's, we also had our other merchandise for sale-t-shirts, long sleeve shirts, hoodies, hats, and Monica Vest Wheeler's book for caregivers Coping With Stroke.





 Now through May 15, you can save $5 off a hoodie!  Go to www.strokecampshop.org to place your order.  On the screen, after you enter your credit card information, there is a discount code box.  Simply enter the code "Hoodie", without the quotation marks, to get the $5 savings.


The conference was great!  We met so many wonderful people from all over the country, even as far away as Alaska!!

The weather was absolutely gorgeous with temperatures in the 70's each day we were there.  It was hard to force ourselves to go inside and not enjoy the warm temperatures.  As we drove home, we went through a cold front and lots of rain.  Then, as we pulled in to Peoria, it started snowing!  Talk about a shock to the system!!

Just to give you a taste of spring, here is a photo of a tree that was just starting to bloom.


Speaking of spring and flowers, Stroke Camp is doing a fundraiser through the great folks at Flower Power. Click > here < to order your spring flowers and bulbs!  50% of all proceeds will go to Retreat & Refresh Stroke Camp.

Think Spring :-)
-Lauren



Sunday, March 24, 2013

Speech & Language Recovery Software for After Stroke, Aphasia or Brain Injury

by Chuck Jones

This week I'm going to give you a look at some software that we demonstrate at our camps. Marylee, the camp Executive Director, and her stroke survivor husband, John, are also using this software regularly to help John improve his communication skills. 

Go to HOME PAGE for Bungalow Software - Speech & Language RehabilitationBungalow Software gave me permission to put their product web page into this blog article complete with all their active links.
When you click on a link it will open a separate page, that is actually on their site, so that you can easily switch back and forth between it and this blog article. The page you open will stay open until you close it.


In this article, the products they offer are organized by a survivor's symptoms. Knowing your survivors and their needs, you should be able to match them with the categories listed below.

Speech therapy software, by symptom

Therapy software programs for your home computer or in the clinic following a stroke or brain injury. View them by symptom (below), with the easiest programs in each section listed first.

Therapy Categories (symptoms)


Articulation {Apraxia, Dysarthria} Speaking clearly.
  • Speech Sounds On Cue - Videos show patient how to say letters and words. For patients who benefit from watching your mouth model the sounds they are trying to repeat.
  • Sights'n Sounds 1 - Works on speech production and articulation at the word level. For patients who can repeat what you say (possibly with effort) without seeing your mouth modeling the word for them. Patients verbally names pictures, reads words aloud and repeats words they hear.
  • Sights'n Sounds 2 - For speech production and articulation at the sentence level.  Records patient's voice and plays it back along with a model sentence for comparison.
  • Numbers 'n Sounds - Speaking numbers out loud.
  • SpeechPacer - Helps to slow down (or speed up) patient's speech.

Word-Retrieval {Expressive Aphasia}

Thinking of the right word to say or write. 
  • Aphasia Tutor 1: Words  -Learning letters & words. Written naming. Also available in an Out Loud version that speaks the letters and words in a human voice.
  • Aphasia Tutor 2: Sentences -Sentence completion and word retrieval. Also available in an Out Loud version that speaks the sentences aloud in a human voice.
  • Sights'n Sounds 1 - Verbal naming (spoken word retrieval) and oral reading.
  • Sights'n Sounds 2 - For speech production and articulation at the sentence level.  Records patient's voice and plays it back along with a model sentence for comparison.
  • Numbers'n Sounds - Reading numbers aloud.
  • Synonyms, Antonyms, & Homonyms - Matching and written word retrieval.
  • Sentence Shaper 2 -our newest (and most challenging) program for aphasia. This helps patients turn halting, hesitant speech into conversational phrases and speeches.

Reading comprehension {Receptive Aphasia}

Auditory Comprehension

Auditory Processing Disorder

Read more about Auditory Processing Disorder

Auditory Discrimination

Thinking and Reasoning (Cognitive Therapy) exercises

Written Worksheets

Voice Assessment Tool

  • Speech Prism  - Helpful for vocal cord or voice pitch quality. It provides a visual display of what the voice looks like and is thus recommended for a patients with voice disorders who can not hear when they are voicing sounds correctly or not. 

Trial CD

Need help finding a program?

Bungalow's Therapy Advisor can suggest appropriate programs right now. Or contact us for help.

If you wish to visit their site directly their address is:
www.bungalowsoftware.com  
This will take you directly to their Home  page. 


Sunday, March 17, 2013

Adaptive Equipment

by Chuck Jones

I've been thinking about adaptive equipment for stroke survivors for a while and wondering how to go about writing something up for the blog that would make sense and not overwhelm you readers with too much detail.

I wanted to come up with a list of equipment that I thought would be useful to a stroke survivor but, since I have no firsthand experience with that, the best I could do was scour the internet for adaptive equipment web sites and see what is being offered. I was surprised with the amount of items that are available.

Those of you who are stroke survivors or caregivers know firsthand how difficult it is to adapt to missing or impaired motor skills on one side of the body. How difficult it is to try to live a daily life with the use of only one hand and to move about with only one leg working. The difficulty may be even more amplified if the affected side is the one that used to be the dominant one. 

There are so many daily two handed, two legged tasks that we take for granted: eating, tying shoe laces, removing the lid from a jar, cutting a piece of meat, getting in and out of a car seat, taking a bath, putting your clothes on, using a restroom...the list goes on. I'm sure you can add a dozen more daily tasks that are impossible or nearly so after experiencing a stroke.

While there is no one-hundred percent substitute for pre-stroke skills, there are tools in existence today - we're calling them adaptive equipment - that can help a stroke survivor gain more independence. That's what I want to share with you today.

One of the many perks you get attending one of our camps is that sometimes you might get to see adaptive equipment demonstrated. I have seen adaptive equipment demos at some of the Retreat & Refresh stroke camps I've attended, and most of them were fascinating - ingenious, I should say (and some even made me scratch my head and wonder why I didn't think of that) - but the number of items presented at camp are nowhere near what is at your fingertips on the internet. 

However, at the same time, there were things demoed at camp that I have not found on the internet, yet. For instance, the camp has a device that allows a fisherman to tie a fishing line onto a hook with one hand. I have not seen anything like that on the sites I looked at for this blog article. However, I need to add that I never saw any of our campers use that device because our volunteers are more excited about assisting the campers with fishing than they are to be fishing themselves. The camp also has an electric fishing rod and reel that can be cast with one hand and reeled in with the push of a button. A variation of this one I did see on the adaptive recreational web site.

To help with my search, Marylee, our camp Executive Director, gave me a document she prepared titled "Resources for Families of Stroke Survivors". It contains a list of about twenty addresses of web sites that provide either stroke information or products available to assist stroke survivors and their caregivers. I picked out six sites that were emphasizing products for disabled customers. I am sure there are many many more sites that could have been on this list but these are the ones we know about at this time. If you know of any others that you like, please let us know so we can include them, too.
 
One website has twenty-three major categories of adaptive equipment, such as: Car, Bathroom, Memory, Toilet, Bedroom, Kitchen, to mention just a few, and each of those categories contained several items. I think it is safe to say there are over a hundred items being offered at just this one web site alone. While browsing other sites, I noticed many of the same items being offered, even the same brands, but there are still many that are unique to their site.

I thought about including some pictures here but after trying to include a few, I realized I couldn't do enough of them or do them justice, so what I'll do is include the six links that I visited and you can go look for yourself. You'll get better descriptions and prices than I can provide in this limited space:

http://www.caregiverproducts.com  - Daily Living Aids for In Home Care. This site has many useful products for the kitchen, around the house, on the move, and for your comfort.

http://www.dynamic-living.com   - Making Living at Home a Little Easier. This site is the one with twenty-three different categories I mentioned earlier in this article.

http://www.goldviolin.com   - Lifestyle Products, Disability Aids and Independent Living Aids. This site has helpful products for independent living as well as some rehab and recovery ones.

http://www.accesstr.com   - Access to Recreation. While this site has products to assist outdoor activities as well as indoors, it also has a lot of aids for daily living as well. It even has some adaptive equipment for sports activities such as golf and fishing.

http://www.drleonards.com   - This site is a huge online catalog store with many products and gadgets and some categories with adaptive equipment.
 
http://themobilityresource.com  - Adaptive Driving Marketplace. This site has wheelchair vansscooter and wheel chair lifts, turning auto seating, steering controls, ramps. You can buy or rent wheel chair vans here.

I hope you find these few sites useful. There certainly are enough products available on these six sites alone to keep you searching for hours. If you have any other sites you think we should visit pertaining to stroke survivors needs please let us know. If you have a specific need and can't find any information about it let us know that, too. Maybe we can help or find someone who can. Use the "Contact Us" link in the list of links at the left of your screen.  

Sunday, March 10, 2013

Artist Stacy Gupton - Survivor Story


by Chuck Jones

 First, some Announcements:
                             Flower Power is back. Click here >> RRSC Flower Power
                             Strike Out Stroke at Peoria Chiefs game is scheduled for May 23rd
                             New camp schedule for 2013 is out. Click here >> Camp sched
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Introducing Stacy

Stacy Gupton is a Wyoming native, cowgirl, and 10 year, post stroke survivor. She suffered a massive hemorrhagic stroke in 2003 when she was a 21 year old college junior majoring in art education. She has been one of our RRSC Campers for the last three years, soon to be four. While Stacy has been living independently for some time now,  her mother, Mona, serves as her caregiver at camp.  

This is Incredible and I Think You'll Agree

Recently, Stacy was commissioned by Wyoming AgrAbility in Laramie to do 12 paintings that they could use to make a calendar. They needed a Wyoming artist, with knowledge of agriculture and a disability. They were looking for someone who could paint original one-of-a-kind images that capture what is uniquely Wyoming - its beauty, its people, and its agriculture. Stacy was perfect for the job. I couldn't get all 12 of her paintings into this article but I can tell you the other six are just as good as these and each one has its own story and special meaning to Stacy. 

AgrAbility is a strong partnership among the University of Wyoming Extension, Wyoming Institute for Disabilities, Wyoming Independent Living Rehabilitation, and Wyoming Services for Independent Living. Through this partnership, Wyoming AgrAbility pools resources in independent living, assistive technology, and production agriculture for individuals and their families engaged in ranching, farming, or farm-related activities that have been affected by a disability, limitation, or injury.

Building on this partnership, plus a nationwide network of state AgrAbility projects, Wyoming AgrAbility offers services and support for increasing self-sufficiency and independence. For more info click on this link > Wyoming AgrAbility

Following is the preface taken from the calendar:

The Stacy Gupton Story

A Wyoming native, Stacy lives in Laramie. The youngest of four sisters, Stacy spent her childhood on ranches in Wyoming, Nebraska, Montana, and Colorado. Her cowgirl spirit runs deep, and many members of her large extended family still call "cowboy" their profession. As a youngster, Stacy competed in rodeo - goat tying, barrel racing, and cutting. While she would have preferred to stay on her horse or in the barn instead of being forced to attend school, Stacy discovered another passion as soon as she began her kindergarten art class.

Stacy entered the University of Wyoming in 2000 as an art education major. Life took a drastic turn in April 2003 when the 21-year-old college junior suffered a massive hemorrhagic stroke in the right hemisphere of her brain - her artistic center. Stacy's family was warned that, if she survived, she would no longer be the artist she had been. After three brain surgeries, months of acute care, and intense in-patient rehabilitation, Stacy returned home to a life forever changed. With the unwavering support of her family, Stacy fought to regain functionality and to heal her brain, body, and soul. Through her determination, she returned to the University of Wyoming a few short weeks after her hospital release and graduated in December 2008.

Stacy continues to explore her artistic talents and astounds those who doubted her ability to do so. On any day she can be found in her studio working on a painting or a sketch of whatever grabs her attention. Stacy is an advocate for stroke education and shares her story of stroke survival with prople of all ages. In 2009, she and her mother, Mona, wrote a book about her stroke and journey and renewal. Entitled "A Piece of Her Mind", the book is available from Xlibris Publishing >> www.xlibris.com. When you get to this book site, type the title into the search box at the top right of the page and click go.

In Her Own Words - Artist's Reflection

"I was incredibly honored to contribute to this calendar. Art has always been a passion of mine. Since my stroke, it has also been my outlet - a way for me to deal with the aftermath of what happened to me. I prefer not to refer to myself as a disabled artist. Yes, I have a disability, but it does not define who I am or what I can do. Everyone has something about them that makes them different - my differences are just more visible than others. I describe myself as a sister and aunt, a comedian at times, an artist, a cowgirl, a true friend, and as a side note, a survivor."



"All of the paintings for this calendar hold special significance for me, but a couple of them stand out. My favorites are the old tractor and the barn in winter."




















"I could picture myself on the grey horse in the Powder River hills and almost smell the sagebrush." (C's ed note: This painting is also the cover of the calendar)





"The most difficult one for me to paint was the wheelchair and saddle. I had to walk away from that one several times before I could finish it. The concept was so personal - almost too emotional for me to put on canvas. It reminded me of my former life and all that has changed since my stroke but it also reflected hope. Getting back on a horse after my stroke was as theraputic as entering my studio."

"If I could offer words of advice to people who experience a life-altering illness or injury, it would be this - a changed existance can still be rewarding. I won't lie and say life with a disability is easy. It can be damned hard at times. You need to aim high and keep your focus on what's important. Never say never. Get up, dust yourself off, and keep going."
-Stacy Gupton

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I want to give special thanks to Stacy's mom, Mona Gupton, for sending me one of her calendars so that I could do this blog article. The calendars mentioned in this article are not for sale nor are they available for general distribution. While Stacy still retains ownership of the original paintings, the calendars are the property of and for the sole use by Wyoming AgrAbility. 

I hope you agree with me that Stacy has a definite talent and I hope she continues to let it develop. After all she has experienced it still shows through.  

Before I end this blog article I'd like to point out my second favorite painting of Stacy's. (The first being the winter scene with the horse drawn sleigh you saw up front.)

This painting on the left depicts the fortitude that this young lady has. I'm not going to tell you her interpretation of it. Maybe you can figure it out on your own, maybe not, but you'll have to find out for yourself by going to the following link and watching her brave heartwarming story: Click here > Stacy's Video

-Chuck







Sunday, March 3, 2013

Strike Out Stroke May 23, 2013

by Retreat & Refresh Stroke Camp

 After you read this posting go here to see the actual Strike Out Stroke (TM) event: http://rrscb.blogspot.com/2013/06/strike-out-stroke-peoria-chiefs.html

Announcements
        
       New camp schedule for 2013 is out. Click here >> Camp sched

Community Stroke Awareness with Strike Out Stroke™
With the
Peoria Chiefs and Retreat & Refresh Stroke Camp
May 23, 2013

Introduction
In 2013, an estimated 795,000 people in the United States will suffer a stroke, a condition in which the brain cells suddenly die because of a lack of oxygen. The degree to which their lives will be impacted is often a matter of awareness of the signs of stroke and the speed at which they receive treatment. 


Retreat & Refresh Stroke Camp, (RRSC), a 501(c) (3) nonprofit organization, organizes camps across the country for stroke survivors and their families, is at the forefront of raising public awareness for the symptoms of stroke and the urgency through Strike Out Stroke™ events.

In addition to Minor League Baseball, Strike Out Stroke™ events have been developed by RRSC in major markets across the U.S. in conjunction with select Major League Baseball Clubs. In each participating market, RRSC and the Club designate one game during the season to be Strike Out Stroke Day. With the participation of local stroke care providers, an event-based marketing platform is created to generate high profile awareness and game day activities to promote stroke awareness, and as a celebration of recovery for stroke survivors, their families and care providers.


Strike Out Stroke™ Day
This year, Strike Out Stroke™ Day will be held on Thursday, May 23 with the Peoria Chiefs in Peoria, Illinois. Retreat & Refresh Stroke Camp is organizing and implementing all local arrangements with the Club including the selection of the date, associated promotional and recognition rights, hospitality benefits, pregame field activities and in-game signage and audio acknowledgment. 


If you would like to be a sponsor of an event please use the contact info at the end of this page.

Sponsors will share the following elements:
- Advance public relations activities with city officials, Club mascot, survivors, stroke care providers, sponsors to promote stroke awareness.

- Gate promotion (e.g. stroke education to spectators as they arrive)
Pregame on-field VIP activities such as special introductions, first pitch, Dream Team and entrance of the LifeFlight helicopter (weather permitting) with stroke survivors, care givers and sponsor VIPs.
- Scoreboard and audio recognition of SOS Day, special guests and sponsors.
- Banners located in strategic locations in ballpark.
- RRSC newsletter and website exposure (www.strokecamp.org and www.strikeoutstrokes.org)
- Event shirts.
- MEGA Brain and Stroke Learning Center Exhibit (Based on availability)

Featured Benefits for Sponsors Based on Level of Sponsorship
- Ad exposure as Peoria Chiefs expects 4000+ people in attendance
- Civic exposure to 750 5th grade students in 10 intermediate local schools in 30 classes
- Recognition on Strike Out Stroke Event Shirts
- Recognition on all press releases and printed material
- Maximum exposure during pregame activities
- Prominent exposure on ballpark banners
- Exposure through Social Media
- Recognition on promotional brochures and posters distributed throughout community
- Recognition on Public Service Announcements and other promotional advertising
- Access to Skyview Hospitality Suite


For more information, contact:
Retreat & Refresh Stroke Camp
866-688-5450 (M-F 8-5 CST)
www.strokecamp.org