Sunday, April 13, 2014

Inside Monica's Mind

by Chuck Jones

Everyone should know who Monica Vest Wheeler and her husband, Roger, are by now.  She has contributed many articles for this blog over the years. Monica has published some excellent books on strokes, Alzheimer's and other brain injuries. I have posted three articles of hers so far this month. Here is her website where you can see her work and even obtain copies for yourself or for your friends and neighbors.

www.strokecopebook.com

She has been delighting us on Facebook with some of her unique and thought provoking posters for the past few weeks and I thought I'd share a few of them with you this week, especially with those of you who are not seeing them on FB. 

I have included seven of them here. I think she is going to do something really cool with these in the near future. If so, remember, you heard it here first. 







































































************************************************************************************************************************

Sunday, April 6, 2014

Blood Pressure during Exercise

This information was taken mostly from a now forgotten web site. If it looks familiar to you let me know and I'll see that they get full credit. If you are as confused or concerned about blood pressure, maybe this will help you as it did me.

Your blood pressure varies throughout your day depending on what you are doing. The more active you are the harder your blood has to be pumped and this then causes the blood pressure to rise. 


It shouldn't surprise you that normal pressure should rise during exercise and then return to normal once you are finished. If you do
exercises consistently, it will help to lower highbood pressure. However, if the pressure rises too high and/or does not return to normal, there may be a problem.

Let's look at why blood pressure increases during exercise and know if it's normal. When you are exercising your muscles need more oxygen. The heart then pumps more blood around your body with more powerful contractions which will make your blood pressure increase. Your systolic blood pressure increases during exercise as the cardiovascular system delivers more blood to the working muscles and your diastolic blood pressure stays roughly the same or decrease slightly.

The normal blood pressure varies for many different reasons, such as age, amount of physical activity, profession etc. As you learned in last week's article, the average is 120/80. That is, 120 for systolic and 80 for diastolic. But it can range anywhere from 90/60 to 130/80. If your blood pressure is above 140/90 while you are resting, it is a cue for hypertension. Then, you better be seeing a doctor.

In most cases, the diastolic rate changes vary little if any while you exercise. If there is an increase though of more than 20, or if the diastolic rate becomes 100 or more, you should discontinue exercise right away. If you have high blood cholesterol levels, which is known as hypercholesterolemia, or coronary artery disease your diastolic rate can increase significantly while you are exercising. If you do have any of these conditions, I would hope you would be working with a doctor by now.

The following can help you to understand the diastolic rates and their categories:


Diastolic rate of 80 or under- normal
Diastolic rate of 85-89- cause for concern
Diastolic rate over 90- hypertension
Diastolic rate between 90 and 99- stage 1 hypertension
Diastolic rate of 100-109- stage 2 hypertension
Diastolic rate over 109- stage 3 hypertension

It is imperative to note that hypertension not only requires more energy for the heart to be able to pump the blood, but it can also lead to congestive heart failure as well.

So what about that higher number, the systolic? A normal range for a systolic rate during exercise is between 160 and 220; if you are overweight the rise in blood pressure is somewhat higher. If you fall into the normal range at rest but your pressure reaches 190 after exercising, this is a good cue that you will suffer from high blood pressure in the future. 

Weight lifters have significantly higher systolic rates. The reason for this is, while they lift weights, there is a reduction in the amount of oxygen, because their muscles constrict. This requires the muscles and organs to get more oxygen rich blood. Do keep in mind, any and all overexertion can lead to heart attacks or strokes, so it is important not to overdo it.

So, why can exercise help? Regular exercise can help to lower your blood pressure, as long as you keep it up. That’s because exercises make the heart stronger so that it can pump more blood with less effort.

By maintaining exercising and being more active you can lower your systolic rate. As we all know exercise is good for all of us for so many reasons and this is just another great reason to exercise regularly and not to stop, because if you discontinue the regular exercising, the blood pressure will jump right back up. It does take about 3 months initially for the exercise to begin to lower your blood pressure.

It is recommended that you exercise either 2½ hours of moderate exercise or 1 hour and 15 minutes of vigorous exercise a week, or even a combination of the two. Moderate exercises, which can be any aerobic exercise that increases both your heart and breathing rates, include exercises, such as swimming, bicycling, jogging, walking (speed, or power), etc.

Household chores, such a scrubbing, mopping, mowing, raking etc. are also included in the moderate exercise category. So, why not do 30 minutes once a day only five days a week or 20-25 minutes seven days a week? If you think about it, it does not really take all that much extra work, and you can achieve it by just pumping up the regular way you do things, like walking or cleaning. If necessary you can even do a few quick bursts a day, they count too.

Now you know there is always a warning and you've read some already in this article. It is always necessary to consult a physician before beginning any exercise routine to treat hypertension. There are concerns that a doctor must discuss with you and also they can help you to design the proper workout for you. If you have any underlying factors, such as high cholesterol and diabetes, there are major concerns, such as developing hypertension, so again it is necessary to consult your physician to be safe, rather than sorry. Extra care should also be taken about exercise when you are having high blood pressure.

*******************************************************************************

Sunday, March 30, 2014

How Blood Pressure Is Measured

This information was taken mostly from a now forgotten web site. If it looks familiar to you let me know and I'll see that they get full credit. If you are as confused or concerned about blood pressure, maybe this will help you as it did me.

Blood pressure is expressed as 2 numbers. These numbers represent the pressure against the walls of your blood vessels as the blood moves through them. Systolic pressure is when pressure is highest in the arteries and occurs when the lower part of the heart contracts. Diastolic pressure is the minimum pressure in the arteries and occurs when the lower part of the heart relaxes. Normal blood pressure while you are resting should be less than 120 systolic over 80 diastolic, typically written as 120/80 or 120/80 mm Hg (read 120 over 80 millimeters of mercury).


If your resting blood pressure is less than 120/80, your blood pressure is normal.

If your resting blood pressure is between 120/80 and 140/90, you’re at risk for high blood pressure and have what is referred to as prehypertension. Lifestyle modifications are important and could be recommended by your doctor.

If your resting blood pressure is 140 and above for systolic or 90 and above for diastolic, your blood pressure is high. Lifestyle modifications and high blood pressure medicine are important and could be recommended by your doctor. 


If you have diabetes or chronic kidney disease, your doctor may recommend high blood pressure medicine if your blood pressure is above 130 for systolic or 80 for diastolic.

People with high blood pressure are often urged to change their diet, exercise regularly, quit smoking, and make an effort to lead less stressful lives. If changes to your lifestyle aren't effective enough, your doctor may prescribe a medication to help you manage your high blood pressure.

Medication is usually prescribed if a person’s blood pressure is above 140 systolic or 90 diastolic. There are several different “classes” of blood pressure medication. 
Some include:

Beta Blockers which reduce blood pressure by blocking a chemical that stimulates the heart muscle. This allows the heart to beat more slowly and less forcefully, which ultimately reduces the blood pressure within the blood vessels.

Diuretics which help your body get rid of unneeded water and salt through urine. Removing excess salt and fluid helps lower blood pressure and can make it easier for your heart to pump blood.


Angiotensin-Converting Enzyme Inhibitors (ACEIs) which help blood vessels relax by blocking the production of a hormore called angiotensin II that causes blood vessels to narrow.

Angiotensin II Receptor Blockers (ARBs) which allow blood vessels to widen by preventing angiotensin II from affecting the vessels.

Calcium Channel Blockers (CCBs) which help blood vessels relax by slowing the movement of calcium into the heart and blood vessels.

While medicines work well for many, not all medicines work well for everyone. If you feel that you are experiencing problems with your current medications, please speak with your doctor.

You should know that even with high blood pressure medication, making healthy lifestyle choices is recommended to help lower your blood pressure.

Blood pressure is constantly changing throughout the day. In the morning before you get out of bed, it is usually lowest. Once you are on your feet, it rises because you are now vertical and the blood has to be pumped harder to reach peripheral limbs. As you start moving, it increases further to meet demands of the body. During exercise, it is generally highest, but returns back to normal soon afterward. There are times when blood pressure increases during exercise are not normal however. 

Next week I'll cover how blood pressure is affected by exercise. If you have questionable blood pressure, abnormal responses during exercise, or just don't know what it is, talk to your doctor before starting a new exercise program.

******************************************************************************

Sunday, March 23, 2014

RRSC March Newsletter

For those of you who do not get our newsletter, here is what we had to say for March. If you did get the news letter, now is a good time to catch up on past articles by browsing the archives listed at the right. 

Director’s Corner

Tenth Anniversary of Stroke Camp

It is hard to believe that ten years have passed since the first Retreat & Refresh Stroke Camp. Little did I know when I gathered our little Peoria-area group on that September weekend in 2004, that I’d be traveling across the country anticipating 20 or more camps in 2014, not to mention the numerous Strike Out Stroke™ baseball events which will exceed 65 this year. What an amazing journey this has been.

The phrase that always pops up when I am asked questions about this journey is it “fills a need” which I guess is an accurate 
description of not just camp, but all that we do. That need has grown to include our Strike Out Stroke™ public awareness 
campaigns (see article below), Fifth Grade Education Classes, Tone Chimes Choirs (five now exist across the country thanks to the opportunity for survivors and caregivers to play the chimes at camps), MegaBrain events with our exclusive Learning Center, and countless little things too numerous to mention. 

As I reflect on those ten years, I also am reminded of every single person who has helped in any way throughout this journey. Each one has done their part in changing the lives of others. Our RRSC volunteers trek across the country ever ready to work hard and make a difference. The sponsor’s volunteers at camps and Strike Out Stroke™ events provide much needed support. Even though they are essentially helping others, they gain much for themselves and often do their jobs with a new perspective. Our “chimers” across the country enjoy gathering for rehearsals and have become like family. The fact that they have an opportunity to perform publicly and let the world know that stroke survivors and caregivers can give back to their community in a positive way is amazing. The first ten years have flown by, so let’s just sit back and see what’s next.

Marylee Nunley, Executive Director

Strike Out Stroke™

In 2013, approximately one million people heard the F.A.S.T. message through our major and minor league Strike Out Stroke™ events. Through the cooperation and financial support of Genentech, Inc. we are planning 16-20 major league and 50 minor league Strike Out Stroke™ events in 2014. Hundreds of thousands of people will hear the F.A.S.T. message. Although we don’t know how many lives will be saved or how many will have fewer disabilities, we do know it will make a difference. By April 1, 2014, our website, www.strikeoutstroke.com will be operational and will have all the dates of Strike Out Stroke™ events from around the country. See below for a list of Strike Out Stroke™ events through May. Thank you for your continued support. Look forward to seeing you at the ballgame.

The early 2014 Strike Out Stroke™ Events are:

Strike Out Stroke™ with the Peoria Chiefs
Our 6th annual Strike Out Stroke™ game with the Peoria Chiefs will be Sunday, June 1. Mark your calendars to save the date now. Tickets available for purchase-$11 per ticket starting in May. Stroke survivors and caregivers will receive free admission. Stay tuned to our next newsletter for more details.


Here's our national schedule:
May 4- Atlanta Braves & Kansas City Royals
May 10- San Diego Padres
May 15- Minnesota Twins
May 17-Colorado Rockies & New York Yankees
May 31- Seattle Mariners
June 1-Chicago White Sox

Strike Out Stroke™ is a division and registered trademark of Retreat & Refresh Stroke Camp.

Peoria, IL Area News

Trivia Night

The annual spring trivia night will be held Saturday, April 12 at the KC Hall in Washington, IL. The doors open at 5:30, dinner starts at 6:00, and trivia begins at 7:00. Cost is $30 per person or $240 per table of eight and includes three drink tickets, dinner, and trivia.

Space is limited and tables will sell fast! For more information or to reserve your table, please call 309-688-5450 or email lauren@strokecamp.org.

2014 Camp Dates, Locations, and Sponsors:

•May 2-4 at Camp Courageous in Monticello, IA*
Sponsored by: Mercy Medical Center and University of Iowa Hospitals and Clinics

•June 6-8 at Living Springs Camp in Lewistown, IL**
Sponsored by: Friends and Volunteers of Retreat & Refresh Stroke Camp

•June 20-22 at Elmhurst College in Elmhurst, IL

Sponsored by: Alexian Brothers Health System-Neuroscience Institute

•July 25-27 at Lutheran Outdoor Ministries Center in 
Oregon, IL
Sponsored by: OSF Saint Anthony Medical Center, Rockford Health System, Swedish American, and Van Matre HealthSouth

•July 31-August 3 (Family Camp) at Living Springs 
Camp in Lewistown, IL
Sponsored by: Friends and Volunteers of Retreat & Refresh Stroke Camp

•August 8-10 at Pilgrim Park Camp in Princeton, IL***
Sponsored by: Illinois Neurological Institute

•August 15-17 at Highlands Retreat Center in Allenspark, CO
Sponsored by: Cheyenne Regional Medical Center

•August 22-24 at Lutheran Outdoor Ministries Center in Oregon, IL
Sponsored by: OSF Saint Anthony Medical Center, Rockford Health System, Swedish American, and Van Matre HealthSouth

•September 5-7 at Chapel Rock Camp in Prescott, AZ
Sponsored by: Dignity Health

•September 19-21 at Living Springs Camp in Lewistown, IL
Sponsored by: Friends and Volunteers of Retreat & Refresh Stroke Camp

•September 19-21 at Green Lake Conference Center in Green Lake, WI
Sponsored by: UW Health

•September 26-28 at Carol Joy Holling Conference & Retreat Center in Ashland, NE
Sponsored by: Bryan Health, Madonna Rehabilitation Hospital, St. Elizabeth Medical Center, and the Lincoln Stroke Partnership

•October 3-5 at Butman Methodist Camp in Merkel, TX
Sponsored by: Medical Center Health System

•October 17-19 at Rock Creek Resort in Red Lodge, MT
Sponsored by: St. Vincent Healthcare

Additional camps will be added as plans are finalized. Stay tuned to the next newsletter, or check our website for the most up to date list of camps and to register as a camper or volunteer.

Notes about Camps:

*Although the Eastern Iowa camp is still pending final confirmation, registration forms are available, and you are encouraged to register ASAP.

**The camp normally held in October at Living Springs Camp in Lewistown has been moved to June 6-8. If your usually attend in October, be sure to sign up for the June camp so that you don’t miss out!

***The camp sponsored by INI has a new date and location this year! It will no longer be held at Camp Menno Haven in September, but will instead be at Pilgrim Park in Princeton, IL, August 8-10.
Be sure to note this change and register soon-spaces are limited!

Thank you to everyone who donated to our capital campaign at the end of 2013. We have raised 40% of our goal. Your support means a lot to us.

Sunday, March 16, 2014

Cranky Old Man

I took this off a FaceBook page called "DREAMS THAT CAME TRUE" hosted by Jolita Kelias
www.jolitakelias.com . I think the words and thoughts put into this also apply to a stroke survivor. When people who are not related to the stroke survivor work with them, what do they see? Do they see a person? 

When an old man died in the geriatric ward of a nursing home in an Australian country town, it was believed that he had nothing left of any value.

Later, when the nurses were going through his meagre possessions, They found this poem. Its quality and content so impressed the staff that copies were made and distributed to every nurse in the hospital.
One nurse took her copy to Melbourne. 

The old man's sole bequest to posterity has since appeared in the Christmas editions of magazines around the country and appearing in magazines for Mental Health. A slide presentation has also been made based on his simple, but eloquent, poem. And this old man, with nothing left to give to the world, is now the author of this 'anonymous' poem winging across the Internet.

CRANKY OLD MAN

What do you see nurses? . . .. . .What do you see?
What are you thinking .. . when you're looking at me?
A cranky old man, . . . . . .not very wise,
Uncertain of habit .. . . . . . . .. with faraway eyes?
Who dribbles his food .. . ... . . and makes no reply.
When you say in a loud voice . .'I do wish you'd try!'
Who seems not to notice . . .the things that you do.
And forever is losing . . . . . .. . . A sock or shoe?
Who, resisting or not . . . ... lets you do as you will,
With bathing and feeding . . . .The long day to fill?
Is that what you're thinking?. .Is that what you see?
Then open your eyes, nurse .you're not looking at me.
I'll tell you who I am . . . . .. As I sit here so still,
As I do at your bidding, .. . . . as I eat at your will.
I'm a small child of Ten . .with a father and mother,
Brothers and sisters .. . . .. . who love one another
A young boy of Sixteen . . . .. with wings on his feet
Dreaming that soon now . . .. . . a lover he'll meet.
A groom soon at Twenty . . . ..my heart gives a leap.
Remembering, the vows .. .. .that I promised to keep.
At Twenty-Five, now . . . . .I have young of my own.
Who need me to guide . . . And a secure happy home.
A man of Thirty . .. . . . . My young now grown fast,
Bound to each other . . .. With ties that should last.
At Forty, my young sons .. .have grown and are gone,
But my woman is beside me . . to see I don't mourn.
At Fifty, once more, .. ...Babies play 'round my knee,
Again, we know children . . . . My loved one and me.
Dark days are upon me . . . . My wife is now dead.
I look at the future ... . . . . I shudder with dread.
For my young are all rearing .. . . young of their own.
And I think of the years . . . And the love that I've known.
I'm now an old man . . . . . . .. and nature is cruel.
It's jest to make old age . . . . . . . look like a fool.
The body, it crumbles .. .. . grace and vigour, depart.
There is now a stone . . . where I once had a heart.
But inside this old carcass . A young man still dwells,
And now and again . . . . . my battered heart swells
I remember the joys . . . . .. . I remember the pain.
And I'm loving and living . . . . . . . life over again.
I think of the years, all too few . . .. gone too fast.
And accept the stark fact . . . that nothing can last.
So open your eyes, people .. . . . .. . . open and see.
Not a cranky old man .
Look closer . . . . see .. .. . .. .... . ME!!


Remember this poem when you next meet an older person (or a stroke survivor) who you might brush aside without looking at the young soul within ... We will all, one day, be there, too!

Sunday, March 9, 2014

UW Health Stroke Program News

Dear UW Health 2013 Stroke Camper:

Happy 2014 from your friends at UW Health. It has been a while since you’ve heard from us and we wanted to keep you apprised of the latest developments and plans.

2013 Stroke Camp Reunion

Since we see your pictures every day on our Stroke Camp calendar (and miss you), we decided to add a new event so we can stay connected. The Stroke Camp Reunion will be held in Madison, Wisconsin on Saturday, May 3, 11:00- 3:00, and all of you (and your loved ones) are invited. We will have a lunch, a brief presentation and plenty of time to mix and mingle. The location is Elver Park on Madison’s west side: more details are available at the web page listed below.

There is no cost to you for the reunion but we are asking for an RSVP for planning purposes. F
or more information and registration you can go to: uwhealth.org/strokecampreunion 

2014 Retreat and Refresh Stroke Camp

We have decided to host our next Stroke Camp Sept. 19-21, 2014, at the Green Lake, Wisconsin, Green Lake Conference Center. One difficult issue is how to maintain the same number of attendees (so that our discussion groups stay a reasonable size) and yet enable new stroke survivors to have the same camp experience that you found so valuable. Our goal is to create a good mix of former attendees and new ones at the 2014 camp.

We have decided to open up thirteen spots for new survivors and seven for returning survivors. When your registration and deposit is received, you will be contacted by RRSC and acknowledged as either an attendee or on the waiting list.

If new attendees have not filled the available spots by July 15, the remaining spots will be available for returning attendees from the waiting list. All spots are on a first come, first serve basis so please submit a registration form to Retreat & Refresh Stroke Camp  
(strokecamp.org) right away if you’re interested.

Besides the events listed above, we hope to see you at the UW Health Support Group (which meets the third Thursday of each month), or at least hear from you on our Facebook page 
(search for Aneurysm/Stroke Friends).

Sincerely,
Chris Whelley, MSN, CNRN
UW Health Stroke Program Coordinator

Sunday, March 2, 2014

Treatment of Apraxia: Personal Reflections

by Dave Valiulis

Treatment of Apraxia: Personal Reflections

(presented at the 2013 annual convention of the American Speech and Hearing Association)




About 6 years ago I had a stroke, resulting in both aphasia and apraxia.

My aphasia was very bad at the beginning. But as my aphasia started to recede, my apraxia started to be more noticeable.

As you know, every stroke is different. And only about 10% of stroke survivors have apraxia without aphasia, so it’s an uncommon condition. So I don’t pretend that my case is in any way typical. But I hope to give you some insight and maybe some ideas on treating other adults with apraxia.




I sometimes have to explain apraxia to lay people, talking about such things as muscle memories and motor plans. Happily, I don’t need to explain apraxia to you.

Instead, I thought I would talk a little about the stages and the eight techniques I have gone through with dealing with my apraxia so far.



Overall, apraxia recovery for me is a two-stage process.

First, it entails breaking apart words into their separate sounds, often letter by letter, relearning how to make every sound in our language.

Secondly, it entails putting these sounds back into words, and words into phrases. These two stages are not always linear; in fact, they often overlap. I’m at the first stage with lots of words and phrases even while I’m working hard on the second part.



1. Finger Tapping

My first and foremost technique is finger tapping. It has really helped me, and I still use it. But at first, it did no good. I think I was too bogged down with my aphasia to even pay attention to my hands.

But after a while, and with my therapist’s insistence, I started to rely on it to get me started when a thought or word became elusive due to my aphasia. And tapping continues to help with my apraxia, where it keeps me going with longer words and phrases.



2. Hearing/seeing yourself

Early on, my therapists encouraged me to tape my voice to help me self-correct. I tried that only once. It was unbearable to hear me, to hear how pathetic I sounded.

My therapist then said “wait a while and compare your speech after 1 month.” It’s been five years, and I still don’t want to hear myself back then. Perhaps I never will.

The same goes for seeing myself—every time a therapist would try to show me my own lips or tongue, I cringed looking at my crooked smile in a funhouse mirror.




3. Read my lips

But I had much better luck looking at other people and imitating their lips and voice. I started off with imitating my therapist, of course, but then I started looking at a web-site from the University of Iowa that nicely showed me how sounds should be formed and said.



From there, I moved on to the Rachel’s English site.

Rachel is a former opera singer and now has a very good site to teach American pronunciation. Her students are mostly from other countries who are working on their accents. But I found that many of her videos on forming letters, stress, and mouth positions were perfect for me too.


4. Rhythm

And her videos really taught me that it’s easier to speak a language when you pay attention to the rhythm of it. Rachel’s approach to getting the pronunciation right is all about the listening to the rhythm of speech.

This approach is similar to MIT (melodic intonation therapy), and it helped to explain why tapping was so effective for me. It also explained a little mystery that my therapists had. They sometimes wondered why I could say some longer, multisyllabic words easier than some of the shorter ones. I think it’s because I’m trying to rely on the rhythm of a word to get it out. Having more syllables in a word makes it easier to hear and pay attention to the rhythm pattern.


5. Reading rhythms and rhymes

Another technique I used was to read Dr. Seuss books aloud. This also helped me to remember the rhythm and to work on intonation, prosody, and linking. Plus, they’re great fun!

So I bought an iPad app of Dr. Seuss books, which allowed me to read them and hear them read.


6. Prickly pairs

After I got better self-correcting, I started practicing with minimal pairs, those odd word pairings that are pronounced the same except for a single sound. They were helpful to refine my ear and to practice some sounds that were hard to me to say.

My sister gave me an old book from 1956 that had lots of them, grouped by sounds. It was called Handbook of Speech Improvement.


If there was ever a person whose speech needed improvement, it was me! So I read this book and practiced with it.



7. Hard words

Working with minimal pairs meant I often encountered unusual words. That didn’t bother me at all because I always enjoyed all types of words and prided myself at having a large vocabulary.

So I added some tricky pairs to a list that I compiled of words that were especially hard for me to say. Many therapists have looked at this list and advised me to use different words instead of the hard and unusual ones on this list. I couldn’t really explain to them at the time that saying it plainly was tantamount to not saying it at all, that my stroke took away the way of speaking that I so loved. So I kept on using my list of hard words.



8. Learning IPA

Loving words and having apraxia is a curious combo.

Because I was a good speller, I would often see a word in my mind’s eye to help me pronounce it. But this trick only goes so far with English.

So I learned the basics of IPA. Now when I look up a word, I can find out how to really pronounce it.



I’ve dealt with lots of speech therapists in the years since I had my stroke. Although I have great respect for them all, some were better than others, at least, for me.

In my opinion, your most important role is to encourage your clients.

Remember to reinforce small gains; to be a partner, not a criticizer.
And give them the tools to work on their own. Take it from me, dealing with apraxia is a slow and arduous process, and much of the progress has to be made at home --without a therapist. For this reason, you have to be careful when setting up expectations – both yours and theirs. After all, you are not always going to be there at their side to help them.

But when you are with them, remember as Oliver Sachs once said, the essential part of a person’s therapy is your relationship with them.

Thank you.

*******************************************************************************

Sunday, February 23, 2014

Apraxia vs. Aphasia

information obtained from Marylee Nunley our Executive Director

This is a transcript of a video presentation by Dave Valiulis who comes to our camp in Rockford, Illinois. He has done some public speaking and is an all around nice guy. He helped us while we were at a stroke conference recently in San Diego since he lives there.

Dave presented a longer, somewhat different version in the “Communicative Disorders” class at a Program in Communicative Sciences and Disorders of Cal State, San Marcos, San Diego, 2012.

The video follows this text transcript version.

By Dave Valiulis

My name is David, and this is not how I sounded 4 years ago.

For no apparent reason, in 2008, a clot reached my brain, giving me a stroke. As a result...

My right side didn’t work and I couldn’t speak at all. Back then, I figured this wasn’t permanent, that soon I would snap out of it. I was right and also wrong. I can walk again and I can move my right hand again. And I can even talk again – sort of.

Back in ‘08, I had the following 3 speech conditions: 


     - I was unable to say words clearly or loudly enough. This is 

       calleddysarthria.

     - On top of my dysarthria, I had expressive aphasia -- knowing 

       what you want to say but you can’t think of the words to say it.

     - On top of my aphasia, I also had apraxia of speech -- not being 

       able to remember how to make your mouth say the words you 
       want to say.

   My dysarthria lasted about 6 months. My aphasia lasted about 2

   years. And my apraxia is 4 years and counting.

I have often wondered about which is worse – having aphasia or having apraxia.


Certainly, my aphasia was worse in the beginning because it prevented me from remembering the words for a thought. Aphasia also made me confuseyes with no, he with she, and will with would. It also made even the simplest email very hard without leaving out small words like the and of. But I am thankful I had a good kind of aphasia, one that left my comprehension and reading intact. In any case, it has gotten a lot better over the years.


But my apraxia is another story. It still plagues me with every word I speak. That is why I speak so slowly, so deliberately. That is why I must think about every word, every syllable, every sound.
All this, and no one has even heard of apraxia. Only 11% of stroke survivors even have it. No one can relate to apraxia or really understand it – unless they have it.

But everyone can relate to aphasia. After all, aphasia is like having a word stuck at the tip of your tongue … and everyone gets that from time to time. And lots of people have heard about aphasia since Gabby Giffords was shot. Why, aphasia even has its own month devoted to it (June).

But to explain apraxia, you have to give a detailed explanation of how speech happens. You have to say something like this…

     1. Speech begins with an idea of what you want to say.


     2. The words of what you want to say must be put in the right

         order and grammar.

     3. Then you have think about the sounds -- and the sequence of

         sounds -- that make up those words.

     4. All this information has to be translated into a series of highly

         coordinated motor movements of the lips, tongue, jaw, and 
         palate.

     5. The brain must tell the muscles the exact order and timing of 

         movements so that the words are properly said. In children, 
         once those words are spoken repeatedly, the speech motor act
         becomes automatic. These speech motor-plans are stored in 
         the brain to be easily accessed as muscle memories.

All this is my preamble to saying apraxia is the loss of these muscle memories. Stroke survivors like me who have apraxia have to slowly and with effort relearn these motor plans – in effect, our whole childhood’s speech process has to be relearned.


· So when I hesitate now, it’s not because I don’t know what to
   say; it’s because I have to think about how to make my mouth 
   move to say it.

· When I say a word over and over, it’s not because I am 
   perseverating; it’s because I am practicing – listening and making 
   adjustments.

· When I speak in a monotone, it’s not because I’m thinking like a
   robot; it’s because I’m struggling with every syllable.

· If I sound like I have a learning disability, it’s not because my 
   intelligence is faulty; it’s because my stroke reset my muscle
   memories to a child’s.

And that is why my voice has changed since my stroke. Stroke survivors all say that you never realize how many things you take for granted until they’re taken away. This is especially true of apraxia, since what it has taken away from you is so hard to explain and so hard to do without.


But I’m still working on my apraxia, making new pathways from my brain to my mouth that hopefully will last a lifetime this time!


Thank you.

Here's the video presentation given by David: 
http://www.youtube.com/watch?v=Gpz2ukhyy2I&feature=youtu.be

*********************************************************************************************************************

Sunday, February 16, 2014

Life is filled with a lot of "one liners"

By Monica Vest Wheeler

I've heard and seen enough at Retreat & Refresh Stroke Camps since the summer of 2008 to fill a couple dozen books just about camp and the amazing array of individuals who gather at these unique weekends.

The survivors, caregivers, volunteers and staff who gather at each of these weekend events were brought together for a reason. Executive Director Marylee Nunley often says everyone who is there was meant to be there, and that's why every camp is so different, even if a single theme is followed an entire year. It's all about the people.

I've scribbled countless notes through the years, and I have discovered an abundance of "one liners" within this collection. These are statements or simple observations that have been uttered or written at camps by anyone and have left a powerful impression upon me.

Yes, I'm ALWAYS listening and watching and absorbing. Revisit some of these moments with me …

• A volunteer wipes her eyes, tearful at the conclusion of a camp weekend and looks at the survivors: "My legs hurt, but you take a step forward every day. You’re all my heroes.”

• A survivor announces, "I’m adjusting to the new life.”
Another reminds him, “Don’t regret the old life.”

• One survivor tells another, “One of these days, you’ll get those fingers moving. Sometimes it hurts, but you get used to the pain.”

• A survivor with aphasia writes on a whiteboard, “Where would we be without our mouthpieces (caregivers)?”

• A caregiver says, "I'm reinventing my dream in a new way."

• A survivor says, "My stroke made me stronger. I have a list of things I get to do, even if have to find a new way."

• A survivor reflects, "If I did one step every day, imagine how far I would get in six months."

• A survivor tells her fellow survivors, "Everybody has a choice. God has work for us, so get to it. No time for a pity party. We have a life to live."

• A caregiver says, "He doesn’t know where he’s coming from. I should have had video. I would have shown that to him to show his progress. He doesn’t know the difference."

• A caregiver explains, "I came across people who know how to see through you and read you. It was surprising when I'd find people who 'get it.' Hang onto that to get you through until you meet the next person to carry you through the next step."

**************************************************************************

Sunday, February 9, 2014

Music Therapy - Enhancing Stroke Recovery

I have published music therapy articles on this blog before but I think this one is also worth passing on. This caught the eye of Marylee, our Executive Director, in the StrokeNet Newsletter web site she subscribes to. The article touches on some of the music and drum circle benefits we've noticed at our camps.  

This article was originally submitted in their February newsletter by David Wasielewski, a member of the StrokeNet Newsletter staff:

At a recent stroke group meeting a member with significant aphasia described his experience in joining a singing group, how his ability to sing was almost unaffected by his aphasia and that he had noticed some improvement in his normal speech that may have resulted from the singing. Some investigation and an email from Avi Golden, a Stroke Network member, brought to light some interesting information that demonstrates that singing and Music Therapy can help recovery from stroke in a variety of unexpected ways.

Music therapy research has demonstrated that this is an appropriate treatment for brain trauma recovery such as stroke. ‘Music therapy programs provide opportunities for clients to learn alternative means for undertaking daily tasks to accommodate for the neurological impairments that inhibit brain and physical function.’ It helps clients develop capabilities to recover what has been lost. Music Therapists can use music as a planning and memory tool.

Complex tasks are incorporated into a ‘song lyric’ to help survivors remember and organize all aspects of a complex task such as making a sandwich or getting dressed. Occupational and physical therapists have found that exercising to music helps survivors enhance recovery of physical functions, much the same as music helps healthy folks with ‘normal’ exercise routines. As we survivors often hear, much of the recovery from the trauma of stroke is dependent on neuroplasticity or the ability of the brain to rebuild function by developing new neural connections.

All Therapies encourage the rebuilding and of lost skills (recovery) or finding another brain function that allows the survivor to accomplish a task in a different way (compensation). Research in Music Therapy focuses on the ‘perception and production of music’ and its ‘effects on brain and behavior’. These effects on the brain can be categorized. One area of research focuses on how music and auditory stimulation relates to the synchronization of rhythmic physical movement.

Dance and jazzercise are examples of how music facilitates movement and physical memory. Does music enhance the brain’s ability to learn new motor skills? This research touches on the notion that music and its rhythmic character promote the synchronization of many related brain activities and that the simultaneous firing of these multiple groups of neurons helps promote recovery from the trauma of a stroke.

This follows the popular notion that neurons that fire together, wire together, creating effective new circuits. Repeating an experience utilizing musical rhythm enhances development of these new circuits and recovery of brain function. Music therapy is effectively administered according to the Neurologic Music Therapy (NMT) model. Researchers have demonstrated that gait training, walking with auditory stimulation, music, is more effective than without that stimulation.

The same favorable effect has been demonstrated in non-physical functions. One researcher describes a client who could not accomplish the complex task of getting dressed in the morning. After learning a song that described the task, the patient became much better at completing the task independently. The stimulation of rhythm and language improved the client’s memory, motor planning and proper sequencing of dressing activities. Song lyrics supplemented with a melody and tempo helped overcome his deficits.

Aphasic patients see similar benefits. Survivors who undergo intense musical therapy are able to better generate phrases in ‘out of therapy’ situations. Aphasic survivors who have difficulty with word retrieval are able to self- generate learned auditory cues to help with word recovery. Music therapy and singing have been successful with increasing vocal range, breath control and rate of speech.

The demonstration of successful new music therapy interventions offers survivors alternatives and supplements to traditional PT and OT therapies. The added variety of brain stimulation provided through Music Therapy is not only effective in enhancing speech therapy but has also proven to be effective in non-speech related tasks like gait training and recovery of other physical functions.

Based on this research survivors might explore Music Therapy to supplement their current traditional treatments. A conversation with your therapist might lead to some additional progress in recovery

Thanks to Avi Golden and my stroke support group for suggesting this topic.


Reference: Neuroplasticity and Functional Recovery: Training Models and Compensatory Strategies in Music Therapy  Baker, Felicity: Roth, Edward A. Nordic Journal of Music Therapy, 13(1) 2004, pp. 20-32.
-----------------------------------------------------------------------
If you are interested in subscribing to the StrokeNet Newsletter go to:
It's free and there are many good articles on stroke related issues.

****************************************************

Sunday, January 26, 2014

Stroke Camp is a “safe adventure”

By Monica Vest Wheeler

“Safe” is one of those words that has so many meanings, from protected and guarded to that box where we lock away our precious material possessions. “Adventure” is described as an exciting or unusual experience, which may involve risk.

From the moment I arrived at my first Retreat & Refresh Stroke Camp in June 2008, I discovered that the terms “safe” and “adventure” are perfect and fitting companions, and beautifully describe the camp experience.

As a volunteer and while collecting information for my books, I've interacted with hundreds of campers over the years, and a frequent theme of “courage” emerges. It does take a tremendous amount of courage for many stroke survivors and their caregivers to venture out into the “normal world,” where the effects of stroke may be glaring to the uneducated, with physical, emotional, cognitive, speech and other challenges.

During the numerous conversations I've had RRSC executive director Marylee Nunley, we've often noted the “safe” component of camp, where survivors and caregivers have a chance to share experiences in much more depth than the standard hour-long monthly support group setting. It's so refreshing and rewarding to engage in each other's lives and “live together” for nearly 48 hours.

At the same time, they don't worry about people staring at them in curiosity or simply ignoring them. Everybody at camp “gets it.” Do you realize how important, how fulfilling, how empowering, how human that is? Being accepted when you have difficulty speaking, when you need a wheelchair to get around, when you need some help cutting the meat on your plate? Do you know how incredible and amazing it is to have fellow caregivers who understand similar challenges and joys?

I've witnessed countless survivors and caregivers take risks they wouldn't consider exploring elsewhere. What are those “big” risks? Playing the drums, asking questions, playing games, allowing themselves to be pampered, singing or performing in front of an audience, acknowledging their fears, sharing what's on their heart, and laughing, laughing, laughing! Stroke Camp is the largest cheering block most of our families will ever find in a post-stroke world, and for some, it's a stepping stone to discovering even bigger and better adventures and audiences awaiting the gifts only survivors and caregivers can offer.

Start packing your bags! Another great Stroke Camp adventure is in the works! Tell other families they need to experience the safest adventure of their lives this year!

********************************************************************************************************************************************************************

Sunday, January 19, 2014

Memories of my first Stroke Camp - Monica

By Monica Vest Wheeler

This is the third in a series of articles written by Monica Vest Wheeler. If you missed the other two at the end of December 2013, now is a good time to get caught up. Just look for her name at the end of the title.   

The concept of Retreat & Refresh Stroke Camp was a whole new experience when I attended my first camp in June 2008. Though I clumsily offered my services as a volunteer, I spent more time people-watching and listening than lending a hand.


I watched this group of individuals, each with their own story and background, meld into a group that quickly found collective joy, support and encouragement. 




When I first talked to executive director and founder Marylee Nunley weeks earlier, she had explained that everybody wants to tell their story, because stroke is the most dramatic trauma many of these families had ever experienced. Why? Because it changed them and the course of their lives forever. Most say it’s “bigger” than cancer or heart disease with its memory, cognitive, speech or paralysis challenges.


Marylee said the biggest task is often having to accept the fact that the survivor won’t be the same person they were before because of abrupt shifts in physical, emotional or cognitive abilities, but “what can I do to be the best I can given the circumstances?”

“You don’t lose the person, but there are a lot of behaviors altered,” she explained. That’s hard for many people, and some may feel sorry for themselves.



“I’m so blessed to have a positive attitude and a family of origin that always turned things around. I feel like it’s my mission to give back and encourage and cheer all these people on. Besides encouraging the survivor, the caregiver is often the overlooked individual. I am blessed with a wonderful, supportive family, a positive attitude and a lot of energy. Many folks are not.”



As I watched campers and volunteers move from one activity to the next, I witnessed this overwhelming, yet not smothering, sense of family. 

A tractor pulling a trailer, affectionately called “the people mover,” took everyone on an old-fashioned tour of the grounds. As I bumped along with everyone else, I could not mistake how something so simple could create such joy … the smiles, the laughter, the hand-holding, hugs and soul-refreshing relaxation. 


The family-style meals created a real sense of community as volunteers gave the caregivers a break and offered survivors any assistance they needed in serving or cutting meat. I remembered what Marylee had told me earlier.

“If you can’t find a word, then somebody will help you. If you’re drooling and don’t have sensation on one side, if the food is there, we’ll just hand them a napkin and say, ‘Oops, let’s tidy up here.’ We all know that’s the way it is with surviving a stroke.” She said many stroke families don’t go to nice restaurants anymore because of the stigma or feeling embarrassed.


The term pampering took on a whole new meaning when I watched the other volunteers give campers massages and manicures on Saturday morning. All who indulged in the back rubs were visibly relaxed as their pace of breathing slowed to give tired and tense muscles a reprieve from constant stress. They played games, joined in crafts, and some even climbed the rock wall.

At the close of the weekend, an abundance of hugs and voices rich with appreciation and love swirled around me. Nobody wanted to leave, even though they knew this much-deserved vacation had


ended. However, its lessons learned and connections made gave these campers the fuel they needed to return to everyday life. “Retreat & Refresh” was true to its name.

I didn’t want to leave either. I was addicted. After 40-some camps, I’m still here and looking forward to embracing the love, laughter, adventure and everyone I will meet this year.


**********************************************************************************

Sunday, January 12, 2014

Physical Therapy After a Stroke

by Chuck Jones

I'm not a medical professional I'm a computer geek so, before acting on anything I say in this post, I suggest you talk it over first with your doctor or physical therapist (PT). Recovering from the effects of a stroke is the most difficult thing a survivor and caregiver together must face when he or she returns home from the hospital. When a person suffers a stroke it has been estimated that they are losing 1.9 million brain cells per minute. You can see how this rapid deterioration, if left unchecked, is going to eventually seriously affect a persons physical well being as well as their mental one. The length of time this is allowed to go on is then going to affect how severe the deterioration is going get.

Stroke survivors have to relearn things previously taken for granted, perhaps, all over again. How much is determined by the factors mentioned above. Fortunately the brain can be retrained. With physical therapy the brain can be convinced it must try to repair or reroute paths around the damaged areas that used to control those muscles or mental faculties before the stroke. I'm going to be addressing only the physical part in this post. That damage can range from extreme weakness to an affected limb to that limb being completely paralyzed. Physical therapy with a licensed physical therapist is essential to get those arms and legs working again. We are talking about sitting, standing, walking, even something as simple as getting in and out of bed or a car. From the camps I've been to, I have seen how difficult these seemingly simple things can be to a survivor. But, as difficult as they are to them, they can be conquered to a great degree, if not completely, with physical therapy.

Oh, and you may have wondered what the difference is between physical therapy and occupational therapy, both being essential elements towards recovery? A simple explanation is that an occupational therapist helps you learn how to do things like feed and dress yourself while a physical therapist helps with muscle building and mobility training, i.e.: the sitting, walking, moving about I mentioned earlier.

The goal of the PT is to get the survivor moving as soon as possible and getting them to do this on their own. This is pretty much true for any type of hospital stay where motion has been affected, such as knee replacements and the like. You don't want those muscles to atrophy. After an evaluation of the patients condition, the PT will decide what needs to be done and many times, if the patient can't do it on their own, the PT will begin by doing it for them. The important thing is to get those muscles working.  

It's very important to note that the survivor is not and should not be alone in this. Caregivers and family members need to be involved also. Much encouragement and positive reinforcement from others is needed, and I believe the speed of physical improvement is directly related to how much and how often this is given. Expect the physical therapist to get others involved in sessions.

Physical therapy will often start in the hospital but it will, and must, continue even after discharge. The same therapist may even be involved but, if not, there are other programs and physical rehab centers available. The hospital should be providing this information prior to discharge. 

Of course, there is that ugly head of rehab costs that always affect the amount that can be afforded. Everyone's insurance and financial situation is different and so complicated I won't even attempt to cover that now. Just get it and get as much as you can and learn what needs to be done and do it with or without extended professional help. However, I believe recovery is faster, easier on the caregiver and more complete with professional care.

Here is an excellent link that can describe rehabilitation much better than I can in this space.

http://www.webmd.com/stroke/tc/stroke-rehabilitation-what-to-expect-after-a-stroke

Sometime in the near future I'll describe some of the exercises that are taught by the physical therapist. I won't be able to show you how to do them properly but I think I will be able to give you a general idea of what they are. Physical therapy is much more complex than what I can describe in a blog and a physical therapist is essential to make sure they are done correctly and without introducing more damage.

*********************************************************************************




Sunday, January 5, 2014

How Do We As A Camp Survive?

by Larry Schaer, Loren Kramer and Chuck Jones


As you all realize, the camp requires financial resources to continue its mission. Historically, RRSC has survived on the revenue it obtains from stroke camp sponsors.  As we continue to grow, we also need additional funding for local and national stroke awareness programs through additional sponsors, grant and public donations. So, we do fundraisers throughout the year to support the camps. Some of the things we have done in the past included a “Trivia Pursuit" nights a couple times a year and the "IronMan" golf outing once a year. We also work at a local Raffle (like Bingo) Hall every Thursday night and we are just starting to get sponsorships for our Strike-Out-Stroke™ events  as well as MegaBrain events at baseball games, malls, and fairs throughout the country. 

Trivia Night
We have "Trivia Pursuit" nights in the spring and fall. We have a fee for tables made up of teams of eight players. Snacks, a meal and drinks are included. We provide raffle baskets, door prizes, and sometimes a silent auction. We offer the raffle baskets and a 50/50 drawing as a way to raise additional funds. There is a 1st, 2nd, and 3rd place award for the top teams. Attendees enjoy the event and at the same time we generate some funds.  All the tables are sold out within a couple weeks of our announcement.
 
IronMan Golf
We've been doing an IronMan golf outing in the fall for several years. This event is a 7am to dusk golf marathon where, starting early in the morning, volunteer golfers must golf for the whole day and try to get as many holes of golf in as they can before it gets dark. You don't have to be good, you just have to be fast and have the endurance. And, I suppose you have to love golf to do this. We provide the golf course, golf carts and cart drivers, and food and drinks for this event. The golfers use their own equipment. The job of the volunteer cart driver is to assist the golfer with whatever is necessary for the golfer to play as fast as possible. The event takes place at a local public course and the course starter makes sure that all non-participating golfers that day have the understanding that our "IronMan" golfers have priority on the tees, fairways, and greens and must allow them to play through. This has worked very well and the non-participating golfers are always glad to step aside momentarily to help us get those holes in. Before the event, the golfers get pledges from "sponsors" for so much per hole. One of our volunteer golfers set a record of over 350 holes before dark. He is truly an IronMan!

Raffle Hall
Every Thursday we have volunteers who help staff the raffle hall at the Tazewell Festival Center in Creve Coeur, IL. This raffle parlor, owned and operated by Tazewell Bingo Center, helps charities and non-profit organizations, like us, raise money for our activities. Raffle is much like Bingo with enough differences to make it not be called Bingo. However, we also have a bingo license because the state mandates that we play a certain number of bingo games each session.  Confusing?  Yes! Our duties consist of behind-the-counter sales and distribution of raffle card media and raffle computer use, sales and distribution of various pull-tab gaming cards, verifying the validity of a game winning card or other winning media, distributing winner pay-outs, and periodically assembling promotional mailings for the hall. Sometimes we assist the game number-caller with the operation of the game. We do not call the raffle numbers during a game. They have a paid professional for that and a paid floor manager on-site to assist, direct and train helpers like us. They also have a cafe that serves food and beverages daily during game time. We usually have about six volunteers helping each Thursday. Volunteers usually work two Thursdays a month.

Strike-Out-Stroke(TM)
Approximately 3 years ago, Retreat & Refresh Stroke Camp trademarked the term, Strike Out Stroke™.  Since that time RRSC has been developing a national stroke awareness program through major and minor league baseball. In 2014, 16 major league and 50 minor league Strike Out Stroke events are being planned throughout the country.  In 2013, over one million people heard about the signs of stroke and the need for immediate treatment at our Strike Out Stroke™ events. The events are used to promote stroke awareness in the nearby communities through exposure at the ball games with various activities such as educational presentations, poster contests, pregame ceremonies and   public advertising.  So far we have had SOS events with the Arizona Diamondbacks, Texas Rangers, Seattle Mariners, Colorado Rockies, Chicago White Sox, New York Yankees, Cincinnati Reds, Washington Nationals, St. Louis Cardinals, Atlanta Braves, Minnesota Twins and San Diego Padres.  Every year in June we have a Strike Out Stroke event with the Peoria Chiefs minor league. The Peoria Chiefs are currently the farm team for the St. Louis Cardinals. 

MegaBrain Events 
MegaBrain events feature a huge inflatable facsimile of the human brain. The brain, when inflated, is about eight feet high and fifteen feet square and weighs about 350 pounds, including air. It is constructed so that people can walk through a tunnel going through the center of the brain and, inside, learn about the various diseases, including stroke that can occur in a human brain. Many times the brain is accompanied by a four laptop computer or six Android computer tablet display we developed called ELSIE, which is an acronym for Learning Center. ELSIE presents a multiple choice quiz about strokes and stroke prevention and the meaning of the acronym F.A.S.T. used to identify stroke symptoms. Usually, after taking the quiz, the participant is rewarded with a memento promoting stroke awareness. In addition to the ballgames mentioned above, ELSIE has been to the Peoria Northwoods Mall sponsored by Illinois Neurological Institute, the health fair hosted by INOVA Neuroscience Institute held at the Tyson Corner Center Shopping Mall in Washington, DC, a professional hockey game of the Kansas City Mavericks (incidentally, I got within five feet of the Stanley Cup trophy that weekend),  the Kansas City Black Expo at the Kansas City Convention Center Bartle Hall sponsored by the Research Medical Center affiliated with the HCA MidWest Health System, a Seattle Mariners baseball game as well as the Arizona Diamondbacks. Finally the exhibit was featured at the Coralville Mall on Tax Free Day. There will be more in 2014.

If you can come up with any more ideas for fund raisers we can try, please let us know. We are trying our best to keep our camps going every year.

*********************************************************************************