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, 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

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 . 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.


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 . . . 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: 

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  
( 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).

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.