Sunday, August 30, 2015

Joan Leeney: A caregiver who gave her survivor everything

By Monica Vest Wheeler
Retreat & Refresh Stroke Camp Staff Volunteer

How do you define caregiving? How do you define compassion? How do you define love?

I see all that and so much more in my friend Joan Leeney … her expressive face, her rich voice, her warm embrace, and the way she always gazed at her husband, Jim, a stroke survivor who also has multiple sclerosis. No matter what, she gave him everything … a sense of normalcy, a community of friends and fellow survivors and caregivers, and all of her physical and emotional strength to make sure the world did not close its doors on this couple despite the challenges.

Joan Leeney opened so many doors and so many hearts and minds because she and Jim were going to enjoy life every day, whether the world was ready or not.

I met Joan and Jim at my very first Stroke Camp in June 2008. I learned so much from just listening to her and observing how she interacted with Jim, who was always in a wheelchair. I can still hear her voice …

On the subject of attitude: “Jim’s personality is so positive. We’ve lived life. Brain injuries of any kind are so different from person to person. How much is MS? How much is stroke? Who knows? We deal with it.”

On the subject of being practical: “We know all the free days at the museums. We do all sorts of free things because we can cancel at the last minute. If he doesn’t feel well, it hasn’t cost me $20 or $40. I didn’t know before he had his stroke that I can take him into the ladies washroom and just say, ‘Man coming in. It’s federal law.’ You think I’m going to take him into the men’s?”

On the subject of not ignoring survivors: “Jim is sitting next to me. It’s really irritates the heck out of me if somebody asks me if he wants something. He’s sitting right there. Ask him! It’s so frustrating. They’re adults, not children, although they’re dependent.”

On the subject of coping with life: “We saw a social worker. We both were depressed. She only recommended that we both get medications. My husband was 62. I said we could do this now. What do we do when he’s 72? She said, ‘Don’t worry, he won’t be alive.’ That so infuriated me! He’ll make it just to spite them!”

And on the subject of conversation: “Friends told me Jim would say more if I’d shut up.”

I loved Joan because she always made everyone around her feel so good and so alive. And that’s what makes her passing on Friday so hard to grasp, so hard to imagine.

Joan never let anything stop her until the very last breath, even when the cancer was destroying her physical body this past year. But it never destroyed her faith and love of life and Jim. She made sure Jim attended Stroke Camp in Elmhurst, IL, in July, even though she had to accompany him in her own wheelchair because of her weakened state, joined by their son and daughter-in-law.

As I fought my tears while taking their family photo — because I knew it would be the last time — she once again used her magic to get a smile out of Jim. He did that for her to create beautiful memories and to make me smile.

Joan is in heaven now, finally free of the earthly pain, dancing with God and all the angels, because she wasn’t afraid to ask for anything. Just one of many reasons I loved her so much.

If you knew Joan, you know what I’m talking about. And if you didn't have the privilege to meet her, I’m sharing this short video of some of my favorite photos I shot of her and her precious Jim  … They make me smile and cry, and it's okay to have a lot of both right now.

And you wonder why I find being part of Stroke Camp so vital, and why Stroke Camp is so important to so many lives. I love MY survivors and caregivers for giving me inspiration, love, laughter, lessons … and a new reason to wake up every day.  

video

Tuesday, August 25, 2015

Rockford Stroke Camp August 2015

This past weekend was one of the best camps I've had the privilege of attending. It was held at the Lutheran Outdoors Ministry Camp located near Oregon, Illinois. We've used this camp grounds several times now and it is a terrific place with lots of scenic beauty and wildlife. During morning walks we have spotted deer, turkey, coyote, and many birds. 

This year we had two camps going on the same weekend so we had to pack both the van and the trailer. 







The van went to North Carolina and 

















the trailer went to the LOMC camp. 


  









There were many repeat campers this year as in the past. More than half had attended more than one camp this year at this location. There were two camps held this year a couple months apart and most of the repeats attended both camps. 





















Now tell me, have you ever seen a better looking bunch of campers, ever?!

We were housed comfortably in three beautiful locations. Here is one of them.


Here's a look at some of the things we do at camp.



                                  Manicures 














Hand waxing


No she's not injured. She's just letting the warm soothing wax do its magic.









Fishing and paddle boating. 









A volunteer or staff member is always on-site to help the stroke survivor enjoy the moment.






This year was unique in that we were able to help our stroke survivors and their caregivers enjoy the zip-line that the LOMC camp has on-site. I wish you could have seen the excitement of the survivors as they did this. Plenty of assistance was available to help them enjoy this. Survivors who were able to at least stand alone, even without the use of their hands were able to experience this.


















We also do crafts, entertain our campers with skits, and always have a special, fun filled Saturday evening program for your enjoyment. 

You never know what to expect at our camps because we strive to make them fun, entertaining, educational, comfortable, well fed, and therapeutic. Please come join us some time.


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Sunday, August 16, 2015

KIMT TV RRSC Camp Report

I haven't done this kind of thing before but this week I'm just presenting a link to a news report from KIMT TV in Rochester, Minnesota. This is not the first time we were featured in an uplifting news report but it is the first time we conducted a stroke camp in Minnesota and as usual with our other camps it was very well attended, as you will see. I'm sure we'll be invited back next year and this one will be added to the 20+ camps (and growing) we are conducting all over the country.


http://kimt.com/2015/08/07/a-weekend-retreat-for-stroke-survivors/

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Sunday, August 9, 2015

“Strike Out Stroke” Visits Miller Park

“Strike Out Stroke” Visits Miller Park

During tonight’s pregame ceremonies, we presented a special stroke symptom awareness event, “Strike Out Stroke”
Strike Out Stroke was born out of the non-profit organization, Retreat and Refresh Stroke Camp. Stroke Camps began 10 years ago by Marylee Nunley and her husband John, a stroke survivor, who recognized the need for a weekend of relaxation, pampering, support, and camaraderie for stroke survivors, their families, and their care-givers. Since Stroke Camps humble beginning 10 years ago, it has grown to reach 12 states and continues to grow every camp season.
Through their work, Marylee and Larry Schaer, another Camp founder, found there was a great need in stroke education across the country, and thus the idea for Strike Out Stroke was born five years ago. The simple mission of Strike Out Stroke is to spread the F.A.S.T message across the country and greatly increase the number of stroke survivors who get to the hospital in time to get life-saving treatment. Strike Out Stroke continues to grow every summer, reaching over 20 professional baseball markets along with planning and creating new stroke awareness campaign across the country.
Stroke is an emergency, a brain attack cutting off vital blood flow and oxygen to the brain, and 800,000 strokes will occur in the United States this year. It is the number one cause of adult disability and the fourth leading cause of death. Stroke can happen to young and old.
We were honored to have stroke survivors from our community join us tonight.



Tom Pfeifer, now 71, was 58 at the time of his stroke. At the time, he was the director of Wisconsin Workforce Development. Unable to walk or talk after his stroke, with great determination and perseverance, Tom is now living independently. He is a huge sports fan and was honored to be on the field with his beloved Brew Crew.
Michelle Nelson was only 33 when she was struck by the first of her three strokes. Unable to return to her job in the paper mills following these devastating strokes, Michelle visits rehabilitation centers regularly to help other sin recovery and brings her dogs along to share the joy they bring nursing home residents.
Joe Romensco suffered a stroke at age 48. An avid bicyclist, Joe had just completed a 100-mile bike tour when he had his stroke. Following concentrated months of physical, occupational and speech therapy, today Joe is an active volunteer, helping other survivors experience freedom through adapative cycling.
Finally, Alan Schoenwetter, a stroke survivor who has overcome complete paralysis of his left side, was on hand to throw out tonight’s ceremonial first pitch as a representative of Strike Out Stroke.
-Cait

Sunday, August 2, 2015

You Are a Care Partner Not a Saint

The following article was first published on the Care Partners Resource web site (carepartnersresource.com) in December 2009. The author, Lori, is also the owner of  the web site and a volunteer at our Colorado Stroke Camp. I encourage you to visit her site for excellent articles and help on caregiving.

Forgive Your Trespasses: You are a care partner not a Saint
Posted by Lori on Friday, December 25, 2009

As a care partner it is easy to get wrapped up in the idea that you have to be perfect, a saint if you will. We are trying to be all things to all people and lest not forget those around us reminding us we are doing something most people could not or would not ever do. For this reason it is easy to get caught up in the idea that we should not experience human frustrations or emotions.

There can become a point when those frustrations can be taken too far and in those cases I urge a caregiver to reach out and seek help. This article is about trespasses that cause mostly harm to the caregiver not our loved one. Moments of shortness of patience, a harsh word or even a selfish thought that we carry deep in our soul reminding us we are not perfect.

I began my journey for sainthood long before I became a care partner. From an early age it was important for me to be the perfect daughter, the best wife and of course the most patient and loving mom. So when my mother survived her stroke and I made the decision to become her live in caregiver I had the same expectation, PERFECTION.

One might think that it would be logical to allow myself a little slack since my career had been in the mortgage industry not the medical profession and mother needed constant care because of the effects from her stroke or the fact that I had been out of my parent’s home for 26 years and moving home was a huge adjustment. But care giving leaves no time for slack, too much to learn, too much to do and too many opportunities to be less than perfect.

I care gave and care partnered my mother for 8 years and during that time and the four months since her death I am bothered by my own trespasses. The times my patience ran out and I spoke to her in a less than loving voice or when I would get busy doing things around the house and forget to make sure she was fed on time. My biggest regrets are the times I would cut her off when she was trying to tell me something. My mom was unable to speak in sentences after her stroke so we spent a lot of time figuring out what she was trying to say. She said “do do do” thinking she was saying words. During the first few months following her stroke we would spend up to 45 minutes playing 500 questions only to discover she wanted a piece of lint picked up off the floor. After a while it all became too much and I began cutting her short. I would say “okay Mom is there pain, are you hungry? Okay forget it, we’ll figure it out later, here just watch T.V.” I think of how difficult it must have been for her going from the matriarch of our family where everything she said was heard with respect to being cut short when she was just trying to make small talk. I feel angry at myself for my lack of patience. I wish that I had been able to settle into my role as a care partner as gracefully as mom was able to adjust to her role as a stroke survivor.

My trespasses as a caregiver were secrets I had carried silently deep inside fearing judgment. I am telling my secrets in the hope that other care partners and caregivers will see that they are not alone. We are humans not saints and as such we are subject to moments of stress and feelings of being overwhelmed. Acknowledge your limits, ask for help and take a moment to breath. You will be a better care partner by loving yourself without judgment, guilt benefits no one so forgive your trespasses and move forward.
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Sunday, July 19, 2015

iPad and Tablet Apps for Stroke Survivors

I want to apologize for running this article for two weeks. I have been traveling and didn't get a new one ready in time. I will publish a new article Sunday, August 2. 

The following article was published on www.strokewise.info hosted by David Valiulis. 

David has allowed me to re-publish some of his articles on our blog. Thank you David! Please visit his site when you get the chance.

David has attended our Rockford, Illinois camp in previous years, and this year I might have the opportunity to meet him since I will be there helping with camp duties. The apps mentioned here are for iPads but as David mentioned there are many Android apps on the Google Play store as well as the Android App store. Android tablets exist that are much cheaper than iPads yet just as powerfull for these apps.

As a precaution, if you don't use the above mentioned internet stores or the sites mentioned in this article, be certain you trust who you are downloading from. I have not verified any of these sites personally so I am assuming that the sites mentioned in this article are legitimate sites that David trusts. I would recommend a stroke survivor getting a dedicated tablet used only for these types of apps and not for storing personal information.  


People who have had strokes and aphasia might be candidates for using small computers (primarily tablets) for communication or to relearn how to speak.


These tablets are great for complex communication because they have a speech generating device, text to speech, virtual keyboards, pictures, symbols, and video; plus you can download Skype to make phone calls. 

Dedicated machines also exist from many vendors, such as the Windows-based system from DynaVox or the Mac-based Lingraphica system, both costing much more than the tablet-based solutions.

The iPad is the best platform for AAC for stroke survivors at the moment. Apple iPad is a small, portable, wi-fi enabled, 10" communication device that has a ten-hour battery and starts out with a price a little over $500. But Android-based devices are plentiful. (See the Android app store and this handy page.)

Augmentative and Alternative Communication covers a large range of techniques which support or replace spoken communication. In the following list, AAC means the iPad app speaks for you instead of helping you to improve your speech. As opposed to AAC apps, therapeutic apps help the patient practice (and thus improve) their speech.

You can read my list of apps below. For a more-complete list of apps, see http://tactustherapy.coam/downloads/#8e74e7178ec1f94c8.

iPad Apps for AAC 

SmallTalk apps (free)
All the SmallTalk iPhone apps are not editable and icon-based.


  • Aphasia (blue) – a male voice speaks various words and phrases (includes the same words/phrases spoken by a woman’s mouth for practice).
  • Aphasia (pink) – same as #1, except using a female voice throughout
  • Conversation – a male or female voice speaks conversational phrases
  • ADL – a male or female voice speaks daily-activity words/phrases
  • ICU – a male or female voice speaks words/phrases for intensive care
  • Pain – a male or female voice speaks common words/phrases about pain intensity and location
  • Dysphagia – a male or female voice speaks various common phrases applicable to eating and swallowing
https://www.aphasia.com/products/communication-practice-apps/


Proloquo2Go ($250)
The popular icon-based app is also the worst named. (Proloquor is Latin for "speak out loud.")

It provides natural sounding text-to-speech voices (American, British, and Indian English), high-resolution symbols, automatic conjugations, a default vocabulary of over 7000 items, word prediction, expandability, and accepts your own pictures.

Lots of great features and icons, but you can get lost using them.
http://www.proloquo2go.com/

RocketKeys ($160)
A customizable talking keyboard. This app lets you build the keyboard by choosing the exact keys, size, layout, colors, prediction, and voices you want. 
  • Turn on accessiblility for users with complex needs
  • Includes an innovative prediction engine based on analyzing 9 million Twitter tweets
  • Guesses misspelled and incomplete words
  • Includes terms and names from news and culture
  • Includes lifelike Acapela voices for men, women, boys, and girls
  • Set pitch, speed, and volume
  • Optionally configure distinct voices for speaking, tapping, and prompting
  • On-screen cursor shows exactly where you touch
https://itunes.apple.com/us/app/id594324953?mt=8

OneVoice ($200)
Does less than Proloquo2Go in an attempt to make it easier to use. Comes with a pre-populated icon-based vocabulary (focused on children).


  • Add your own phrases and photos
  • 4 synthesized voices (2 male and 2 female)
  • 100 custom-made icons
  • Drag and drop organization of phrases and categories

http://thinklegend.com/onevoice/



Easy Speak – AAC  ($40)
An iPhone icon-based app to which you can add words/phrases by choosing one of the over 800 symbols or by taking a picture yourself. Organize these custom words by placing them in a custom color-coded folder.

http://itunes.apple.com/us/app/easy-speak-aac/id449435222?mt=8





Assistive Express ($25)

A simple keyboard-based app.
  • Word prediction to minimize the keystrokes required
  • Self-learning of new vocabulary into the word prediction list
  • Favorites list for users to save commonly used sentences
  • 3 voices included
  • Adjustable volume and speed for voices
  • Large font and buttons for easy access
  • Recent list for quick access to previously spoken sentences
http://www.assistiveapps.com/


Verbally (free, the full version is $100)
A keyboard-based solution to speak your words.
  • contains 50 essential words to save you typing.
  • offers common phrases to enable faster conversation.
  • Text prediction - learns the words you use.
  • Choice of 3 keyboard layouts.
  • Choice of male or female computer-generated voice.
  • Turn on “Speak Each Word” to have the app speak as soon as each word is completed or when you tap a phrase.
  • A chime to get someone’s attention.
  • Steady Hands feature makes the app type only when you lift your finger off of the intended letter on the keyboard.
  • No Wi-Fi or 3G connection required.
http://verballyapp.com/


Talk Assist (free)
A simple keyboard-based iPhone app where anything you type will be spoken out loud using a computer-generated voice.

Phrases are saved to a history, and favorite phrases can be bookmarked for regular use.

http://itunes.apple.com/ca/app/talk-assist/id329338159?mt=8





Therapeutic iPad Apps 


iPad Screenshot 3Constant Therapy ($20/month, 30-day free trial)
Constant Therapy is an iPad application with 60+ tasks with up to 10 challenge levels, allowing for personalized activity programs for each individual. Constant Therapy provides tools for stroke survivors who want to improve their speaking, reading, writing, counting money, solving problems, reading maps and calendars, and more.



SmallTalk apps (free)

All the SmallTalk iPhone apps are not editable and icon-based.

Blends – video of a woman’s mouth saying /bl/, /br/, etc. up to /xt/
Phonemes – video of a woman’s mouth saying all the phonemes
Days – video of a woman’s mouth saying the days of the week, the months, and the ordinals to 31st
Letters – video of a woman’s mouth saying the letters of the alphabet, cardinal numbers to 20, and colors
Phrases – video of a woman’s mouth saying various common words and phrases
Oral Motor – video of a woman’s mouth doing lip, tongue, cheek, jaw, and soft palate exercises

https://www.aphasia.com/products/communication-practice-apps/


SpeakinMotion Trial (free, for now)



An iPhone app where the patient can follow close-up videos of mouth movements. The combination of visual, auditory, and in some cases, written cues prompts patients to produce speech.

The cost: “The basic idea is that there will be minimal to no cost associated with trying the technique. If you benefit from this technique, the basic service will be reasonably priced on a monthly basis, with no long-term commitments.”

http://www.speakinmotion.com/



Speech4Good ($5)

Allows to monitor, record, and share your speech therapy.
Digital Speech Graph (oscilloscope) in real time
Delayed auditory feedback (DAF) at adjustable levels
Record, add notes, and play back your practice
Custom-built library to save and organize your files by date
Email your session's recordings and notes to anyone

http://itunes.apple.com/us/app/speech4good/id467558411?ls=1&mt=8


Speech Trainer 3D ($8)


This is a 3D demonstration of all sounds in the English language. Has detailed 3D animations that demonstrate the correct positioning of the tongue, lips, and mouth.
Has 30 sounds represented; 23 consonants and 7 vowels.
Speech Trainer 3D demonstrates the sounds in two views: Front and Side View and uses the International Phonetics Alphabet.
In horizontal orientation, the camera goes on to show you your own face to help you practice (acts like a mirror).

http://itunes.apple.com/us/app/speech-coach-3d/id418333616?mt=8


Articulate it! Pro ($30)


Meant to help people practice their pronunciation skills (aimed at children).
Contains over 1000 images and all sounds of English.
Audio recordings for every word.
Built in voice recording allows the person to compare their productions with the audio recording.

http://itunes.apple.com/us/app/articulate-it!/id391296844?mt=8


Bla | Bla | Bla (free)

A variety of artistic faces that react to noise, with bigger reactions the louder the sound. This simple app encourages voicing (apraxia/aphasia) and loud voicing (dysarthria).




http://itunes.apple.com/us/app/bla-bla-bla/id430815432?mt=8




Speech Sounds on Cue ($29)

Shows how to produce speech sounds and words. Contains 530 videos, sound clips, and color photos designed to help adults and children to produce the consonant speech sounds in isolation, in words, and in sentences.

iTunes also has a free Lite version that contains only words that begin with the letter W.

http://www.mmsp.com.au/speech-sounds-on-cue-for-ipad/




Dexteria ($3)

Is a set of hand exercises (not games) that improves fine motor skills and handwriting readiness.

http://www.dexteria.net/






Spaced Retrieval TherAppy ($3)

An app to improve memory of names, facts, and routines for all people, including those with memory impairments.

http://itunes.apple.com/us/app/spaced-retrieval-therappy/id498787795?mt=8&ign-mpt=uo%3D4




Comprehension TherAppy ($20)


Targets auditory and reading comprehension of single words. Designed to help people with receptive aphasia and alexia. It can also be a tool to treat attention and other cognitive deficits.

3 modes: Listen, Read, and Listen and Read

500 nouns with full-color photographs, recorded voice, and clear text with the option of adding over 100 verbs and adjectives

Real recorded male voice provides neutral North American accent in slow, natural speech

http://itunes.apple.com/us/app/comprehension-therappy/id438069999?mt=8


Naming TherAppy ($20)


Stroke and brain injured patients can practice word-finding on their own or with a therapist. Full-color photos with real recorded voice for over 500 nouns. App is self-scoring.

Goal Areas:
Word-Finding, Verbal Expression, Confrontation Naming, Responsive Naming, Cued Lexical Retrieval, Semantic Memory, Repetition, Circumlocution, Describing, Semantic Feature Analysis

http://itunes.apple.com/us/app/naming-therappy/id451093640?mt=8



Writing TherAppy ($15)


An app to practice spelling single words and to practice write to dictation. With 4 modes and 3 levels of difficulty in each, users have access to 12 different exercises to practice spelling over 500 words.

http://itunes.apple.com/us/app/writing-therappy/id464224299?mt=8


Language TherAppy Lite (free)

A trial of Language TherAppy, a 4-in-1 app combining Comprehension, Naming, Writing, and Reading TherAppy. Each Lite app contains reduced functionality with a limited set of words (5-7) instead of the 500-700+ included in the full versions. Add one of your own words to Writing & Naming TherAppy instead of unlimited custom words in the full apps.

http://itunes.apple.com/us/app/language-therappy-lite/id527100035?mt=8&ign-mpt=uo%3D4


Speech FlipBook ($10)


Have access to nearly every single-syllable word in the English language, suitable for all ages. Pick which sounds you want to appear in initial, medial, & final positions and then flip between sounds or words to create the targets you want. Then hear the sounds and words, or record yourself & play it back instantly.

  • over 2300 recordings of words in natural speech
  • 125 phonemes and clusters
  • all vowels & consonants of Standard American English
  • over 250 sets of homophones

https://itunes.apple.com/us/app/speech-flipbook/id582842245?mt=8&ign-mpt=uo%3D4


SpeechPrompts ($20)


Designed for individuals exhibiting abnormal prosody. Prosody refers to the musical aspects of speech, including rate, rhythm, volume, phrasing, and intonation.











https://itunes.apple.com/us/app/speechprompts/id575636222?mt=8


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Sunday, July 12, 2015

Enjoy summer!!

Organization Highlights
By Maria Erichsen
Operations Manager of Strokenetwork.org

RRSC Blog Note: The following article was originally published in the June 2014 StrokeNet NewsLetter. I have modified some wording slightly to fit the audience of this blog. I urge you to visit their site as it contains many excellent articles pertaining to strokes and personal experiences of stroke survivors and caregivers.

The StrokeNet Newsletter may be reached at: http://www.strokenet.info

Contact Maria at merichsen@strokenetwork.org 


Summer is an important time to remember to provide encouragement to others in the stroke family.
  
...Schools are closing, grills are firing up, nature is in full bloom, and it is great to be outdoors. All part of what lets us know the season is summer. Do you know what is not seasonal? Exactly!! A stroke!

If you have been part of our community for a while you know summer can tend to slow down a great deal in terms of activity on this site in general. We understand everyone has been cooped up this very long, snowy, miserable winter and wants to get out and away from a computer screen, but keep in mind those who are new to us need help now not in the fall. Maybe if we all make the effort to check in and see if someone needs someone else who gets it, we can keep the ball rolling and have hope continue to flourish throughout the summer.

More important than anything you could give just a little bit of your time. Setting aside just a few minutes a day to offer a hand of comfort and support throughout the summer will do a world of good to let our stroke friends know how important their recovery really is to us.

Experienced Stroke Survivor or Newbie, take every opportunity to get out and enjoy your life. With summer approaching, we would like to remind you that spending time out in the sun and heat should be done with some precaution.

Sunscreen should always be used even if you are not prone to burning easily. Stroke often causes diminished neurosensitivity and you may not feel you are burning until you have gotten a considerable burn. Dealing with it later will not at all be pleasant. An ounce of prevention is well worth it. Similarly, certain medications advise against sun exposure. It would be wise to check your medications to be sure they are sun friendly. If not, this does not mean you should not take them to venture out.

Never skip your medication. What it does mean is you need to accommodate the medication. You can still have a good time and go out. You just need to do a little planning. Sunscreen will do nothing to counter the sun’s effect in this case. What you need to do is be sure there will be a place where you can be out of the sun. You may want to scope out where you are going in advance to be sure there is a shaded area; you might need to bring an umbrella.

One of the most common questions we hear from survivors is why they can’t seem to warm up. Having the chills or an inappropriate read on the ambient temperature is extremely common and why you must stay hydrated.

Without an accurate read on whether or not you are too warm you can easily over heat. It takes a very short time to develop heat stroke. The signs of it are nausea, headache, and dizziness, if you feel any of these physical conditions move into a cool air-conditioned area as quickly as possible. Drink plenty of water. Do not drink alcohol as it will raise your body temperature. NEVER mix alcohol with your medicine!

Mixing alcohol with certain medications can cause nausea and vomiting, headaches, drowsiness, fainting, or loss of coordination. It also can put you at risk for internal bleeding, heart problems, and difficulties in breathing. In addition to these dangers, alcohol can make a medication less effective or even useless, or it may make the medication harmful or toxic to your body.

Most importantly never use your stroke as an excuse to not get out and enjoy your life. Don’t turn down an invitation. We know everyone will appreciate and enjoy seeing you there more than you realize, isn’t that why you were invited?

Until next month get out enjoy the weather, make some time for us, and please stay safe!

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Monday, July 6, 2015

Survivor Spotlight: Susan Wahlmann


Susan Wahlmann had her stroke at age 39 in November 2011 as a result of her birth control medication. Luckily her husband Michael knew the signs of a stroke ( his grandfather had one years ago) and within 15 minutes, she was in the emergency room of Unity Point West in Rock Island, IL.

She received tPA and four and a half months later, after outpatient therapy, was back at work. Other than forgetting words when she is excited or really tired, she has no lingering effects from her stroke.

She is now in between jobs, having worked as the Performing Arts Director at Quad City Arts for nearly 20 years. She is a volunteer for Feel Better Friends, a non-profit organization where she volunteers crochet custom dolls for children with cancer and other serious illnesses. She is a volunteer for the Normaleah Ovarian Cancer Foundation and a committee member for the girlpARTS FEST this July.

She is a board member for WQPT public television. She and Michael have attended Stroke Camp for the past three years, and Susan has created a scrapbook for each year. They hope to attend family camp this year with their 13-year-old daughter, Emma.

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Sunday, June 28, 2015

RRSC Open House Was Amazing



June 14th we had an open house from 12:30 to 3:30 at our new headquarters in Peoria, Illinois. 





At least a hundred visitors passed through our facilities throughout the day and enjoyed the free BBQ pork sandwiches, hot dogs and drinks.







Here is a brief tour of what our visitors were here to see. I'll start with the offices of our Executive Director, Associate Director, Camp Coordinator and Administrative Assistant.



As you enter the front door you will be greeted by our Camp Coordinator, Lauren, who is not at her desk right now because she's helping our visitors, our chimes choir and with the many fun things we presented. Lauren organizes our sponsors, camp locations, volunteers, equipment, travel, schedules, pretty much everything that makes our camps run so smoothly.


A little further in is the office of our associate director, Larry, who is not at his desk either because he is out in the parking lot greeting incoming visitors. Larry finds sponsors for our camps, scouts for suitable, handicap accessible camp locations, and also is the nation-wide manager of our Strike Out Stroke division. Strike Out Stroke is a nation-wide organization providing stroke awareness and education through major league baseball teams.


At the back of the building is Marylee's office. Marylee is our Executive Director. She does everything else plus make sure the rest of us do everything else as well. Without her and her husband John there would not be a camp.

We have a new member of our staff, Martha, who is taking care of our multitude of administrative tasks plus office maintenance, and her office is between Larry's and Lauren's. For some reason I don't have a picture of her desk. Her office looks similar to the others and is even a little bigger. She's not at her desk either because she's helping with paraffin dips, which I'll explain later.

One of the entertaining events at the open house was our chimes choir.

The choir members are stroke survivors, primarily, and their caregivers, and is led by Susan, one of our Music Therapists, and Lauren, who is also a Music Therapist in addition to being our camp coordinator. Each member has a chime instrument that produces a unique and beautiful tone. With Susan's and Lauren's direction and Monica the soloist and a caregiver herself, they create a symphony that can bring tears to your eyes. That's Monica standing behind the choir.



Another fun thing to do was a game of Bags played similar to horseshoes. The idea is to get the bag in the hole or be the closest team bag on the board.  








Remember me mentioning paraffin dip? Here's how it's done.







This is one of the things we do during the manicuring sessions at camp. You dip your hands in the warm melted paraffin...








...put your hand inside the soft cotton glove, and let the magic soak in. This is very popular at the camps.








Here is our meeting/recreation/chimes choir practice room. During the open house, Sarah, Marylee's sister, led some of the attendees in a drum circle. Another popular and frequent event at our camps.






We also had our educational learning center set up to promote stroke education and awareness. 





The highlight of the open house was when Marylee's brother, Rodney, presented a check for ten thousand dollars to the camp in memory of his late wife, Meme. Rodney and Meme have been terrific supporters and active in camp events for many years. 

Through his generosity many stroke survivors who could not otherwise be able to afford to attend camp will now be able to.

Thank you Rodney! We and many less fortunate stroke survivors are blessed to have you and your support.

I would also like to give a thank you to all the volunteers who helped make our open house special, and a special thanks to one of our voluteers, Tony Ozella, and the Knights of Columbus of Washington, Illinois for the use of their tent and BBQ grills, and a thanks to Earl and Carol Lee for the use of their tents. 

We've come a long way since our first camp in 2004. Where are we now? Maybe this will help you appreciare our growth. Each circle represents either a camp location (yellow) or a major league baseball game where we've done a Strike Out Stroke event (white).
And we are still growing.



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