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 ( 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.

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 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

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.

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

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

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.

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

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.

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.

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

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.”

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

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).

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.!/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).

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.

Dexteria ($3)

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

Spaced Retrieval TherAppy ($3)

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

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

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

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.

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.

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

SpeechPrompts ($20)

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


Sunday, July 12, 2015

Enjoy summer!!

Organization Highlights
By Maria Erichsen
Operations Manager of

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:

Contact Maria at 

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!


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.


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.


Sunday, June 21, 2015

Tone, Tightness, & Spasticity

The following article is reproduced from the Stroke Wise web site ( with Dave Valiulis' permission. I encourage you to visit his site as he has a lot of excellent articles related to strokes. You may click on any highlighted words below to be taken to a website for more information. When you exit that website you will be returned to this one automatically.

Tone, Tightness, & Spasticity

Spasticity is tight, stiff muscles that make movement difficult or even impossible. Also called tone or tightness, spasticity can cause pain, abnormal posture, and uncontrollable movements.

Spasticity can occur anywhere in the body, but it is most common in the arm typically with a closed fist, bent wrist, and flexed elbow. Needless to say, this can make common activities like dressing and eating very difficult.

In legs, spasticity causes a stiff knee and a pointed foot. It can also cause involuntary movements, which may include spasms and clonus (a series of fast involuntary contractions). Orthotics, such as ankle-foot braces (AFOs), are sometimes used to limit spasticity in legs.

Nearly one out of every three patients may have spasticity after a stroke, and approximately 40% of them still have spasticity at 12 months post-stroke. In a survey done by the National Stroke Association, while 58% of survivors in the survey experienced spasticity, only 51% of those had received treatment for the condition.

The cause of spasticity is not totally understood, but basically it entails damage to the part of the brain that controls voluntary movement.

Without daily physical rehab, the muscles will remain contracted and joints become immobile. For best results during stroke rehab, therapy such as stretching and strengthening exercises work best and are typically the first line of treatment.

What you can do about the symptoms:

Strategies include moving of the affected limb early in rehabilitation and sustainedstretching.

Splinting and ice packs are other strategies that can be used to temporarily decrease the extent of spasticity.

Oral medications for spasticity include medications such as Valium or Baclofen, which relaxes muscles by acting on the central nervous system. They can decrease muscle spasms, tightness, and pain and improve range of motion. The problem with oral medications is their side-effects like sleepiness.

Baclofen can also be given as an injection within the space surrounding the spinal cord (this is called intrathecal injections). However, this this requires surgical implantation of a pump that delivers the drug to the spinal cord.

Injections are administered directly into the spastic muscle by blocking chemicals that make muscles tight. Commonly used is the botulinum toxin (Botox) or Phenol. These injections usually improve muscle stiffness within two to four weeks.

In severe cases, surgery is an option. This includes includes lengthening or releasing of muscle and tendons and cutting selective sensory nerve roots.

But "the Holy Grail for spasticity reduction is a melding of doctor-prescribed medical interventions and therapist-delivered neuroplastic treatment options," as Peter Levine says in his book "Stronger After Stroke".


Sunday, June 14, 2015

Post-Stroke Seizures

The following article is reproduced from the Stroke Wise web site ( with Dave Valiulis' permission. I encourage you to visit his site as he has a lot of excellent articles related to strokes. You may click on any highlighted words below to be taken to a website for more information. When you exit that website you will be returned to this one automatically.


Post-Stroke Seizures

Seizures are caused by sudden disorganized electrical activity in the brain and be can be characterized by spasms or convulsions. About 10% of stroke survivors experience seizures.

In the first few weeks following a stroke some stroke survivors will experience a seizure. As a general rule, seizures that first occur immediately shortly after a stroke are unlikely to became a permanent, recurrent disorder. On the other hand, seizures that first occur weeks or months after a stroke can be a recurring problem and require medication. Seizures like this are also know as stroke-related epilepsy.

Some physicians will prescribe a temporary anti-seizure medication as a preventative measure immediately after a stroke even if no seizure has occurred. This is most often done in the case of hemorrhagic strokes, which are more prone to seizures rather than ischemic strokes.

Stroke-related epilepsy can typically be fully controlled with anti-seizure medicines.
More than 20 different anti-seizure medications are available today, all with different benefits and side effects. Taking medications regularly as prescribed is very important in post-stroke seizure management.

The latest studies of post-stroke seizure treatment show that newer drugs, such as lamotrigine, gabapentin, and levetiracetam, in low doses are often prescribed because of their high rate of long-term seizure-free periods, improved safety profile, and fewer interactions with other drugs, especially anticoagulant ones.

Work with your doctor to find the best medicines for you.

What to do if you see someone having a seizure
The National Institutes of Health has established guidelines for what to do if someone is having a seizure:
  • Roll the person on his or her side to prevent choking on any fluids or vomit.
  • Cushion the person's head.
  • Loosen any tight clothing around the neck.
  • Don't restrict the person from moving or wandering unless he or she is in danger.
  • Do NOT put anything into the person's mouth, not even medicine or liquid. These can cause choking or damage to the person's jaw, tongue, or teeth. Remember, people cannot swallow their tongues during a seizure or any other time.
  • Remove any dangerous objects the person might hit or walk into during the seizure.
  • Note how long the seizure lasts and what symptoms occurred so you can tell a doctor or emergency personnel if necessary.
  • Stay with the person until the seizure ends.Call 911 if:
  • The person is pregnant or has diabetes.
  • The seizure happened in water.
  • The seizure lasts longer than 5 minutes.
  • The person does not begin breathing normally or does not regain consciousness after the seizure stops.
  • Another seizure starts before the person regains consciousness.
  • The person injures himself or herself during the seizure.
  • This is a first seizure or you think it might be. If in doubt, check to see if the person has a medical identification card or jewelry stating that they have epilepsy or a seizure disorder.
After the seizure ends, the person will probably be groggy and tired. He or she also may have a headache and be confused or embarrassed. Try to help the person find a place to rest. If necessary, offer to call a taxi, a friend, or a relative to help the person get home safely.
For more info:

Sunday, May 31, 2015

Tips and Info for Caregivers

The following article is reproduced from the Stroke Wise web site ( with Dave Valiulis' permission. I encourage you to visit his site as he has a lot of excellent articles related to strokes. You may click on any highlighted words below to be taken to a website for more information. When you exit that website you will be returned to this one automatically.

Caregivers for stoke survivors

Tips and info for stroke caregivers

There are over 2.2 million stoke caregivers in the U.S.

General tips for caregivers:
  • Help the individual become involved outside the home and in leisure activities. 
  • Encourage as much independence as possible. 
  • Let the survivor make the decisions.
Be mindful of you too.
The rewards of caregiving include an improved appreciation of life, feeling needed or appreciated, and the development of a more positive outlook. But caregiving can also be a tremendous burden. It can result in psychological distress, decreased social contact and activity, depression, stress, and an overall decrease in quality of life. If you see any of these things happening to you, try these tips:
Seek out caregiver support groups.
Do not try to do caregiving 24 hours a day. Take a break.
Be sure to take care of you. Eat, take your medications, exercise, rest, go shopping, have some fun.
Ask for help from family, friends, or community organizations.
Remember, you are a caregiver, not a slave.
Try to keep a positive attitude. This is an important coping strategy.

Tips for dealing with people with aphasia: 
  • Maintain a natural conversational manner appropriate for an adult. If needed, you can simplify your speech by using short, uncomplicated sentences; but don't talk "down" to them. Do not use "baby talk." 
  • Don't raise your voice; they are not hard of hearing. 
  • Minimize distractions and background noise, such as a blaring radio, whenever possible. 
  • Be patient. Repeat the content words or write them down as needed. 
  • Include the person in conversations and encourage any type of communication, whether it is speech, gesture, pointing, or drawing. 
  • Avoid correcting the individual's speech, unless they ask for help. 
  • Do not finish the person's sentence or train of thought for them, unless asked. 
  • Allow the person plenty of time to talk. 
  • Don't pretend you understood what was said if you did not. 
  • A good video of "aphasia etiquette" comes from the Stroke Association of Great Britain. 
Click to watch video - Ten Guidelines for Interacting with a Stroke Survivor

Publications, handbooks, and newsletters:
Stroke-related associations and websites:
  • Careliving Community is a social network designed exclusively for caregivers and family members of stroke survivors.
  • See the Internet Stroke Center page for general info for caregivers.
  • An excellent page comes from the American Stroke Association.
  • See the Stroke Family Caregiving for African-Americans, which contains useful information for all caregivers.
  • CaringBridge provides free websites to caregivers to easily post updates and progress for the loved one. This reduces the time and emotional energy spent on repeated phone calls and emails and keeps everyone informed with the same, accurate information.
  • The list of Caregiver Rights might help you re-focus some time and energy on caring for yourself and let you know that it's not unusual to feel under-appreciated, frustrated, left out and even angry.
General and local caregiving sites:

Monday, May 25, 2015

Chime Strokers play Springfield!

By Monica Vest Wheeler
Retreat & Refresh Stroke Camp Volunteer Staff 

Our Chime Strokers choir can make your heart and soul sing … any time anywhere.  I may have memorized most of their tunes, but I hear and learn something new every time I see them in action.

This unique "collection" of stroke survivors and caregivers bring magic to tone chimes and everyone in their audience. The simplicity, yet challenge, of the chimes give our survivors a brain workout beyond compare. I've witnessed so many amazing miracles at all of the Retreat & Refresh Stroke Camps where the chimes have been brought into play. Yes, pun intended :-)

Our Chime Strokers, created nearly five years ago to promote a little education and a LOT of fun and friendship, went to Springfield recently to represent Stroke Camp when State Senator Dave Koehler bestowed an official proclamation recognizing Stroke Camp's contribution to the quality of life for stroke survivors and caregivers across the state and now the country. Our executive director Marylee Nunley was bursting with pride as always.

Our performers go way beyond the call of duty to give their time and energy to rehearsals and performances year-round. They are individuals whose lives have been deeply and profoundly affected by stroke: caregiver Monica Mugavero, caregiver Tony Ozella and survivor Pat Ozella, caregiver Ruthanne Scott and survivor Bob Scott, caregiver Carol Lee, and survivors Randy Randall, John Nunley, Dawn Robinson, Mert Berlett, Bill Hart, and Sue Johnson.

And none of this would be possible without the unwavering dedication, talent and pure love of co-directors and music therapists Susan Bock and Lauren Kramer. What they give of themselves can't be described in words.

Keep on eye on our Chime Strokers! You never know where they're going to perform next!

State Senator Dave Koehler & Stroke Camp Executive Director Marylee Nunley

Senator Koehler and survivor Mert Berlett

Senator Koehler and survivor Randy Randall

Senator Koehler and survivor John Nunley

Senator Koehler and caregiver Tony Ozella, and survivors Pat Ozella, Randy Randall and Sue Johnson

Senator Koehler and caregivers Monica Mugavero and Carol Lee, and survivor Dawn Robinson

Senator Koehler and Chime Stokers' co-director Susan Bock

Chime Strokers co-director Lauren Kramer