Stroke wise

2012-01-18T12:14:00.001-08:00

Every 40 seconds someone in the United States has a stroke. Stroke is a leading cause of disability in the US and Canada.

"Stroke wise" is my attempt to help fellow stroke-survivors to learn about their symptoms, to get support, and to get better.

You survived it. Now you can get better.

Disability Rights

2012-01-18T12:12:00.000-08:00

Your legal, civil, and service rights

The federal government mandates the Protection and Advocacy (P&A) Systems in every state and U.S. territory as well as one serving the Native American population in the four corners region. This network is the largest provider of legally based advocacy services to people with disabilities in the United States.

The Protection and Advocacy system works to improve the lives of people with disabilities by:

guarding against abuse
advocating for basic rights
ensuring accountability in health care, education, employment, housing, transportation, and within the criminal justice systems.

To contact the agency nearest to you, go to this site and click the name of your state: http://www.ndrn.org/en/ndrn-member-agencies.html.

iPad apps

2011-10-26T10:19:00.000-07:00

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. In the next few years there will be many more apps written for these tablets.

Dedicted 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 will probably see improvement in the upcoming years. (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.

Note: If an app has been designed for the iPhone it will run on the iPad too, but auto-rotation might not work perfectly or not at all. Also, to take advantage of the iPad’s bigger screen, all iPhone apps can be scaled up to twice their size, using the 2x button in the lower-right:

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

http://www.aphasia.com/slp/SmallTalk_Apps

Proloquo2Go ($190)

The most 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/

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

MyVoice (free, the full version is $29/month)

An iPhone icon-based app that uses location-awareness, downloadable phrase books, auto-backup, and wireless customization from any web browser.

Visit myvoiceaac.com to edit a picture or to add custom content or choose from premade sets of words.
Can sync over the internet, so anyone can edit the MyVoice app.
Location-awareness finds relevant phrases (needs Wi-Fi or 3G connection).
Uses the natural sounding voices (only 1 is free; others are $5 per).
Also available for Android.

http://myvoiceaac.com/

Assistive Chat ($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

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

http://www.aphasia.com/slp/SmallTalk_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/

Dragon Dictation (free)

Uses voice recognition to type out what you say – or at least what it thinks you’re saying.

This app can be helpful for someone who is working to perfect their speech, but it probably is too frustrating otherwise.

Wi-Fi or 3G connection is required.

http://www.nuancemobilelife.com/apple/dictation.html

Comprehension TherAppy ($25)

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 ($25)

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

Speech4Good ($30)

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
Social media integration (Facebook, Twitter, and Email)
Email your sessions’ 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! ($40)

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 ($140)

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

iTunes also has a free Lite version that contains only words thatbegin with the letter W. (For either the Lite version or the full one, search for Speech Sounds in iTunes.)

Writing TherAppy ($20)

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

Dexteria ($5)
Dexteria is a set of hand exercises (not games) that improves finemotor skills and handwriting readiness.

http://www.dexteria.net/

Memory Loss

2010-09-12T08:33:00.000-07:00

"Forget only those things that aren't worth remembering. "

Some memory loss after stroke is quite common. There are many ways your memory can be affected by stroke.

Verbal memory – memory of names, stories, and information having to do with words.
Visual memory – memory of faces, shapes, routes, and things you see.
Trouble learning new information or skills.
Unable to remember and retrieve information.
Short-term memory – you may be able to remember events from 30 years ago, but not what you ate for breakfast this morning.
A type of dementia called vascular dementia, which it second only to Alzheimer’s disease as a leading cause of dementia.

Many people recover at least some memory spontaneously after stroke. Others improve through rehabilitation.

Things to do to help with memory loss:

Try to form a routine – doing certain tasks at regular times during the day.
Try not to tackle too many things at once. Break tasks down into steps.
If something needs to be done, make a note of it or do it right away.
Make a habit of always putting things away in the same place where they can be easily seen or found.
Keep a notebook of information -- both important and trivial.
Create mnemonic devices to help remember tasks. For example, the phrase "ALL OK" might help you remember what needs to be done before he leaving: appliances (off), lights (off), locked (door), oven (off), keys (in pocket).
Take a class or computer program aimed at improving memory.

Medicines

2010-09-06T08:36:00.000-07:00

Side-effects or interactions between medicines may cause confusion, memory loss, insomnia, nervousness, hallucinations, or depression.

If you think your medicines are causing problems, notify your doctor. Always follow these guidelines:

Make sure to take in the prescribed dose at the scheduled time, including weekends and holidays.
Medicine should not be stopped because you are “feeling better.”
Never take more than has been prescribed, believing that “if so much is good, more will be better.”
Use a commercial medicine dispenser to help keep track of the medicine schedule.
It’s wise to carry some form of medical identification with you in case of an accident or emergency.

Your doctor is the best source to advise you or give you info about medicines, but the Internet also offers lots of info -- unfortunately, much of it false! If your want the find out something about a drug, stick to reputable sites like the following:

The National Stroke Assoc. has a helpful page on Medication Adherence, which talks about the importance of taking medications as prescribed, plus links to prescription assistance programs offered for stroke-related medications. (Because one reason for not taking meds is not being able to afford them.)

Also note these links to the common meds that stroke survivors often take:
for lowing cholesterol:

statins (e.g., Lipitor, Zocor)
Lipitor pills can be safely split

anti-clotting:

for high blood pressure:

many choices

for spasticity:

Botox

for depression/PBA:

many choices, but Celexa has also benefits with treating emotional lability
Nuedexta (for PBA only)

98 billion neurons are plenty

2010-06-10T17:58:00.000-07:00

This is your brain after a stroke.

There are over 100 billion nerve cells in the human brain. A typical stroke kills only 2 billion of them.

That's where neuroplasticity comes in. Neuroplasticity is the ability of our brain neurons to take on -- or change -- their functions. Neuroplasticity occurs during normal brain development when the immature brain first begins to form. But it also occurs after a stroke, as to compensate for lost function or to maximize remaining functions.

We use 100% of our brains, but which the neurons are used for which functions can change. This is why stoke survivors can get back functionality, like walking. The brain can simply re-route and re-use old neurons to new uses.

The best books about neuroplasticity:

Four principles of neuroplasticity

Use it or lose it: It has been shown that movement of the affected limb in hemiparetic stroke patients improved when they were forced to use the limb and overcome“learned nonuse.” This method, constraint-induced movement therapy (CIMT) is centered on massed practice and with the forced use of the affected limb. These principles have been applied to aphasia treatment as well in what is called constraint-induced language therapy (CILT) with encouraging results.
You’re never too old: The injured brain, regardless of age, is flexible and capable of change throughout its lifespan. This means you can improve both -- sometimes significantly -- many years following your stroke.
Repetition matters: Repetition is important in maintaining changes in the brain and their corresponding functional benefits. This supports the need for long-term, consistent use of a skill to produce lasting changes.
Intensity matters: The more intense the treatment, the greater the skill acquisition and change. Therapy provided at a higher frequency for a shorter period of time gets better results.

Research and development

2010-06-10T15:57:00.000-07:00

Researchers are always trying to improve stroke medications and therapies. Read all about it.

The Stroke Rehabilitation Evidence-Based Review comes out of Canada and reviews techniques, therapies, devices, procedures, and medications associated with stroke rehabilitation.

Taking part of a research trial is always an option too. The items on the Internet Stroke Center's Clinical Trials and Drug Development page has all the links, and the National Stroke Association has a FAQ on them.

Getting back behind the wheel

2010-06-08T09:52:00.000-07:00

Are you driven to drive again?
Driving plays a big role in how we see ourselves and our emotional recovery. But changes due a stroke can challenge our continued ability to drive safely.

Check the second part of the presentation Managing Life at Home and in the Community called Public and Private Transportation Options to hear about determining your driving ability, accessing public transportation, using supplemental transportation programs, and overall safety issues.

Here are some helpful links:

Association for Driver Rehabilitation Specialists
American Occupational Therapy Association
AAA Foundation for Traffic Safety (for senior drivers)
AARP (transportation and driving safety articles)
Area Agency on Aging (Eldercare Locator)

Modifying your car
State law may require that a driving rehabilitation specialist give a prescription for vehicle modifications. Any vehicle modification should be installed by a professional with special expertise in this area.

Most of these dealers belong to the National Mobility Equipment Dealers Association (NMEDA). When looking to purchase vehicle modifications, look for a NMEDA-QAP dealer. Your occupational therapist should be able to suggest mobility dealers in your area.

A brochure on car modification from NTHSA
DriveSharp software from PositScience sells three visual processing exercises from InSight visual processing program that are most important for driving for $89.

Tongue, lips, & swallowing

2010-04-14T17:50:00.000-07:00

The number of people who have difficulty swallowing after a stroke--dysphagia--may be as high as 65 percent. Dysphagia usually goes away over time. But another common problem called dysarthria, weakness of the tongue and lips causing slurred speech, may last.

Make you mouth and tongue stronger by doing some of the following exercises.

Mouth and lips exercises

Open and close your mouth slowly/quickly. Be sure your lips are all the way closed. Repeat.
Pucker your lips, as for a kiss, then relax. Repeat.
Spread lips into a big smile, hold then relax. Try to make both sides of your mouth even. Repeat.
Pucker, hold, smile, hold. Try to make both sides of your mouth even. Repeat this alternating movement without holding.
Close your lips tightly and press together. Hold for 3-5 seconds. Relax and repeat.
Move your jaw from side to side as slow as you can. Relax and repeat.
Puff your cheeks up with air. Hold the air in for 3-5 seconds. Try not to let the air escape out of your lips or nose. Relax and repeat.
Tap your right cheek with your index finger while holding air in your cheeks. Try not to let air escape through your lips or nose. Relax and repeat.

Tongue exercises

Stick out your tongue so that it is in the middle of your mouth and it does not go off to the side. Hold that position for 3-5 seconds. Relax and repeat.
Stick out your tongue and move it slowly from corner to corner. Relax and repeat. Repeat moving your tongue quickly.
Stick out your tongue and try to touch your chin with the tongue tip. Relax and repeat.
Stick out your tongue as far as you can and try to reach your nose with the tongue tip. Don' t use your bottom lip or your fingers to help. Hold that position for 3-5 seconds. Relax and repeat.
Hold a spoon steady and upright (like a popsicle). Push your tongue tip against the back of the spoon. Relax and repeat.
While holding your head steady, pretend to lick a sucker moving the tongue tip from down to up.
Move your tongue all around the inside of your lips in a circle as completely as you can touching the upper lip, corner, lower lip, and corner. Relax and repeat. Do the same exercise moving your tongue around the outside of your lips.

Questions and answers about sex

2009-12-18T22:07:00.000-08:00

Sex is often on a survivor's mind but not often mentioned.

"Will I have another stroke during sex?"

No. Unless you are high risk for a heart attack, there is no reason for not having sex. Ask your physician if you are concerned.

"Are my antidepressants I'm taking affecting my sex drive?"

Maybe. Many antidepressants have a side-effect for reducing libidos. Talk with your doctor about switching to medicines that have fewer sexual side-effects.

"Will we still be able to achieve sexual satisfaction?"

Yes, but it might be different. Sexual satisfaction, both giving and receiving, can be accomplished in many ways. Whatever is comfortable and acceptable between partners is normal sexual activity.

"Will it be like it used to be?"

Many couples find their sexual relationship has changed. But this might not be a bad thing. If you have limited movement or feeling on one side of your body, try a new sexual position. The key is being open about this and being open to change.

"What if I have an accident during sex?"

Make sure you gone to the bathroom beforehand. In-dwelling catheters can be taped out of the way or removed for a short time during sexual activity. If an accident happens, don't dwell on it. Try to treat it matter-of-factly.

Here are some good articles:

Strokes and vision

2009-12-10T18:52:00.000-08:00

Not seeing the whole picture?

Up to a quarter of stroke survivors may have some vision loss. Improvement usually takes place in the first months after a stroke. Many types of vision loss can occur, but the most common is loss of half of each eye’s visual field (called hemianopia). Some people do not even recognize that they can now see only half of what was seen before; this is called "visual neglect."

People who have this problem usually had a stroke on their right side of their brain and suffer from hemianopia on their left side of their field of vision, like this:

left-side hemianopia visual neglect

Tips on working on left-side hemianopia and neglect:

Keep trying moving your eye and head to the left side.
Walk around the room toward the left side.
Use a flashlight aimed alternately toward each foot while walking.
Do daily crossword puzzles and play card games, to involve sensory input with tactile input.
Have your family and friends sit on the left side to you.
Try to look toward the left with your eyes closed. Then when you think you are looking left, open your eyes, so that you can see how far toward left your eyes are actually postured.
Wear a wristwatch that can beep at intervals to remind you to scan toward the left.
Use a strip of sandpaper at the left margin of a book to use tactile reinforcement to help looking at the left side.
Try turning a page at a 45-degree angle.
Circle the first word and the last word of each line in a magazine article.
Name the first and last items on shelves.
Try doing the above eye exercises while listening to music you like. Why? Read this interesting study.
Consult with a neuro-ophthalmologist, who might outfit you with field awareness press-on prisms.

Vial of Life forms

2009-12-02T10:07:00.000-08:00

The Vial of Life program can speak for you when you are unable to speak for yourself

The Vial of Life program allows you to provide medical information in advance that can be used by emergency personnel in the case of an emergency.

The program consists of a container (the "vial"), inside which is placed a form which has been filled out stating the health status of the individual and current medications being taken. The container is usually placed in the on the refrigerator. Stickers are placed in the front window of the home so that responding emergency personnel will know to look for the it. The information contained within the vial will provide pre-hospital and hospital providers with essential details that will aid in providing appropriate medical treatment.

You can fill out this online form or you can order a form from any participating Vial of Life organization. It is important to keep this form up to date. So you might like to keep this form on your own hard disk instead of redoing it from scratch every time something changes. In this case, you can download this PDF file, fill it out on your computer, and print it out at home.

Stoke survivor online community

2009-11-21T13:57:00.000-08:00

Check out these online communities for stroke survivors.
Find out you are not alone!

DailyStrength has an active online stroke-support group.
StrokeSurvivors International communicates with each other through an email group on Yahoo.
There are many other stroke groups on Yahoo.
The Stroke Network can provide online support to stroke survivors and stroke caregivers of adult stroke. Their services include chat sessions, instant messages, and a message board with several forums relating to topics important to stroke survivors and stroke caregivers.
The American Stroke Association has a search page where you can enter your zip code and a mileage radius to find stroke groups near you.
Facebook has several active groups as well, and many of them are represented in the list in StokesSuck.com.
Stroke Awareness for Everyone provides and manages several support and discussion email lists. To join, send an email to join_list@strokesafe.org. Be sure to indicate which lists you want to join, and whether you are a stroke survivor, a caregiver, or have some other interest in learning about stroke.
The National Aphasia Association lists many aphasia community groups, organized by state.

You may also want to start a support group yourself. To do this, look the tips in the 30-page Successful Stroke Support Groups by the American Stroke Association.

Improving shoulder pain

2009-11-09T17:09:00.000-08:00

Many stroke survivors develop shoulder pain. You can try these simple exercises to lessen the pain.

This pain is called shoulder subluxation or separation and is where the shoulder joint slides partially out of place, causing the shoulder to droop.

Note: Start slowly to avoid making it worse. Always check with your therapist before doing these -- or any -- exercises.

First, try these exercises with little or no weights:

1. Scapular retraction. With arms at your sides, pinch shoulder blades together:

2. Scapular protraction. Holding light weights, try to push arms up toward ceiling. Keep your elbows straight and your back against the floor:

3. Vertical raises. Lying on your stomach with the your arm off the edge of a bed or table, slowly raise your arm backward, hold, and return:

4. Prone rowing. Lying on your stomach with the your arm off the edge of a bed or table, slowly raise your elbow as high as possible, hold, and return. Hold a light weight if possible:

Here are some one-sheet posters the you can click and then print:

Exercises for getting your shoulder back in shape:

click & print

Exercises for your elbow:

click & print

Shoulder exercises for shoulder separation:

click & print

Frozen shoulder is a condition characterized by stiffness and pain in your shoulder. Some stroke survivors develop it by having their arm in a sling for a long period of time or immobilized in a specific position for a prolonged period. Treatment for frozen shoulder usually involves stretching exercises

To deal with frozen shoulder:

click & print

In addition to some light weights for the above exercises, you can also buy a door pulley and some special rubber bands in order to perform the additional exercises below.

Door pulleys from Amazon or from Sammons Preston.
"Thera" rubber bands:
(or Patterson Medical for other options)

You can try these simple exercises with these pulleys and bands to strengthen your shoulders:
A. External rotation:

B. Internal rotation:

C. Flexion: Pull down on the pulley with your good arm. This will lift your affected arm up. Pull it as high as you can without pain. Hold. Relax and repeat.

E. Abduction: Sit so that your affected arm is closest to the door. Pull down on the pulley with your good arm to raise your other arm up as high as possible without pain. Hold. Relax and repeat.

E. Horizontal abduction:

Hand exercises

2009-11-09T15:22:00.000-08:00

Try to do some of these every day

Shuffle cards and deal one by one.
Practice lacing and tying a bow on a shoe.
Tie knots and untie them.
Pick up coins, buttons, marbles or other miscellaneous objects from a "junk drawer." (Try sorting objects into small containers.) Try using tweezers to do this.
Take a handful of coins, marbles, seeds, nuts, bolts, etc. and try to drop them from your hand at one time.
Hold an object in your hand and rotate it in as many directions as possible.
Squeeze clay into a ball or roll it on a table into a "snake." (You can buy special thera putty for this.) Or print out these exercise sheets: one, two, or three.
Crumble a piece of paper or cloth into a small ball with one hand.
Button and unbutton buttons.
Open and close safety pins; try making a chain.
Screw and unscrew large/small wing nuts from bolts.
Use a screwdriver in both hands and practice screwing/unscrewing various sized screws.
Put away the silverware from the dishwasher.
Play dominoes/checkers/Scrabble/jigsaws etc. Stack checkers or coins as high as possible. Make a house of cards.
Do any handicraft of your choice: macrame, woodwork, tile projects, model kits, knitting, etc.
Put a key into lock and turn it back and forth.
Unscrew lids of jars.
Turn a door handle.
Pour water into a jug and then pour it from the jug and into a cup.
Write or type something -- anything. You print out these worksheets to practice your handwriting: practice cursive or practice printing.

You can also buy a hand exercisers, which you can use them like this:

Here are some other hand excersers you can do (click the image and then print, is you want).

And here are some things you do do with clay or "thera-putty";

If your affected hand becomes swollen from because you are not using it, have someone massage it using the "retrograde" technique (gently but firmly massaging from the fingertips towards the elbow to assist circulation and movement of the fluid back towards the heart.)

Caregivers for stoke survivors

2009-10-23T17:29:00.000-07:00

Tips and info for stroke caregivers

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.

Ten Guidelines for Interacting with a Stroke Survivor:

Publications, handbooks, and newsletters:

A 42-page Stroke Caregivers Handbook is downloadable for free in PDF format. You can also download a text-only version of individual chapters, with no pictures or special formatting.
You can sign up for a free monthly caregiver e-newsletter from the American Heart Association.

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:

Caregiver support programs in each of the 50 states and the District of Columbia.
Family Caregiver Alliance was the first community-based nonprofit organization in the country to address the needs of families and friends providing long-term care at home. It also oversees Link2Care, an Internet support and information system for clients of California.
In San Diego, the Southern Caregiver Resource Center helps families and caregivers by providing services for adults with chronic and/or disabling conditions.
Caregiver Resource Network contains resource materials as well as programs available in Michigan.
Visit the National Family Caregivers Association.
See the Well Spouse website for the many facets in supporting a loved one.

Stroke sites and information

2009-10-23T15:49:00.000-07:00

I can recommend the following sites for information:

Aphasia info:

Regional groups:

In Canada:

And here some other lists of links:

A multi-page list of lots of stroke-related resources.
Stroke and brain injury links from the federal ABLEDATA site.

To get the free Adobe Reader to read the PDF format, which most sites use nowadays, click here.

Emotional issues and depression

2009-10-07T17:42:00.000-07:00

Being a stroke survivor can be emotional

Emotional lability / PBA

Emotional lability is a condition that causes sudden and unpredictable episodes of crying, laughing or other emotional displays. It is also called involuntary emotional expression disorder (IEED), emotional incontinence, or pseudobulbar affect (PBA).

Many stoke survivors experience it. It is thought to impact more than 1 million Americans who are stroke survivors or survivors of other traumatic brain injury or neurological diseases.

There are things you can do to cope with emotional lability:

Tell people that you cannot always control your emotions and that the emotions you show on the outside don’t always reflect how you feel on the inside.
Distract yourself. If you feel an emotional episode coming on, try to focus on something unrelated.
Note the posture you take when crying. When you think you are about to cry, change your posture.
Breathe in and out slowly until you are in control.
Relax your forehead, shoulders, and other muscle groups that tense up during an emotional episode.

Visit this website for more information on PBA.

Depression

Depression can be caused as an understandable response to the loss and impairment that a stroke produces. It can also caused by biochemical changes in the brain caused by the stroke. In either case, it is important to address it. For a dry but informative talk on depression after stroke, see the iHope presentation from the National Stroke Association.

Emotional lability / PBA vs. Depression
For the differences, see this chart:

Risk factors for strokes

2009-10-07T17:20:00.000-07:00

Know the facts. You can increase your chances to avoid another stroke.

Controllable risk factors:

High blood pressure -- the leading cause of stroke and the most important controllable risk factor for stroke
High cholesterol -- can be lowered though diet or medication
Diabetes -- can be treated
Smoking -- smoking doubles the risk for stroke
Alcohol use -- only drink 1 glass per day of beer or wine
Obesity -- watch what and how much you eat
Atrial fibrillation -- can be treated

Uncontrollable risk factors:

Age -- The chance of having a stroke approximately doubles for each decade of life after age 55.
Gender -- Strokes are more common in men.
Race -- African Americans and Hispanics are higher at risk.
Family history -- Your stroke risk is greater if a parent, grandparent, sister, or brother has had a stroke.
Previous stroke or TIA -- Your stroke risk goes up if already had one or mini-stroke (TIA).

Stroke-related online videos

2009-10-07T14:13:00.000-07:00

View videos about various aspects of strokes

The types of stokes explained:

Dealing with tone (spasticity) in an arm or leg.
Stroke Recovery: Immobilization Therapy
The Basics of Physical Rehabilitation
Jilll Bolte Taylor is a neurologist and a stroke survivor. Check out her description of her experience:

An interview with journalist Mark McEwan about his stroke.
How to do simple exercises at home and at the gym:

Know the signs of stroke: Know Stroke.
Lots of videos on the HealthVideos site (but beware of commercials!), like the importance of rehab, muscle tone, mobility, etc.
Many videos are collected and categorized on the Disabled World website.
And many more videos available on YouTube.

In -- and out of -- wheelchairs

2009-10-06T09:58:00.000-07:00

Getting use to a wheelchair -- and leaving it behind

Exercises

If you are close to walking again, you can do these strengthening exercises -- with supervision. (Click on the image, and print it out.)

Getting Up after a Fall
If you fall, pick yourself up! Here's how:

Foot drop

Many stroke survivors suffer from foot drop, which means they have a hard time lifting the front part of their foot, thereby dragging the front of the foot on the ground when walking. There are many approaches to the problem. The usual solution is a brace, or ankle-foot orthosis. Or you can try some of these inventions and gadgets, most of whom using a Functional Electrical Stimulation system.

WalkAide uses functional electrical stimulation for improving walking.
NESS L300 Foot Drop System uses stimulation to lift your foot.
The Step-Smart claims to be the only complete solution for drop foot.
Dorsi-Strap for Foot Drop works with your own shoes.

Wheelchairs

If you are in a wheelchair -- even temporarily -- you might want to browse the Wheeled Mobility page of the ABLEDATA site. And to spruce up your wheelchair, check out PimpMyChair.com.

Consider making these modifications throughout the house as well. You may want to look at the first part of the presentation called Bathroom and Kitchen Home Modifications to see pictures of what to avoid and helpful design changes for a safe and usable environment.

Getting into and out of a car is always a pain. Here are the basic steps:

Ramps

Read this free flier (in PDF format) all about Ramps and Accessible Thresholds. Then you can go to ramp page at Amazon or at Patterson Medical to purchase them.

Railings / grips

See the good selections as Patterson Medical and Home Depot.

Tips

If you are trying to walk again, always step up with you good leg first, and down with the bad. (Remember, "the good one goes to heaven.")

Speech, communicating, & aphasia

2009-10-06T09:53:00.000-07:00

Learning to communicate again

At least one-fourth of all stroke survivors experience language impairments, involving the ability to speak, write, and understanding spoken and written language. Over 1 million people in the US are stroke suvivors with aphasia.

For some people, speaking is not affected or comes back soon after. But in my case, I had at least three kinds at speech problems:

expressive aphasia (knowing the concept but not being able to come up with the words)
verbal apraxia (knowing the words but not being able to remember how to say them)
dysarthia (knowing how to say the words but not being able to say them clearly due to muscle weakness)

About one million people in the United States currently have some type of aphasia. There are many types of aphasia, classified into fluent and non-fluent. Two types are Wernicke’s aphasia (a fluent type) and Broca’s aphasia (a non-fluent type).

Damage to the the side of the brain may result in a fluent aphasia called Wernicke’s aphasia. People with Wernicke’s aphasia can speak well but their language has no discerable meaning, or might add unnecessary words, and even create made-up words. People with Wernicke’s aphasia are often unaware of their mistakes. These individuals usually have no body weakness because their brain injury is not near the parts of the brain that control movement.

Damage to the frontal lobe of the brain may result in a non-fluent aphasia called Broca’s aphasia. People with Broca's aphasia can only speak in short phrases but are produced with great effort. They often omit small words. People with Broca’s aphasia typically understand the speech of others fairly well. People with Broca’s aphasia often have right-sided weakness or paralysis of the arm and leg because the frontal lobe is also important for motor movements.

These are some helpful books and aids -- in addition to a good speech therapist:

Parrot Software has many different programs for aphasia. You can buy a individual progam outright or, better yet, you can use the online versions of many of their programs for $25 per month. They offer a free one-week trial too.
The University of Iowa has an impressive website that has an audio-visual description of every sound!
The videos on Rachel's English are good for apraxia.
Check out the Aphasia Software Finder for links to helpful programs.
If you are working on a troublesome sound, you might try some tongue twisters that use that sound. And here is another tongue twister list in PDF format that was compiled by a speech therapist I know.
Nothing can beat Scrabble for helping with word retrieval:

Speech After Stroke: A Manual for the Speech Pathologist and the Family Member (if you are not going to a speak therapist, this is great book you can use):

LipSync provides practice speaking sounds using 42 photo cards with a close-up view of a mouth that moves:

Sing-alongs are great therapy! You can try it wth Mamma Mia or American Idol:

Melodic Intonation Therapy
In some cases, people with aphasia can learn to speak by "singing out" the words. This is called Melodic Intonation Therapy. Here is a video of such a speaker:

And here is a 30-min interview with this amazing person (audio, no video).

In the months since a bullet to the brain left her in critical condition, Congresswoman Gabby Giffords has relearned how to talk -- a feat partly credited to music therapy.

Here are three videos of a young woman who had a stroke at 19:

Nine months after the stoke:

After a year and a half:

After two years:

Tips for caregivers 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. Never use baby talk.
Don't raise your voice; they are not hard of hearing.
Minimize distractions and background noise, such as a loud 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.

For more info on speech and aphasia, see the page on web links.

Improving your bathroom & kitchens

2009-10-06T09:48:00.000-07:00

Make your kitchen & bathroom safe and convenient -- instead of the most dangerous rooms of the house

First, read these helpful guides on bathing and toileting. And you may want to look at the first part of the presentation called Bathroom and Kitchen Home Modifications to see pictures of what to avoid and helpful design changes for a safe and usable environment.

Also see the Barrier Free Architecturals site, which is a distributor of architectural products to improve the quality of life of the disabled in the kitchen or bathroom.

Kitchens

Read this good article from StrokeConnection magazine about kitchen makeovers.
GE has some good suggestions about designing a kitchen to adapt to everyone needs.
The Disabled Hands website has several kitchen gadgets for those with diminished hand function, as does the Disabled World site.

Bathrooms

Consider these items:

shower chairs (from Amazon) and more options (from Sammons Preston).
toilet handles from Amazon (from Amazon) and more options (from Sammons Preston)
portable urinal (from Amazon)
grab bars at Sammons Preston or at Home Depot (don't rely on towel racks!)
slippers for the shower
call button / bell (for emergency):

My MRI, my brain, & my rehab

2009-10-06T09:28:00.000-07:00

I had my stroke on 7 March 2008, leaving me unable to speak and my whole right side paralyzed.

Here is my brain right after the stroke (bright spot is the damaged area). (For the functions for various areas of the brain, and the problems that can result when those areas are damaged, you can refer to this discussion and chart. For most strokes, see the frontal lobes.)

Here are some pictures of me during my rehab.

Physical rehab (PT, learning to walk):

Speech rehab:

Occupational rehab (OT, hand):

For comments on this site, feel free to email me at valiulis@gmail.com.

Improving memory, attention, and reasoning

2009-10-06T08:55:00.000-07:00

You can improve your memory and overall mental processes with these computer programs (and they're fun too!)

Mostly free, online mind games:

Lumosity (visitors have free but limited access to online courses). You might want to look at their course called "Lumosity TBI," which is for the rehabilitation of mild traumatic brain injury. Though it is aimed at combat-related cognitive problems, it might be helpful to stroke survivors as well.
Fit Brains offers various free online games aimed at memory, language, concentration, and visual-spatial relationships.
SharpBrains have a list of 50 online teasers and games categorized under memory, attention, language, etc.
Posit offer some free brain games, but mostly sells their standalone programs, below.

Programs you can buy:

CogniFit Personal Coach is an online customized series that you can subscribe to ($19.95/month).
Posit programs are the most expensive ($395) but most famous since they were highlighted in a PBS special in 2007.
Parrot Software has over 75 different programs for communication, memory, cognitive reasoning, and attention rehabilitation. You can buy a individual program outright or, better yet, you can use the online versions of all 75 programs for $25 per month. They offer a free one-week trial too.
Other programs you can buy for you computer:

Other tips you might try:

If you are on the computer often, you can use free electronic calendars with alarm reminders. They can be used not only for appointments but "things to do" as well. Examples are Google Calendar, Yahoo Calendar, or Windows Calendar.

Working on stamina, mobility, and coordination

2009-10-06T08:26:00.000-07:00

Try some of these things as you regain mobility and coordination

First to do: Join a gym. If you are uncertain what to do, join a gym that offers free personal trainers. They can help a lot.
A a set of "thera" bands can get help at home, like:
(or Sammons Preston for other options)
Hand exercisers (from Amazon)and other "handy" devices (from Sammons Preston for fingers and hands).
A great -- and fun -- home exersiers is the Wii. I especially think the Nintendo Wii Fit to helpful:

Books, magazines, pamphlets, & catalogs

2009-10-02T20:18:00.000-07:00

Things you can read to learn more strokes, the brain, and your recovery

Books

Stronger After Stroke: Your Roadmap to Recovery (practical yet inspirational)

Stroke for Dummies (silly title, good content):

Living with Stroke: A Guide for Families (recommended):
My Stroke of Insight: A Brain Scientist's Personal Journey (an idiosyncratic, personal story):
The Brain That Changes Itself: Stories of Personal Triumph from the Frontiers of Brain Science (readable and fascinating, about how the brain can recover from stokes -- and much more):
The Mind and the Brain: Neuroplasticity and the Power of Mental Force (same topic as above, but a lot drier):
The Man Who Mistook His Wife For A Hat: And Other Clinical Tales (the classic about the brain foibles):
Phantoms in the Brain: Probing the Mysteries of the Human Mind (more medical tales about the brain; very interesting):

Pamphlets

A 42-page Stroke Caregivers Handbook is downloadable for free in PDF format. For text-only versions of individual chapters (no pictures or special formatting), click here.
HOPE: The Stroke Recovery Guide is an excellent 65-pg booklet from the National Stoke Assoc. You can download it for free in PDF format or you can order a copy for $5.
A 17-page Recovering After a Stroke: A Patient and Family Guide offers practical advice and information on a wide range of topics (download it for free in PDF format).
The National Stroke Association has over a dozen factsheets on stroke recovery that you can download for free in PDF format or in Word format.
A handy list of publications from the National Aphasia Association and others.

Catalogs

“Enrichments: Special Purpose Products for Enhanced Living” catalog request
"Functional Solutions" catalog request

Magazines

StrokeSmart magazine (to get the free subscription)
Stroke Connection magazine (free for one year)

Tricks and gadgets for a one-handed life

2009-10-02T19:02:00.000-07:00

Living life one-handed -- or mostly so

The problem: Almost 40% of people who have a stroke continue to have excessive tone (also known as "spasticity") one year later. Excess tone keeps you from using both arms effectively.

Upper limb spasticity results in muscle stiffness and muscle tightness in the elbow, wrist and fingers. People with spasticity may have an arm pinned against their chest, a flexed elbow or wrist that can't be easily straightened, or a clenched hand.

For more about upper limb spasticity/tone, see:

The Mobility section on the National Stoke Association site
Open Arms (sponsored by Botox)
Exploring Spasticity
We Move website
the Spasticity Answers And Stroke website (sponsored by Botox)

If you are having trouble putting on a shirt by yourself, try these steps (click on a picture and the print each one):

There is a lot of gadgets out there that can make your life easier living one-handed. For ideas, see the Sammons Preston catalog and the Disabled Hands website.

Below are some of my favorites.

help with buttons
buy new Velcro shoes (Zappos.com has a large selection)
turn your lace-up shoes into slip-ons (with Tylastic shoe laces)
electric toothbrush (from Amazon)
one-handed typing with the Half-QWERTY Keyboard
pickup gripper, playing card holder, long shoehorn, and a one-hand flosser: