Young Stroke Survivor Kit - RECLAIMING YOUR LIFE
Practical & usable resources for Young & Midlife Stroke Survivors,
Caregivers and Families for the “new normal” following stroke. This is
to be used once discharged to home/rehab - “now that we’re home,
NOW WHAT???”
Specific aspects of recovery:
Access to Healthcare Services & Financial Assistance
(Finding a healthcare provider; Social Security Disability;
Vocational Rehabilitation)
Driving after stroke
Psychosocial changes (Depression; Stinking Thinking)
Family Life (Parenting; Sexuality after stroke)
Veterans
Drug abuse & stroke
Therapy APPS for phone/Ipad
ACCESS TO HEALTHCARE SERVICES & FINANCIAL ASSISTANCE
Finding a primary care provider who will see you:
INTEGRIS Healthline - 405-951-2277 - ask for names & office phones of available Primary Care
Physicians or providers.
Oklahoma Federally Qualified Health Centers
o Non-profit community health centers which provide affordable & accessible health care
in Oklahoma City and Southwest Oklahoma.
o Will accept Medicare, Medicaid, most major insurance, and uninsured patients can pay
on sliding-fee scale (based on income & family size.) Payment plans also available.
o
20 Primary centers throughout Oklahoma
o
Total of 88 sites or clinics in Oklahoma
o
o
more information and clinic sites in the OKC Metro area.
Crossings Community Clinic - 10255 N. Pennsylvania Ave., Oklahoma City, OK 73120 -
405.749.0800.
Applying for Social Security Disability:
You should apply as soon as you become disabled.
Can apply online at https://www.ssa.gov/disability/disability.html.
Can also apply by calling toll-free, 1-800-772-1213. Representatives there can make an
appointment for your application to be taken over the telephone or at a convenient
Social Security office.
For more information, see attached handout from Social Security Administration.
Applying for Medicare and/or Medicaid:
See if you are eligible for Medicare and/or Medicaid health coverage because of your stroke.
Applying for Medicare and/or Medicaid - see attached handout for more information.
Assistance paying for medicines:
Take the medicine your doctor prescribes; if cost is a problem, talk with
your doctor about other options. Assistance is available for many expensive
prescription medicines.
If you are on Medicare or Medicaid, go to your local Social Security office
and ask if you are eligible for Medicare Part D. This plan helps pay part of
the cost of medicines.
Ask your doctor for generic medicines whenever possible. Lists of less-
expensive generic medicines are available at most pharmacies, as well as
online; for example from INTEGRIS Southwest Plaza Pharmacy.
Pharmacists are a good resource for information about medicine costs and
correct usage of medicine such as when to take with food or reactions to
watch for.
Helpful websites for getting assistance with cost of medicines:
Assistance with durable medical equipment for home:
The program is designed to reuse durable medical equipment (DME) that is no longer needed and
reassign it to Oklahomans who are in need at no cost.
Affordable Assistive Technology for disabilities of all ages - STATEWIDE resource
Device Demonstrations; equipment and device reuse; equipment and device short-term loans
Durable Medical Equipment Reuse Program - 1-800-257-1705
Types of equipment which MAY be available at no charge:
o Bath benches
o Blood pressure monitors
o Commodes
o CPAPs
o Gait Trainers
o Hospital Beds (Electric & Semi-Electric)
o Knee walkers
o Nebulizers
o Patient Lifts
o Quad Canes
o Scooters
o Shower Chairs
o Standers
o Walkers
o Wheelchairs (Manual & Power)
Access to outpatient speech therapy:
UCO Speech and Hearing Clinic - Edmond, OK
o Speech therapy - sliding scale
o
14 week fall and spring session; 7 week summer
o
Waiting list - get on early
o University of Central OK campus - Edmond, OK
o
405-974-5419
• John W. Keyes Speech and Hearing - OUHSC OKC
o Speech therapy - $80/session, may bill insurance, can request sliding scale
o 14 week fall and spring session; 7 week summer
o Short waiting list - call to get on list
o
1200 N. Stonewall, Oklahoma City, OK 73117
o
405-271-2866
OSU - Tulsa Speech-Language-Hearing Clinic - Tulsa, OK
o Evaluation, treatment, screening, consultation
o Sliding scale - No waiting list
o
700 N. Greenwood Ave., North Hall 391, Tulsa, OK 74106
o
918-594-8573
OSU - Stillwater Speech and Hearing
• Evaluation, treatment, screening, consultation
• Sliding scale - also take Medicaid and insurance - Medicare scholarships available - No or
short waiting list
o
042 Murray Hall at University and Monroe St., Stillwater, OK 74074
o
405-744-6021
Return to Work
Vocational Rehabilitation (VR) in the Oklahoma Department of Rehabilitation Services (DRS) helps
Oklahomans with disabilities prepare for, obtain or keep jobs for those who want to work. Basic VR
services provide counseling and guidance with job placement. Employment programs introduce or
reinstate people with disabilities back into the workforce.
•
Types of services provided by VR:
o
Vocational, medical or psychological assessments
o
Career counseling & guidance
o
Physical & mental restoration to improve employment opportunities
o
Rehabilitation equipment & devices
o
Supported employment
o
Vocational training
o
College education
o
On-the-job training
o
Job placement assistance
o
Specialized services for blind, deaf, hard of hearing, those with speech impairments
•
Information about OKDRS:
o
o
Local phone is (405) 951-3400
o
Toll-free hotline - 1-800-487-4042.
o
Spanish speaking toll-free - 1-800-523-1565.
•
To apply for VR services:
o
Call hotlines for DVR office nearest you by zip code
o
Can get application by walk-in or mail from local office, fill out & return to local office, then
interview w/counselor
o
Can apply online - www.okdrs.gov - follow up with local office for interview w/counselor
•
Oklahoma Works:
o
o
Job search assistance
o
Apprenticeship
o
Career planning & assistance
o
Unemployment; rapid response for layoffs & plant closure
•
Information for Oklahomans seeking a job:
o
o
Employment and training
o
Unemployment benefits
o
Labor market data
•
Applying for Disability:
o
There are programs available for the disabled to help with monthly payments to those who have
little or no income/resources - Supplemental Security Income (SSI)
o
There is an income earnings-based program for a disabled worker, spouse and family - Social
Security Disability Income (SSDI).
o
Apply through the Social Security Administration
o
o
You can also apply: By phone - Call 1-800-772-1213 from 7 a.m. to 7 p.m. Monday through
Friday. If you are deaf or hard of hearing, you can call TTY 1-800-325-0778. In person - Visit your local
Social Security office. (Call first to make an appointment.)
Driving After Stroke
Driving is often considered to be an essential part of daily life. It’s not something anyone would
want to give up easily. It gives us an easy way to get around, be independent and feel
confident.
However, driving is a very complicated process, and it requires ability to process information
easily and also mobility to drive safely. Many stroke survivors can regain their ability to drive -
almost 80 percent of stroke survivors who LEARN TO DRIVE AGAIN can drive safely and
successfully. But this may not apply to all stroke survivors. If a survivor has problems with
visual perception, it may be more difficult to relearn safe driving skills.
A driving test by a driving instructor or stated licensed agency will be able to determine if the
survivor can drive safely. Look for a driving instructor who is trained in driver retraining after
stroke and/or brain injury - their expertise is not often found in regular driving schools.
Driving Training usually includes:
Assessment of your functional ability
Reaction time testing
Vision & visual perception testing
In-class teaching
Driving simulation in classroom
Transfer training to car
On-The-Road, in-car training
Loading wheelchair instruction
Options and solutions for driving with physical problems :
If you can only use one hand, a spinner knob can help. It is attached to the steering
wheel, and lets you steer the car more easily with just one hand. Helpful options if you
can’t use the right arm and leg are left gas pedal, and the spinner knob. Hand controls
for driving the car may help survivors who cannot use their legs.
If you cannot use one leg, an automatic transmission will be much easier than a
standard shift transmission.
Problems reading or understanding what is read can be helped by learning to read the
road sign symbols. This problem needs careful training and evaluation for safety.
Directional signal extenders can help if you cannot use your left arm or hand.
HOWEVER, if you have problems judging distance or have a loss of vision, you should
not drive. This will put yourself and others on the road in danger.
Ask your occupational therapist about driving - they may be able to help with your
driving evaluation, training and community resources, and guidance to learn to drive
again.
Community Resources for Driving and Transportation:
(a)
Driver retraining programs in the OKC Metro area:
Dan Lutz Rehabilitative Driving Program - Does assessment &retraining ; teaches
adaptive driving
o John McGivern - contact & instructor
o
2404 Valley Brook Drive; Edmond, OK 73034-4881
o
(405) 834-3877
Brown Driving School - Can do driver assessments and retraining.
o South Oklahoma City / Moore
12211 S Pennsylvania Ave Oklahoma City, OK 73170
(405) 692-4844
o Norman
210 36th Ave SW #1D Norman, OK 73072
(405) 364-0000
o Mustang / Yukon
120 E Trade Center Terrace, Suite 104 Mustang, OK 73064
(405) 376-6464
Look for other community resources that can help if you don’t drive.
OKC EMBARK Senior Services (405) 297-2583;
OKC RSVP Provide-A-Ride (405) 605-3106;
CART (Cleveland County Area Rapid Transit) - (405) 325-2278
OKLAHOMA statewide - United We Ride1-844-656-9743 (1-844-OKMYRIDE).
Handicapped Parking Permit - applications available from Oklahoma Department of
Public Safety - https://www.dps.state.ok.us/forms/.
DEPRESSION After Stroke
Depression can be a natural response after stroke & disability. Young stroke survivors go
through a process of grieving, loss and isolation. Specifically, they are grieving the loss of
self/identity, mobility, previous roles (parent, worker, spouse), activities, social experiences,
and most importantly, their independence. It can be overwhelming, and can affect everyone
involved. Some depression or even despair is a normal part of the grieving process after a
stroke. However, sometimes it becomes serious enough to affect daily function and interfere
with your recovery. Identify warning signs of depression so you can get help to feel better.
What causes depression after stroke?
Physical changes in natural chemicals in the brain from the stroke can cause depression,
as well as the emotional response from loss or change in family and work roles because
of the stroke.
Risk factors for depression after stroke can include paralysis, not walking, loss of control
of bladder or bowel); fatigue; problems with speech or communicating; thinking or
memory problems; previous history of depression; alcohol or drug abuse; poor family or
social support.
Feeling of sadness, loss, despair or hopelessness that doesn’t get better over time
Can be overwhelming enough to interfere with daily life.
Cause for concern when feeling depressed or loss of interest in usual activities for
several days/week & lasts more than 2 weeks.
It’s NOT a sign of weakness or anyone’s fault - it just needs help to get better.
Symptoms of depression:
Feeling sad, blue, hopeless of down
Lack of interest or pleasure in usual activities
Feel guilty, like a failure or worthless, criticism
Change in appetite or sleep
Can’t concentrate
Withdraw from others
Think or talk about suicide
What to do about depression?
Get professional help as soon as possible. Remember - this is part of your recovery, not
a weakness to be avoided.
Antidepressant medicines can help - it may take a few weeks to feel much better.
Often combined with counseling or talk therapy.
Counseling can be very helpful with painful and/or self-defeating feelings by creating
new ways to look at yourself and your new life.
Be as physically active each day as you can. Schedule daily routine activities for
structure & purpose.
Set goals and find ways to measure your real accomplishments - even small ones count.
Get out & enjoy some social activity - this can help to stimulate and improve language
recovery, as well as feeling better about yourself.
Sex After Stroke
Recovery from stroke often involves resuming your healthy sex life. It’s important
to love and feel loved, physically and mentally. However, if there are changes or
difficulties having sex after stroke, talking with your doctor or a psychologist can
help.
Questions or concerns that come up after stroke can include:
Will I have another stroke if I have sex? Chances are low, but always talk
with your doctor before resuming your sexual life.
What if my partner feels differently about me now? It takes time to adjust
- so reassurance, sharing how you feel openly with your partner, simple
holding, cuddling and tender touch can help.
What if I have trouble talking or saying what I need to say? Gentle touch
can help show what you want to express.
Some ideas that can help:
Talk openly and honestly with your partner. This can help with your fears &
concerns.
Start slowly. Gentle touch or massage are ways to be intimate - find out
what feels good & tell your partner.
Plan ahead for sex - rest ahead of time so you’re not so tired or rushed. It
may just need more time now.
Be aware of the medicines you take. Some may make you less alert
(sleeping pills); others may reduce your sexual desire or cause impotency.
Talk with your doctor about these.
Find a position that feels comfortable. If you are now weak or paralyzed on
one side, you can change your position (like a side-lying position).
Take time to find out what works for both of you. If you don’t feel as much
on one side, you may need to remind your partner to touch you on your
non-affected side.
Making an extra effort at grooming and attractive clothing can help boost
your confidence and feel better, more attractive.
These ideas can help the caregiver to be a partner, not a parent.
Parenting After Stroke
Stroke survivors who are parents of younger children can have special challenges
with physical as well as thinking tasks, such as bathing, feeding, changing and
transporting your child. There are now a number of easier ways to help with
these tasks:
Disposable diapers with tabs
Warming a bottle of formula in the microwave (safer than in a pan of
boiling water)
Baby bathtub inserts can help keep baby safer.
IF the stroke survivor needs help with any of the childcare tasks, it may be
safer and easier to be the supervisor if possible.
Some ways to help keep the family strong together after the stroke can include:
Communicate. Make sure children have time and opportunities to express
their feelings and concerns.
Talk to your children at their level. Be open, sensitive and honest, and
approachable. Kids need information to cope with life’s changes so they can
understand what is happening to you.
Maintain routines within your family and make having fun part of the
routine. It helps to deal with the changes and uncertainty.
Let children be children. Remember your children are growing and going
through their own changes.
Be supportive. Don’t be overwhelmed by the whole situation or try to deal
with everything at once. Plan as a family to deal with each problem as it
occurs.
Empower your family. Children can be very creative and great problem
solvers. Use their talents.
Get help when you need it from family, friends and professionals, including
specific family and child service agencies which offer counselling and play
therapy.
VA Resources for Young & Midlife Strokes
VA Websites:
o Strategies for various problems & issues after stroke.
o RESCUE Fact Sheet Library
The RESCUE team has prepared 44 fact sheets that will help you with any
questions you may have. These fact sheets are divided into the following
categories:
General Stroke Information
Obtaining Good Healthcare & Information
Understanding How Caring for a Loved One Affects You
Caring for Someone with Physical Needs
Caring for Someone with Emotional & Behavioral Needs
Keeping Your Loved One Healthy
Helping Your Loved One Become More Independent
Finding Community Resources
Managing Financial & Legal Issues
National Center for Complementary and Alternative Medicine (NCCAM) -
STREET DRUGS & STROKE
Street drugs and abuse of medications have been linked to stroke in younger strokes. The drugs can
cause high blood pressure, spasms of blood vessels in the brain, blood clots in the brain, and bleeding in
the brain - all of which can cause strokes. Cocaine, amphetamines & methamphetamine, heroin, and
marijuana can all increase risks of having stroke. While we have no stats on how common it is for stroke
to hit a 1st or 2nd time user, we do know that the more times a person uses drugs, the higher the
chance of stroke.
Cocaine (crack, coke):
Increases stimulation of central nervous system - raises blood pressure, which can cause blood
vessel walls to rupture (bleeding stroke). Also can narrow the blood vessels, cut off blood flow
to brain & kill brain tissue (blockage stroke).
Raises blood pressure; heart rate; increases risk for seizure, stroke, heart attack & death.
Is sniffed, injected, and smoked.
Can cause a bleeding stroke within minutes of use, but majority of stroke happen w/in one hour
of ingestion. Can also cause blockage strokes and seizures.
Amphetamines (Methamphetamine, meth, speed, ice, uppers):
Have similar effects as cocaine on the body - especially raises blood pressure.
Causes the “fight or flight” response
Is sniffed, taken by mouth, injected or smoked.
Can cause both bleeding and blockage strokes, especially methamphetamine.
Heroin (smack, H, Mexican black tar):
Initial euphoria can be followed by severely slow heart rate & breathing (can be life-
threatening), drops blood pressure, nausea & vomiting.
Can be injected, smoked or sniffed.
Can cause blockage stroke immediately to more than 24 hours after use.
Marijuana (pot, weed, grass):
Initial increased BP, heart rate & appetite, dizzy, dry mouth, impairs short-term memory &
motor function, poor judgment. In high doses, paranoia & psychosis. Regular use associated
with increased risk of anxiety & depression.
Drivers who recently smoke marijuana 2 X more likely to have car accident than sober.
9% who experiment with marijuana will become addicted.
Can be smoked, made into tea or edibles (brownies).
So, where do you go from here?
Recognize that cocaine/crack/meth/heroin can all cause strokes
Treatment is not simple or easy, but it can work - if you will
Are you willing to quit & get help?
o Are you willing to stop using?
o Are you willing to maintain a drug-free lifestyle?
o Are you willing to live a productive functioning life?
ONLINE STROKE RECOVERY & RESOURCES APPS
Many young and mid-life stroke survivors are tech savvy, and the use of electronic technology
is part of their daily life. So, finding an app for your smart phone or electronic device could
be an easy, relatively inexpensive, and often enjoyable addition to your stroke recovery
resources.
Below are some examples of apps for speech and Aphasia (speech & language problems)
therapy that people can purchase and use to help with their speech & language challenges:
ParrotSoftware.com - large selection of speech therapy programs for different needs - can
customize to your current level of speech and need. Low monthly cost to use as many
TactusTherapy.com - different types of speech therapy programs - can purchase specific
therapy program or several programs.
Lingraphica - www.aphasia.com - communication devices, language and therapy apps, and
online practice activities for individuals with language and thinking disorders.
Lumosity.com - brain games and brain training.
Emergency Assistance Apps:
MobileHelp Alert Lite - www.mobilehelp.com. The most simplified version of MobileHelp Alert, this
level provides users with access to help via text messaging service. App is free. MobileHelp Alert -
more comprehensive service - monthly fee.
Haven from RapidSOS - www.rapidsos.com , which directly connects users with first responders -
small monthly fee.
Apps for IPAD: (Most are free or low-cost)
iName it by SmartyEars.com - name of items recall
Small Talk by Lingraphica (aphasia.com) - free communication and practice apps for finding
words & phrases
Chain of Thought - Word Association
Mind Games-Mind training-similar to Fit Brains from Rosetta Stone
Matches2-Memory and Visual Scanning
Scramble-Word Manipulation and Visual Scanning
7 Little words-Word Manipulation
Red Herring-Word Association
Word Wall-Word Association
WordBrain-Word Manipulation
Category Lite-Thought Organization
Fit Brains-This is a family of apps from Rosetta Stone. They are all types of skills such as working
memory, visual memory, logic, speed and focus.
Solitaire-Visual Scanning and Attention
Pattern Catcher-Visual Scanning
There are cognitive (thinking) recreational activities survivors can do at home such as:
Sudoku
Crossword
Word Search
Jigsaw puzzles
Reading
Trivial Pursuit
Various board games: Scrabble, Scattegories, Taboo, Pictionary, Family Feud, Wheel of Fortune,
Bananagrams, word shout, boggle
*Link Disclaimer: Links to information and Web sites outside of INTEGRIS Health do not indicate
an endorsement of products or services offered by the sites. In addition, these sites may have
privacy and security policies that are inconsistent with those of INTEGRIS Health.
Aphasia Apps
Talking Photo Apps are apps that allow you to take photos of various things and then attach words
or phrases. For example, you could take a picture of your dog and add the caption “this is my dog, Spot”
to help communicate some basic daily information. Great for common or favorite items. There are many
more of these apps than are on this list, ranging in price from free to about $20.
help with communication of basic wants and needs. They range in type, using words, pictures or
categories, and vary in price. Many of these can be expensive, so it would probably be best if you consult
with a speech therapist to see which one may work before spending the money to purchase one.
Lingraphica Small Talk™ (a family of apps including a basic AAC app and other speech-
TalkTablet:http://gusinc.com/2012/TalkTablet.html ($89.99)
($149.99)
AutoVerbal GuyTalk (some built-in phrases and words and the ability to type in phrases for it
image2talk (uses real photos and allows you to take and add your own photos):
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Text-to-Speech Apps are apps in which you type a message and then hit a button to speak the
message. Many of these are free. Just enter “type to text” in your browser’s search box.
Verbally (has basic words programmed and the ability to speak a specific message based on
($159.99)
TalkPath News (free news source that reads the daily news to adults with aphasia/and
language loss):
TalkPath News for Apple products:
TalkPath News for Android devices:
Speech Practice Apps help you practice specific things. There are apps to practice speech sounds for
those with apraxia or dysarthria. There are also apps that help with comprehension and expression.
Tactus Therapy Solutions (speech and language practice, comprehension, expression, etc.):
Dragon Dictation (you speak and it translates to a written message. Use to see if what you are
iWordQ US (uses word prediction to help with writing. Can also be used to help with reading):
NACD Home Speech Therapist (for practice with speech sounds):
VAST Songs (uses songs to help with apraxia and aphasia, with help for specific speech sounds)
VASTtx-Key Words(to practice specific words for people with aphasia or apraxia):
Lexico Cognition (practice with language, understanding and memory/thinking):
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TalkPath™ Therapy (practice speech therapy- four key areas: speaking, reading,
Constant Therapy (60 cognitive and speech categories and 12,000 exercises customized
Other Apps
Other apps can use the camera on a phone or iPad to take pictures of items or events to help with
discussions later (i.e., take a picture of a menu so you can talk about what you had for lunch).
There are many apps out there for crossword puzzles, word searches and other word games. These are
all great for reading, writing and expression.
SpeakText Free (will read any text or webpage if you are having difficulty with reading)
Word Shaker HD Free (game that can be used to help with reading, scanning and word
My Heart&Stroke Health (helps you track blood pressure, stroke risk, healthy recipes, etc.):
My Medications (stores info on current medications, doctors and medical information):
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