The Stroke and Mini-Stroke Support Center

Every person is unique, but when you face a challenge like stroke or mini-stroke (transient ischemic attack), you are never alone.  Countless men and women have faced exactly the same diagnosis and have survived and thrived. The following guide is designed to help you navigate your journey with the best information and resources that helped other survivors when they faced the same challenge.  

TSC has scoured the Web to gather together links to the very best stroke and mini-stroke resources: articles, blogs, forums, and tools that can help you make better decisions and take action to overcome the range of physical, emotional, and other challenges you're facing now.

As you’ll see, we always welcome your ideas and suggestions to make this stroke and mini-stroke guide even more helpful to survivors like you.

 

JUST FOUND OUT 

Survivors Say: Best Resources for Stroke and Mini-Stroke

• National Stroke Association
• National Institute of Neurological Disorders and Stroke: Stroke Information Page
• National Institute of Neurological Disorders and Stroke: Transient Ischemic Attacks (TIAs, or mini-strokes)
• Mayoclinic.com:  Mini-stroke vs. regular stroke: What's the difference?   
• Organizedwisdom.com: Stroke and Mini-Stroke Health Center

The Big Picture

A stroke occurs when the blood supply to part of the brain is suddenly interrupted or when a blood vessel in the brain bursts, spilling blood into the spaces surrounding brain cells. Brain cells die when they no longer receive oxygen and nutrients from the blood or there is sudden bleeding into or around the brain. The symptoms of a stroke include sudden numbness or weakness, especially on one side of the body; sudden confusion or trouble speaking or understanding speech; sudden trouble seeing in one or both eyes; sudden trouble with walking, dizziness, or loss of balance or coordination; or sudden severe headache with no known cause.

A transient ischemic attack (TIA) -- or "mini-stroke" -- is a transient stroke that lasts only a few minutes. It occurs when the blood supply to part of the brain is briefly interrupted. TIA symptoms, which usually occur suddenly, are similar to those of stroke but do not last as long. Most symptoms of a TIA disappear within an hour, although they may persist for up to 24 hours. It is impossible to predict who will suffer a stroke and precisely when a stroke is going to occur.

Possible contributors to stroke and mini-stroke include high blood pressure, high cholesterol, diabetes, smoking, heart problems, and family history.

New treatments and new strategies for dealing with stroke and mini-stroke are being discovered all the time.  To help keep up on the latest discoveries in this field look into the website of the National Stroke Association:

National Stroke Association: Information on Stroke Prevention, Risk Factors, Symptoms, and Recovery

Learn the most common signs and symptoms of stroke and mini-stroke from the American Heart Association: 

Heart Attack, Stroke and Cardiac Arrest Warning Signs

Your Stroke or Mini-Stroke

It's important to understand as much as you can about the stroke or the mini-stroke you’ve had so that you can plan your treatment with your doctor.  Here's an excellent overview:

WebMD: Stroke Treatment Overview

A second medical opinon may be useful now:

American Heart Association: Second Medical Opinions

There are things you can do to help prevent a stroke or to lessen the chances of a second stroke:

National Institute of Neurological Disorders and Stroke: Stroke Risk Factors and Symptoms

Your World

After being diagnosed with a stroke or mini-stroke it is understandable to experience a flood of emotions. You need to deal with these emotions as they arise. Talk frankly and openly with your loved ones and make contact with a support group, either online or in person. Here's how to find emotional support:

Stroke.org: Recovery After Stroke -- Coping with Emotions

After suffering a stoke, particularly a mini-stroke, it can be difficult to know just what to tell family and friends, or to deal with fears about the future:

National Stroke Association: Life After Stroke - Survivor and Caregiver 

Stroke and Mini-Stroke Myths

• University of Tennessee Medical Center: Busting Stroke Myths 
• Organizedwisdom.comg: Myths and interesting facts about stroke
• National Stroke Association: Stroke Myths

Information and Recommended Links for Survivors

• YourTotalHealth/iVillage.com: Stroke - Dealing Day-to-Day
• National Stroke Association: Life After Stroke - Survivor and Caregiver 
• Food and Drug Administration: Brain Attack - Preventing Another Stroke
• American Heart Association: ABCs of Preventing Heart Disease, Stroke and Heart Attack

Types of Treatment

All types of stroke and mini-stroke need to be treated immediately; if you suspect you're having a stroke call for medical help right away, or get yourself to a hospital emergency room.

As someone who's had a stroke or transient ischemic attack (TIA, or mini-stroke), it's likely your doctor will put you on a prescription medication such as an anticoagulant (blood thinner) or antiplatelet agent that reduces blood clotting in arteries (clots can impede blood flow to your brain, which causes a stroke):

• American Heart Association: Stroke Treatment
• American Heart Association: What are anticoagulants and antiplatelet agents? (PDF)
• University of California, San Francisco Medical Center: Stroke Treatment
• WebMD: Stroke Health Center - Transient Ischemic Attacks (TIA) Treatment Overview
• Mayoclinic.com: Stroke Treatment

Possible Treatment Side Effects

Every drug comes with possible side effects:

About.com: Stroke - Side effects of Coumadin, Plavix and Other Blood Thinners

New Therapies

The Washington Post reports on promising new treatments discussed by the American Stroke Association in early 2008:

The Washington Post/HealthDay: New Stroke Therapies Show Promise (February 2008)

Holistic Treatments

Lifestyle changes like eating a healthy diet; quitting smoking; and exercising regularly are paramount if you want to recover faster and avoid another stroke or TIA:

• The Cleveland Clinic: The Role of Nutrition in the Prevention and Treatment of Stroke
• National Stroke Association: Stroke Smart Magazine - Improve Recovery with Exercise
• American Heart Association: Quitting Smoking

Home Therapies

The National Stroke Association advocates at-home therapy and rehabilitation for stroke patients.

National Stroke Association: Rehabilitation Therapy

Creating a Support Circle

• Set up your TSC survivor profile.
• Join support groups of other survivors or set up your own.
• Interact and provide updates on your TSC profile or in the TSC forums.

The National Stroke Association provides a registry of support groups all across the country.  Locate a group near you:

Stroke Support Groups

Insurance & Work Matters

Insurance Matters

Stroke Facts provides a comprehensive list of questions about benefits and costs to ask when considering insurance coverage before or after a stroke or mini-stroke:

Stroke.org: National Stroke Association Fact Sheet - Recovery After Stroke: Health Insurance [.doc Download]

Work Matters

Thanks to the Americans with Disabilities Act, you are not required to disclose a medical condition to your employer unless it affects your ability to perform your work-related duties. Here are some resources to check out if you're returning to or starting a job after your stroke or TIA:

• National Stroke Association: Stroke Smart Magazine Discussion Guide - Going Back to Work: A New You, A New Job (PDF)
• Americans with Disabilities Act

Health-care Providers Who Can Help

You will continue to see your primary-care doctor and a neurologist. 

Resources to Find Doctors

If you suspect you or anyone else is suffering a stroke there is no time to lose -- call for or seek medical help immediately:

• Yahoo! Health: Stroke - When to Call a Doctor
• American Academy of Neurology: Find a Neurologist

About.com offers this helpful list of common stroke-related medical terms:

• Stroke - Definitions of Common Terms Used by Stroke Doctors

The Emotional Rollercoaster

Living with the knowledge that you have had a stroke or a mini-stroke and that you could suffer another one can be an emotional strain. What’s important is that you continue living your life as normally as possible, participating in the same daily activities you've always enjoyed, while following the advice of your doctor for treatment and prevention.

Support groups, whether online or in person, can also be useful now. Keep phone numbers of your support team handy at all times and look for websites with success stories of stroke survivors. Developing a positive mental attitude will go a long way in smoothing out the emotional rollercoaster you’re sure to be on at times.

Books Survivors Recommend

• After The Stroke: A Journal by May Sarton
• Stroke and The Family: A New Guide by Joel Stein, M.D.
• The Stroke Recovery Book: A Guide For Patients and Families by Kip Burkman, Bob Hoganmiller, and David Jenkins

Communicating with Your Health-care Providers

If you sometimes feel overwhelmed by discussions with your doctor and find it hard to remember everything she said, you're not alone. Next time, bring a friend or family member to your appointments and encourage your advocate to ask questions, too, and to take notes. Write down any questions you have before going to your appointment and don’t be afraid to ask your health-care provider to repeat things or to explain them in a way you can better understand.

Dealing with Stroke and Mini-Stroke: Information and Recommended Links for Co-Survivors    

How You Can Help

• Assist your friend or family member with their day-to-day duties or chores, if they need it. Strive to find a balance between helping and allowing them to do for themselves.
• Preserve your survivor's daily routine as much as possible activities; it's normal to feel protective, but excluding survivors from activities or decisions can contribute to feelings of helplessness.
• Involve your friend or family member with others and when you do don't focus exclusively on their condition.

What to Say    

• "I will support your decisions about your treatment."
• "You seem upset; do you want to talk about it?"
• Tell them how much you care about them.

What Not to Say

• "Don't worry, we'll find a way to make this all go away."
• "We'll go to every hospital and spend as much money as it will take to get you well."
• "You won't have to lift a finger; I'll do everything."

Things You Can Do for a Survivor Every Day

• Offering day-to-day support is a great gift for a family member or friend who has had a stroke. If the survivor isn't a relative, ask if you can help out their family when they are away by picking up the mail or newspaper, making meals, going grocery shopping, etc. If the survivor is a family member, help out with chores or other duties they may have fallen behind on.

How to Build a Support Network

• Set up your TSC so-survivor profile.
• Create a support group for your friend or family member.
• Interact and provide updates on how they're doing.

How to Help a Survivor Deal with Day-to-Day Challenges

• If you have a parent who has suffered a stroke, you will likely have many challenging decisions to make about their care: Caring.com: How Much Care Will Your Parent Need After a Stroke?
• Find ways to help your survivor cope with the effects of a stroke here: Mayoclinic.com: Stroke - Coping and Support

You have survived a stroke or mini-stroke. This is the time to assess and share with others how you feel emotionally, mentally, and spiritually after this experience. Telling your story can not only help put your thoughts and feelings into perspective but also lets you provide hope to others who are going through a similar journey themselves.  

Remission / Recovery / Recurrence

Thankfully, there several clearly-understood risk factors for stroke and mini-stroke, which means there are several things that survivors can do to help prevent the possibility of a stroke:

Centers for Disease Control and Prevention: Stroke Prevention

One of the keys to getting back to your previous life - or as close to it as you can manage -- is rehabilitation:

EverydayHealth.com: Rehabilitation After Stroke - What Can Be Done?

When you need inspiration, read these uplifting stories from other stroke survivors: 

Colorado Neurologcial Institute Stroke Center: Meet CNI's Stroke Heroes

Give Back

What helped you while you were dealing with your stroke and undergoing treatment?  How did you feel when you realized you had recovered? Take a look back at your journey and share with others what helped you and what you wished you would have known or done. You can create a TSC profile, reach out to other survivors, join support circles, and/or share your story at The Survivors Club.

One way to give back is by making a charitable contribution to the American Heart Association: 

American Heart Association: Donate Now and Help Save Lives

Permanent Disability & Death

Many cases of stroke do result in serious and even permanent disability - in fact, stroke is the number-one cause of disability in the U.S. (TIAs, or mini-strokes, do not result in lasting problems.) Many patients and families find they are unprepared when the worst case happens. If you find out that your stroke has left you with a permanent disability it can be very challenging to deal with this reality:

• Healthgrades/Healthwise: Stroke Rehabilitation - Initial disabilities
• Family Caregiver Alliance: Stroke

When You're Facing Death

• FamilyDoctor.org: Cancer - Palliative Care
• MedlinePlus: Hospice Care
• Medicinenet.com: Loss, Grief and Bereavement