The Cerebral Palsy Support Center

Every person is unique, but when you face a challenge like cerebral palsy, you are never alone. Countless men, women, and children 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 and assembled links to the very best cerebral palsy 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 that you face.

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

 

JUST FOUND OUT 

Survivors Say: Best Resources for Cerebral Palsy

• United Cerebral Palsy This website covers most of what you'd like to know about CP, from symptoms and diagnosis to treatments and support groups. It's a great first stop for those who've just been diagnosed. 
• National Institute of Neurological Disorders and Stroke  The cerebral palsy section on the NIDS site, an agency of the National Institutes of Health, is an excellent overview of CP, covering prognosis, treatment, and clinical trials, among other topics.

The Big Picture

Cerebral palsy does its damage directly to the areas of the brain responsible for muscle movement and control. Cerebral palsy is a disease that is diagnosed in infancy or early childhood. It does not get worse over time and has no known cure.

Cerebral palsy strikes nearly 9,000 children each year in the U.S., and although there is no cure, treatment can keep symptoms under control for many people, allowing thousands to lead near-normal lives. Children with severe cerebral palsy may have a shortened lifespan, primarily due to health complications of CP rather than the disease itself. If your child has a mild case life expectancy should be similar to that of a person without the illness.

Cerebral palsy does not have one single cause, nor are all cases of the same severity. So follow the advice of your primary care physician and any specialists you are referred to, and keep up with new approaches to treatment, like those from the National Institute of Neurological Disorders and Stroke.

To better understand the most common signs and symptoms of cerebral palsy start with a visit to the site of the Mayo Clinic: 

Symptoms

Your Cerebral Palsy

As you start to figure out your particular case of CP and how to stay healthy and manage symptoms, this Medline Plus page, created by the National Institutes of Health, will help you understand your options, as will an easy-to-follow WebMD page:

• Medline Plus: Cerebral Palsy
• WebMD - Understanding Cerebral Palsy

It's not always easy to diagnose cerebral palsy. If you're unsure whether your child has the condition, visit this site from the Centers for Disease Control and Prevention's National Center on Birth Defects and Developmental Disabilities:

"Learn the Signs. Act Early."
Not sure what to ask your doctor about your child? Here's some guidance from Healthscout.com:

Questions to Ask Your Doctor About Cerebral Palsy

Your World

If your child has been diagnosed with cerebral palsy you are likely experiencing a range of overwhelming emotions. It's important to talk with your loved ones and reach out to support groups (online and off), especially during the early stages of your journey. For advice on dealing with the emotions you may be going through, visit the 4MyChild website:

Cerebral Palsy and Your Emotions as a Parent

If you're having problems figuring out what exactly to say to your family and friends after your child has been diagnosed with cerebral palsy, get some guidance here on telling grandparents and your child's siblings, from The Spastic Centre, in Australia:

• Helping Your Family Adjust - Grandparents
• Helping Your Family Adjust - Brothers & Sisters

Cerebral Palsy Myths

• "People with cerebral palsy are retarded."
• "My child has no future."
• "I cannot care for a child with cerebral palsy."
• "Cerebral palsy is always caused by a lack of oxygen at birth." 

Information and Recommended Links for Survivors

Dozens of personal stories of people just like you who are coping with CP in this blog network, Living with Cerebral Palsy:

• Living Life to the Full Around the World
  

If you're the parent of a child with CP, check out this advice from 4MyChild:

• Coping with Cerebral Palsy

Types of Treatment

Physical Therapy & Surgery

In many cases physical and/or occupational therapy many be of tremendous benefit and sometimes orthopedic surgery may be suggested:

• Yahoo! Health - Physical Therapy for Cerebral Palsy
• Yahoo! Health - Orthopedic Surgery for Cerebral Palsy

Medication

Antispasmodic drugs are commonly used in CP patients, as are anticonvulsant medications to prevent seizures:

• Yahoo! Health - Injectable antispasmoidic medications for cerebral palsy
• Yahoo! Health - Anticonvulsants for cerebral palsy
  

Possible Treatment Side Effects

Not all patients are treated with the same drugs and every medication comes with the risk of side effects. The Mayo Clinic's site has answers to many frequently asked questions about side effects:

Cerebral Palsy Treatment and Drugs

New Therapies

New treatments for cerebral palsy are constantly being investigated, so it's important to keep up with the latest research. Learn about the research that's currently underway at this site from the National Institutes of Health:

Cerebral Palsy: Hope Through Research - What Research is Being Done?

Holistic Treatments

The National Institute of Neurological Disorders and Stroke sums up the latest thinking on alternative approaches to CP in this page:

Alternative Therapies

Acupuncture

Acupuncture has been used successfully to treat certain types of cerebral palsy and for the treatment of specific symptoms. Learn about this innovative approach here:

A Serendipitous Treatment of Cerebral Palsy with TCM

Non-surgical Therapies

You have a wide range of options for treatment for this illness, depending on the type of cerebral palsy you or your child is suffering from and its severity. Learn about everything from speech therapy to Feldenkrais to craniosacral therapy to electrical stimulation and more at this site:

Cerebral Institute of Discovery - Non-Surgical Treatment Options for Cerebral Palsy

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 profile or our forums.
  

Insurance & Work Matters

Insurance Matters

It's natural to wonder how much your health insurance will cover when you're dealing with CP. 4MyChild offers a good guide for figuring out the best insurance based on your situation:

Consider and Compare Your Health Plan Options

Work Matters

Having CP doesn't preclude someone from working and achieving most or all of what someone who doesn't have CP could. Check out the employment page here: United Cerebral Palsy: Employment

Also be sure to familiarize yourself with the Americans with Disabilities Act, which can help protect you from employment discrimination.

Health-care Providers Who Can Help

Your child, like any child, needs to see a pediatrician for regular check-ups. He or she might also see other specialists in cerebral palsy depending on the type and severity of CP he or she has. Other health-care professionals you might work with include speech therapists, occupational therapists, physical therapists, hearing specialists, and others.

• For a list of types of physicians and what they can do for you, follow this link: 4MyChild: Which Doctors and Specialists Can My Child See?
  

Resources to Find Doctors

Choosing the right doctor can mean a signficant difference in the quality of your or your child's life. Here's a list of specialists you might need for yourself or your child:

• Wrongdiagnosis.com: Doctors and Medical Specialists for Cerebral Palsy
• American Physical Therapy Association: Find a Physical Therapist (directory)
• TheBrainMatters.com: Find a Neurology (American Academy of Neurology)

The Emotional Rollercoaster

Having a child with cerebral palsy carries with it a wide range of emotions, everything from fear and guilt to anger and depression. For many parents, dealing with the flood of emotions that comes with a diagnosis of cerebral palsy in a child can be an enormous challenge.  It's important to continue living your life normally, participating in the same daily activities you always have as much as possible. Support groups are also important; if you can, connect with other parents or if you're a survivor yourself, talk to others with CP. Be sure to keep educating yourself on cerebral palsy and learning trhough books, sites, and stories by those who are dealing with this condition. This site has state-by-state info about support groups and resources for parents:

4MyChild: Strength in Numbers - Connect with People Who Really Understand 

Books Survivors Recommend

• Cerebral Palsy: A Complete Guide for Caregiving (A Johns Hopkins Press Health Book)
• The Official Parent's Sourcebook on Cerebral Palsy: A Revised and Updated Directory for the Internet Age
• Sara's Secret
• Children With Cerebral Palsy

Communicating with Your Health Care Providers

Bring a friend or family member with you to your appointments not only to provide support, but to lend an ear. They are likely to hear more clearly than you do, especially in early days after your child's diagnosis, everything your healthcare provider has to say and they may think of questions you didn't consider. Encourage your friend or family member to take notes during your doctor’s meeting.

Don't be afraid to ask any questions you feel you need the answer to, even if you may be scared of the answer. Write down any questions you may have ahead of time and note the answers as your healthcare provider walks you through them.  Don't be afraid to ask for clarification on anything.

Dealing with Cerebral Palsy: Information for Co-Survivors

How you can help

• Assist your friend or family member with their day-to-day duties or chores, but be sure to find a good balance. You don't want to throw off their normal routine, which may add to the feeling that they are a burden to others.
• Preserve your friend or family member's daily activities (true for both parents and children). It's normal to feel protective, but excluding the person with CP from activities or decisions contributes to feelings of helplessness.
• Involve your friend or family member with others, especially other children with cerebral palsy. Don't focus on their disease when interacting with them. Talk to them about yourself or make plans to visit friends and loved ones.

What to say  

• "I will support your decision in whichever treatment option you choose and which doctors and hospitals you go to."
• "It seems like something is wrong. 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 doctor and spend as much money as it will take to get you well."
• "You won't have to do anything; I'll take care of everything."

Things you can do for a survivor every day

• Offering day-to-day support is a great gift to give a family member with a child who has cerebral palsy or a friend/neighbor that has been stricken with this condition or has a child with CP.  You can help a family when they are away by picking up the mail or newspaper, making meals, going grocery shopping, and running other errands. 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 co-survivor profile.
• Create a support group for your friend or family member.
• Interact and provide updates.

How to help a survivor deal with day-to-day challenges

• Preparing the School for Your Child with Cerebral Palsy

There is no cure for cerebral palsy, but there are treatments that can help. As a survivor of cerebral palsy you can also help and encourage others who are in the same boat. Start by sharing your story with others or writing down your thoughts and experiences as someone with CP.     

Remission / Recovery / Recurrence

There is no known cure for cerebral palsy, but because the condition is not progressive it's unlikely your or your child's symptoms will get worse over time so once you've found a way to manage them by working with your health-care team, you may well find that your treatment plan serves you (or your child) well for a long time.

That said, there are complications related to CP, many of them appearing in infancy and childhood, such as difficulty eating, which can result in a child that doesn't gain weight and grow properly. But CP also raises your risk for epilepsy and respiratory ailments as well as hearing loss and learning disabilities, among other problems.    

Give Back

What has helped you as a survivor? Take a look back at your journey and share with others what helped you and what you wished you would have known or done during your experience with cerebral palsy. You can create a profile, reach out to others, join support circles or share your story by following the links here at The Survivors Club. Check out some of the best charities for supporting cerebral palsy research:

• Cerebral Palsy International Research Foundation
• Cerebral Palsy Organizations: Foundations & Charities

 

 

In most cases someone with CP doesn't get worse over time; their symptoms stay much the same from childhood through adulthood. So adults with cerebral palsy have grown up with the condition and learned ways to cope over the years.

For parents of a baby or child newly diagnosed with cerebral palsy, it is among their worst fears come true. What can you do when the diagnosis of cerebral palsy in your child has been confirmed? Many families find they are unprepared for the emotions they feel at this time. It can help to join a support group where you can draw strength from the experiences of others.  These sites offer help from those who've been where you are:

• CerebralPalsy.org - Cerebral Palsy Support Groups for Parents
• Cerebral Palsy Support Group