American Academy of Orthotists & ProsthetistsAmerican Board for CertificationAmerican Orthotic & Prosthetic Association
Font Adjust
Normal Font Size Large Font Size Extra Large Font Size

 


Health Issues - below are some of the most common health issues. Please feel free to read the information we have collected. Some of this information includes risks, tips, explanations and prevention tips for patients and caregivers.
Cerebral Palsy Muscular Dystrophy Plagiocephaly
Scoliosis Spinal Cord Injury Vascular Diseases
Diabetes    

Help for Patients and Caregivers : Cerebral Palsy

Quick reference directory:

What is Cerebral Palsy?
Different Types of Cerebral Palsy?
What causes Cerebral Palsy?
Is there any treatment?
What is the prognosis?

 


What is Cerebral Palsy?

Cerebral palsy is an umbrella-like term used to describe a group of chronic disorders impairing control of movement that appear in the first few years of life and generally do not worsen over time. The disorders are caused by faulty development of or damage to motor areas in the brain that disrupts the brain's ability to control movement and posture. Symptoms of cerebral palsy include difficulty with fine motor tasks (such as writing or using scissors), difficulty maintaining balance or walking, involuntary movements. The symptoms differ from person to person and may change over time. Some people with cerebral palsy are also affected by other medical disorders, including seizures or mental impairment, but cerebral palsy does not always cause profound handicap. Early signs of cerebral palsy usually appear before 3 years of age. Infants with cerebral palsy are frequently slow to reach developmental milestones such as learning to roll over, sit, crawl, smile, or walk. Cerebral palsy may be congenital or acquired after birth. Several of the causes of cerebral palsy that have been identified through research are preventable or treatable: head injury, jaundice, Rh incompatibility, and rubella (German measles). Doctors diagnose cerebral palsy by testing motor skills and reflexes, looking into medical history, and employing a variety of specialized tests. Although its symptoms may change over time, cerebral palsy by definition is not progressive, so if a patient shows increased impairment, the problem may be something other than cerebral palsy.


What are the different types of Cerebral Palsy?

Cerebral palsy may be classified by the type of movement problem (such as spastic or athetoid cerebral palsy) or by the body parts involved (hemiplegia, diplegia, and quadriplegia). Spasticity refers to the inability of a muscle to relax, while athetosis refers to an inability to control the movement of a muscle. Infants who at first are hypotonic wherein they are very floppy may later develop spasticity. Hemiplegia is cerebral palsy that involves one arm and one leg on the same side of the body, whereas with diplegia the primary involvement is both legs. Quadriplegia refers to a pattern involving all four extremities as well as trunk and neck muscles. Another frequently used classification is ataxia, which refers to balance and coordination problems. The motor disability of a child with CP varies greatly from one child to another; thus generalizations about children with cerebral palsy can only have meaning within the context of the subgroups described above. For this reason, subgroups will be used in this book whenever treatment and outcome expectations are discussed. Most professionals who care for children with cerebral palsy understand these diagnoses and use them to communicate about a child's condition.

As noted above, a useful method for making subdivisions is determined by which parts of the body are involved. Although almost all children with cerebral palsy can be classified as having hemiplegia, diplegia, or quadriplegia, there are significant overlaps which have led to the use of additional terms, some of which are very confusing. To avoid confusion, most of the discussion in his book will be limited to the use of these three terms. Occasionally such terms as paraplegia, double hemiplegia, triplegia, and pentaplegia may occasionally be encountered by the reader; these classifications are also based on the parts of the body involved. The dominant type of movement or muscle coordination problem is the other method by which children are subdivided and classified to assist in communicating about the problems of cerebral palsy. The component which seems to be causing the most problem is often used as the categorizing term. For example, the child with spastic diplegia has mostly spastic muscle problems, and most of the involvement is in the legs, but the child may also have a smaller component of athetosis and balance problems. The child with athetoid quadriplegia, on the other hand, would have involvement of both arms and legs, primarily with athetoid muscle problems, but such a child often has some ataxia and spasticity as well. Generally a child with quadriplegia is a child who is not walking independently. The reader may be familiar with other terms used to define specific problems of movement or muscle function terms such as: dystonia, tremor, ballismus, and rigidity. The words severe, moderate, and mild are also often used in combination with both anatomic and motor function classification terms (severe spastic diplegia, for example), but these qualifying words do not have any specific meaning. They are subjective words and their meaning varies depending on the person who is using them.


What causes Cerebral Palsy?

We do not know the cause of most cases of cerebral palsy. That is, we are unable to determine what caused cerebral palsy in most children who have congenital CP. We do know that the child who is at highest risk for developing CP is the premature, very small baby who does not cry in the first five minutes after delivery, who needs to be on a ventilator for over four weeks, and who has bleeding in his brain. Babies who have congenital malformations in systems such as the heart, kidneys, or spine are also more likely to develop CP, probably because they also have malformations in the brain. Seizures in a newborn also increase the risk of CP. There is no combination of factors which always results in an abnormally functioning individual. That is, even the small premature infant has a better than 90 percent chance of not having cerebral palsy. There are a surprising number of babies who have very stormy courses in the newborn period and go on to do very well. In contrast, some infants who have rather benign beginnings are eventually found to have severe mental retardation or learning disabilities.


Is there any treatment?

There is no standard therapy that works for all patients. Drugs can be used to control seizures and muscle spasms, special braces can compensate for muscle imbalance. Surgery, mechanical aids to help overcome impairments, counseling for emotional and psychological needs, and physical, occupational, speech, and behavioral therapy may be employed


What is the prognosis?

At this time, cerebral palsy cannot be cured, but due to medical research, many patients can enjoy near-normal lives if their neurological problems are properly managed.


For more information on Cerebral Palsy visit:

- The National Institute of Neurological Disorders & Stroke
- Cerebral Palsy - A Guide for Care

CAREGIVER TIPS & INFORMATION:
  • 10 Tips for Family Caregivers
  • Questions to Ask Your Healthcare Provider
  • How to Communicate with an Insurance Provider
  • Find a Doctor
  • Information on Seating & Mobility
  • Tips for Family Caregivers from Doctors
  • Care Management Techniques You Can Use
  • Compare Home Health Agencies in Your Area
  • Keep loved ones connected & updated!
  • Additional Resources

 


10 Tips for Family Caregivers.

1. Caregiving is a job and respite is your earned right. Reward yourself with respite breaks often.
2. Watch out for signs of depression, and don’t delay in getting professional help when you need it.
3. When people offer to help, accept the offer and suggest specific things that they can do.
4. Educate yourself about your loved one’s condition and how to communicate effectively with doctors.
5. There’s a difference between caring and doing. Be open to technologies and ideas that promote your loved one’s independence.
6.Trust your instincts. Most of the time they’ll lead you in the right direction.
7. Caregivers often do a lot of lifting, pushing, and pulling. Be good to your back.
8. Grieve for your losses, and then allow yourself to dream new dreams.
9. Seek support from other caregivers. There is great strength in knowing you are not alone.
10. Stand up for your rights as a caregiver and a citizen.

<<Back to Top>>

Tips for Family Caregivers from Doctors

•   Write questions down so you won’t forget them.
•   Be clear about what you want to say to the doctor. Try not to ramble.
•   If you have lots of things to talk about, make a consultation appointment, so the doctor can allow enough time to meet with you in an unhurried way.
•   Educate yourself about your loved one’s disease or disability. With all the information on the Internet it is easier than ever before.
•   Learn the routine at your doctor’s office and/or the hospital so you can make the system work for you, not against you.
•   Recognize that not all questions have answers—especially those beginning with “why.”
•   Separate your anger and sense of impotence about not being able to help your loved one as much as you would like from your feeling about the doctor. Remember, you are both on the same side.
•   Appreciate what the doctor is doing to help and say thank you from time to time.

<<Back to Top>>

Care Management Techniques You Can Use
Did you ever wish you could just pick up the phone and call someone who would take stock of your situation, help you access the right services, counsel you and your family to help resolve some of your differences, then monitor your progress with an eye toward channeling your energy and abilities as effectively as possible? If your answer is “yes,” you’re not alone. Having the help of a care coordinator (often called a care manager) could make all of our lives easier and less lonesome, and help us be more capable family caregivers. While most of us may not have access to a care coordinator, we can all learn how to think and act like one, thereby reaping numerous benefits for our loved ones and ourselves.

What Is Care Coordination?
Although every case is different, the care coordination approach usually involves:

•   Gathering information from healthcare providers;
•   An assessment of your care recipient and the home environment;
•   Research into available public and/or private services and resources to meet      your loved one’s needs; and
•   Ongoing communication between all parties to keep information up to date      and services appropriate and effective.

Unfortunately, an assessment of your abilities and needs is not necessarily a standard part of the process, but it should be. A complete view of the situation cannot be gained without one. An objective analysis of your health, emotional state, other commitments, etc., are key elements in determining how much you can and cannot do yourself, and what type of outside support is needed to ensure your loved one’s health and safety.

Become Your Own Care Coordinator
By learning and applying at least some of the care coordination techniques and ideas that follow, you’ll be in a much better position to develop an organized course of action that will, hopefully, make you feel more confident and in control — a goal well worth working toward.

Educate yourself on the nature of the disease or disability with which you’re dealing. Reliable information is available from the health agency that deals with your loved one’s condition and the National Institutes of Health. When using the Internet, stick with wellknown medical sites. Understanding what is happening to your care recipient will provide you with the core knowledge you need to go forward. It will also make you a better advocate when talking with healthcare professionals.

Write down your observations of the present situation including:

•   Your loved one’s ability to function independently, both physically and mentally.
•   The availability of family and/or friends to form a support network to share the care.
•   The physical environment: Is it accessible or can it be adapted at reasonable cost?
•   Your other responsibilities — at work, at home, and in the community.
•   Your own health and physical abilities.
•   Your financial resources, available insurance, and existence of healthcare or end-of-life documents.

This assessment will help you come to a realistic view of the situation. It will let you know the questions to which you need answers. It can be a handy baseline for charting your caregiving journey and reminding you just how much you’ve learned along the way.

Hold a family conference. At least everyone in the immediate family should be told what’s going on. A meeting can set the stage for divvying up responsibilities so that there are fewer misunderstandings down the road when lots of help may be needed. A member of the clergy, a professional care coordinator, or even a trusted friend can serve as an impartial moderator. A family meeting is a good way to let everyone know they can play a role, even if they are a thousand miles away. It can help you, the primary family caregiver, from bearing the brunt of all the work all of the time.

Keep good records of emergency numbers, doctors, daily medications, special diets, back-up people, and other pertinent information relating to your loved one’s care. Update as necessary. This record will be invaluable if something happens to you, or if you need to make a trip to the ER. If you can maintain a computer-based record, that will make updating all that much easier and it might even allow you to provide the medical team with direct access to the information.

Join a support group, or find another caregiver with whom to converse. In addition to emotional support, you’ll likely pick up practical tips as well. Professionals network with each other all the time to get emotional support and find answers to problems or situations they face. Why shouldn’t family caregivers?

Start advance planning for difficult decisions that may lie ahead. It’s never too early to discuss wills, advance directives, and powers of attorney, but there comes a time when it is too late. It is also vital that you and your loved one think through what to do if you should be incapacitated, or, worse, die first. It can happen.

Develop a care team to help out during emergencies, or over time if your situation is very difficult. In an ideal world there will be lots of people who want to help. More likely you’ll be able to find one or two people to call on in an emergency or to help with small chores. The critical thing is to be willing to tell others what you need and to accept their help.

Establish a family regimen. When things are difficult to begin with, keeping a straightforward daily routine can be a stabilizer, especially for people who find change upsetting and confusing.

Approach some of your hardest caregiving duties like a professional. It’s extraordinarily difficult to separate your family role from your caregiving role, to lock your emotions up in a box while you focus on practical chores and decisions. But it is not impossible to gain some distance some of the time. It requires an almost single-minded approach to getting the job at hand done as efficiently and effectively as possible. It takes practice, but is definitely worth the effort.

©National Family Caregivers Association | www.nfcacares.org | Phone: 800/896-3650

<<Back to Top>>

Seating & Mobility - As a caregiver, you need to be very understanding to the individuals needs. This is a very hard time as they are being told they need to start living their life in a different manor than they had done so previously. It will be most beneficial to educate them, either with a professional, or through a support group. Getting them involved in different activities with others in the same condition, the individual will be able to make the transition much easier. As far as the actual device, you will want to make sure that the individual is fully capable of performing all the operations of the mobility device and can do so in a comfortable manor. Areas to pay close attention to include an adjustable backrest, a suspension system, a fore-and-aft track adjustment, an up-and-down seat adjustment, an armrest and/or footrest, and lumbar region support.

How do you care for your mobility device?

The most important areas that you need to pay attention to are referred to as the 3 B’s…Bad batteries, bent wheel rims and failed bearings. If you notice something that doesn’t seem right, but it isn’t all too annoying, you should still get it looked at right away. This could prevent a more severe accident from happening. So as the saying goes “it’s better to be safe than sorry”.

When a wheelchair is purchased, you will want to make sure that all the correct adjustments and modifications are made. This needs to be done by a professional and should take up to a couple of hours if done correctly. As long as the proper measures are taken initially, the work of maintaining the device will be substantially easier.

<<Back to Top>>

Additional Resources

It's always wise to find out what your county and state have to offer in the way of services, even if you think you won't qualify for them. Check the blue pages of your phone book for the numbers, or go on line. Counties and states all have web sites. Type the name of your state or county and state into any major search engine i.e. Iowa, or Montgomery County, PA. Navigate from there to locate the Department of Health and Human Services and the specific office most relevant to your needs such office on disabilities, elder affairs, or material and child health.

Other good sources of information include your local hospital or clinic (social work department), area adult day centers, social service and faith-based agencies, and/or the local chapter of the health agency that focuses on your loved one's condition. It is by no means certain that any of these will offer caregiver support services, but they are good places to check, and they are good sources for information about services to directly support your loved one.

National Family Caregivers Association
10400 Connecticut Avenue, Suite 500
Kensington, MD 20895
800-896-3650
Web site: http://www.thefamilycaregiver.org
e-mail: info@thefamilycaregiver.org

The National Family Caregivers Association (NFCA) is a grassroots organization created to educate, support, empower and advocate for the millions of Americans who care for chronically ill, aged, or disabled loved ones. NFCA is the only constituency organization that reaches across the boundaries of different diagnoses, different relationships and different life stages to address the common needs and concerns of all family caregivers. NFCA serves as a public voice for family caregivers to the press, to Congress and the general public. NFCA offers publications, information, referral services, caregiver support, and advocacy.

Caregiver-Specific Web Sites
There are a variety of Web sites that offer information and support for family caregivers, in addition to those from specific organizations.

•  http://www.caregiver.org
•  http://www.caregiving.org
•  http://www.caregiving.com
•  http://www.caregiver.com

<<Back to Top>>