By Sheila Warnock
WHO TAKES CARE OF THE CAREGIVER?

People facing a medical crisis try to “circle the wagons” and tough it out. The result is usually caregiver burnout. While the doctors, nurses, therapists and medical community take care of the patient and the illness, the needs of the caregiver are often overlooked. Who will drive the kids to school? How can we get the shopping done? How do we schedule and keep doctors’ appointments? Ordinary tasks quickly turn into major needs-and soon overwhelm the primary caregiver.

There is a way to make a difference…SHARE THE CARE^TM

Share The Care is a cost effective, supportive, community-based group caregiving model born out of the experience of 12 people (mostly strangers to each other) who came together and stayed together for over three years to care for a friend with terminal cancer. Two of them wrote the book so others wouldn’t have to reinvent the wheel.
It’s called Share The Care, How to Organize a Group to Care for Someone Who Is Seriously Ill, Simon & Schuster (1995, 2004)

Share The Care details how ordinary people can pool their talents, time and resources and create a “caregiving family” to help someone they know facing a health or medical crisis. A Share The Care group supports not only the person in need but their entire family as well. And if someone has no family nearby the group becomes “family.” It’s a sure way of turning offers of “What can I do to help?” into positive action.

A Share The Care group can help regardless of the situation-whether the person (or child) is in need of short-term rehabilitation, suffering from a long-term or terminal illness, or someone is just facing the increased difficulties associated with aging. For example, a church group in Texas recently organized to help a new family in town with the care of their newborn quadruplets.

The model has served as a blueprint for groups in at least 38 states, as well as internationally in Canada, Iceland, and Israel. In May 2005, The Library Journal cited it as “One of the best consumer health books of 2004.” Share The Care is also a winner of Today’s Caregiver magazine’s 2008 Caregiver Friendly Award.

The mission of ShareThecaregiving, Inc. (a 501c3 organization) is to promote and educate people about group caregiving. We offer Share The Care trainings, lectures and customized workshops for health professionals, clergy and caregivers. Our web site www.sharethecare.org provides in-depth information about the model. Visitors can read about groups, find helpful resources, link to purchase the book, download all the forms in the book, and provide feedback on their experiences through a questionnaire. We offer weekday e-mail, and phone support to caregivers and health professionals.

Donations can be made through Network for Good on our web site. Your gifts help us cover the costs of producing our educational materials. And we’d love to know if you start a Share The Care group to help someone in need.

By Laura Heuer

Expert Health Organizer/Consultant

Answers By Megan Gardner, MS

Executive Director
The ALS Association
Jim “Catfish” Hunter Chapter

Q-First can you tell me how long it usually takes to get an actual ALS/Lou Gerhigs diagnosis?

A-ALS is a very difficult disease to diagnose. To date, there is no one test or procedure to ultimately establish the diagnosis of ALS although the ALS Association is currently funding research that will hopefully make diagnosing ALS as simple as having a blood test or a spinal tap. Currently however, it is through a clinical examination and series of diagnostic tests, often ruling out other diseases that mimic ALS, that a diagnosis can be established. A comprehensive diagnostic workup includes most, if not all, of the following procedures:

• Electro diagnostic tests, including electomyography (EMG) and nerve conduction velocity (NCV)

• blood and urine studies, including high resolution serum protein electrophoresis, thyroid and parathyroid hormone levels and 24 hour urine collection for heavy metals

• spinal tap

• x-rays, including magnetic resonance imaging (MRI)

• myelogram of cervical spine

• muscle and/or nerve biopsy

• thorough neurological examination

These tests are done at the discretion of the physician, usually based on the results of other diagnostic tests and the physical examination.

Q-Are there any tell tale signs of ALS?

A-At the onset of ALS, the symptoms may be so slight that they are frequently overlooked. With regard to the appearance of symptoms and the progression of the illness, the course of the disease may include the following:

• Muscle weakness in one or more of the following: hands, arms, legs or the muscles of speech, swallowing or breathing

• Twitching (fasciculation) and cramping of muscles, especially those in the hands and feet

• Impairment of the use of the arms and legs

• “Thick speech” and difficulty in projecting the voice

• In more advanced stages, shortness of breath, difficulty in breathing and swallowing

The initial symptoms of ALS can be quite varied in different people. One person may experience tripping over carpet edges, another person may have trouble lifting and a third person’s early symptom may be slurred speech. The rate at which ALS progresses can be quite variable from one person to another. Although the mean survival time with ALS is three to five years, many people live five, ten or more years. In a small number of people, ALS is known to remit or halt its progression, though there is no scientific understanding as to how and why this happens. Symptoms can begin in the muscles that affect speech and swallowing as well as in the hands, arms, legs or feet. Not all people with ALS experience the same symptoms or the same sequences or patterns of progression. However, progressive muscle weakness and paralysis are universally experienced.

Muscle weakness is a hallmark initial sign in ALS, occurring in approximately 60 percent of patients. Early symptoms vary with each individual, but usually include tripping, dropping things, abnormal fatigue of the arms and/or legs, slurred speech, muscle cramps and twitches and/or uncontrollable periods of laughing or crying.

The hands and feet may be affected first, causing difficulty in lifting, walking or using the hands for the activities of daily living such as dressing, washing and buttoning clothes.

As the weakening and paralysis continue to spread to the muscles of the trunk and of the body, the disease eventually affects speech, swallowing, chewing and breathing. When the breathing muscles become affected, ultimately, the patient will need permanent ventilatory support in order to survive.

Since ALS attacks only motor neurons, the sense of sight, touch, hearing, taste and smell are not affected. For many people, muscles of the eyes and bladder are generally not affected.

For the vast majority of people, their mind and thoughts are not impaired and remain sharp despite the progressive degenerating condition of the body.

Q- What are some steps you can take to help the process along if there are any in getting an accurate diagnosis?

A-There are several diseases that have some of the same symptoms as ALS and most of these conditions are treatable. It is for this reason that The ALS Association recommends that a person diagnosed with ALS seek a second opinion from an ALS “expert” – someone who diagnoses and treats many ALS patients and has training in this medical specialty. The ALS Association maintains a list of recognized experts in the field of ALS. Contact the Jim “Catfish” Hunter Chapter for a list of local physicians and/or clinics.

Q-What are some of the best tips you feel will help a patient once they have been diagnosed?

• A-If you suspect you have ALS but are not diagnosed yet, look into the possibility of getting additional term life insurance and/or long term disability insurance.

• ALS is difficult to diagnose. If you were not diagnosed by a neurologist who specializes in neuromuscular diseases, request a referral to one for a confirmation of the diagnosis.

• Recognize that ALS is bigger than any one person or family. You will need help. There are agencies and organizations out there whose specific purpose is to help. Find them and take advantage of what they can offer.

• Register with your local ALSA Chapter. Request information about services and publications available.

• Register with the National ALS Association (800-782-4747). Request an ALS Patient and Caregiver Resource Manual and information about available services and publications.

• Register with your local ALSA Certified Center or ALS Clinic. Request information about services and publications available and sign up to receive the monthly ALS Support newsletter.

• Contact your medical insurance provider and request that you be assigned a case manager to be your primary point of contact.

• Contact an attorney who specializes in elder care law and make an appointment to discuss legal and financial planning recommendations.

• If you served in the military, contact the Department of Veteran Affairs(800-827-1000) about eligibility for health, vocational rehabilitation and disability programs and services.

• If you are employed, contact your state Vocational Rehabilitation Division and request information about available services.

• If you don’t have a computer and internet access, consider getting one. There is a wealth of information and support available on the internet.

• If you can, participate. Research ALS on the internet, attend an ALS support group meeting, join The ALS Association, go to advocacy day, write your congressional delegates… Be active. Do what you can. Do not expect others to do it for you. Being active, involved and participating is the best medicine you have.

• When the time comes, use the cane, walker, and wheelchair to conserve energy and protect your body. The last thing you need is a broken leg, arm or head.

And finally, be careful with alternative treatments that claim to slow down, stop or cure ALS. If the claims were true, they would be front-page news. Unfortunately, there are many individuals offering treatments designed to take your money rather than to cure ALS.

Q-How do you feel is the best way to get your family and friends to understand your diagnosis?

A-Talking openly about what is happening is a wonderful way for family and friends to begin to understand ALS and the impact that is has on you and your family. You can also send them to various internet websites to read more about the disease as well as the various ways they can support you.

You can also encourage your family and friends to attend ALS support groups. Support groups exist entirely for you, the person with ALS, and your family or loved ones. Here is a list of some things ALS support groups provide:

• A forum to share information and practical experience, whether it’s learning how to improve physical function, discussing new drug trials, or experiencing the latest augmentative technologies all geared to helping you live more fully with the disease.

• A safe place to allow your emotions to speak for you. The group offers anunparalleled opportunity to learn how other people cope with various problems similar to yours, to see that patients and family members are not completely unique, and that others experience the same type of feelings and emotions about the disease as you do.

• An educational gathering spot where speakers and caregivers address subjects of major interest and exchange; how to incorporate physical and occupational therapy into your life; how to counteract problems in swallowing and chewing; safeguards that can help you avoid pulmonary complications; and ways of coping with depression and caregiver “burnout”, among many other topics.

• A place to witness firsthand the constant miracle of people continuing to live productive, fulfilling lives in spite of having ALS.

For more information on lou gehrigs, ALS or Amyotrophic Lateral Sclerosis disease or diagnosis, go to www.CatfishChapter.org

Contact Jakoter @ 847-719-2054 or www.jakoter.com for products that will assist you in organizing your emergency and everyday health needs, for a Professional Consultant to help organize your health journeys and for expert medical advocacy and consulting.

By Laura Heuer

Expert Health Organizer/Consultant

Answers by Dawn EIsherwood RNHealth EducatorLupus Foundation of America, Inc

Q- First can you tell me how long it usually takes to get an actual Lupus diagnosis?

A- Unlike other chronic illnesses, trying to reach a diagnosis of lupus isn’t always easy. It can take months or even years for the doctors to put together all of the information that is required to make a firm diagnosis of Lupus. However, today’s physicians have more precise techniques and tests to detect signs of disease. How ever there are many challenges in confirming that a person has lupus and not some other disease. Lupus is known as “the great imitator,” because its symptoms mimic many other illnesses. Also, lupus symptoms can be unclear, can come and go, and can changes.Therefore, a lupus diagnosis is made by a careful review of your current symptoms, your laboratory test results, your medical history, the medical history of your close family members (grandparents, parents, brothers and sisters, aunts, uncles, cousins.

Q- Are there any tell tale signs of Lupus?

A-Symptoms of SLE may include: Extreme fatigue , Headaches, Painful or swollen joints, Anemia (low numbers of red blood cells), Fever (over 100 F), Hair Loss, Mouth Ulcers, and a Skin Rash.Q- What are some steps you can take to help the process along if there are any in getting an accurate diagnosis?Open communication with your doctor about your symptoms and health status. Let the doctor know of your concerns and ask questions.

Q- What are some of the best tips you feel will help a patient once they have been diagnosed?

A- When you receive a diagnosis of a chronic illness such as lupus, many things about your life will change. One of the most important tools you have is yourself! Your own awareness is the key to successfully managing lupus. Your will want to be aware of: your particular symptoms and any changes in your health that could mean new symptoms; what you can do to help prevent lupus flares, and how to know if a flare is starting; and how to identify and control the sources of tension and stress in your life that often go along with chronic illness. Follow the instruction of your doctor. Take your medicines as prescribed. Know when to seek help for drug side effects or new symptoms that might be related to your lupus.

Q- How to you feel is the best way to get your family and friends to understand your diagnosis?

A- Family life will inevitably change when a family member receives a diagnosis of lupus. Good communication will be crucial in making sure that home life remains as normal as possible after you are diagnosed with lupus. Sharing information about the illness, including its symptoms, its treatment, and its prognosis, can lessen everyone’s fears and concerns. The most important thing you can do is let family members know the extent of your pain and fatigue. This will help them know when they need to chip in.

Q- If you have received a Lupus diagnosis where can someone go to on the Internet for more information?

A- For more information on Lupus go to the Lupus Foundation of America web site at www.lupus.org . This web site will give you information on lupus and how to contact the foundation to receive printed fact sheets or to talk to the Health Educator.
Contact Jakoter @ 847-719-2054 or www.jakoter.com for products that will assist you in organizing your emergency and everyday health needs, for a Professional Consultant to help organize your health journeys and for expert medical advocacy and consulting.

By Laura Heuer

Expert Health Organizer/Consultant

Answers by Nannette Ohman, Executive DirectorAutism Alliance of MetroWest, Inc.

Q- First can you tell me how long it usually take to get an Autism diagnosis and the approximate age?

A- It usually takes 6 to eight months to get an appointment with a doctor that can diagnose autism.-Typically between 2 and 4 years of age.

Q- Are there any tell tale signs of Autism?

A- Yes, No eye contact-appearing to be deaf, no language or loss of language- repetitive play- social ineptness-

Q- What are some steps a parent can take to help the process in getting an accurate diagnosis?

A- Making sure that they get a team evaluation/diagnosis is critical-making sure the doctor is reputable.

Q-What are some of the best tips you feel will help a family once a family member has been diagnosed?

A- Get on with good services- do not get hung up on the labels. Call it whatever you want but make sure your getting appropriate services in the home and at school. Early Intervention is key.

Q- How do you feel is the best way to get your family and friends to understand an Autism diagnosis?

A- There are several different ways- videos, books, support groups and talking to them. It depends on whom you are telling and how well you tell.For more information go to www.autismalliance.org This is for local Metro West families -in MA Call us at (508) 652-9900. http://www.dougflutiejrfoundation.org/ Doug Flutie Jr. Foundation For Autism

Contact Jakoter @ 847-719-2054 or www.jakoter.com for products that will assist you in organizing your emergency and everyday health needs, for a Professional Consultant to help organize your health journeys and for expert medical advocacy and consulting.

By Laura Heuer

Expert Health Organizer/Consultant
Answers by Sharon Gacki of The ALS Association, St. Louis Regional Chapter

Q- How long it usually takes to get a diagnosis of ALS?

A- ALS is often a difficult disease to diagnosis and can take some time. There is no one test for identifying ALS. The diagnosis is made by ruling out many other possibilities and by observing the continuing loss of muscle over a period of months. Most patients are diagnosed by a neurologist and have undergone an EMG, a nerve conduction test, and a muscle biopsy for confirmation.

Q- Are there any tell tale signs of ALS?

A- Because the disease is difficult to diagnosis and symptoms mimic other diseases, there are not many tell-tale signs of ALS. Typical symptoms may include: fatigue, respiratory concerns, muscle weakness or stiffness, muscle spasms, poor fine-motor coordination, swallowing difficulties, tongue weakness, speaking difficulties, and/or mobility difficulties.

Q- What are some steps you can take to help the process along if there are any in getting an accurate diagnosis?

A- The diagnosis of ALS is usually done by a neurologist through a careful examination of the medical history, a neurological examination, and the routine tests used to establish a diagnosis of ALS. By getting to a neurologist as early as possible and having the medical history in place, a person can help with the diagnosis process.

Q- What are some of the best tips you feel will help a patient once they have been diagnosed?

A- Once a patient is diagnosed, he or she should contact their local ALS Association. The St. Louis Regional Chapter offers a comprehensive network of in-home services, at no cost, to patient and family members. Additionally, a strong alliance exists with other not-for-profit organizations that are familiar with ALS. Lastly, a community partnership program with multiple local service providers offers specialized medical services to patients and families. Through these collective efforts, the chapter has created a solid continuum of care for ALS patients in Eastern Missouri as well as Central and Southern Illinois.

Q- How do you feel is the best way to get your family and friends to understand your diagnosis?

A- Most ALS patients appreciate when their family and friends take the time and opportunities to learn about ALS either though written material supplied by local ALS Associations or by using reputable Web sites. In addition, family and friends should not be afraid to ask the patient questions about what is happening to them as well as letting the patient discuss their feelings about the disease and its progression. Patients will tell the person if they are uneasy about discussing their diagnosis and symptoms.

For more information about ALS and an Amyotrophic Lateral Sclerosis diagnosis please visit www.alsa-stl.org.

Contact Jakoter @ 847-719-2054 or www.jakoter.com for products that will assist you in organizing your emergency and everyday health needs, for a Professional Consultant to help organize your health journeys and for expert medical advocacy and consulting.

Share the Care. Forming caregiving groups for people who are seriously ill. Great read by Julie Deardoff!read more | digg story