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.

Why Must We Keep Our Own Health and Medical Records
If you ask CK Wilde why she thinks you should keep your own medical records she will tell you:
Reason Number 1 – Medical Records Get Lost or Destroyed
Reason Number 2 – Memory Fails & Doctors’ Notes are Impossible to Read
Reason Number 3 – Doctors Don’t Always Communicate With Each Other
To Read the whole post please click here 3GenFamily Blog
While you are there, please check out all the other wonderful articles that have been written and posted.

What is a Professional Health Organizer Consultant?

By Laura Heuer
Expert Health Organizer Consultant

At the bottom of each of our blog post you will see the below caption.

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.

What exactly is a Professional Consultant? Good question!
With so many professional labels and consulting firms I think we should clarify this a bit.

Jakoter has products that do a great job to organize YOUR health. Sometimes though YOUR health can be way to complicated or you just may not be feeling up to the task depending on your situation. That is when a Jakoter Health Organizer Consultants can help. Jakoter Health Organizer Consultants (JHOC, for future reference throughout the article) consist of individuals or businesses that are mostly comprised of Professional Organizers. They know how to organize your information clearly, although they are not medical professionals. The JHOC are taking virtual seminars to learn about how all our products and services work to best fit your needs.
The best part is that we are not just in one location! Call us and see if we can help you where you reside.

Why is this a benefit?

Situation one-You have just been blessed with a set of twins, yet you already have three children and now you are in need of a little help. A Jakoter Health Organizer Consultant can help you organize your new babies’ health records, the rest of your families records, and how about that spare room that really is needed now? Let’s get that organized!

Situation two- your Mom has been diagnosed with diabetes. New food, new doctors, new medications and a new routine. You live three hours away. Call a JHOC to help get you and your Mom on the right track.

Situation three- you really cannot handle the hospital paper work, the bills, you are just not ready yet. We understand, but the bills keep coming anyway. Call us.

Other situations

Seminars
Workshops
Fundraising at Walks, Runs
Expos

Call us 847-719-2054
Email us info@jakoter.com
Visit our web site www.jakoter.com

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 Helath Organizer/Consultant

Answers By Sharon Feder

Q- First can you tell me what a Certified Health Summary can do for a person who is having difficulties getting a proper diagnosis?

A-The Lynx Certified Health Summary^TM, being developed from a person’s actual medical record, provides a complete, concise and reliable, summary of a the medical history so that all health care providers, the patient, and any caregivers can be using the same information for making decisions, and directing care.

Typically, people with complicated or undiagnosed medical conditions see several doctors and care providers. The various reports quickly become lost in a stack (either paper-based or electronic) of records that often contain errors and incomplete or missing information. The patient rarely knows what is in their records and their care providers rarely examine the case history carefully in their limited treatment time. Being in pdf form, the Lynx Summary is quickly incorporated into any practitioner’s own medical record – either electronic or paper-based.

The Lynx Certified Health Summary^TM affords people the chance to make sure the best available information is getting to their doctors and care providers. It also includes information not found in a typical medical record that can be invaluable for crucial decision-making.

Additionally, the Review-by-Two process used to create the Summary means that a physician and nurse team is actively involved in examining every detail of the person’s care and are able to guide the development of problem lists and other essential questions to discuss with their providers.

Finally, this concise Summary can be easily sent to experts for additional and often crucial medical opinions.

Q-How can someone determine if this of service might be right for them?

A-The Lynx Certified Health Summary^TM is useful for nearly anyone to effectively organize their medical history and to manage ongoing changes and information. It is particularly useful for people who see several doctors; have a complicated condition or health history; change primary care providers; have difficulty finding a diagnosis or effective treatment; fill out many lengthy forms for procedures, doctors or clinics; are caregivers for another person; experience dementia or intense pain-related conditions; or anyone who wants to better spend their time and energy doing what brings them pleasure and joy rather than engaging in the frustrating and complex task of managing their medical condition.

Q-Did you get a Certified Health Summary?

A-I do have a Lynx Certified Health Summary^TM for my middle son who has a very complicated medical history.

Q- How is it working for you?

A-Great! My son’s doctors and care providers are able to spend appointment time focusing on what my son’s current concerns and needs might be. Also, he had neurosurgery out-of-state last year and we were able to be completely relaxed throughout the whole experience. We had very little paperwork to manage because the Summary answered nearly every question the many new doctors and facilities had to ask.

Also, we were confident, (including my son,) that the necessary research, investigation, and asking the right questions of the right experts had been done in advance. We knew we were doing the right thing, so there was really no stress or concern.

Q-Do you still keep your Certified Health Summary up to date?

A-We have the Summary updated as often as after every office visit, depending on what the issues are. When he’s doing well, we update usually two or three times each year.

Q-Do you feel it was worth it?

A-Each of my son’s doctors and care providers have said that managing his complex condition is made much easier because of the Summary. It acts as an ongoing ‘virtual’ care conference, so it feels to all of us involved like we are continually in good communication with each other through the Summary.

Q- Did you get a better diagnosis because of it?

A-Absolutely. My son has an unusual combination of conditions. Having the diagnostic studies, procedures, results and the many experts and previous diagnoses (active and resolved) listed makes his situation credible and traceable. This helps current and new doctors have the details readily available to sort through options and thoughts and to know what has been already done or ruled out.

Q- What are some steps you can suggest if someone wishes to have a Certified Health Summary done?

A-As far as we know, Lynxcare provides the only Certified Health Summary or professionally prepared summary of this type. People can contact us directly at 888.670.5969 or by email: info@lynxcare.net to speak with someone about Lynxcare’s summary or services. Please let us know you heard about us through Jakoter! www.lynxcare.com

Thank you! I like the idea of having a ‘virtual’ care conference.

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

Jakoters Healthy organizers health care tips- Keep all health-related documents including family medical history, symptom journals, test results, immunization charts, list of prescriptions taken, insurance coverage, blood work, question/answer sheets, etc. in one organized binder. Having the information at your fingertips can be a real timesaver and it can also help ensure everybody involved in the care of a family member has the information that they need.

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.

WhatFriendsDo.com

January 2008 Newsletter Getting Organized

Organize friendships? Well no, not really. But sometimes with the hectic pace of our own jobs and families our intentions never become actions. Sometimes it is good to actually schedule some time for friendship. Rely on your calendar: go to your calendar (right now!) and add reminders for the things you want to do for and with your friends. Part of being a good friend can mean helping someone else get organized. Keeping track of medical records, doctor appointments, and sorting out all the bills. One of our partner websites (www.jakoter.com)offers some really great resources for getting organized, and we encourage you to check them out. You might even get motivated to get all your own medical records organized! Read more about the importance of friendship during life-changing event. What Friends Need to Know.

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

Finding that there is a problem with your health can be devastating, heartbreaking and definitely unsettling. But, what do you do when you know something is not right and your doctors cannot find an answer?

• Do not give up.

• Find new doctors with a fresh look at the situation they may have new information that another doctor in the past did not have. A new doctor may have the key you have been looking for.

• Do not give in to “it is in your head” or the nay sayers. You know how you feel. But be realistic. Write down all your symptoms and medications. This will make you a more reliable patient.

Write down your symptoms daily.

• When you have solid symptoms and daily writings of your symptoms then the doctors have more to go on to figure out the puzzle.

• When you are writing you may even find patterns that you may have not seen before.

Have all your questions written out ahead of time.

• Everything you need to ask should be written out ahead of time.

• Once you ask your questions make sure to write down your answers.

• Write down your next steps.

• Write down how to take any new medication.

• Write down where to go next (directions, phone numbers, etc.)

If at all possible take someone with you to your doctor appointments.

• They will give you support in remembering what was said and what to do next.

• They also are good for support in asking questions you may not think of.

• Your support person also can have a different perspective then you and a lot of times this is good!

Follow through.

• When you do get a doctor that you feel is on the right track then follow through.

• Do what needs to be done to get the “right” diagnosis.

Support.

• If you need support make sure to ask!

• There are several support groups in almost every category of illness.

• If you still cannot find a diagnosis you are not alone. There are more than 6,000 rare disorders that, taken together, affect approximately 25 million Americans. www.rarediseases.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.

• EveryPatientsAdvocate.com is another great source for information.