How Can I Help?

More than 65 million people, 29% of the U.S. population, provide care for a chronically ill, disabled or aged family member or friend during any given year and spend an average of 20 hours per week providing care for their loved one. (Caregiving in the United States; National Alliance for Caregiving in collaboration with AARP; November 2009)

Caregiving for someone with ALS – while done with a great deal of love and devotion – often times exacts a great emotional and physical toll for the caregiver. Caregivers are often employed outside the home and may be the primary source of household income, which adds even more demands, responsibilities and stress.

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Resources for Caregivers

During National Family Caregivers Month, we recognize and thank the everyday heroes who devote their time and energy to taking care of a loved one.  Millions of people around the country take on the role of caregiver for friends and family members; providing care day and night, on the weekends and even on demand.  Many people, especially those that need long-term care, rely on family and friends as their only source of help.  While many take this on out of love and receive satisfaction from caregiving, it can take a toll over time and even cause detrimental effects to the caregiver’s health and well-being.  It is important for caregivers to make sure they are taking care of themselves, even as they are taking care of others.  Below we have compiled a list of resources to help those in our community navigate the world of caregiving:

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Veterans Face Higher Risk of ALS

Existing evidence supports the conclusion that people who have served in the military are at a greater risk of developing ALS and dying from the disease than those with no history of military service. Study after study continues to demonstrate this to be true: If you serve in the military, regardless of the branch of service, regardless of whether you served in the Persian Gulf War, Vietnam, Korea, or World War II, and regardless of whether you served during a time of peace or a time of war, you are at a greater risk of dying from ALS than if you had not served in the military. In fact, a Harvard University research study tracked ex-service members back to 1910 and found that U.S. veterans carry a nearly 60 percent greater risk of contracting ALS than civilians.

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Telling Children About ALS

A diagnosis of ALS can be frightening and challenging for most adults. You may be feeling angry, confused, sad, or afraid. You may not even fully understand what ALS is or the impact this disease will have on you and your family. You may also not know how to tell others about your diagnosis, what words to use, or how in-depth your explanation should be. Telling other adult family members and friends may be difficult enough, but finding the words to tell your children is often even harder.

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Ring the Bells

By Idelle Winer

Ring the bells that still can ring
Forget your perfect offering
There is a crack in everything
That’s how the light gets in.

—Leonard Cohen, “Anthem”

Remember the exaltation of discovering a new musician or poet? In July 2009, my husband Brian had that experience after watching a DVD of Leonard Cohen’s Live in London concert. Brian enjoyed a variety of music genres, ranging from rock music to Broadway musicals, but did not listen to Leonard Cohen. After viewing the DVD, however, Brian became Cohen’s biggest fan—he dubbed it the “religion of Lenny.” Brian even took the DVD to the ICU when he had his feeding tube placed in August 2009, discussing the meaning behind many of Cohen’s lyrics with the hospital’s rabbi and ICU nurses. Brian was hooked, listening religiously until the end of his life.

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Wisdom from Morrie

Morrie Schwartz, a professor emeritus of sociology at Brandeis University, was diagnosed with ALS in the summer of 1994 and passed away in November 1995. He devoted the last year of his life to using his illness to teach others about living and dying. He was an inspiration to friends, students and colleagues—young and old—on dying with dignity. He wrote 75 aphorisms that he called “Reflections on Maintaining One’s Composure While Living With a Fatal Illness”. These aphorisms are the basis of his book,  Letting Go (later republished as Morrie: In His Own Words).

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Caregiver Confidential: Can Hope and Acceptance Coexist with an ALS Diagnosis?

By Idelle Winer

I believe in the sentiment, “Hope springs eternal.” In the context of illness, hope is the belief that a patient will improve. Acceptance, on the other hand, suggests a patient’s coming to terms with a disease. Therefore, how do you reconcile hope with a diagnosis of ALS? Can hope and acceptance of a terminal disease coexist? I think the answer is yes.

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Living with ALS: Staying active and staying safe

 

By Elissa Held Bradford, PT, PhD, NCS & Julia Henderson-Kalb, MS OTR/L

Staying active and staying safe are important goals to individuals and families living with an ALS diagnosis. As a person living with ALS you may wish to maintain your independence and participate in activities meaningful to you. This may be taking a trip, going to the park with your grand-kids or being able to go to the bathroom on your own. As a family member, you want to support your loved one’s independence but also his/her safety. As physical and occupational therapists, this goal is our priority too. A common challenge to achieving this goal is falls and concern about falling. This is often complicated by the fact that we may have different perspectives on what constitutes fall risk and independence. However, we can find a happy medium by communicating, planning, and making decisions together. In this short blog post we will discuss falls, fall risk, strategies to prevent falls, fall recovery, risk tolerance and even sense of self to help you stay active and stay safe.

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Bridge the Silence

Gina Baldwin is a licensed Speech Pathologist with over 30 years of experience in the field. She holds a Bachelor of Science degree in Speech Language Pathology and a Master of Science degree in Speech Language Pathology from Southern Illinois University at Edwardsville, IL. Strongly motivated to make a difference in people’s lives, she currently devotes the majority of her professional time to providing speech therapy services in healthcare facilities and in home health environments. We are excited to welcome her as a guest blogger to ALS Connect.

As a Speech Language Pathologist, I have experienced the joy of my patients’ successes as well as my share of frustration that I could not help them achieve more. I recognized a major gap in communication when I was providing speech therapy to a 68 year-old speech-impaired patient. She and her family became frustrated while trying to communicate using Skype. My patient tried to position her picture communication board toward the camera and pointed to pictures. Her family could not see what she was pointing to and there was silence. The picture communication board did not have speech output. I stood there and watched my patient become annoyed and I experienced it too.

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Caregiver Confidential: Diagnosis and Denial

Today is the first post in a series on ALS caregiving by guest blogger, Idelle Winer.  Idelle will be sharing her journey as an ALS caregiver and asking you to share yours as well.

Are you the caregiver of a loved one with ALS? Just as the journey of every ALS patient is unique, so are the experiences of family members and caregivers. My name is Idelle, and I would like to share my journey, beginning with how I learned that my husband Brian had ALS.

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