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.
Continue reading Ring the Bells
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.
Continue reading Caregiver Confidential: Can Hope and Acceptance Coexist with an ALS Diagnosis?
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.
Continue reading Caregiver Confidential: Diagnosis and Denial
By Kelsey Lester
Growing up my chores included: cleaning my room, doing the dishes, putting the laundry away, and suctioning my dad’s throat cannula. The last chore isn’t typical of most kids, but my growing up wasn’t typical. My dad was diagnosed with Lou Gehrig’s disease in October 1993. I was born in May of 1995, and my dad is still kickin’ it, so my relationship with ALS has been longer than most. My childhood and teen years didn’t only include household chores that were different, but also different life lessons.
Continue reading Growing Up With a Parent Who Has ALS: What I Learned
Holly Pinto is the owner and director of The Body Therapy Center and School of Massage, Ltd. In Swansea, Illinois. She has been practicing massage and a variety of different therapies since 1989. We are excited to have her contribute to ALS Connect as a guest blogger.
The first time I heard the word ALS it was when my father was diagnosed when he was 78 years old. Soon after his diagnosis, we figured out that the “nerve disease” that my aunt had died of was actually ALS. And just recently, I lost my niece from this horrific disease at just 40 years of age. This post is for you the caregiver and you the person LIVING with ALS.
Continue reading Practicing Relaxation with the Body Scan
By Stan Goldberg
This week’s blog post was originally published on thecaregiverspace.org.
Continue reading Understanding chronic & terminal illness: A guide for healthy people
Illness, including ALS, can attack without warning and can happen to anyone. No two people with ALS are living in the same situation and no two ALS illness courses will exact the same toll. But all couples, where one partner is placed in the dual roles of loving partner and personal care provider, will experience the greatest test on a marriage and that of their commitment to it. It is essential that couples continue to function as partners, and not become only patient and caregiver. Continue reading ALS Caregiving – Preserving Your Relationship with Your Partner