“Not Alone” – A Daughter’s Perspective

Jordan Jhaveri is part of a family living with ALS. She was eleven when her dad, Akhil, was diagnosed in 2011. Here she gives her sixteen-year-old perspective that was recently posted on her dad’s blog recently.

As my dad’s health declines it’s gotten a lot harder to “keep on keepin’ on.” I’ve decided to share my perspective so that maybe other people can know they are not alone in their battles.

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Jordan Jhaveri

No one is truly “put together.” No one actually has everything “under control.” I am convinced that life is a big card game in which it is part chance, part strategy and planning, and we make up all the rules as we go. Even when someone seems to be completely untroubled, there is no way to know what happens behind closed doors.

The ALS Association Care Services Survey Results

The ALS Association is pleased to share the results of the 2016 Care Services Community Survey. Below we offer some background on the survey and highlight a few significant responses. We also provide information on how you can give additional feedback on The Association’s programs in September.

Background

In July 2016, The ALS Association invited members of the ALS community (defined as people living with ALS, family members, and caregivers) to participate in a community care services survey. This survey included 15 questions and was shared via several of The Association’s communication channels. Nearly 800 members of the community responded.

Providing multiple opportunities for people living with ALS to comment on our work is vital, and the insights gained from this survey will be combined with the results of our ongoing series of Listening Tour meetings with the ALS community. We will use all of this information to inform strategic planning, help identify and prioritize program initiatives, focus on potential program improvements, and contribute data and information for advanced decision-making.

Survey Highlights

When asked what programs they have accessed through local ALS Association chapters, 52 percent responded that they have utilized an equipment loan closet. Forty percent visited a certified center or recognized clinic, 34 percent accessed a support program, and 31 percent received an education service from their chapter.

When asked which areas The Association should be devoting more care services resources to, more than half of respondents chose assistive technology (58 percent) and home health benefits (52 percent). Thirty-nine percent chose programs that support increased access to care and services, while 36 percent wanted more resources related to Medicare, Medicaid, and veterans insurance programs.

Thirteen percent of respondents also indicated that finances, costs, and/or insurances make up the greatest challenge that they and their family face. Other significant challenges include accessing home health benefits (10 percent) and equipment loans (nine percent).

For more information about the survey, including responses for all questions, read the full report.

Another Opportunity for Feedback

Did you miss the chance to take the Care Services survey? We’re providing another opportunity for the ALS community to give feedback during our second “virtual listening tour” on September 27, 2016 from 1-3 p.m. EDT. Register here!

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Every Bravery Adds Up

Jeanna Grammer lives in Tuscaloosa, Alabama. She is employed at a non-profit Hospice and feels so blessed in making a difference! Her true passion is being a voice for people with ALS by volunteering with her local ALS Association chapter and writing letters in her local newspaper.

My mom was diagnosed with ALS in May 2011. She literally lost her speech within 6 weeks of slurring her words. She was semi-retired but enjoyed her job and co-workers, so she still worked part time at a hospital as an insurance biller. Bravery!

Unfortunately, she had to retire just two months later because she was unable to talk to insurance companies on the phone. She retired with over 25 years and the retirement celebration was fit for a queen! She wasn’t sad that day; she loved seeing all her friends, co-workers and family. She never lost her loud Italian laugh and it was heard many times at the celebration. Bravery!

Every Memory Adds Up

Megan Wilkerson lost her father, Dr. Walter Root, to ALS earlier this year. Her family’s story was recently profiled in a feature article in the San Antonio Express-News. In her #EveryDropAddsUp story below, Megan describes the value of the memories she was able to make with her father and family after his diagnosis.

My dad lost his battle to ALS on May 31, 2016. I had known this day would come since his diagnosis on January 5, 2015. We had our suspicions something “bad” was happening with Dad, but ALS was something that happened to ‘other people,’ not us. I had become aware of the disease due to the Ice Bucket Challenge in Summer ’14, but had NO idea what would lie ahead.

Our family decided to embrace the diagnosis and enjoy our lives together. Since there is no cure or effective treatment for ALS, we knew the likely hood of him being “cured” was dismal. My dad chose to live with his disease, even though we lost him a little each day. He traveled, he loved, he laughed, he lived. I can honestly say (with many tears) he lived 100 years in his 59.

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Every Thought Counts

Caroline Tredway’s sister, Nell Hardy, is currently living with ALS. In response to her sister’s #EveryDropAddsUp story, Caroline submitted her own essay, titled  “Every Thought Counts.”

Every Thought Counts

Picture, for a moment, that you’re in a straitjacket. You can’t move any limb to free yourself. All day and night long.

That’s how I imagine my younger sister Nell has felt over the past seven years as she battles the biggest foe of her life: Amyotrophic Lateral Sclerosis, or ALS.

I think of Nell when I do the simplest of things that are out of reach for her.

Every Person Adds Up

Julie Fitzpatrick’s grandmother (above left) died of ALS and Julie (above right) has recently been diagnosed with Primary Lateral Sclerosis. Julie lives in Reston, Virginia and is a scientist, specializing in human health risk assessment, for the U.S. Environmental Protection Agency.

ALS changes countless lives. It is nearly impossible to count every person.  It is not just the people with ALS, but everyone they touch and everyone who touches them and on down the line.

From the time I was a small girl I knew that my grandmother, Mildred Anderson, died from complications resulting from ALS.  She died in February 1960, when my mother was preparing to give birth to my older brother.  One of the big regrets of my mother’s life is that her mother never got to meet her four children and see what wonderful people they became. It is not just every person that has ALS that adds up, it is all the people in their lives and those that come after them. It could be said that “Every Family Adds Up.”

“Me, You, and Lou” – A Letter from Someone Newly Diagnosed with ALS

Adam Smith, 37, was an overly active person until a mysterious, undiagnosed illness turned his life upside down. He saw multiple doctors until one realized the problem was not in his head, but very real. After a trip to the Mayo Clinic, Adam was diagnosed with Lou Gehrig’s Disease in May 2016. After his diagnosis, Adam sent the following letter to his friends and family. He is supported and loved by his wife, family, friends, and sweet Akita.


Dear Friends,

To point at a day on the calendar as the best and worst day of your life is a rare feat. On May 27, 1985, my wife was born – best day of my life. On May 27, 2016, I was told I’m dying – worst day of my life.

“You have Lou Gehrig’s Disease. There is no treatment, there is no cure. I’m sorry, Adam.”

Mayo Clinic, Rochester, MN
May 27, 2016

As my doctor delicately explained that my body will slowly become paralyzed over the next 2-5 years until I can no longer take a breath, my thoughts drifted to my wife and our families. Turning 31 and being told your husband is dying is unimaginable. I could only think how every birthday for the rest of her life she will have a painful memory that will never fade over time. Thirty-one is too young to be told you’re going to be a widow. It’s too young for dreams to be crushed and vows to become impossible to achieve. Thirty-one is too young to be told you’re going to be taking care of your sick husband for the rest of his short life. Heartbreaking.

A Different Kind of Ice Bucket Challenge

This post, written by third year medical school student Jeremiah White, first appeared on Transforming Medical School, the student blog of the University of South Carolina School of Medicine Greenville

We’re nearing the two-year anniversary of that time when countless videos flooded your social media feed of people dumping buckets of ice water on themselves—the Ice Bucket Challenge, it was called—all to raise awareness for a disease called ALS, otherwise known as amyotrophic lateral sclerosis, or Lou Gehrig’s disease. You may have even participated in the challenge, as my medical school did. I remember the afternoon prepping for it. My inner junior-high boy came out in full force, trying to scavenge around the house for the biggest “bucket” I could find. Because, of course, if I was going to do this, I needed to do it right: with as much freezing-cold water as I could somewhat reasonably dump over my head. I searched the house high and low. I needed something big. “We’ve got a large mixing bowl in the kitchen,” I thought. Bigger. “I could use that cleaning bucket under the sink.” BIG. GER. “The trash can. Perfect.” Yes, I emptied (and cleaned) my trash can and filled it all the way with ice and water. Even threw a little salt in there to make it super cold. I lined up with my colleagues, and one-by-one in wave-like fashion we proceeded to pour the contents of our buckets over ourselves.

ALS Entrepreneur Kevin Gosnell Passes Away Leaving Important Legacy in ALS ONE

Kevin Gosnell, founder of ALS ONE, passed away on Monday because of complications from the disease. Gosnell was diagnosed with ALS in spring 2015 and immediately put his business acumen and CEO leadership skills to work, convening the best minds in the ALS community. He founded ALS ONE in January 2016 and brought together leading neurology experts and care specialists from Massachusetts in partnership to leverage their institutions’ strengths to expedite progress toward finding a treatment for ALS within the next four years.

Every Day Adds Up

This August, we’re sharing stories of the individual actions that add up to make a difference in the lives of people living with ALS. Today’s story comes from Nell Hardy, pictured above at the 2016 Walk to Defeat ALS in Manhattan with her three sons, Brendan (left), Connor (middle), and Emmet (right). Her fourth “son,” Rico, is perched on her lap, which is his favorite spot to spend every day. Nell and her family are also featured in our Every Drop Adds Up video, crossing the finish line together.

Every day adds up!
I’ve been partnered with ALS for eight years.
It is not a gentle companion.
The disease is progressive and exacting.
I haven’t eaten food or talked for five years.
I can’t laugh, sing, or scratch an itch.
But I think I am winning.
Somewhere between my first bout with pneumonia and the blood transfusion for low iron, I put down my weapons.
The disease was too cunning and huge for me to take on!
Instead, I practiced acceptance and hope.
As the disease whittles away at my 5′ frame, I gather my friends and family around me.
We believe, we are patient: there is a cure.
Life is too good to give up.

We want to hear from you, too! How would you fill in the blank? “Every ___________ adds up.” Tell us about your ALS journey and your commitment to advance the fight against ALS. Tag your answer on social media with #EveryDropAddsUp or send us a blog post!