After 25 years I’m Still Fighting Against ALS

By Maureen Barber Hill, President/CEO of The ALS Association St. Louis Regional Chapter

Although I think of my dad often, Father’s Day always brings with it a special pang of sadness.  It’s been 25 years now that I have not been able to spend Father’s Day with him  —  he lost his battle to ALS in September of 1992.  As the years pass I think I will always feel like a part of me will always ache – like I’m missing something, but more so someone, especially around those pivotal moments of my life and my children’s lives.  My kids never got the opportunity to know what a great man he was.  My daughter Meghan was only four years old and my son Michael was just seven days old when ALS took their grandfather from them.

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Techniques to Reduce Muscle Spasms

Our guest blogger this week is Christie Seidl, a massage therapy student from The Body Therapy Center and School of Massage in Swansea, Illinois.  Christie will obtain her MBLEx certification this August, and currently has her ASCP MLT certification and an associates degree in laboratory science.

For people with ALS, muscle spasms are a common and sometimes painful occurrence. Spasms and cramps are characterized by a sudden, involuntary contraction of muscles, and are the result of the ongoing disruption of signals from the nerves to the muscles that occurs in ALS.   There are four simple techniques you can use to help alleviate the pain and help stop the spasm.

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The Rudin Family Keeps on Truckin’ at the Walk to Defeat ALS®

When you attend a Walk to Defeat ALS®, you’ll be surrounded by hundreds of people who have been touched by this disease, each with their own story of how ALS has impacted their lives. Some are still fighting, and complete the route in their wheelchairs, next to an army of supporters cheering them on.  Some have lost someone special to the disease, but are committed to continuing the fight in memory of their friend or loved one.  All are warriors in the fight to defeat ALS.

Chatham, Illinois resident Ben Rudin was just 40 years old and the father of two young sons when he was diagnosed with ALS. He and his wife, Rebecca, participated in the Springfield Walk to Defeat ALS®, forming a team of family and friends to walk in support of a cure and to fund care for people living with the disease. An avid music lover and fan of the musical group, the Drive By Truckers, the family named their team, Truckin’ with Ben. 

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Nine Questions with Dr. Ghazala Hayat

Dr. Ghazala Hayat is board certified by the American Board of Psychiatry and Neurology and the American Board of Electrodiagnostic Medicine and has clinical neurophysiology certification by the American Board of Psychiatry and Neurology.  She is the director of Neuromuscular Services, Clinical Neurophysiology Fellowship and Clinical Neurophysiology Laboratory and the ALS Certified Center of Excellence at Saint Louis University.

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Get Involved in the Fight Against ALS

May is ALS Awareness Month, a great time to get involved in the fight against ALS.  In an earlier blog post, we told you a little about how you can be a voice for families living with an ALS diagnosis by becoming an ALS Advocate.  This week, we want to introduce you to some other ways you can have some fun and make a difference!

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ALS Advocates Will Make Their Voices Heard

Tomorrow, more than five hundred advocates will gather on Capitol Hill in Washington, D.C. for National ALS Advocacy Day.  ALS advocates from all around the country will meet with members of Congress to share their stories and educate legislators about the importance of continued funding for ALS research and patient care.

Through the efforts of ALS Advocates,  more than $1 billion in federal funding has been generated for ALS-specific research since 1998. In fact, ALS Advocacy efforts have been responsible for many legislative victories, including securing veterans benefits, enacting the ALS Registry Act, appropriating funding for caregiver relief and the ALS Research Program at the Dept. of Defense, and passing the Medicare waiver.

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Caregiver Confidential: Say What?

During your loved one’s journey with ALS, did friends, coworkers, or medical professionals make well-meaning but insensitive comments? Even the most well-intentioned person can utter inappropriate “words of encouragement” and behave in a hurtful manner. Being around terminal illness can make people uncomfortable, and as a result, they unintentionally say the exact wrong thing. As a caregiver, it’s not uncommon to hear, “It’s God’s will,” “Things happen for a reason,” “I don’t know how you do it,” “I know how you feel,” and “Aren’t you relieved that it is all over?”, among others. Isn’t it preferable to be a good listener, do a helpful chore for the family, or give a hug, which are true expressions of kindness and compassion?

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