Reflections from our Director of Programs and Services for Patient Care

Anna Zelinske, M.A., CRC, CCM joined our staff in the role of Director of Programs and Services for Patient Care last month. Anna has 19 years of experience in the disability field, with a Bachelor’s Degree in Psychology and a minor in Human Service Agency Management from Missouri Valley College, and a Master’s Degree in Rehabilitation Counseling from Maryville University. She has a niche for developing and overseeing quality programs with a solid understanding of addressing the needs in the community and working with a team to making a positive impact for those served. In today’s post, Anna shares her story of how she got her start in the disability field and her work at the Chapter so far.

Continue reading Reflections from our Director of Programs and Services for Patient Care

What You Should Know About Planned Giving

The questions in this post are answered by by Jessica Chapman, the National Director of Planned Giving with The ALS Association. She oversees the planned giving department and focuses on donor relations and marketing. Having worked in gift planning since 2009, Jessica enjoys connecting donors and their advisors with gift options that best meet their needs.

Continue reading What You Should Know About Planned Giving

Living With ALS: Ken Danridge

Ken Danridge was just 56 years old when he was diagnosed with ALS. Married for 13 years to his wife Amy, Ken is the father of three young children – Blake, Maya and Addison. Ken also served in the U.S. Air force for nearly 20 years and was stationed in Oklahoma City during the terrorist bombing in 1995. With the muscles in his body progressively weakening, Ken now uses a motorized wheelchair to get around, a feeding tube to eat, and a ventilator to breathe. Despite the many limitations ALS has imposed on his once active lifestyle, Ken remains a beacon of positivity, intent on using his diagnosis to connect with others with the disease and influence and motivate the people around him. Below, Ken shares his philosophy on living with ALS.

Greetings, my name is Ken and I have ALS. I was officially diagnosed in March of 2017, but I had symptoms for about two years prior to the confirmation. I didn’t really think much about the periodic loss of fine motor skills in my left hand, but when I developed a dropped left foot I became concerned.

Continue reading Living With ALS: Ken Danridge

Using Medical Marijuana to Treat ALS Symptoms

When it comes to treating symptoms associated with ALS, people will try a variety of methods to see what will work best for them. Among those options is medical marijuana, or cannabis. Although this can be a controversial treatment method depending on where you live and your outlook on the drug, some people with ALS believe the benefits provided by cannabis makes it easier to live with ALS. Here’s what you should know about cannabis and ALS treatment.*

Continue reading Using Medical Marijuana to Treat ALS Symptoms

Perspectives: On Caregiving

By Gregg Ratliff

 

Shortly after Nancy’s diagnosis of “Lou Gehrig’s Disease” I read on the ALSA website that “ALS is not just the patients disease, it is a family’s disease.” My care-giving perspective has allowed me to truly understand and validate this statement. Our family’s life changed dramatically over the seven years of Nancy’s illness. It strengthened some things, like our love, our resolve, our faith and our attitude control toward things we faced in life. I personally spend less time worrying and focusing on things I had no control over (which are most things in life). This provided me more time to focus on important and often overlooked things around me. My perspective changed tremendously. Joyce Meyer once said, “Your problem is not your problem. Your problem is your attitude toward your problem.”  Marcus Aurelius said it this way, “Our life is what our thoughts make it.” So, anytime I began feeling sorry for myself I simply looked at my wife lying in the bed and said … “Gregg, you have no right to feel sorry for yourself. Be strong for her and yourself!” When I thought Nancy might be facing difficult times I would play music for her, read the Bible to her, pray for her, massage her feet and hands with lotion and remind her how much I loved and admired her.

Continue reading Perspectives: On Caregiving

Understanding Pseudobulbar Affect

Pseudobulbar affect, also known as PBA, is a condition that causes outbursts of sudden, uncontrolled laughter or crying that don’t match how a person feels or that is out of place in a given situation. Outbursts of laughter or crying can range in duration and severity and can occur up to several times a day. Other symptoms of PBA include inability to control laughing or crying, excessive laughing or crying when something is only mildly funny or sad and intrusion of thoughts that cause excessive laughing or crying.

PBA develops when damage is present in the area of the brain responsible for controlling what is considered to be normal expression of emotion. The damage can affect brain signaling system which causes involuntary crying or laughing. Damage occurs when there is a neurological condition or brain injury, making the condition common among people with ALS. For those with ALS and PBA, bouts of crying are more common than laughter. People with ALS can also have frontotemporal dementia (FTD), which is another condition common with diseases like ALS that cause neurological damage.

Continue reading Understanding Pseudobulbar Affect

Every August Until a Cure

LeBron James did it. Bill Gates did it. Oprah, Steven Spielberg and President George W. Bush did it. But the majority of people who took the ALS Ice Bucket Challenge in 2014 were not celebrities, just ordinary folks who got caught up in the fun of nominating friends and family on social media to be doused in water and ice for a good cause.  It’s safe to say, however, that there was definitely another reason why the Ice Bucket Challenge gained traction. ALS is a relentless disease that takes away a person’s ability to move, walk, talk, and breathe on their own and keeps them trapped in their body. To watch someone you know go through this is absolutely devastating, and knowing that there is no cure can sometimes make people feel both helpless and hopeless. For the thousands of individuals affected by ALS, this painful reality was fuel for action that inspired a community of people to come together four years ago to create the original ALS Ice Bucket Challenge.

What followed from this largest viral social media movement of all time was not just news feeds packed with ice bucket challenge videos, but real and meaningful impact for people with ALS – and for researchers searching for treatments and a cure.  The effects of the ALS Ice Bucket Challenge continue to be felt in the ALS community.

Continue reading Every August Until a Cure