Portraits of ALS: Veteran Sean Nolan

In early 2016, Sean Nolan thought it might be time to amp up his workouts.  The 46-year-old was feeling more tired than usual and experiencing some overall weakness.  “I didn’t think anything of it,” he says.  “I just thought I needed to go to the gym more.”

Months later, after his step daughter Jaylin pointed out some twitching in his arm, Sean noticed that his right hand was noticeably weaker.  When he told his primary care physician about his symptoms at a routine physical, the doctor immediately referred him to a neurologist.  Alarmed, Sean’s girlfriend of eight years, Nikki, started researching Sean’s symptoms online. Up popped sites describing ALS. “I panicked,” she says.  But Sean was not convinced.  “Everything I’ve read says that I’m an atypical age.  The average age for people with ALS is mid-50’s.  I’m ten years younger than that.”

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Caregiver Advice from Caregivers for People with ALS

Eat and sleep regularly. Take time for yourself. Breathe. This is often the advice caregivers receive. Although these are important it’s sometimes not the most helpful or only scratches the surface of what advice caregivers really need, especially for those who are caring for someone with ALS. Based on what caregivers in our area have experienced, here is a list of advice specifically intended for caring with someone with ALS.

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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.*

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Perspectives: ALS and Marriage

By Gregg Ratliff

I feel my wife Nancy was the hero in our family. I was just the parsley on the side of her dinner plate. According to estimates from the National Alliance for Caregiving, during this past year, 65.7 million Americans (or 29 % of the U.S. adult population involving 31 percent of all U.S. households) served as family caregivers for an ill or disabled relative. I was just one of many. I’m fortunate that God gave me a deep love for Nancy and a strength that went beyond my own capabilities. The person being cared for also plays a major role in the caregiver’s capabilities. Nancy’s personal qualities like her resolve, optimism, strong faith, love of life, love for family and love for people in general made my job easier.

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3 Things a Physical Therapist Wants You to Know

This post features insights from Elissa Held Bradford, PT, PhD, NCS, MSCS, physical therapist for the ALS Certified Center of Excellence at Saint Louis University. As part of a multidisciplinary team, she works with other health care professionals specially trained to address the needs of people living with ALS. She shares advice for people with ALS in light of physical therapy month.

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Understanding Palliative Care

When it comes to a disease like ALS, quality of life is challenged on a regular basis as symptoms progress. Receiving treatments and developing a health care plan are important steps with ALS, but doing it alone can be difficult. Having someone help guide those decisions and work with you can make the world of a difference and it’s possible with programs like palliative care. Because palliative care can be hard to navigate, listed is basic information and how it’s different from hospice care.

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ALS and Frontotemporal Degeneration

It is a known fact that frontotemporal degneration (FTD) is connected to ALS and complicates an already difficult diagnosis. In light of World FTD Awareness Week, here are more details on the connection between ALS and FTD. Republished with permission from The Association for Frontotemporal Degeneration (AFD). 

The discovery in 2011 that the C9orf72 gene mutation can cause both FTD and amyotrophic lateral sclerosis (ALS) has transformed a long held belief that ALS is ‘purely’ a movement disorder and that FTD is ‘purely’ a cognitive or behavioral form of dementia.

It is now recognized that the C9orf72 gene is the most common gene causing hereditary FTD, ALS and ALS with FTD. We now know that several other genes can also cause both diseases. FTD or frontotemporal degeneration is a progressive brain disease with changes in behavior, personality, and language dysfunction due to loss of nerve cells in the frontal and temporal lobes. ALS is a neurodegenerative disease with loss of upper (located in the brain) and lower (located in the spinal cord) motor neurons that leads to paralysis, dysphagia, dysarthria and eventually respiratory failure.

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