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.
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.
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.
Volunteers are an invaluable part of the ALS Association team. Whether it’s providing patient support, lending a hand at events, or helping out in the office, their work and dedication is deeply appreciated. Each volunteer has their own reason for getting involved that is unique to them. In an effort to share their stories, here are insights from some of our volunteers.
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.
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.
A community partner event is a fundraising activity that is organized and managed by a family, group or individual who is acting independent of The ALS Association St. Louis Regional Chapter. This August, five community partner events took place across eastern Missouri and central and southern Illinois, ranging from a tractor pull, an awareness walk before a baseball game, and two different golf tournaments. There was even an ALS Ice Bucket Challenge event earlier this month, four years after the original Ice Bucket Challenge swept social media and national headlines. This August, and every August until we find a cure, reminds us that great things happen when we come together. With all of the extra events throughout the region it was even more exceptional.
Each event has a huge impact on the community and helps people with ALS and their families in several ways. Here are five reasons community partner events are a great way to get involved in the fight against ALS.