Highlights from ALS Connect in 2018

This past year on ALS Connect, our goal has been to feature a wide variety of stories and information to highlight the different facets of ALS, including caregiver tips, living with ALS and updates on research and advocacy.

Featuring people on the front lines battling ALS resonates with others who may not know the personal impact of ALS or have experienced something similar. And because ALS affects more than just the individual with the diagnosis, those perspectives are important as well. Here were some of those posts from over the last year:

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Adapting What You Do: Continuing Activities After an ALS Diagnosis

For people with ALS, a lot of lifestyle changes have to be made as the disease progresses, including changes in how free time is spent. Those who are active or have a favorite hobby often find symptom progression challenging and disheartening. However, there are ways to keep doing what you enjoy doing despite ALS. Here are some ways you can stay involved with both indoor and outdoor activities.

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The Impact of Being a Rare Disease Caregiver

Being a caregiver to someone with ALS can be rewarding, but it also takes a toll both physically and mentally. As National Family Caregiver Month comes to a close and we enter the holiday season, the year-round efforts of caregivers for people with rare diseases, including ALS, continue on. Families with ALS should know they are not alone in their struggles and sacrifices—so many people across the country are forced to readjust their lives in response to this disease. Here are some statistics that show the impact it can have on caregivers.

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Giving Thanks This November

At the St. Louis Regional Chapter, we are incredibly thankful to everyone who joins the effort to find a cure and provide services for people with ALS in eastern Missouri and central and southern Illinois. This year during the holiday season, we’re sharing what makes people thankful in our community who are dedicated to fighting ALS. Here are some of the things they’re thankful for this year.

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Perspectives: A Thankful Thanksgiving

By Gregg Ratliff

I love Thanksgiving! It was always my father’s favorite holiday. He passed away on November 24, 1997. I found it to be somewhat ironic that while he loved Thanksgiving, he had a stroke on Thanksgiving Day and he was buried four years later on Wednesday, the day before Thanksgiving. It just seems like more than a coincidence.

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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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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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Volunteer Voices: Ted and Eloise

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.

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