Thanks for Stopping By—Our 200th Post on ALS Connect

We admit, it snuck up on us. We have been posting here at ALS Connect since 2016, and it didn’t really occur to us to check in on how many posts that was. But as it turns out, this is the 200th post since we started back then. So it seemed appropriate to take a quick look back before we start into the next 200.

Continue reading Thanks for Stopping By—Our 200th Post on ALS Connect

Dispatches From a Former Caregiver—Our Journey Ends

November is National Family Caregivers Month, and today’s blog post is the fourth in a recurring series from our friend Scott Liniger, who was an ALS patient caregiver for his partner Tammy Hardy for six years. In his series “Dispatches From a Former Caregiver” Scott hopes to explore the parts of his and Tammy’s story that tend to the, shall we say, more irreverent side of their journey.

Today Scott brings his and Tammy’s story back from Europe to the United States. Back in the U.S. they face challenges with medical devices, accessible seating, and unfamiliar bathroom tile. Lastly, they reach the end of their journey with ALS.

Continue reading Dispatches From a Former Caregiver—Our Journey Ends

Compassion Will See Us Through—Jane’s Angel Fund Provides Financial Relief to ALS Families in Need

When Scott Lato was diagnosed with ALS on March 29 of last year, it wasn’t long before he and his family realized that certain aspects of their home had become very limiting to him—and provided additional challenges for his caregivers—as his ALS symptoms continued to progress. However, with three boys at home aged 9, 11, and 18, he and his wife Bernadette, both in their 40s, didn’t have the financial ability to suddenly transform their house.

For many families living with ALS, this situation is all too familiar. ALS does not only devastate an individual physically, it can quickly overwhelm a family financially. But would the Latos really have to choose between financial stability for their family and Scott’s ability to access basic needs in his own home?

Thanks to Jane’s Angel Fund, they did not.

Continue reading Compassion Will See Us Through—Jane’s Angel Fund Provides Financial Relief to ALS Families in Need

Walk a Crooked Path: The Big Bad Wolf and the Three Bears

By Saundra Stewart

Not so long ago in a land not so far away lived a brave, strong man and his white-haired wife.  They loved their little blue cottage on the hill.  They loved playing with their grandchildren, going for long bicycle rides, and camping – especially camping!

One day, life was going along much as normal, when there came a knock on the door.  When the brave, strong man went to answer, there on the porch stood a big, ugly, horrible wolf.  On the front of his sweatshirt were the letters “ALS.”  The man didn’t know what that meant, but he knew the creature was one of the ugliest things he had ever seen!  Right behind the wolf were three bears.  Big bears.  Scary bears.

Continue reading Walk a Crooked Path: The Big Bad Wolf and the Three Bears

Walk a Crooked Path: The Irony of Life

Today’s blog post is the first installment of a recurring monthly series from our good friend Saundra Stewart. When her husband, Don, was diagnosed with ALS, Saundra became his full-time caregiver for over 10 years. In her series, “Walk a Crooked Path”, Saundra shares her insights on ALS as a caregiver.

By Saundra Stewart

Ever heard of Lou Gehrig? I can remember my dad, an avid baseball fan, talking about Mr. Gehrig when I was just a kid. Because Dad liked him, I made it my business to like him, too. I read books, I watched movies, I educated myself — especially about the odd illness that Lou Gehrig came down with: Amyotrophic Lateral Sclerosis — ALS. What a long name, and what a devastating disease.

Continue reading Walk a Crooked Path: The Irony of Life

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.

Continue reading Caregiver Advice from Caregivers for People with ALS