Living with ALS: How St. Charles family rallies to care for dad
It's been an extremely rugged three years for the Ferreira family members of St. Charles, but it was important for me to reach out to them in hopes of sharing their experiences of caring for a loved one diagnosed with amyotrophic lateral sclerosis, or ALS.
This progressive disease that affects nerve calls in the brain and spinal cord is also known as motor neurone disease or Lou Gehrig's disease, for the famous New York Yankee who first brought the illness into national focus.
Folks with the Les Turner ALS Foundation in the Chicago area informed me about 75-year-old Gil Ferreira last November, when it was honoring families caring for loved ones suffering with ALS.
Gil began experiencing muscle weakness in his back and chest in 2011 and after a battery of medical tests and a change in doctors, he finally got the bad news in March of 2015. He had ALS.
Through an exchange of emails, Gil said he would try to answer a few questions for me about what it was like to have his family and loved ones rally to support him.
He had every intention of getting back to me, until just after the Christmas holiday when he had a setback that landed him in Northwestern Medicine Delnor Hospital again.
His daughter Pilar said it was likely he would be in the hospital for some time, and too difficult to respond at this time.
The Turner Foundation shared the story of how Gil's wife Bea served as the primary caregiver until his health declined even more. The family now employs caregivers during the weekdays and the whole family pitches in during other hours.
“My daughter Pilar puts me to bed every night and gets me moving each morning,” Gil said in a note he shared with the foundation. “My son-in-law and grandchildren who are 12 and 14 years old are very helpful, too.
“They assist with transferring me from the bed, to the toilet or power wheelchair, or wherever I need to go,” he added.
Pilar and her family live with Gil and Bea. Two other daughters travel from Indiana and Tennessee each month to help and give others a rest.
“Because it is a rapidly progressive terminal disease, an ALS diagnosis significantly impacts everyone in the family,” said Andrea Pauls Backman, CEO of the Les Turner ALS Foundation. “As a result, each person needs support and guidance along the journey.”
That's where the foundation has come into play with an individualized approach that “ensures each person living with the disease receives the best quality of care, while our local community of support provides their loved ones with answers and encouragement,” Backman added.
With the Les Turner ALS Center at Northwestern Medicine and a wide range of support services and educational activities, the foundation seeks to provide “the most comprehensive care for people like Gil and for families like the Ferreiras,” she said.
The message for the rest of us, it seems, is that life's trivial challenges and setbacks mean nothing in the grand scheme of things. And we should all admire and pray for this St. Charles family and any others facing the ALS challenge.
Graham's finds a spot:
Fans of the Graham's 318 coffee and bakery shop in Geneva will have to watch for a new version of the store while it is undergoing some expansion work on Third Street.
The new spot will be a Graham's 318's “pop up” shop at 316 Franklin St. That spot has been empty since Rustic Charm vacated.
It is located in back of the main Graham's Chocolates shop, just north of Graham's 318.
The pop-up shop should be in operation soon, as owners were hoping to possibly have it open this week or next week.
Behind the howling:
One of the more distressing things a homeowner in the Fox Valley area can experience is losing a dog to a prowling coyote.
Why anyone would let pets outside at night on their own is anyone's guess. But it's a proven fact it is not a good idea.
My wife went to an educational session about coyotes in Geneva a few years ago, and a key thought sticks out in her mind to this day. She said the presenter told attendees “coyotes are everywhere.” They are hiding most often, because they don't particularly like humans. But when they are hungry, they will be on the prowl for any type of small animal from mice to squirrels to rabbits to, yes, your small pets.
Anyone interested in checking out Pingree Grove Forest Preserve in Hampshire can also attend a guided hike and educational session about coyote behavior and their role in the ecosystem from 10 to 11 a.m. Saturday, Jan. 19.
The forest preserve is taking advanced registration for this free event at (630) 444-3190 or at programs@kaneforest.com.
Pingree Grove Forest Preserve is at 14N187 Route 20.
That's some electricity:
It's not uncommon to cringe a bit during the holiday season when you notice what Christmas lights inside and outside add to your electric bill.
But it could be worse. Can you imagine what it costs some of these big box retailers to keep the stores lit up at night?
We especially wonder what the bill looks like for a place like Ashley HomeStore, which keeps its showroom lit up as a security measure.
A ‘downhome' meal:
After our New Year's Eve meal at Houlihan's in the Geneva Commons, my wife acknowledged that I truly picked something different this time.
And I was glad about that.
The “Downhome Pot Roast” with potatoes and vegetables, covered in fried onion rings, put an exclamation point on the end of my dining for the year 2018.
dheun@sbcglobal.net