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Today's Takeaway with Florine Mark


Sep 12, 2022

With Kevin Sherry, ALS of Michigan Board Member and Caregiver

 

There are few things in life that are more painful than watching a loved one

struggle with a serious illness. I personally experienced this myself when my amazing husband, Bill, was diagnosed with ALS, a terminal illness more commonly known as “Lou Gehrig’s Disease.” ALS is a progressive neuromuscular disease that destroys nerve cells in the brain and spinal cord. Over time, the patient loses their ability to move, speak, eat, and breathe. Currently, there is no test to confirm or rule out ALS and it’s often diagnosed only after excluding other diseases that may cause these symptoms.

 

Today, we talked with Kevin Sherry. Kevin sits on the board of ALS of Michigan and he first became involved with the organization after his wife, Allison, was diagnosed with ALS when she was only 50 years old. Although the average life expectancy of an ALS patient can be as little as two to five years from the time of diagnosis, thankfully, Allison’s symptoms continue to progress slowly and she considers herself one of the “lucky ones.”

 

We talked with Kevin about caring for a loved one afflicted with ALS and the amazing devices that can help patients improve their quality of life.

 

What You’ll Hear on This Episode:

  • What were Allison's initial symptoms?
  • Why did a diagnosis take so long?
  • After finally getting a diagnosis, what were some of the steps Kevin took to find help and support?
  • What is Allison’s condition now?
  • Do all patients experience the same type of symptoms?
  • What are some of the biggest challenges of living with or caring for someone with ALS?
  • Is there any type of physical therapy or exercise that helps patients with ALS?
  • How does ALS of Michigan help support patients and family members?
  • Is there financial assistance available through ALS of Michigan?
  • How can friends and family members help patients and their primary caregivers?
  • What are the upcoming Walk N’ Roll Events and how does the money raised benefit ALS patients?
  • What are some of the speech assistive devices and speech pathology that helps ALS patients communicate?



Today’s Takeaway: 

It’s natural when we hear a loved one has a serious illness, that our initial reaction is fear and uncertainty. We may feel anxious, frightened and frustrated upon learning of a life altering diagnosis. But it’s also a reminder that life is short and to spend time with your loved ones doing the things you love most. When we received my husband Bill’s diagnosis, he refused to sit around and feel sorry for himself. Instead, we made it a point to get out of the house, socialize with friends and family and to live our lives as best as we could! When his mobility became an issue, we were fortunate enough to get a van with a lift for his wheelchair so we could go out on field trips. Although our life was very different from what we were used to before he got ALS, we still tried every day to find joy and happiness in our lives. Remember that every single day is a gift and even when you’re living with a serious illness, it’s important to cherish life. Will our days look like what we envisioned for ourselves before the diagnosis? No, of course not. But we can still find beauty, love, and joy in each and every day. Look for the silver linings. Surround yourself with love and laughter. And don’t forget to tell your loved ones how much they mean to you each and every day. I always end every note, every

letter, and every phone call with “Love, love, love!” I’m Florine Mark and that’s “Today’s Takeaway.”



Quotes:

  • “It’s very difficult to come up with a diagnosis.” - Kevin
  • “Early on Allison made the conscious decision to not let the diagnosis define her.” - Kevin
  • “No two cases are the same.” - Kevin
  • “Our mission is dedicated to helping pALS (People with ALS), their families, their caregivers, live life as fully as possible.” - Kevin



Brought to You By:

Gardner White Furniture

 

Mentioned in This Episode: 

ALS of Michigan

Walk ‘n Roll for ALS

University of Michigan ALS Clinic