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Living Sparked Lives with ALS

  • Dec 10, 2014
  • Meaghan Puglisi
  • 5-min Read

A Lifesprk ALS Client Shares His Story…

When Amyotrophic Lateral Sclerosis (ALS) took away his ability to do things for himself, Bruce Kramer needed to hire a company that could help him live the way he wanted. Bruce, like so many people with ALS, found that his spark, his zest for life, was difficult to ignite when things seem impossible. As Joel Theisen, RN, CEO/Founder of Lifesprk points out in Lifesprk’s ALS gala video featuring Bruce, “ALS can be so challenging for those who have to face it every day. Yet these are the people who inspire us to be a better company.” Theisen notes that their spark is still there, it just needs the opportunity to flare.
For the past ten years, Lifesprk has worked closely with the ALS Association of Minnesota/North Dakota Chapter to provide caregiving through the Jack Norton Respite Care program to clients and families living with ALS. People like Bruce and his wife, Evelyn “Ev.” When they first started with Lifesprk, they received the basic 18-hour per month caregiving. This helped Bruce with caregiving services but also gave Ev respite. As Bruce’s primary caregiver, Ev realized that it is equally important for her to have an outlet to keep her own mind and body strong. As Bruce’s needs became more

involved, and because Ev needed to continue working full-time, they enlisted the support of a home care agency in addition to the respite care he was receiving from Lifesprk. However, the home care agency didn’t think they could handle the acuity of his care or meet Bruce’s goals.

What were those goals? Yoga, a trip to Chicago and creating an educational video so caregivers could learn how to use his unique equipment before they came to his home are just a few.

That’s when Bruce hired Lifesprk for Life Care Management services to provide ongoing, proactive guidance and coordination of services. His Lifesprk Life Care Manager, Angela Nelson, a nurse, considers Bruce one of the most detailed, remarkable people she’s ever met. “He’s in control of every detail of his life, right down to the 10-page care plan we’ve created together, the biggest and most detailed plan in Lifesprk history,” laughs Angela. She added, “The plan is something he is very proud of, and we go over it every two weeks to make adjustments as needed – including when to use the right skin lotion based on the change of seasons. It’s often the little things that make a big difference in our client’s lives.”

The more important point, Angela stressed, is that Lifesprk has enabled Bruce to be the one in the driver’s seat, maintaining his power to control his life. “He has ALS but that doesn’t mean he can’t live,” said Angela. “Those with ALS require lots of hands-on care, and you have to work hard. Many home care agencies aren’t up for the task. But at the center of all that care is Bruce, a human who deserves a team to go beyond what’s required. That’s the Lifesprk difference — nothing is too challenging when it comes to sparking lives.”

And so Bruce’s goals were met with Lifesprk’s help. Angela arranged for a live-in caregiver to join Bruce and Ev on their trip to Chicago so nothing would interfere with their weekend. She also coordinated bringing a camera crew to Bruce’s home, allowing him to videotape step-by-step instructions on how to use his special equipment. And Lifesprk Caregivers brought him to a yoga studio specializing in ALS clients so they could properly stretch and position his body for optimal wellness.

Angela added in her own surprises along the way. When a local photographer reached out to Lifesprk to see if they had any ALS clients who’d like photos taken for free in lieu of doing the ice bucket challenge, Angela jumped at the opportunity and coordinated details with Bruce, Ev and four generations of Kramers. “He smiles every time he sees those pictures on his laptop,” said Angela. “ALS has taken away so much from people without their permission. It’s a humbling feeling to be able to give them back a piece of control — to live life on their terms — because it means so much. I hope every person living with ALS realizes the potential they have to live a sparked life.”

In his own words, Bruce considers Lifesprk “his great company” for changing the experience for him when others couldn’t. His inner spark shines bright, despite his diagnosis of ALS. He hopes others will see that too.

Share with us your story — how has ALS changed your goals, or a loved one’s? What would you do to make those goals a reality if you had a team to spark your life?

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