Regaining independence after ALS diagnosis

A stairclimber and upstairs rail system from Sanford Health HealthCare Accessories helps woman stay in home.

Regaining independence after ALS diagnosis

Angie Peda recalls the months and moments leading up to a life-changing diagnosis.

“It was the summer of 2010, and I noticed when I would reach up to things high in the cupboards, my hand would just shake because it was so weak,” she said.

Peda, 71, continued to notice issues as she gardened and couldn’t lift the potted plants.

The final clue that something wasn’t right was when she couldn’t lift her nephew’s 2-year-old daughter at a family gathering. Someone noticed and asked what was going on.

“I remember saying, ‘I don’t know. My arms are so weak,’ and they said I should see a doctor,” Peda said.

Devastating diagnosis: ALS

She went to see a neurologist who wrote down seven illnesses they suspected. Blood tests, spinal taps, MRIs and EMGs narrowed the diagnosis to Amyotrophic Lateral Sclerosis – more commonly known as ALS or Lou Gehrig’s disease.

ALS is a motor neuron disease characterized by progressive degeneration of nerve cells in the spinal cord and brain. The diagnosis affects one’s physical abilities, but not their mental abilities.

Sanford Health Library: What is ALS?

“They couldn’t find a thing wrong with me, so it was by process of elimination that they diagnosed me with ALS,” Peda said.

“It started in my arms, and in a few years, I couldn’t use them anymore.”

Everyday tasks like eating or combing her hair became impossible for her to do on her own.

The weakness eventually spread to her legs. She and husband Ray considered an assisted-living facility but dreaded the thought of leaving their north Fargo home where they’d lived for more than four decades.

“It was so hard to have to give up things physically. To give up our home for 44 years — that would have been really hard,” she said.

Finding a solution

Instead, they turned to Sanford Health HealthCare Accessories to find a solution to help her around the house.

The Pedas purchased a stairclimber to get her from one floor to the next in their four-story home. Wheelchairs on two levels helped her navigate the main floor and the second-story bedroom. For some time, she was able to help support herself moving from the stairclimber to the wheelchair, but eventually lost the ability to use her legs for support.

They worried about her navigating the home as they aged, as he could no longer lift her by himself.

Their church, Immanuel Lutheran, hosted a benefit for Angie Peda. From the money raised at that event, they were able to install a ceiling lift rail system, also from Sanford HealthCare Accessories. The system allows her to move through the air to the stairclimber. From there, the upstairs rail system can transport her to the bedroom or bathroom.

“If it weren’t for the rail system and the stairclimber, I couldn’t be at home,” she said.

Regaining independence

As Angie Peda lost more mobility, the Sanford Health HealthCare Accessories team set her up with a new power wheelchair, which gave her back some independence.

“Very slight movements of her head and knees allow her to control all movements of her wheelchair, including not only moving the chair forward or backward, but also tilting or reclining it. She can also elevate the seat so she can be eye to eye with people when visiting,” said Nancy Froslie, Sanford Health HealthCare Accessories district store operations manager.

Angie Peda is now also learning how to use the wheelchair to operate her computer. She will be able to check email and Facebook on her own by using the chair’s special electronics.

Celebrating successes

The wheelchair has made life easier for Angie Peda, who still enjoys socializing with friends and family. Recently at a concert, the show ended to a standing ovation. Ray Peda looked over to see his wife had raised her power wheelchair to see the stage just like everyone else.

“It is those moments and stories that make our job so rewarding,” Froslie said. “Nobody’s need is too big or too small. We do what we do here because we care.”

Finding acceptance

While ALS could be an overwhelming diagnosis, Angie Peda has taken it in stride.

“One of the things that has helped me through this illness is I decided ALS — instead of standing for the illness — I’ve decided to think of it as ‘Always Living with my Savior,'” she said.

“That has helped me go forward and not concentrate on my losses. There’s really nothing I can do by myself. I need to be fed, dressed, put into bed, taken out of bed, taken to the bathroom.”

Both of her children are now back living at home to help with their mother’s needs.

“My kids have had to change their lifestyles to help me out, and it’s a gift to me. I realize that they’re making a sacrifice,” she said.

A new normal

While her earlier years were filled with travel and her career as a social worker and later a rehabilitation case manager, Angie Peda now fills her days differently.

She enjoys watching medical or home-cooking shows or spending time by their backyard pool in the summer. She has a weekly Bible study at her home, and friends and family bring over meals to share. The Pedas also host North Dakota State University Bison watch parties during the fall and winter, and pool parties in the summer.

One day at a time

“I never did understand ‘one day at a time’ as much as I do now. I like to get through today the best I can, and then tomorrow do the same thing over again. You only have to do it one day at a time,” Angie Peda said.

“I don’t like to feel sorry for myself. I think I’m doing quite well.”

“I’m very blessed.”

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Posted In Brain & Spine, Health Information

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