Plymouth family finds tremendous support after devastating diagnosis of ALS | Plymouth / Medicine Lake



Living in a close-knit neighborhood in Plymouth, the couple often took friends for pontoon rides on Medicine Lake. Here they are (center) in 2020 with neighbors and friends Jeff and Diane Johnson, and Marlo and Gordie Roberts.

“In time of sickness and health, until death do us part,” are the vows of Doug and Mary Miller on August 1, 1981. These powerful words of enduring love and everlasting commitment have come too far. early for this couple from Plymouth who just turned 40. wedding anniversary.

With plans to spend their retirement golfing, traveling and watching their grandchildren grow up, those plans came to an end after Doug was diagnosed with ALS in March 2020 at the age of 64.

ALS, or amyotrophic lateral sclerosis, is a progressive neurodegenerative disease that affects nerve cells in the brain and spinal cord.

Hearing the diagnosis, Doug was “devastated,” Mary said.

“Honestly, it was the worst week of our lives because ALS is a death sentence,” she said.

Each year, approximately 5,000 people in the United States are diagnosed with ALS, according to the ALS Association. It is estimated that up to 30,000 Americans can have the disease at any given time.

The life expectancy of an ALS patient is on average 2 to 5 years from the time of diagnosis, while 20% live more than five years.



Doug Miller of Plymouth was diagnosed with ALS in March 2020. He is pictured with his wife Mary, five months after the diagnosis.

The person who lived the longest with ALS was astrophysicist Stephen Hawking, who lived with the disease for 55 years before dying at the age of 76 in 2018.

The rate of progression also varies, as do the symptoms, however, progressive muscle weakness and paralysis are imminent.

How quickly the disease progressed is what really caught him off guard, Mary said.

“He feels cheated about his retirement,” she said.

In September 2018, after spending 36 years at Hewlett Packard, Miller was forced into early retirement.

Embracing his newfound freedom, he bought an electric bike, went golfing with his pals, looked forward to a trip to Italy and spending time with his grandchildren.

Unfortunately, these plans were not meant to last.

A year later, in November 2019, Doug fell from the roof and severely broke his arm, requiring surgery.

Mary explained how their tight-knit neighborhood came together to help while Doug recovered.

In December, he started having problems with his legs, saying they felt “sore” and “awkward”.

He went to the chiropractor to relieve the symptoms, even though they persisted.

An avid bowler and golfer for much of his life, Doug had fallen three times one night while bowling.

“He just knew something was wrong,” said Mary.

Then, in March 2020, he underwent electromyography to test his nerve and muscle function.

After various other tests to rule out other possibilities, his neurologist told Doug he suspected ALS.

In the first few months after diagnosis, Doug was seen as a slow to mild progression, and was still able to handle most things around the house and even enjoyed a round of golf or two, recalls Mary.

Five months after the diagnosis, however, Doug’s symptoms had progressed to the point where he could no longer walk or stand on his own.

By mid-November, he could no longer use the walker or feed himself.

“It’s at this speed that it really progressed,” she said.

Now, over a year after the diagnosis, Doug’s breathing has deteriorated and he spends most of his days on a portable ventilator.

While his mind remains completely intact, he has lost the use of his arms and hands, cannot speak clearly, and has difficulty swallowing.

“It’s devastating to watch an active human being deteriorate over time,” said Mary.

Sad and scared to die, Doug “refuses to talk about it,” Mary said. “He really wants to avoid discussing it.”

While this diagnosis was “catastrophic” for both of them, Mary chooses to regard the time spent together as a gift.

“Very few of us have the opportunity to move on to a better life with God,” she said. “It made me appreciate life,” knowing it’s temporary.

The couple are also grateful for the support they received from their neighborhood near Medicine Lake.

“We’re very, very close,” Mary said of the neighborhood.

Over the years, they’ve formed friendships with their neighbors, sharing progressive dinners, game nights, and pontoon rides.

Hearing about Doug’s “horrific diagnosis, everyone was shocked,” she said.

From meal trains to lawn work, neighbors have come together to show their support and reach out.

Two such neighbors are Marlo Roberts and her husband Gordie. They feel “honored to know the Millers, who approached their experience with openness, sharing and a lot of good humor,” said Marlo.

“Although ALS is a dark disease, it has been incredibly heartwarming to see the outpouring of love and kindness that Doug and Mary have inspired in all of us,” she said. “Our gratitude is endless.

As Doug’s full-time babysitter, Mary also has a full-time job, where she is grateful that she can work from home. With the help of the neighborhood, she is able to focus on him, she says.

“As horrible as this disease is and how progressive it is, people have been so generous,” she said.

They also came together to help raise funds for Doug’s medical care, hosting a morning fundraiser with coffee and donuts that raised $ 800 in two hours.

Then, when they learned that Doug was the beneficiary of this year’s Schimmy Scramble Golf Tournament, an annual golf tournament that raises funds for the ALS Association and a special family, they organized another fundraiser. fund, raising $ 3,000 for the upcoming event.

The Schimmy Scramble is an annual event that started eight years ago by John Wartman, after his lifelong friend Dave Schimschock from Chaska was diagnosed with ALS.

The aim of the event is to raise awareness and fundraise in the hope of finding a cure or a way to treat it.

“It’s just a nasty disease,” Wartman said, after seeing his friend live with it for two years before dying in 2014 at the age of 49.

Held at the Dahlgreen Golf Club in Chaska, the event has grown steadily every year. What started with 60 golfers, this year’s event, scheduled for Saturday, August 28, has over 200 registered golfers.

“The Miller’s friends and family are just amazing,” he said, calling them a “great support group,” which he has witnessed through their participation and generosity.

There are still openings for the morning shotgun, which starts at 8 a.m.

Copyright © 2021 at the newspapers of the sun. Digital distribution of this content without prior written consent is a violation of federal law and may be subject to legal action.

Source link


Leave A Reply