James and Madeleine Low have learned to adapt to new realities

James and Madeleine have been married for 55 years. Their shared life together has included three children, six grandchildren, and a beloved cottage that has been in the family for over five decades.

ALS has forced the family to make some adjustments. For example, since James was diagnosed with ALS in 2013, he has lost the ability to move. The couple now lives in a condominium that offers more adaptability for James’ equipment and mobility needs; for example, open spaces and wide corners to accommodate his wheelchair. They have shifted their perspective in life from planning in advance to taking it one day at a time.

This shift in perspective is particularly important during the holiday season. The loss of speech and mobility can make it difficult to enjoy quality time with loved ones at larger dinners, family gatherings and special events.

“It’s much harder to be a full participant in family holidays,” says James. While he and his family have tried their best to maintain a sense of normalcy over the holidays, James admits that he finds it tiring to deviate from his daily routine.

“For the past two years, James has experienced increased anxiety around the holidays,” says Madeleine. “Our children’s homes are not accessible.” Even though hosting every holiday has presented its challenges, Madeleine says she wouldn’t have it any other way. “We have made adjustments and will continue to do so.”

You can make a difference

Living with a terminal illness like ALS is not an easy feat, but the generosity of our donors can support services that minimize the challenges.

“The equipment we have received from ALS Canada has been indispensable,” says James. “We couldn’t see ourselves living without it.”

Madeleine’s wish is for James to live at home throughout his journey with the disease. She emphasizes that she could not have taken care of her husband for as long as she has without the equipment. “The Hoyer lift is what has enabled me to look after him in our home,” she says. “He cannot move. The Equipment Loan Program has been a blessing.”

In total, James has received a walker, a transport chair, a hospital bed, a mattress, a lift chair, a temporary electric wheelchair, a commode, and a Hoyer lift from the ALS Canada Equipment Loan Program.

His biggest piece of advice to anyone facing an ALS diagnosis is to register with ALS Canada and visit an ALS Clinic. “The support is absolutely essential,” he says. “There are no organizations better equipped to explain the diagnosis and its consequences.” Both he and Madeleine agree that the support groups led by their ALS Canada Regional Manager have been invaluable, particularly at the beginning of their journey with the disease.

“It’s so important to meet other people living with the disease and hear how they cope.”

This holiday season, give a gift that matters. With your support, we can continue to help families like the Lows today, while funding research for the families of tomorrow.

Within Ontario, ALS Canada has a role similar to that of the provincial ALS societies providing services and support to help meet the needs of people living with ALS.

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