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All People Living With ALS Deserve A Standing Ovation

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Mauril Bélanger, MP, was recently named Honorary Speaker for a day in the House of Commons. He had put his name forward for the official position of House Speaker before his diagnosis of amyotrophic lateral sclerosis, also known as ALS or Lou Gehrig's disease. He withdrew after learning of his illness.

The House of Commons gave Bélanger a standing ovation for his courage, dignity and pride. Very appropriate indeed! It makes me proud to be Canadian, but I do think all people with ALS should be given a standing ovation in support of the challenges they face.

A dear aunt of mine, Erna Pearson, is also challenged with ALS. She candidly shares her feelings.

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My Aunt Erna (left) is a beautiful, gentle person, despite the challenges of ALS. Photo/Joan Kelley

"Hearing the diagnosis of ALS is devastating," says Erna. "It is an emotional roller-coaster with a lot of tears. The life you had nurtured and valued gets lost along the way. The diagnosis is a shock and initially you live in disbelief, fear and grief."

"Life as you knew it goes through many changes, along with all the challenges in losing your independence and freedom," she continues. "Losses can be overwhelming as the disease progresses and your body fails."

A range of emotions

On a daily basis emotions range from frustration, sadness, disappointment and fear. "Then," says Erna, "on an up-day, there can be contentment and gratification. It is only in reaching out to professionals and to your own inner self that new ways are found to make life more comfortable and peaceful".

Accepting ALS is not easy. It is advised to live a day at a time, making the most of it. "Keep a 'positive' attitude," advises Erna. "Strong and loving family and friends can help you immensely with this." Here is a saying that Erna likes; she says it makes her feel "kinda tough": I have to learn to live with ALS, but ALS also has to live with me.

Others play a role

The role of loved ones and caregivers is also key, says Erna. "They are irreplaceable; they pick up where you left off and offer understanding and encouragement which goes a long way to keep up your courage, spirit and pride."

"A team of medical and health professionals can assist and guide with equipment and devices to make living comfortable," she continues. "The ALS Societies across the country help with information and support; they are our friends. It is still frustrating and upsetting in managing even simple tasks. Traveling and socializing have their challenges but, with additional planning, can work. It is often easier for visitors to come to you."

My Aunt Erna is a shining example of being as strong and positive as possible despite ALS. She is a beautiful, gentle person!

"I have a true appreciation of the value of life and all that surrounds it," says Erna. "It makes me recognize how fortunate I have been over the years and the gratitude for all the wonderful family and friends that I have. In keeping an open mind, I have made a new friendship with another who shares the same experiences with ALS. It is a time to learn and appreciate other things in the world around you and to rethink life, relationships and spiritual awareness."'

Finding comfort

Comfort starts with the love, support, understanding and care from family and friends. "A small task successfully completed will give me satisfaction in that I can still manage," says Erna. "Reading, quiet time and visitors also give comfort."

A crucial thing is the support Erna has from loved ones. "By being strong for us, by giving love, support and understanding; by being there with us for comfort and compassion all the way through the ALS Journey. Loved ones can give us positivity, encouragement and good cheer."

It is sad to know there is no treatment for ALS or, in any measure, a way to slow it down. "It is painful to think of what my family will face going through this journey," says Erna. "Research work is ongoing and it is my sincere hope and dream a treatment for ALS be found!" We couldn't agree more, Aunt Erna!

June is ALS Awareness Month in Canada, a good time to help people with ALS with your love, prayers and support. Please check out organizations helping to find cures and who are supporting people currently living with ALS to see what you can do.

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