Family continues to battle against ALS

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She is unable to speak or even eat.

Once a healthy size 14, Lilian Rennalls has lost so much weight she is now a size four and weighs only 82 pounds.

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Family continues to battle against ALS Back to video

“It’s hard to see her deteriorate like that,” explained her daughter, Heather Rennalls.

Lilian Rennall’s diagnosis of Amyotrophic Lateral Sclerosis (ALS), or Lou Gehrig’s disease in 2007 has left the former registered nurse unable to use the muscles of her throat.

Lilian communicates by writing and uses a gastrojejunal (GJ) tube for feeding.

Her daughter inserts food into the tube using a syringe.

“It’s frustrating,” Rennalls said. “Everything I do for her is what she used to do for other people.”

Rennalls, who has taken a six-month leave of absence from work to care for her mother, is currently in the Barbados with her mother visiting family.

She said her mother first noticed something was wrong when she began slurring her words and noticed her instep was off.

She was referred to a neurologist in Feb. 2007, and diagnosed later that year.

Soon after, Lilian moved in with her daughter, who lives in Oxford County, to be closer to the ALS clinic in London.

While Lilian can still breath on her own, by the summer of 2007 she had completely lost her voice.

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The muscles used for swallowing, speaking and breathing are often the first to be affected.

People with ALS eventually lose all ability to control voluntary movement.

If her breathing fails, Lilian has requested that no assistance be given to her.

Rennalls said she and her mother want to raise awareness about the disease that is still relatively unknown.

ALS is a motor neuron disease, caused by degeneration of the motor neurons.

The condition is often called Lou Gehrig’s disease after the New York Yankee who died from at age 37. Physicist Stephen Hawking is probably the most well known living patient.

“They don’t know the cause of the disease – let alone a cure,” Rennalls said. “There is no known cure.”

Rennalls believes that her mother may have been susceptible to the disease due to injuries to her back and spine.

The disease has been linked to several factors including a virus, toxins, DNA defects and spinal injuries. In most cases there is no genetic component.

Members of military, firefighters football and soccer players have been noted to be at higher risk for the disease, as have dairy farmers and Persian Gulf War Veterans.

Life expectancy is between two to five years, with about 20 per cent living longer.

Hawking is the longest surviving person with ALS, having lived 40 years with the disease.

June has been designated ALS Awareness Month.

“ALS. Three letters that change people’s lives. FOREVER” is the slogan of the ALS Society.

This fall, Rennalls and her mother will join the Walk for ALS on Sept. 26 at Springbank Gardens.

Last year Lilian Rennalls was able to walk with a walker, this she will most likely be in wheelchair.

Rennalls and her team hope to raise $8,000 this year for ALS.

*This story was originally published on Friday, June 26, 2009.