Elaine Welch is used to being on the go all the time. The 69-year-old says a successful day for her is one where she can look back and see how much she has accomplished. But now that she can only do one-third of what she used to, keeping up with daily life is proving harder.
Last November, she was diagnosed with ALS (Amyotrophic Lateral Sclerosis), also known as Lou Gehrig鈥檚 disease. It is a fatal neurodegenative illness that progressively paralyzes one鈥檚 body, eventually making it impossible to breathe or swallow.
Currently, there are about 3,000 people of all ages struggling with ALS in Canada. With no known cure or treatment, about 80 per cent of ALS patients die within two to five years of diagnosis. But this has not deterred Welch.
鈥淲ith this there is no cure, and in a sense it is a comforting thing to not have to whip around everywhere looking for one,鈥� she said.
She first saw signs that something was not quite right while on a cruise to Panama last spring. She started having trouble walking, and had to take things slowly. This was very unusual, as she has been active her entire life.
鈥淚 had a hard time walking. I remember I had to walk slow, I couldn鈥檛 keep up,鈥� she said.
Then the falls began to happen.
鈥淚t was like a dizziness, my legs would feel very tight and I would have to do stretches to loosen them up,鈥� she said. 鈥淭hat was the feeling, like I was falling backwards, and when I would turn my head I would have to hold on to something.鈥�
After 15 falls had occurred, she knew something was definitely wrong. Her doctor at first did not want to believe that ALS could be a possibility, but after seeing a specialist the diagnosis was inevitable.
鈥淚 knew there was something wrong so it was a relief to find out what it was. No one wants to die before they plan to, but you just have to accept that鈥檚 the way it is,鈥� she said.
The progression of ALS is different for each patient. For Elaine, it has affected her legs first and eventually will enter her lungs. Just recently she began walking with a walker and her husband, John Welch, is now in the process of getting ramps built in their house for the future when a wheelchair will be needed.
But for now, it is just a matter of taking things one day at a time.
She plans to do many small vacations while she still can, and go down to the family property in Birch Bay, Washington as often as possible.
鈥淚 could feel really sorry and miserable for myself and isolate myself from everyone, but what鈥檚 the point? Sometimes I鈥檒l have my private moments where I will have a real good cry. But it鈥檚 good for my husband too to keep a positive attitude,鈥� she said.
Elaine and John have also been attending an ALS support group in Surrey every third Wednesday of the month. Because only about one in 50,000 Canadians are diagnosed with ALS, it is difficult to find other families going through the same process. The Welch鈥檚 were surprised to find that one lady in the group lived only a few blocks away from them. She has had the disease about one year longer than Elaine and it has been comforting for them to see how things have been dealt with in progressive stages.
鈥淚t鈥檚 hard to get a lot of interest in research when there鈥檚 not that many people with it, and there鈥檚 so many other problems,鈥� said John.
鈥淚 have learned to be more empathetic to people who have illnesses. We take our health and life for granted until all of a sudden something comes by and smacks you in the head and wakes you up.鈥�
With an unknown future ahead of her, Elaine still remains extremely positive.
鈥淚 have to look at it and say is my cup half full or is it half empty? Well it鈥檚 still full because I can still walk and I can still drive,鈥� she said. 鈥淚鈥檓 doing as well as I can.鈥�
But perhaps one of the most positive outcomes for the Welch family is all of the support they have received from their friends and the community.
鈥淲e have really good support, her friends are always phoning and stopping by,鈥� said John.
Elaine has received phone calls from friends in all corners of the world.
Calls have come from Tanzania and Puerto Vallarta, the Dominican Republic and Ontario. The Welchs have also been given great support from their church congregation.
鈥淚鈥檝e got friends here that will look after me no problem. My friends are very encouraging,鈥� said Elaine. 鈥淭he only problem is they keep bringing cookies and donuts and now I鈥檓 gaining weight,鈥� she joked.
John is extremely proud of her for continuing to be spunky and strong, especially when they both know that a darker future is ahead.
鈥淪he is usually a feisty person so its hard for her to be immobile,鈥� he said. 鈥淪he gets down once in a while because she can鈥檛 do much. But she鈥檚 very upbeat, amazingly.鈥�
To support research and services to help families such as the Welch鈥檚, people are being asked to join together with hundreds of other ALS supporters this Saturday, June 11 for the 2011 Walk for ALS. Held at the Special Events Area in Bear Creek Park in Surrey, registration begins at 10 a.m. with the walk starting at 11 a.m.
鈥淚t鈥檚 interesting, people are so kind. People when they see you need help are just wonderful here,鈥� said Elaine.
To find out how you can participate in the 2011 Walk for ALS, contact Manpreet Dhillon at 604-374-3274 or surreywalk@alsbc.ca. More information and locations for other 2011 Walk for ALS events are available at www.walkforals.ca.
