Mina White finds what she can do is limited since she has had ALS but she has learned to paint with her left hand. The first ALS (Amyotrophic Lateral Sclerosis) walk in Vernon takes place Saturday.

Mina White finds what she can do is limited since she has had ALS but she has learned to paint with her left hand. The first ALS (Amyotrophic Lateral Sclerosis) walk in Vernon takes place Saturday.

Coping with ALS; hoping for a cure

Lou Gehrig's

She is, she says, coping.

Still, Mina White never imagined she would have ALS in her retirement years. The longtime Vernon resident and grandmother and great-grandmother was diagnosed in December 2009.

“I was always healthy and active with the family, aerobics, walking and gardening. The first symptom was pain in my right leg. They thought it had to do with my back and there was some relief from pain after surgery. Then the pain and tiredness and weakness came back. The neurologist told me I had ALS,” said White, 75.

“We didn’t know anything about it. There was nothing like this in my family. I thought it might mean that I would have to walk with a walker. The doctor didn’t explain it. Then we remembered hearing about Lou Gehrig, the baseball player who had this quite awhile ago.”

The doctor told her she had a tough year ahead and when she asked him about next year, he shrugged. The family — she and her husband have five children, seven grandchildren and three great-grandchildren — did more research and didn’t like what they found out, that ALS is a rapidly progressive neuromuscular disease in which the voluntary muscles degenerate while the senses are unimpaired. There is no known cause or cure and only limited drug treatment.

White was referred to the G.F. Strong Rehabilitation Centre in Vancouver for assessment and evaluation of the kind of care that would keep her independent and comfortable for as long as possible.

“My right hand lost function, then the right arm and it crossed to my left arm and has deteriorated. I need pretty much everything done for me now. I can’t even scratch my head,” she said.

She moved to Creekside Landing in the fall of 2010 because her husband also has health problems and could not care for her at home.

“My family has been great. They come to visit all the time and bring me dinner or take me out to things or I take the handyDART or taxi so I can get out. My granddaughter Nichoel Crawford formed an ALS Support Group in Vernon so I get out to the meetings when I can.

“I made up my mind, this is it, this is something I have to cope with. It is a shock, a total change of lifestyle. I’ve gone from being very active, to using a walker, to a push wheelchair, to this electronic chair.”

White also keeps active with exercises and music therapy and discovered a talent for art when she learned to paint with her left hand in a sling. Her phone, TV and radio can be controlled by the push of a button and she handles the fatigue by resting more. Respiratory therapy helps her lungs    and breathing, important since many people who have ALS get pneumonia, which can be fatal.

“The throat muscles that affect speech and eating can be affected but that hasn’t happened to me. I enjoy eating. You have to go day by day and enjoy the little things in life. I have a very strong faith in God and go to church. You laugh or you cry. I decided to laugh more than cry. But I miss the use of my hands so much.”

White said she has made arrangements for future care and for her funeral so that things are ready for the family.

“I’m doing the best I can. We all try to stay positive but I know it’s hard for the grandchildren. We enjoy the time we have together.”

Many people in the ASL Walk will be walking in memory of Ross Friesen, who had ALS and died earlier this year.

White will be taking part in the first ALS Walk in Vernon on Saturday. Registration is at 9 a.m with the walk starting at 10 a.m. This is a 5 K walk. Money raised will go to help the ALS Society of B.C. provide equipment for people with ALS in the Vernon area.

For more information about the walk and pledges call Nichoel Crawford at 250-503-4741 or see www.vernonwalk@alsbc.ca.

ALS: The Facts

ALS (Amyotrophic Lateral Sclerosis) is a fatal neurodegenerative disease where motor nerve cells die and the voluntary muscles degenerate. The senses and intellect remain unaffected. People with ALS become progressively paralyzed and 80 per cent will die within two to five years of diagnosis because they are unable to swallow or breathe.

There is no known cause or effective treatment. For every person diagnosed with ALS, a person with ALS dies. About 3,000 Canadians have ALS, which is usually diagnosed between ages 45 and 65, although it can affect people of any age. It affects both men and women of all ages and socio-economic groups. There is no known cause, effective treatment, or cure.

ALS has an incidence rate similar to that of MS but seems more rare because people with ALS die sooner after diagnosis. About 90-95 per cent of cases occur at random, with five to 10 per cent inherited.

The ALS Society of B.C. raises funds for research and to provide direct services for people with ALS. Until a cure is found, the society provides patient service to help improve the quality of life for people with ALS with an extensive equipment loan program, support groups and educational material. There is no cost to patients for ALS services. For more information, see www.alsbc.ca.