My story.
By Pam McFarlin, P’ALS (Person with ALS)     

(Photo caption: Jim and Pam McFarlin at the ALS Gala in Toronto last year)

My father was my hero and still is. I lost him in November 2001 to A.L.S.  I watched him struggle through life and I watched the pain, the joy of family, and his desire to fight… and ultimately lose his battle.

A.L.S. is a horrible disease. It takes away so much but leaves the brain intact … now I too battle A.L.S., as does my sister Tricia, and 2 brothers Peter and Paul. 

A.L.S. is 10% hereditary and in my family, once I did the research, I learned that my odds were more like 90% and not 10%.  My father has a sister and 2 brothers and he was the only one affected but when you look beyond him that is where you see the history. My grandmother had A.L.S. There were 11 siblings and out of that 11, 9 died of A.L.S. Wow! … And who said life was fair??

I am 30 and I have an 8-year-old daughter.  I was diagnosed in 1996, 8 years ago. The only thing I am thankful for is that because it is inherited and only the SOD1 gene is affected it seems to be moving very slowly. Some days it really bothers me… and others. I just want to help others and help make their lives better. I want people to know how horrible A.L.S. is and what is does to the body; how it takes away all of your pride, dignity, and sometimes sanity. I say sanity not only for the person living with A.L.S., but for the spouse, mother, father, sister, or brother who has taken on the job of being a caregiver which is a full time job in itself.

I know this as I watched my mother give up her life so my father could stay at home and die with the dignity and pride that he fought so hard in life to have.

I loved my father and would not change anything that I did in life. The year he left work because he just could not do it any more as the weakness was taking over slowly. You know, it was funny he never really questioned me about all of the “supply teachers’ spare periods” I had in my last year of high school. I loved going out for little drives, going for lunch, any thing that meant we would spend the day together. I think he knew that I gave up my last year of high school just so we could be together as much as possible. I know if I had to do it over again I would in a heart beat. I miss him a lot.

I live with the thought every day that I may have given my daughter, who is 8, this horrible disease and I am not ready to deal with that yet. I can now see the pain my father went through knowing that he passed this on to not only one, but all four of his children. I know it must have broken his heart into a million pieces.

This last while I have become involved with the A.L.S. Society of Ontario and love the work I do with them as a volunteer. It has given me back so much and I feel whole again. After I left work I started to feel not wanted or needed. Well, lately I feel great about what I do. I run a Walk To D’Feet A.L.S. in Barrie, I run Support Group meetings, I am the Barrie A.L.S. Chapter President and sit on the Board of Directors for the A.L.S. Society of Ontario and am also the Chairperson for the Provincial Advisory Council. All of that keeps me busy but I still miss driving buses. But if I had kept on working as a bus driver, perhaps I would not be here now.

What do I want from life right now? Well, let me tell you I want to bring awareness to this cause that is dear to me that not only affects me but the other 11 people in my immediate family. Every day at least one person is diagnosed with A.L.S. and they are basically handed a death sentence because the life span can be so short. But with drug trials and people’s will and hope to live longer we are now seeing that life span grow by at least 1-3 years.

Together we can make a difference in someone’s life. We don’t always see it, but if talking with one person or helping with a donation is going to make someone’s life a little easier then we will have made a difference. I want people to know that even though there are approximately 2000 people in Canada living with A.L.S., that number seldom changes on a daily basis because as one person is diagnosed each day, there will also be at least one person who has lost their battle with A.L.S. 

Together we can make a difference. 

Together we can change someone’s life and make it a better.

Can you help me make that difference?