My ALS Adventure Continues

I never envisioned growing old this way. I always thought I would work and retire, do volunteer work, travel with my husband Bill, and spend quality time with our sons, William and Michael. I would clean my house, try new recipes, go out for lunch with friends, and be independent. Instead, ALS interfered with our lives. I say “our” because it truly affects everyone, especially loved ones, family, and friends.

I cannot complain, even though our lives changed. I always believed things happen for a reason. Our sons have had to learn to cook (especially Michael, although William has perfected lemon meringue pie!), do laundry, and perform everyday household chores. The brunt of my care has fallen on Bill. He showers me and washes my hair – under my direction, of course. We all laugh a lot and find humor in many things. We also shed tears albeit happy ones. For example, we spent a week with our very dear friends in Utah. Mary, Lundy, Bill, and the guys skied every day. On Saturday, I went skiing with them all!! It was amazing and uplifting and freeing! When we were finished, we were teary-eyed. The experience was that good for everyone.

Another awesome adventure I had was kayaking in the Pacific Ocean. We lived in San Luis Obispo for a year and were told about an adaptive kayaking program that the Kinesiology Department at Cal Poly runs. Talk about fun!! The students were super great.

Yes, we still travel around the US and Europe, even though it is different. For the most part, airline personnel are extremely accommodating and very friendly, as are TSA agents. People offer help everywhere and we have learned to accept it.

About 9 years ago, I began researching Iplex, a human growth hormone that looked like it might help me. My quest brought me into contact with Barb and Steve Byer. They were also looking for ways to gain access to the drug for their son, Ben, who also had ALS. We forged a wonderful friendship. After Ben died, they founded ALS Worldwide, an organization that provides free support to people living with ALS in nearly 100 countries and funds breakthrough research.

Right now, they are focused on bringing a promising ALS medication called MicroNeurotrophins to patients like me through a Phase 1 Clinical Trial. Our family has great respect for all the work ALS Worldwide provides and we are in contact with them frequently. Steve is my go to man for questions about upcoming research, therapies and anything new that’s on the horizon.

Over the past 12 years, I have met wonderful people everywhere we go, from Wyckoff to New York and Hawaii to Italy. They couldn’t be more considerate or thoughtful or kind. Sometimes, I cry when I think how blessed I am. We as a family have collected priceless memories in spite of ALS. Even though our lives have changed, I believe it was for a purpose. When friends say I am an inspiration, I always think huh? I am just being my normal stubborn determined self!