Fighting ALS, Fueled by Faith

This morning I am with the family in Newport Beach, California. My daughter goes back for her final year of college in Ohio soon and we really wanted to get to the beach before she went back. It’s been a challenging summer for us all and she has been incredible, as have all of my family and our community during this period of adjustment. I also wanted to see my California kids, my daughter in particular in whose mind my illness is always close at hand. Time to make memories.

But there is something about looking over the ocean that causes me to feel small, in a good way. I mean how can you not? Looking over this vast, beautiful, mysterious and dangerous place has always put me back into proper perspective – the world is a lot bigger than my everyday reality. I thank God for giving me things that expand my world when my mind wants to shrink it in order to gain control.

It is my first full week of retirement. I have adjusted faster than I thought. I guess when you are going from appointment to appointment and fast tracking “new” you don’t really have time to process, and that may be just fine. I loved my work but it was never my identity, which I thank God for helping me learn and apply.

I met with Social Security and applied for Social Security disability and Medicare. That’s weird to say but it’s true. For people with ALS, it is one of two diseases where you are immediately qualified for any benefits you may get, in my case it will be the Medicare piece only. I am grateful for God providing a fantastic pathway via close friends to penetrate what can be enormous bureaucracy.

We are blessed to live in Las Vegas in that we have found ourselves with easy access to Synergy Healing Center. Synergy provides solutions that are not available in traditional medicine. It focuses on quality of life enhancement and also hope for longevity improvement for its patients. I have chosen to go down this path and have been impressed. There are people from all over the country, and world I am told who travel to their center to receive care. They are lovely people that are looking for and experiencing benefits from their treatments. This week I went two days and had eight treatments. I am excited and have a two visit per week regime planned for the near future. More to come as I go down this path!

There are two medications approved for ALS, Riluzole and Radicava. I have been prescribed both. We have decided to take the Riluzole and are evaluating the Radicava. Radicava is a very expensive medication and we want to be sure it is the right choice for us before making the financial investment. Please pray for clarity in this area. Any perspectives are welcomed.

As I mentioned I am in California. Time to go make some memories, share some love with anyone I come across and enjoy the victory that I already have as a follower of King Jesus!