SS - The Experiment of My Life

The last seventeen years has felt like one big experiment on how to beat an illness. In the beginning you don't mind the needles, machines and doctors because you want answers. When you get that answer you read everything you can, scaring yourself into trying anything once.

My research was so detailed that I challenged my diagnosis of MS with four top doctors and four years of my life. Sadly I got my diagnosis changed but it was not better news. I was sent to UCSF and saw a doctor that started one of the first ALS clinics on the west coast. They have organizations for the patient support but this was different. These were researchers that focused mainly on the disease because time is not a luxury for most ALS patients. They seemed numb to death since most patients live for only 3-5 years and they had lost many patients during drug trials. They needed ambulatory patients for experimental drugs. I was still walking so before I knew it I was signed up for a blind 2yr clinical drug trial.

I drove 2 hours each way for questionnaires, blood work, respiratory tests and a full exam once a month for 2yrs. I was given a months supply of vials and needles for two injections a day. There was a placebo and two different dosages given but I was not allowed to know what I had. I knew I was getting the drug the minute the side effects started. The first month was the worst but after two years it became easier. In the end the drug was not approved by the FDA so they wanted to start a new trial. They wanted to inject the drug directly into my brain once a month but I'd need a hole drilled into my skull first. I kindly declined that trial with a wait and see attitude.

The next experiment I agreed to was a series of electric shocks on certain muscles. They took me down into a dark basement at UCSF into this tiny room. It looked like a Frankenstien movie set. I had tears rolling down the sides of my face for two hours before they were done. It hurt like hell and I did not return. I felt bad because this was not just for me but for all ALS patients. I did offer my body to them after I died but they said they would only want my brain and my family would have to pay extra for removal and shipping!

I eventually found a site called Patientslikeme and it has ALS patients that share with other patients on what has made their lives better. Some are doing stem cell procedures in other countries and others have found various drugs and supplements that have made life easier. We chart our progression and what we are on, while debating and asking questions in a forum. Most doctors don't know about most of this stuff unless they are working at an ALS clinic. Some of the patient support clinics are dropping the ball and are acting more like a hospice. Support should go hand in hand with hope. I got the hell out of that scenario!

My experimental life has taught me to listen to my body, listen to those who have been there and be open to a cure. I use water workouts, drugs only at night and get my 9 hours sleep. My friend Bonnie wants me to try a metal detox program which I'm going to try. ALS is a gene triggered by chemicals so it's worth a shot. ALS is not a death sentence with today's technology but living with this technology is a personal choice.

I still have not accepted my ALS diagnosis after 17 years because I'm still here, breathing on my own. I am still fighting for a cure and a truth. I'll never stop searching while I continue to stay one step ahead with eyes forward.