The move down stairs is complete.

This is my bed in its new location in the kitchen. Note the fan which I use to breathe at night and the expensive machine I am supposed to be using but don't is on the floor on the right and is blue with a screen.

This is my new work desk otherwise known as my former kitchen table. But since I don't eat anything. by mouth it wasn't being used.

And on the island counter is everything that is keeping me alive or extending my life. Pedialyte on the left behind the recycled newspaper bags. The Jevity liquid protein is in the green containers in the center. And on the right is the various medicines I take to extend my life. Three are trial meds I am taking off label. Here is a short summary of what off label means. In my case two are from studies I was rejected from but I was told how I could take it by purchasing the raw chemicals and combining them myself. One is from my doctor. And there are only two medications that are FDA approved for ALS. Radakava and Riluzole. The Radakava is in the brown box and is a two liquid bags I infuse for ten days and then take off for 18 days. The Riluzole is taken twice a day in 50mg pills. And both of those have probably given my six extra months, maybe more.

WHAT DOES “OFF-LABEL” MEAN?

We often hear about drugs being prescribed “off-label.” Many patients have questions about what this means. Is it safe? Is it legal? How can we know that off-label use will help us get better? Off-label use is the practice of prescribing pharmaceuticals for an unapproved indication, age group, dose or form of administration. We will explain more about this shortly. But first, let’s look at how drugs are approved for use in our country. In the U.S., the Food and Drug Administration Center for Drug Evaluation and Research review’s a company’s New Drug Application for data from clinical trials to see if the results support the drug for a specific use or indication. If the drug is found to be safe and effective, it can be marketed for the specific condition for which it was approved by the FDA. Until recently, however, it was against FDA regulations for pharmaceutical companies or their representatives to market a drug for any conditions for which the FDA hadn’t approved. A recent federal appeals court decision now allows physicians and other healthcare providers to prescribe the medication for uses other than the specific FDA-approved indication. That difference is important because it begs the question: Is there science behind off-label use? That is, why would a provider prescribe a medication for a different use? Often, there is anecdotal evidence that a medication turns out to be useful for a different condition. Over time, physicians, and providers, through their own experiences, and those of their colleagues, may feel an off label use would be beneficial to their patients in certain circumstances.