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I was the the Patient Advocate for a Biogen webinar entitled "The importance of staying on therapy" Tuesday evening August 16th at 6PM Central.

 

 

I write and produce a series of videos on YouTube that chronicles my experience with multiple sclerosis and the MS drug, Tysabri.

 

 

 

 

 

Check out my video playlists on YouTube;

 

Since I've had MS, I have gotten two serious other medical problems; Shingles and Swine flu. I doubt either are directly related to multiple sclerosis (although there are some tenuous connections), because people who have gotten shingles or H1N1 flu don't necessarily have MS. I will likely live with the Shingles scars and face numbness all of my life.

 

I am a Patient Advocate for Biogen, the company that makes Tysabri. I participate in and/or speak at various MS events throughout the Midwest. I became a Patient Advocate in 2010, four years after starting Tysabri in November of 2006.

 

Like the disease itself, the drugs for MS will affect everyone differently. Yes, I started walking one day after my 3rd infusion of Tysabri, but that doesn't mean everyone will notice a change that quickly. Many have, but others have not.

 

The Albuquerque Journal; November 2000

 

While I started walking shortly after I began to take Tysabri in November of 2006, I used a wheelchair for four years prior to that time. I also received IV steroid treatments several times a year for MS relapses. April of 2006 was the last steroid treatment I received.

 

 

About 3 years after I started the Tysabri Recovery Series videos this story came out and it prompted a visit to my house by the FDA. The videos have NOTHING to do with Biogen, nor has it EVER paid me one cent for them. The reporter, inexplicably, never contacted me for my comments before it was published. I did email the reporter, with no response.

 

 

 

 

 

Why? Because if you couldn't move after about 10 minutes you likely had MS.

 

 08/25/2016

 

I am taking the drug "TYSABRI" for my MS and have been on it since November of 2006. I get an IV infusion once every 28 days.

 

 

 

 

 

 

 

 

 

 

 

My latest MRI report (May 2016)