Life Post MS Diagnosis

After my diagnosis with MS, several things happened that I feel are quite noteworthy. First, my second wife and I divorced in 1999; she was unable to handle the MS and our relationship deteriorated beyond repair. My son was from my first marriage and lived out of state. My daughter ended up leaving the state with my ex wife in 1999, which put stress on our relationship. You try to stay close, but in the end it comes down to birthday cards and phone calls and the only way I felt closed the gap with my daughter was to make sure she received everything she wanted. That can be the biggest mistake a parent can make, as I would learn in 2008.

I was single for the better part of my life while a human research subject. So there was no one cheering me on or giving me advice outside of my doctors and nurses at UCLA. I would do three experimental drug studies from 1995 through 2003. All were double blind placebo controlled studies of non-FDA approved medications. I also spent six months as a human subject at UCLA in an experimental study of the use of a new form of gadolinium. This is a drug that is injected into your vein during an MRI.  If your doctor asks for an (MRI with Contrast), the drug makes areas of your brain glow where there may be damage. It is used on all parts of the body with MRI. This study was in conjunction with GE, the MRI machine manufacturer, and the drug company that makes gadolinium: more on that study later.

It is important to understand that human subjects research is very, very serious and no one should ever enter into any type of clinical trial without understanding the possible consequences. I was never monetarily compensated for any of the drug studies that I participated in. I will get into more particulars of the benefits and pitfalls of human subjects research more as my blog goes on. It is important to know that when you agree to become a human subject for clinical research you are putting your life in jeopardy for the sake of others. There is, oftentimes, no direct benefit to you or your illness, and many times drugs never get past Phase 1 or 2 and have to be stopped. You can also be physically and mentally injured by experimental drugs, so use caution.

Finally, to clarify for this blog post, I met my current wife on Eharmony in March of 2005. I told her everything about my MS and the probable outcome. At the time I was not progressive, but she had to understand that MS is incurable.  It is (contrary to some opinions) terminal and my then date needed to know this. My wife is a well educated woman who left the date and spent two days doing research before calling me. She said, “You are too interesting and stimulating to be with for me to turn my back on you because of this disease; everyone has something. I want to move forward.” And so we did. I asked her to marry me in May of 2005 and in December 2005 we became husband and wife. She has been my biggest proponent; she stepped up to take care of me and supported me when things started going wrong. And she is now my primary care giver in this nightmare of MS, but we traverse the labyrinth of MS together, and I am no longer alone. I love her with all of my heart.

More to come in a few days!

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