August 2013 – an update

August 2013

            Hello.  I’m coming up on the two-year anniversary from diagnosis and first I’d like to yell, ”I’M STILL HERE!” Although, some days I have to admit, I’m surprised. When I was first diagnosed at the Mayo Clinic in October 2011, I joined a drug clinical trial that held some hope of stopping progression of MSA (turned out, it did not work.  I hate when that happens).  One of the qualifications to be in the trial was that you had to have a life expectancy of at least three years. so, statistically, I’ve got more time.

            When you’re healthy, the primary commodity you’re constantly dealing with is money. When you’re terminally ill, the primary commodity you’re constantly dealing with is time.  Comparatively, money is unlimited and generally one always has the opportunity to find ways to make more money. I can’t generate more time and having MSA makes me more mindful of how I spend my time.   I truly cherish my moments with Julia, Jeremy, Emily, David, James, and Jennifer.

               Time with friends is also precious and our home remains a busy place as I have visitors practically everyday. My brother Richard and his wife Sarah recently  visited from California.

               One question I’m often asked is, “How do you cope with this disease?”                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                  I’m not freaking out, although I can definitely understand that response.  Actually, I completely understand, how someone could feel angry, depressed, betrayed, frightened, alone, and every other negative emotion when faced with this disease. But that’s not how I feel.   I have sad or dark moments but they pass and I focus on today and memories of the past.  My childhood, meeting Julia, our wedding and 6-week honeymoon in Europe, the births of our three children, the thousands of experiences we shared during their childhood, our b’nai mitzvahs, ours vacations, Julia’s art, Julia’s cooking, Emily’s cooking, Jeremy’s music, David’s social prowess, laughing, Emily’s wedding, Jeremy’s wedding, being with friends, my career, love, and life overall.  It’s a long list and it has truly been a joy and I am thankful.  This is my focus and gives me the power to cope and deal with this disease. I think clearly and still laugh (although some days I’m not sure what’s so funny). 

               If I were 90, this disease would be less tragic because I would be considered old and at the end of my life.  Although I’m only in my late 50s, I may be young in years; but I feel my particular body has somehow reached old aged quickly. The statement, you never know what tomorrow will bring, may sound a bit cliché, but this disease is a perfect example. The cause of MSA is unknown, strikes people in their mid-50s, and seems to be random.  It could happen to anyone.

                One thing I’ve been particularly struck by is the generosity of others.  I am honored to have my circle of friends.  They have come by to watch  a movie, bring lunch, give words of encouragement, laugh, and simply just hang with me.          

                 So what else to do with my time? A cure for MSA requires medical research which in turn requires money. I’ve decided to try and raise some more money for MSA research at the Mayo Clinic. The desperately needed medical research that seeks a cure typically is not funded by the pharmaceutical industry because there are too few people with MSA to provide enough profit incentive.  Instead, funding for research comes from the federal government funding of the National Institute of Health (NIH) or private donations.  Currently, the federal NIH grant program has been adversely affected by the government sequester with the NIH announcing 700 fewer research grants being issued as a result. Thus, private donations at this time are even more important.

                  My goal is to contribute to the effort in finding a cure for MSA and I need your help. To assist in this fund raising effort, my family started a fund raising and MSA awareness drive and thus far we have raised $35,000 from private individuals for research at the Mayo Clinic in Rochester, Minnesota.  I’ve decided to support The Mayo Clinic because it is a leading MSA research center under the direction of Dr. Phillip Low.

                  I don’t like asking people to donate.  It’s uncomfortable.  But, I want to keep leading neuroscientists focused on finding a solution to MSA. So if you’re looking for a cause to support, consider MSA research and go to www.markfreifeld.com to donate.

Thank you.