In the past year as my disease was progressing too fast to manage physically and emotionally, like many in times of need, I turned to God to ask for his strength, courage and assistance to find a way to stabilize my disease and grant me the opportunity to continue to provide for my family as a productive member of society. There was no doubt that without a significant change in treatment, the "medication of the month" treatment plan I was on had me wheelchair bound too soon to fathom.
In the past few years I had lost my way from mass as a routine part of my life. There was no specific reason. I was living in Puerto Rico for 7 years and I didn't prioritize mass as I had while living in NY. As my health was deteriorating in 2011, I found more time for mass, to pray, meditate and ask for support through this trying period. I was aggressively searching for MS treatment options and in early Autumn I found HSCT for the treatment of MS through research on the Internet. I recall finding some YouTube videos of patients and physicians discussing the procedure and literally bawling in my bed as I watched and listened to people who were confined to a wheelchair due to progressive MS, until HSCT changed their lives.
In addition to finding more time for traditional prayer I was praying to my Grandma who passed in 1998. We were very close as she lived in our house since I was a child. She was a strong Irish woman all 4 feet 10 inches of her. She was born in Brooklyn, NY and was diagnosed with Polio at the age of 4. She was quarantined from the rest of her family for 3 months and the family physician didn't think she would survive the disease. Veronica Horan Attara not only survived, she married, had 2 daughters, a career with the old Abraham and Straus department stores, enjoyed a long and happy retirement and passed away at 88 years old. I have vivid memories of childhood racing home from the school bus to see if I could arrive to my Grandma's apartment in our house by 3:33 as displayed on one of those early digital clocks where the numbers flip up and down as time changes. It was just a game between us. Since she passed, every time I see 3:33 I say a short prayer to my Grandma.
My wife and I were married on April 10, 2010 in San Juan, Puerto Rico. The mass was scheduled at 3:00 in the afternoon. It was a wonderful church mass and a beautiful reception with friends and family followed. Most of my family knew of my close connection with my Grandma and 3:33 so many were wondering how or if Vera would make her presence felt. Later in the evening I found on my Blackberry 3 draft messages created at exactly 3:33 PM. To do this manually you have to hit the control button on the Blackberry 12 times in a row to create 3 drafts. I tried it several times and it's really not easy to do, especially when you're not touching it. The Blackberry was in the chest pocket of my tuxedo jacket and you can see on the video of the mass that at 3:33 I was motionless (scared s%$#) waiting for my beautiful bride to walk down the aisle. It didn't surprise me as I feel her continued presence in my life.
In November of 2011 my pursuit of HSCT was fast and furious. I was in conversations with University of Heidelberg in Germany, Northwestern University Hospital in Chicago and a facility in Manital India. All of these facilities require voluminous documentation of disease progression through chronological MRI films and reports. My first choice for many reasons was Chicago but I had been rejected from the MIST Clinical Trial because I did not meet criteria. Dr. Burt insists on clinical evidence that the MS is still in the inflammatory stage for reasons previously noted. I had sent him several MRIs which did not demonstrate any active or enhancing lesions in the previous 2 years. This does not mean my disease wasn't inflammatory, it only indicates that during the time of my annual MRI evaluations, many lesions appeared but none were enhancing.
My Neurologist in NY ordered another study in November. It's not normal to repeat studies so closely but I was having additional symptoms so I didn't argue. After I came out of the machine I felt a strange sensation but didn't think anything of it. Our lives at that time were so hectic I wasn't great at deciphering my feelings. I had recently moved my wife and son from Puerto Rico and the house we purchased in NY fell through so we were living in a hotel with our possessions in 3 different storage facilities, we had no house and smiles were short.
A week later I received the results from the MRI Center and for the first time in several years my MRI included a Gadolinium enhancing lesion in my brain! This is obviously bad news because it demonstrates my disease is progressing, but it was GREAT news because Dr. Burt would see my disease was still inflammatory and I would qualify for his treatment. It was an emotional moment for my wife and I and I explained to her how I felt a strange sensation coming out of the MRI machine a week before. I immediately thought of my Grandma and was so thankful for these blessings. I was a little suspicious so I looked into the envelope for the CD. Sure enough, this study was printed on CD number 333.
Thanks Grandma, I love you.
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