In 1991, at age 41, I was diagnosed with Multiple Sclerosis. Initially, I was numb from the chest down, but I persisted in working and taught high school as I healed that year. Our youngest child, turned 7 right after I was diagnosed, and I prayed that I stay mobile until he was grown. God answered that prayer, and I regained my health and maintained it for 19 years, taking and teaching dance, working out 3-4 times a week, traveling with my husband, and becoming a grandmother of four. So, you ask, "Why are you now pursuing a new treatment?" My answer would be, "I want to stay mobile and able to play and travel with our grandchildren." Selfish, yes, BUT appreciative as I am for the 19 years of health I was granted after diagnosis, I want to exhaust all possibilities to regain the health and abilities I've lost in the past four years. Yes, that's right; I had total health until I turned 60 in 2010, and began suffering increasing disability from M.S. symptoms. I am aware that I have been greatly blessed with the health I had and also with the abilities which I still possess. I won't go into a narrative of which skills I've lost. Suffice it to say, it is with hesitancy that I get out of my car and approach any house, store, etc., out of fear that I'll fall, which I've done several times.
I've researched the process of HSCT (hematopoetic stem cell treatment) and know it is the only treatment offered to someone with Secondary Progressive Multiple Sclerosis (which I've been told by two neurologists that I have). I was declined from participation in the U.S. trial because of their criteria for treatment. After reading many positive evaluations of Dr. Denis Fedorenko in Moscow, Russia, I’ve contacted Dr. F. (as I call him) and been accepted for treatment by him in an attempt to halt the progression of this disease. Dr. Fedorenko has told me I have a 60-70% chance of this being successful, and I’m willing to take those odds since there is nothing else with any promise.
This treatment alone will close about $40,000, and there is also the cost of the airline tickets and expense of John staying in a motel and eating for the duration of my treatment. Many of my dear friends have asked how they can help financially, and I’ve set up a donation site. I am in awe of the generosity of friends praying for me and offering support, both emotional and financial. Please don’t think that your not donating will stop me from pursuing this treatment, but we will sincerely appreciate any donations people choose to make. I want to thank my friends and family for the loving support that you’ve given to me.
We plan to spend five weeks in Moscow, Russia, and I understand that my health will be compromised for 12-18 months following this treatment. With the type of M.S. I have and the duration which I have had it, I understand that I will be blessed if the progression of multiple sclerosis is halted, but there is little likelihood that I will regain my lost abilities. However, like my gratefulness for the length of time I was in remission after diagnosis, I will be grateful to live my life without fear of what the future holds for me. At this point in time, I cannot plan for travel because I’m unable to walk more than 50 feet or so with complete comfort and assurance that I will get to where I aim to ambulate.
I plan to keep this blog updated and you will probably tire of hearing my thoughts expressed here. You have options, after all, and can choose not to read this!!
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