PLEASE NOTE, MY HSCT WAS SUCCESSFULLY COMPLETED IN MAY OF 2013. HOWEVER, I HAVE KEPT THIS PORTION OF THE BLOG INTACT FOR THE TIME BEING IN AN EFFORT TO HELP OTHER PROSPECTIVE PATIENTS LEARN HOW TO APPROACH THEIR JOURNEY THROUGH A BLOG. 05/23/2018
Welcome, everyone! Thanks so much for tuning in for what’s sure to be a bumpy ride. You can put your trays in their upright position and fasten your seatbelts, while I let you know a little bit about who I am, where I’ve been, and where I’m going…
Who I Am
My name is Brooke Slick and I am a 48-year-old wife and mother of one daughter, who is 19. I live in picturesque, rural Pennsylvania very close to the small town where I grew up. For the past seven years, I have worked as a Study Coordinator at an imaging facility, 611MRI (www.611mri.com), in Altoona, PA. Six years ago, I was diagnosed with MS.
Where I’ve Been
I have led an incredibly fortunate life. I have absolutely no complaints or regrets about any of the paths that I have chosen to take or those that have been chosen for me by powers beyond my control. All of those paths have led me to this crazy adventure, this blog, and the opportunity to share it, and hopefully help others who may be suffering the same fate as I have.
Although I grew up in a small town, I left for New York City the week after I graduated from high school. My mother was working in NYC at the time, and it was a perfect opportunity for me to attend school there and jump into the legal field as I had hoped, with a specialty in programming computers, teaching, and doing administrative work at one of New York’s largest law firms, Skadden, Arps, et al.. It was a very big deal for this country girl. I worked my tush off, lived large, and cherished every moment of it. During my almost ten years there, I had the opportunity to travel (a passion of mine) to Australia, Ireland, Grand Cayman, Tahiti, St. Lucia, Hawaii, as well as all over the U.S. I’m fiercely independent, so, when my friends were either still in school or were unable to come with me, I would just hop on a plane and go by myself. No worries, mate. Next stop, five years in southern Florida and the birth of my daughter. I continued to work in the legal field there, until I finally decided that Pennsylvania was the best place to raise a child and I returned to PA. Fast forward to December, 1999. I marry the man of my dreams, we build a new home, my daughter starts kindergarten, I get a great job and make new friends. Perfect…simply perfect . Not so fast!! Did you hear the brakes screeching??!!
In 2001, I began to lose the vision in one of my eyes. Based on my bloodwork, they thought that I may have had a stroke in my eye, but, the findings were inconclusive. This was my first of three bouts of optic neuritis over the next six years (often the first sign of MS). This was followed by approximately four years of neurologic clarity. No new signs or symptoms at all. MS is sneaky like that! In 2005, my upper lip seemed to be dysfunctioning. I could not form certain words, whistle or suck on a straw. I had MRIs that showed evidence of lesions in my brain, but still no long history of them, so, no diagnosis. By the end of 2005, I had an episode wherein the entire left side of my body went numb, from the top of my head and down to my foot. Oral steroids alleviated those symptoms, temporarily. However, relapses and a bajillion MRIs followed and by the summer of 2006, I was officially diagnosed with MS. Since that time, I have been on two injectable drugs (Betaseron & Copaxone), one oral drug (Gilenya), and, one infusible drug (Tysabri), in addition to steroids (Solumedrol & Prednisone) that served as a band-aid between treatments. Before Tysabri, my brain and spine where a hotbed of MS activity. Since I have been on Tysabri, my MRIs display stability of my brain and spinal lesions (nothing new and little that’s active), however, all of my old symptoms continue to worsen. “Like, what symptoms, Brooke??” Well, let me tell you:
– Right foot drop (feels like you’re dragging a concrete block around)
– Loss of dexterity, strength and feeling in the right and left hand and right arm
– Profound hearing loss-right ear
– Numbness in all fingers, feet and toes as well as my mid-section
– Severe, sporadic muscle spasms in my rib cage (aka spasticity…feels like a vice grip)
– Imbalance (I look and feel like I’ve had one too many…it’s just MS)
Add all of those symptoms together with 8 falls in public and many more in my home, coupled with a trekking pole and a foot brace, and you get one hot mess of a formerly agile, hyperactive, go-getter. I’m not half as much fun as the old Brooke!
Finally, in July of this year (2012), it was recommended by my neurologist that I take some time off to concentrate on physical therapy and see how things go with Tysabri. What he didn’t know was that I was carefully planning and plotting my escape from this prison that I call MS. I was out of therapeutic drug options, but I was not out of hope or determination.
Where I’m Going
During my hiatus, I had the rare, life-changing opportunity to begin to follow the blog of an MS patient by the name of Amy Peterson (http://amygoesninja.wordpress.com/), from Austin, TX, who was about to begin a stem cell transplant (HSCT-see the tab at the top of the page) in Moscow, Russia, to halt her MS. She coins herself the Ninja. Given that alone, how could I not want to party with her?! Seriously, “Amy Goes Ninja on MS!”? I loved it. Sucked me right in. But, it was actually her ability to succinctly describe every good, bad, and ugly step of her stem cell transplant that gave me the courage and firsthand knowledge to make the informed decision to proceed with mine. Before you know it, we’re e-mailing each other while she’s still in the hospital, I’m corresponding with her doctor in Moscow, I’m sending my MRI images to Russia via Fedex (God love the postal worker who had them hold the truck for me as it was pulling away so I could get my package on the truck), and, BOOM! I’m in with an admission date of April 28, 2103!! Whiplash, anyone?!!
I invite you to follow my blog over the next year. Tell all of your friends about it. Tell people you know who have or are affected by people who have MS. Tell your hairdresser. Tell your dentist. Tell your shrink. Tell everyone!!! Getting the word out about this treatment is currently being driven mainly by a “grassroots” effort of patients who have had the treatment, and NOT by the medical community or drug companies, who have so much to lose by halting MS and its symptoms. This treatment may be available to the public in the U.S. in 10 years. I don’t have that kind of time, nor do so many others like me. As one very wise Ninja once told me, “MS waits for no birthday!” So, folks, I’m going to have to put my big mouth to work in order to help others. Please join me in spreading the word!!!