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!!!
I may remeber that fb post about a very important trip to the PO =)
I have a very big mouth & have already started spreading the word…& of course I am with you all the way!
Your blog is wonderful!
Makes me smile and think…. it’s just the same that happened to me. The vision trouble, the numbness, drop foot, all the falls… I want to get out of this prison called MS.
I cross my fingers for us 🙂
And thank you for useful information about the staying.
Regards from Lene 🙂
Lene, so nice to hear from you. You will be in Russia before you know it! So excited for you and for all of us. It’s time to start dreaming again. 🙂
Please keep me in the loop. My son is 42 and he has no movement but swallowing. I think he is beyond any help and frankly, I don’t think he wants any because so much of him is not working any longer. Good luck to you and thanks for sharing your story.
Karen, please follow along, and if you have any questions along the way, please feel free to ask. I wish the best for your son. He’s too young to give up. Tell him I said that!
Hi Brooke, like you I am in my late 40’s and sassy. I just had my HSCT +61 days ago in Chicago. I don’t have MS but its evil stepsister CIDP. It was an adventure in the US so I can’t imagine across how many miles??? You will do great and beat this awful disease. You and I will have a long and crazy healthy life!!
A long and healthy crazy life!! I love the thought of that and that’s exactly what I intend to do. I figure 5-6 weeks of discomfort/inconvenience is just a blip on the radar for such a fruitful payoff. Thanks for stopping by, Mary.
Where in usa did you get it done!
Ivy, I believe Mary had hers done at Northwestern in Chicago. Mine was in Russia, of course.
Hi Brooke, I read your storoy in the Altoon Mirror. I wish you all the best and will follow your blog to see how you are doing. I am 61 too old I am told to just get MS. But crazy things are happening and not sure of the reason. I am also diabetic, insulin dependent. At Thanksgiving I got Shingles on the left side of my head. It was in the corner of my eye and up over my forehead. Two weeks later, I developed pink eye in my left eye. On Christmas morning I could not figure out what was wrong wih me and discoved that I lost 1/2 of the vision in my left eye. It is back 80% but each week by Saturdays it seems worse. I am just kinda waiting to see what happens next.
Bobbi, it sounds like you have a lot going on. That’s never good for MS. Have you been officially diagnosed with MS?
No. The eye doctor at laurel eye wants me to go to Pittsburgh to an optic neurologist. I am trying to wait to see what happens next. If I get worse, I will have an MRI here. I have been trying to “stay calm” because that seems to help.
I found your article so interesting. You are so brave to be doing what you are doing. I realize too that the things that MS has done to you are devestating. I can live with the dimished eye sight but I don’t feel as independent as I once did. I am not comfortable driving because I am no sure exactly what I am seeing.
It is almost like there is a time lapse between what I see and what I know what I am seeing.
I will be following you, and praying for you.
Hi brooke!!..just stopping by to say hello and to tell you you will be in my thoughts n prayers.. a cousin of mine went to a fundraiser this evening for you and i hope it gave you more hope n more courage for your fight!!…you have a great community behind you!..best of wishes and god bless! (Prayers from roaring spring) -treva and bryan dick
Treva: I apologize. For some reason, I am just seeing your post. Thank you so much for your support. It means a lot. I hope you follow along while I’m in Russia. Take care.
Thank you for sharing your story and all the best to you in Moscow!
Just watched you on channel 10. Will be praying for you and watching for updates. Good luck and God bless.
Sent from my iPhone
I don’t know you, but I am from the Altoona area and all my relatives live in that beautiful part of PA. I want to wish you the best of luck in this venture. I’ll be following your blog. I KNOW you are going to get well — just BELIEVE.
Brie and I just want to let you know that the girls from ENT are thinking of you and keeping you in our prayers. We didn’t know until we saw the pic on FB. I am so happy for you and I’ll be following your blog. Positive thoughts and prayers to you 🙂
Hi Brooke, how are you doing at this moment?
My name is Madeleine Zimmerman and have MS for 30 years. In 2009 I became a widow and when I heard I had MS we’ve decidet no children I’m 53 years young now and in an wheelchair. Since I need a lot of nurses every day, this week I found a new nutse and she is from Russia. She told me about this treatment and that for me it is probably to late.
But, what the hell?, it’s never to late to try anything new.
So I wandered around the interenet and found your blog.
She also said this is only done in Russia and israel.
I wonder what’s the cheapest and maybe they do it in Europe or in Canada.
I live in the Netherlands in a rented bungalow which is nice with my little dog.
I’m not alowed to drive anymore because my eyes are bad but fortunately I have a car where they can drive me in a wheelchair. On the 10th of this month I even went to see Barbra Streisand.
Ofcourse not everyone will be okay to get what you have gotten, maybe they don’t treat people who are as bad as I am.
But I would surely like to try!
Hope to hear from you.
By the way, I’m also on FB Madeleine Zimmerman-Spierings
My partner has a very severe strain of relapsing-remitting MS and has had to learn to walk again twice in the last few years, while this has been very difficult, the positive is that she has recovered quite well from the attacks.
She is 23 and all the research I’ve done indicates that the best time to take on this treatment is early on. In all my research I haven’t been able to find any details on who to contact and what steps need to be taken to apply for this treatment.
We will speak with her neurologist within the next few weeks to discuss, but was hoping someone could reply with any details that would help with arranging to go ahead with the treatment.
Thanks for taking the time to read my message.
Chris, please start by going to the following Facebook group and joining. There are many facilities throughout the world. You need to do as much research as possible to find out which facility is the right one for your partner. You will find a plethora of useful info on in this FB group. If you have any additional questions, feel free to ask.
Hi Brooke ive been reading your experience and its very inspiring. I have a friend whose very dear to me, hes just 32 with PPMS. Would you mind if we exchange emails? I have questions to ask on his behalf.
I greatly appreciate it.
Hi Brooke! I just got thru watching your video and I cried all the way thru it. I’m so very blessed by you. I Hope you continue to do well. I’m looking forward to being able to follow in your footsteps!!
Linda, of course I recommend reading this blog from beginning to end to see how I was able to make it to Russia, what happened while I was there, and what has happened since. In addition, I highly recommend you join the following two Facebook groups. They are FB groups for HSCT. One is the general information site which includes info on ALL of the facilities around the world and the second one is the HSCT site for Russia (English language [I’m an Admin]). Everything you need to know is within its files section. If you have any further questions after that, please feel free to ask. Here are the links:
https://www.facebook.com/groups/404629779644453/ – General HSCT Group
https://www.facebook.com/groups/149103351840242/ – HSCT Russia Group (English)
Have a wonderful rest of the weekend!!
It was a pleasure and honor to meet you Monday evening at the MS reception in Altoona.
Around Mile 60 on Day 1 of the 2014 Keystone MS Ride (July 19), I began to falter..I am 66 and I had a mini-stroke in June a month before the ride, so I don’t have the stamina I once had. As I was struggling to continue cycling, I thought about my five friends whose lives have been impacted by MS. I thought about their daily struggles, and, with tears in my eyes, I told myself to pedal on because my temporary fatigue was nothing compared to what they have to deal with.
I plan to again cycle in the 2015 Keystone MS Ride on July 18-19. I’ll be 67 then, and I know there will be tough times on the road. I will again think about my friends with MS, but I will also think about you. Your courage and determination will be inspiration to me. So your fight will continue in people like me and the other cyclists whose hope is that this disease will be soundly beaten one day.
God bless you, Brooke. I feel truly honored to have met you and your mom.
Lee, I am humbled by your words, yet lifted up by them. As someone who is no longer able to work due to permanent damage caused by MS, sharing my story is my way of contributing to the world and lives of other with MS. Sometimes I don’t feel like it’s enough, but every once in while I feel like I’m making a difference. This is one of those moments. Thank you so much for your hard work with the MS Bike Ride. YOU are making a difference. It was a pleasure to meet you and your wife as well.
I think you are making a BIG difference. You are an inspiration to us all. keep up the good fight!
Your new friend,
Hi brooke, You are truly an inspiration and you give me such hope, I love reading your blogs and your positive attitude,
thanks a million.
Thanks, Maryellen! I hope you are doing well. All my best to you.
I hope you do not mind me reaching out! I have not has HSCT yet but I am compiling a page for my site of quotes of people that have it and how they would say it has changed their life? I wondered if you would be kind enough to give me one along with a pic? Would you mind also if I use your before and after walking video? Anything you would be willing to share would be most gratefully received! I just need the type of MS you were treated for a quote and a pic if possible?
I am in the UK!
Absolutely, Tina! Use whatever you like. Here’s my quote: “I wake up everyday grateful that I am in control of my life instead of MS. HSCT is the best thing that has happened to me since my diagnosis. No regrets.” Tina, if you give me your email address I will send you a picture.
Thanks so much Brook! My e mail is email@example.com
That is perfect!