My New Neuro, New Assistive Device, New Continence and My Old MS ! (oh, they grow up so quickly!)
So, in February I started seeing a new neurologist. I’ve had MS 28 years and was in the care of an MS specialist since I returned to NJ from Miami in 1996. (How is that 20 years ago??) Anyway. I lean toward separation anxiety so making the change to NJ from NYC took longer than it should have. But I forged ahead with recommendations from my MS peeps on Facebook and made an appt to see Dr. Ilya Kister at the MS Center ala St. Barnabas in Livingston, NJ. It turns out that hitting the reset button and having a new perspective on my old MS has been invigorating! (and that’s not a word a person with MS utters often)
Oh Botox, I had no idea how much I’d love you!
I had no idea that Botox did more than smooth out one’s vanity. Turns out that the firming paralysis that puffs-up the lips or fleshes-out forehead wrinkles has all sorts of health benefits including calming an overly enthusiastic bladder.
As long as I’ve had MS (since I was 20) and have had both-ends-of-the-stick on the neurogenic bladder spectrum. Can’t hold it- can’t go. (So glad match.com didn’t exist in 1988… ain’t no way to casually work that in to a profile!)
Apparently an injection of Botox into the bladder (or 20-30 of them) calms the hyperactivity of said organ. For those of you who are crossing your legs as you read, it wasn’t that bad. For those of you who don’t care what I say about it not being bad, there is a buffet of anesthesia to choose from. 🙂
For the first time in 25 years I do not spend most of my day in the bathroom. And I don’t have to create a google map for all bathrooms in a 5 block radius of my global positioning. I can’t begin to tell you how liberating it is. When asked if I feel normal again, I can safely say no. What was normal for me is exactly what I don’t want to be.
My bladder looks 25 years younger and I’m a new woman. 🙂
My foot dropped down, and then got up again
I’ve been tripping on my foot for a crazy long time. I’ve blogged about it a ton (click). I tripped and I’ve fallen in full-frontal denial. There was always an invisible sidewalk obstacle that got in my way. A few years ago I rejoiced when I learned about a new assistive device that would take falling off my daily-to-do list. Finally, I would be able to leave my house and not be scared that every step would be my last vertical one. But that didn’t turn out to be the case. When I tripped and fell anyway, it felt downright stupid. All the efforts to incorporate these braces into my life were for naught. Sometimes my endless-optimism bites me in the butt.
I had heard about the Bioness L300 electrical-stimulation-thing that sends a signal, that activates a muscle, that picks up your foot. This, unlike the walk-on braces, made foot lifting certain. But somehow I got it in my head that since I have intermittent foot-drop on both of my feet, it would be overkill to have that type of device. Oh, and then there’s the fact that it’s outrageously expensive, insurance doesn’t cover it, and.. and..and. (insert ongoing list of why it wouldn’t work for me)
But when Dr. Kister mentioned it, I reconsidered. And with my husband’s constant clarity and ability to keep me grounded in potential, (grounded being the operative word!) I figured I go through all the steps to see if it would work for me and that if it does we will find a way to make it happen. And while we don’t know we’ll afford it, I do know that we will find a way to make it so. And thus the idea of leaving the house might not be so threatening in the not too distant future. (Circle back to optimism!)
So in summary:
Bioness L300 (✓)
(in theory at least!)
A new professional prospective (priceless!)
Finding solutions to help you overcome challenges that have compromised your life for more than 20 years must be exhilarating! You are the “can-do!” woman, and I know you will make this fantastic electronic device happen. You go girl!
Thanks Mom~ I appreciate you oh-so-supportive words. 🙂
So glad Botox is working for you. Looking forward to your information regarding your foot drop. Sad that it will not be covered by our insurance.
How wonderful! I’m happy to see positive things happening. You’re one of the diehards for sure. 🙂
Bravo! Your gait is impressive!