"Can you increase it to 1.0?" I asked my PT this morning. It was only my second time at that speed, and though 1.0 mph may seem slow, I started at .4 mph. And then, time to focus, one foot in front of the other. Each step on the treadmill has to be perfect or my legs will go flailing and the whole process needs to restart. 15 minutes of this.
14:07, 14:08, ugh, leg hiccup! (Insert profanity here!) Dang. With one minute left, I couldn't save the misstep. Only 1 minute. Restart. "Do you want to go 1 more minute?" asked my PT. I nodded. My legs were not happy. But I have come so far and they could go 1 more minute. At 16 minutes, I was done.
4 years ago today I went on steroids for an acute MS exaccerbation. I was really tired, and the tiny bit of walking I could do had been replaced by falling. These attacks came at least twice a year. They were, to put it mildly, no fun. The times were scary. I felt I was losing everything. Walking 50 feet was so hard. It was exhausting.
I have come so far.
I started taking Ampyra. Ampyra is not supposed to alter the course of MS. But as soon as I started taking Ampyra, my MS halted completely. 2 days after I started taking it, I knew something was different. I could stand longer. A few months later, I started physical therapy (PT). Ampyra and PT have taken me to where I am today. I moved from using "AFO" braces to investing in Bioness. AFOs allow muscles to atrify. Bioness builds muscle. I wish more people realized this, especially physicians.
I have come so far. Legs with big AFO braces would swing out and around for the 50 feet I could walk. Gradually with the Bioness my legs can go straight, one in front of the other.
It's not easy... It takes concentration. It takes time. But life isn't easy, and MS isn't easy. Learning to stand again isn't easy. Over 300 muscles are required to stand. And from standing, there is walking. I have come so far.
I can write again... I had been only able to write by using a fat pen. Every muscle has been helped by Ampyra.
Imagine the cord that connects a computer to an outlet. Say the cord gets chewed a bit by, say, a cat. The wire may be exposed. That's what has happened to a part of my spinal cord except it's not a cat that has done the chewing. We don't know what has been nchewing that cord for almost 25 years, from when I woke up in high school to strange feelings in my legs... and no one knew then.
There is an exposed wire. Without covering, that exposed wired doesn't connect signals reliably. This is MS. Ampyra works by connecting signals of the wire, while leaving the broken cord alone. But it works.
And I have come so far.
Where do we go from here? I don't know. I still don't know if I will be able to stand up tomorrow morning. But I am incredibly thankful for the last 4 miraculous years, of being able to stand each morning. I'm thankful that I never gave up on walking, because now walking is getting better. I am thankful to my family and friends who have always supported me.
This blog is about MS and faith. How does faith fit into this? I have not gone on other therapies for MS since I gave birth to our daughter who is now 11. I have relied on instinct to tell me what is right, and when. And I have relied on God to take me through all of this, which seems like a small part to the whole thing, but it's huge. God has been with me through everything.
I woke up this morning and stood. Then I walked somewhere between 15 and 16 minutes on a treadmill. Life is good.
Peace.
