May 29th marked three years since I was diagnosed with ALS, not that I understood the doctor at the time…
And you know what that means: NEW tattoo!
The biggest change over the past year has been a growth in my confidence: that I’ll be on the planet for awhile (barring any unforeseen plane crashes), and that I have more control over the disease than I realized.
[^Pause. Deep breath. Knock on every piece of wood in sight. Say a prayer. Be so very grateful to be able to write the above paragraph.]
Unlike most people with ALS, my symptoms are still mostly upper motor neuron, characterized by stiffness, weakness, and slowness. So it takes longer for the message “move that muscle” to get from my brain to my spinal cord. But from there, the lower motor neurons are still able to carry the message to the requested muscle, which can still flex to walk, talk, eat, or type…slowly. And if they’re moving, they’re not atrophying (much).
That explains how I’ve even been able to reclaim muscles I thought were gone for good. For example, I’ve completely changed how I walk. Instead of dragging my toes and hyperextending my knee backwards, I’m now able to flex my foot upward and control my stride to look more natural. It’s not perfect – it’s annoyingly slow and takes massive concentration – but it’s working.
For this miracle, I give credit to my M&Ms: Mischa, Mom, and my husband.
Mischa is my Pilates-based physical therapist at InsideOut Body Therapies. I will dedicate a longer post to Pilates, but suffice to say for now that the 5 months I’ve been working with Mischa have been revolutionary. Along with the walking, my core strength has improved, resulting in fewer falls. The stretching loosens my too-tight muscles, allowing me a greater range of motion and engaging more muscles. And my diaphragm is stronger, which means I can speak more clearly and for longer.
Basically, she taught me that I can still strengthen and retain muscle if I sneak up on them. Not powering through by overusing the stronger muscles as I am inclined to do, but through careful, slow, consistent work on the weaker and smaller ones.
Which is where my mom comes in. Twice a week, I swim 2×250 or 3×250 and then we spend an hour working in the pool with ankle weights, hand weights, a noodle, and aquatic barbells and dumbbells. I walk sideways, backwards, high knees, and forwards, which is my favorite because I imagine one day walking on land. By myself.
My mom is my accountability partner. I wouldn’t go as often or work as diligently if she wasn’t there. It’s helped our relationship too. I’m so thankful that the move to Raleigh (just 14 months ago!) enabled this to happen. Yet one more miracle I never saw coming.
My husband, DP (as he’s known on this blog)…well, it’s hard to put into words. He’s not just my rock, not my foundation…he’s more like the mortar. Whether it’s putting on my shoes and pulling the car around so I get to Pilates or swimming on time, picking up Starbucks so I can keep writing, picking me up when I fall, or coming to one more race I put on the calendar at the last minute, he’s the one making it happen.
Also, he seals ME together. The reason I’m so gosh-darn stubborn about giving in to ALS is as much for him as much as for me – so we can prolong living in this little bubble of time where ALS is an annoyance, but not a dictator. Where we can still look towards the future with anticipation (e.g. our new house), not dread.
So that’s why the Year 3 bird is different. He’s not gliding, he’s ready to use his tiny core muscles flap his wings again.
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