My ALS diagnosis story
It was December 2013 that I can remember my first experience of weakness. I had given birth a few weeks earlier to my second son, Oliver. I was lying down on the floor and tried to sit up. I couldn’t. I figured my belly was still tired from giving birth.
Sometime in the next year, I tried to do some handstands, which were my particular specialty, but I crumpled. I figured this must be what getting old is like.
By April 2015, I was again expecting. I took my four your old and one year old several hours away to stand in the cold to try to see then-president Obama. I was tired and cold and hungry and pregnant and as I tried to change Oliver’s diaper, my fingers would not obey me. After I ate and warmed up, things seemed to right themselves. I wrote off the numbness in my hands to pregnancy induced carpal tunnel.
Throughout the year I would have trouble suddenly losing grip on my pick as I played guitar for worship.
I put on bug spray with deet late in the summer, and my whole body started vibrating. I washed it off, but weird sensations remained.
Then, a few weeks before giving birth in October of 2015, I could no longer straighten my hands. I could not lift my arms all the way up to the sky. I could not hold our cast iron skillet with one hand. We knew I needed to see someone, but we were still adjusting to having a newborn in the house.
Sometime in the next year, I tried to do some handstands, which were my particular specialty, but I crumpled. I figured this must be what getting old is like.
By April 2015, I was again expecting. I took my four your old and one year old several hours away to stand in the cold to try to see then-president Obama. I was tired and cold and hungry and pregnant and as I tried to change Oliver’s diaper, my fingers would not obey me. After I ate and warmed up, things seemed to right themselves. I wrote off the numbness in my hands to pregnancy induced carpal tunnel.
Throughout the year I would have trouble suddenly losing grip on my pick as I played guitar for worship.
I put on bug spray with deet late in the summer, and my whole body started vibrating. I washed it off, but weird sensations remained.
Then, a few weeks before giving birth in October of 2015, I could no longer straighten my hands. I could not lift my arms all the way up to the sky. I could not hold our cast iron skillet with one hand. We knew I needed to see someone, but we were still adjusting to having a newborn in the house.
So in December, I went to a chiropractor family friend for the first time ever. He said he had suspicions, but wanted to know if I would Google it if he told me what they were. Of course I said yes, my curiosity is insatiable. So he referred me to a neurologist and I had my first meeting with a neurologist ever. He was kind and very thorough, doing a physical examination and even blood draws and an EMG on that first visit. He did not tell me what he suspected.
Somewhere in here, as I was falling asleep one night, God brought to mind the letters ALS. I could not remember what that disease was, so (blessed ability!) I sat up in bed and googled it. I mentioned it to Toby, and we prayed.
An MRI and lumbar puncture later in mid January, and we knew that we had exhausted modern testing to rule out other diseases. Then we just had to wait two weeks for the second opinion. That was where I met my second neurologist, a joyful fellow believer adding her hopefulness to my care team.
As Toby and I walked away from the second neurologist’s confirmation of my diagnosis, a lady passed us in the hallway and said congratulations! Toby joked that that was a strange thing to say after getting this diagnosis. We smiled, knowing she was referring to little Mercedes in her car seat swinging in Toby’s arm between us.
When I realized mid-January what the diagnosis would be, I went on a walk by myself. I was fearful. I cried. I prayed. We did not react much when we got the final confirmation. I guess we are both more emotional it private than in public, and more than the swirl of emotions, we both believed and still do believe that God is walking with us, caring for us, has good plans for us, and has conquered all disease.
So here we are. We walk by faith, not by sight. We don’t know what the future has in store but we do know that God is here, loving, and powerful.
Somewhere in here, as I was falling asleep one night, God brought to mind the letters ALS. I could not remember what that disease was, so (blessed ability!) I sat up in bed and googled it. I mentioned it to Toby, and we prayed.
An MRI and lumbar puncture later in mid January, and we knew that we had exhausted modern testing to rule out other diseases. Then we just had to wait two weeks for the second opinion. That was where I met my second neurologist, a joyful fellow believer adding her hopefulness to my care team.
As Toby and I walked away from the second neurologist’s confirmation of my diagnosis, a lady passed us in the hallway and said congratulations! Toby joked that that was a strange thing to say after getting this diagnosis. We smiled, knowing she was referring to little Mercedes in her car seat swinging in Toby’s arm between us.
When I realized mid-January what the diagnosis would be, I went on a walk by myself. I was fearful. I cried. I prayed. We did not react much when we got the final confirmation. I guess we are both more emotional it private than in public, and more than the swirl of emotions, we both believed and still do believe that God is walking with us, caring for us, has good plans for us, and has conquered all disease.
So here we are. We walk by faith, not by sight. We don’t know what the future has in store but we do know that God is here, loving, and powerful.