Here's another peak into life with ALS.
Picture this: You are standing still with your arms at your sides. Without warning, you start to sense that you are losing your balance, but you haven’t moved. Suddenly, you start to fall but are unable to move your feet fast enough to regain your balance, and you can’t move your arms to stop or break your fall (think of a tree). You just sort of watch the ground getting closer, realizing that there is nothing you can do but prepare for impact. It’s gonna hurt! Bad!! And then you smack the ground, face first, with an instant flash of sharp and dull pain radiating throughout your head, pain in your arms and legs from being twisted every which way. You feel your blood pooling around your eyes, nose, and mouth, and you just lay there waiting for help, unable to move yourself or get back up (again, think of a tree).
One of the unfortunate occurrences that is all too common with ALS is falling down. Falls can occur often, and they are hard. When I first started falling, they were minor at first. I fell rolling out of bed one morning in a hotel room and cut open my face on the corner of the bedside table. I was in my office at church and caught my foot on the edge of a chair and BAM! I find myself on the floor. I have fallen down stairs at the hospital and in a parking lot in Vermont. I have cracked porcelain tile with my head! I’ve cracked my head open at least 3 times, landed in a patch of blackberry briars face first, impaled my chest on the corner of an end table, bent my arms and legs in every direction, and countless minor falls. They just happen without much warning, and you do really fall like a tree – unable to put your arms out to break your fall!
One ALS friend said, “It’s not like I don’t have a reason for falling. It’s just not a very good one!”
Amazingly, I haven’t fallen in a few months, but I still stand with assistance every day, so a fall is a real possibility. Fortunately, I always have someone at my side to help me break my fall and ease me onto the ground should it occur.
#ALSAwarenessMonth #TheTallerYouAreTheHarderYouFall #HardHeaded #HopeIsNeverLost
Warning - Graphic photos follow
Stop now if you get queasy.
Here are just a FEW of the tumbles Jonathan has taken. If only I had a picture for every one...
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| I remember Jonathan walking in the front door from work. His scrubs were stained with blood everywhere and there were remnants of blood stains on his face and ears. I couldn't figure out if it was his blood or patient blood. A tip of his balding head downward dispelled all questioning... He took at tumble down a flight of stairs at work. Jonathan ALWAYS took the stairs and with long legs, naturally he clipped away at them two by two. With the unpredictable weakening of his legs what had always been his modus operandi became more of modus catch-a-toe-thanks-to-drop-foot-i and Jonathan's head came to a halt on the cement landing. If left a bit of a mark. |
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| Fortunately when you work at the hospital there are quite a few capable hands to put you back together again. |
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| I was getting Jonathan ready to shower and left him leaning against the bathroom counter. Having 7 kids means he doesn't always receive my undivided attention. The 2 year old managed to get her head and arm stuck in the arm hole of her shirt and was struggling to find daylight. I left Jonathan to assist her in getting unstuck and in less than an instant he was DOWN. Cracking the bathroom tile with his noggin. The worst part was that in the process of falling down he swung the door shut and landed in front of the door. I wasn't in the bathroom with him and his body was blocking the door. Mind you, he has NO use of his arms or legs and can't communicate verbally. Man Jenson, aka- the tree trunk, went down hard with nothing to brace his fall. I kneeled down to peek under the door and all I could see was a pool of blood and him facedown. I had NO IDEA what kind of damage had been done. He couldn't communicate ANYTHING. I knew I needed to get to him but I couldn't get the door open. After evaluating window options etc. I finally told him to brace himself and hoped his neck was okay. I pushed as hard as I could and smeared his filleted head across the floor. I got enough of a gap to wedge my body in. I rolled him over and found aweseomesauce. A bit of backup was going to be needed for this one. I was alone with the little kids so I had to call a friend to help get him off the floor because if he goes down I can't get him up alone. A buddy at the hospital stitched him back together. Rich Huffaker has been this man's angel on many occasions. This one took a few days to clear up. |
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| Just a typical face plant kind of day. |
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| An action shot of Adam and I getting Jonathan up after a fall. Lil' Miss Anna felt the need to help rescue her papa as well. |
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| This is another wife FAIL. On a family road trip across country us Oregonian's found ourselves with a broken ramp hitch for the wheelchair (a whole other really long story) in Vermont. We went to get some repair work done and while outside the RV investigating how to solve the hitch problem with the repairman, Adam and I simultaneously let go of Jonathan, who was standing beside us. IMPORTANT NOTE: You don't let go of a tall man with ALS. You simply don't do things like that. They fall down. Really hard. And bleed. And people call ambulances to make sure they aren't dead. |
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| This was the day Jonathan had his port placed to receive IV infusions for a new drug, Radicava, approved for ALS. He showed up for surgery dressed to impress - complete with facial road rash. |
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| This was another delightful fall while we were in Australia at the International ALS/MND Symposium. While trying to get him to the shower I managed to get off balance and he went down. This was the day we were celebrating his 3 year mark of diagnosis. Nothing like starting out a memorable day with a 6:30am floor drop. I had to wake up his brother to get him off the floor for this one. |
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