Category Archives: ALS

My Poor Tongue (Part Two)

Shelly and Jessica

I woke up the next morning feeling relieved that I didn’t have any more tongue-biting incidents. As my day rolled on I started to get nervous about the upcoming night because we didn’t yet have a solution for my problem. Earlier in the day Kelly searched the Internet hoping to find some answers and she found many but nothing I was willing to try. The more we talked about it the more anxious I got. Bryan suggested that we call our good friend Eric Sesselmann who has been a well-respected dentist in Muskegon for many years with the thought that he could recommend a simple solution we could try. Eric was out of town but said he would check on me in a couple of days when he returned home. Bryan then thought to call one of his best friends, Jessica Bodenberg, who just graduated from dental school and is now working in Muskegon at her family’s dental practice, Great Lakes Dental Excellence. Jessica said she would ask her family of physicians if they had any ideas and she would get back to us. That night I slept with my head facing up towards the ceiling and had no tongue biting issues.

The next morning Bryan called with excitement in his voice and said Jessica and her aunt Shelly would be stopping by to help us. When they arrived they made an impression of my teeth and said they would be back tomorrow with the finished product. The next day doctors Jessica and Shelly came with the finished bite splints. The splints fit perfectly and I no longer bite my tongue during the night. As a added bonus when I yawn my top teeth no longer crash down on my bottom teeth. Before they left, Shelly ground and polished my jagged front teeth.

Thank you Eric, Shelly and Jessica. We will never forget this.

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My Poor Tongue (Part One)

Rosemary

Last week during the night I was jolted awake because my tongue was sandwiched between my tightly clenched upper and lower jaws and I thought I was going to bite it off. Somehow I was able to wake Mark up and make him understand that my tongue was lodged between my teeth. Mark tried to pry my locked jaw open and finally my lower jaw gave a little so I could pull my tongue out. It’s a good thing I was wearing my upper bite splint otherwise I’m sure I would have bitten my tongue off. I was so relieved to have my tongue back in my mouth so I could go back to sleep but then my jaw locked up again and again, trapping my tongue between my teeth each time. By that point I was afraid to go back to sleep so I asked Mark to get me up and into my chair. It was only three in the morning and I knew I wouldn’t be able to sit in my chair for the rest of the night so I reluctantly got back into bed. I slept for the rest the night with my head up hoping that gravity would keep my tongue in my mouth and it worked. There was no more tongue biting that night and I was relieved but then I thought to myself ‘What’s next? What more can ALS take from me?’.

The Hoyer Lift

The Hoyer Lift

Ready or not I have graduated to a Hoyer Lift to help move me and the first time we tried it wasn’t pretty. We’ve had this big beast parked in our spare bedroom taking up valuable space for a few months. My legs are failing me and it’s getting harder for me to stand without my knees giving out so we decided to try the lift to give Mark’s back a break. After watching a YouTube video on how to use the lift, Mark laid me down on the couch on top of the hammock that was going hold my body when he lifted me. He attached the straps from the hammock to the arms on the lift and started to lift me. The fabric on the hammock spanned from my neck to the tops of my legs so when he began to lift me my head fell back to an uncomfortable position and my legs fell to the floor causing my back to arch. I don’t think the Hoyer Lift was designed to transport a patient with severe muscle weakness issues so Mark went back to the YouTube video and watched it again. Heaven forbid that he would ask for help from one of our many friends and family members that are nurses and physical and occupational therapists. It’s much like a guy not asking for directions because he thinks he is not lost and can find his way on his own. Anyway, before Mark aborted the lift he had an idea. He found a strap from my wheelchair that we weren’t using and he put it around my head and attached it to the hammock hoping it would support my head. Then he got two of his belts hoping they would support my legs. Lucky for me Kelly showed up and started laughing at us as Mark tried to lift me with the new adjustments. Both the strap and the belts worked for a short time but they were not secure so we decided we needed to get some help. Kelly called Airway Oxygen where we got the lift to see if they had a larger hammock that would cover more of my body and they did so they delivered it to us that day. The next day we tried the lift again with success. The new hammock worked perfectly and as Mark gently raised my body up with the lift and as I was dangling in midair he said it reminded him of hoisting an engine from a car.

The Drooling Begins

I knew drooling was part of the ALS journey but it’s one part that I’ve been dreading. My drooling isn’t bad while I’m sitting down but when I lay down my mouth feels like a slow-running faucet. If you visit us or see me out and about and I’m drooling please don’t hesitate to wipe my mouth. I will be grateful.