All my life, I have heard people say something was as “stiff as a board,” but it wasn’t until Lynn started struggling with MS that the phrase took on a literal meaning to me. I had also heard of spasticity, but I had no idea just what that could mean. Early on, Lynn started struggling with spasticity (or a better description would be spastic paralysis). His legs would suddenly become so stiff that even if I used every ounce of strength I had, I almost could not get his leg to bend. It was the spasticity that finally made him stop driving. His leg would not bend so that he could brake or accelerate! Sometimes the spasticity would last a few minutes, but gradually it became a constant thing.
In addition to the spasticity, he also had muscle spasms. His leg will begin to tighten up like a spring beginning to coil, and then the leg will spasm with a kick outward. Sometimes the contractions are just annoying–other times they are so intense they are painful. Sometimes it’s one leg–sometimes both.
When Lynn and I got married, he was a smoker, but he cut way back on smoking cigarettes. He would only smoke at work or have one at night. When the spasms started, smoking became his only relief. I hate cigarettes, but I would buy him a case at a time and gladly light one up for him rather than watch him suffer. It was amazing. His leg would be so incredibly stiff that it would be sticking straight out. He would take two or three hits of the cigarette, and I could literally watch the stiffness release and his leg become limp again. The same was valid with the spasms. Smoking would relieve them when nothing else would. It wasn’t the nicotine either; it was something else in the cigarette because nicotine patches did not provide the same relief.
In 2009, Lynn had a baclofen pump implanted. Baclofen is a muscle relaxer used to treat spasticity. His oral dose was very high, and yet the spasticity was not being relieved. His doctor advised getting an intrathecal pump implanted (that’s a pump that is implanted under the skin and holds medication that gets pumped into the area outside the spinal nerves by way of tubing inserted into the spinal column.) He did, and it helped a lot. The spasms stopped, and the rigidity greatly improved. Over the next year, the dosage gradually increased over several months until most of the stiffness (tone) came under control.
In November of 2010, Lynn entered the hospital with an infection, and while there, coughed up a nasogastric tube that was giving him a tube feeding. He aspirated nutrition and developed pneumonia. Being in the hospital with pneumonia forced him to stop smoking obviously. He didn’t want to begin smoking again after his discharge, but he still had spasticity. He found another way –an electronic peddler. Now when he feels the tension increasing, he peddles.
Unfortunately, the relief granted by the peddler was temporary. The spasms have returned. They have come back so frequently that peddling off and on around the clock is required. He even has to peddle while he sleeps! He goes to bed, and the leg starts to jump. Then I get him up into his wheelchair and attach his legs to the peddles. I go back to bed, and he sits and peddles. The peddling then relaxes the spasms, and he falls to sleep. We have adapted his wheelchair so that we have a board in front he rests his arms on, and I have a headband I attach to the back of his chair so that his head won’t dangle and cause neck spasms. He sleeps that way for a while, then wakes me up, I put him back to bed, and he sleeps till the spasms start again. We are usually up and down like that a couple of times a night.
What would be helpful is if there was a device we could put in the bed that would alternately raise his legs while he slept so the tension would be relieved and he could stay in bed. Does anyone know where we could get such a device? His hospital bed was like that, but we don’t want to use a hospital bed; they aren’t particularly comfortable. Got any ideas?