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 heard also 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, then the leg will spasm with a kick outward. Sometimes the spasms 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 true with the spasms. Smoking would relieve them when nothing else would. It wasn’t the nicotine either, it was something else in the cigarrette because nicotine patches did not provide the same relief.
In 2009, Lynn had a baclefen pump implanted. Baclefen is a muscle relaxer used to treat spasticity. His oral dose was very high and yet the spasticity was not being relieved much at all so his doctor advised getting an interthecal 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 a tubing that is inserted into the spinal column.) He did and it really 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 rigidity (tone) came under control.
In November of 2010, he was admitted to the hospital with an infection and while he was there, he coughed up an nasogastric tube that was giving him a tube feeding and aspirated. He developed pneumonia. Being in the hospital with pneumonia forced him to stop smoking obviously. He didn’t want to start back when he was released but he still had spasticity to deal with. He found another way –an electronic peddler. Now when he feels the tension increasing, he peddles.
Unfortunately, the muscle spasms that stopped when the pump was implanted have recently returned. They have come back so frequently that he’s peddling off and on around the clock. He even has to peddle while he sleeps! He will go to bed and the leg will start jumping. 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 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 really 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?