Just when I think we have a handle of this disease, PD comes back in a new and different direction. Our latest, no make that my husband’s latest, challenge is lower limb dystonia. He wakes up in the morning with the toes on his left foot curled up and his left leg twisting inward when he walks. It reminds me of a club foot and can make his mornings quite difficult. It doesn’t seem to be painful and usually works itself out within a couple of hours as his medication levels out for the day.

Doing some research, I find there are a few different approaches he can take that might alleviate this symptom. The first involves taking more medication or a longer lasting formulation to keep his dopamine levels higher overnight. He is already taking controlled release carbidopa levodopa before bed, so the only other option there might be to add a dopamine agonist. When he was given one of those before it caused extreme acting out in his sleep and he doesn’t want that again. The other accepted treatment is botox injections, something we are now in the process of trying. 

He had his first round of injections about a month ago. His neurologist gave him a couple of shots in the bottom of his foot and one in his calf muscle. She told him that the drug takes 2-3 weeks to work and that once it does, he should expect to wake up to a more relaxed foot and leg. So far, he hasn’t seen a lot of relief, perhaps he needs a higher dose of the medication? He had Deep Brain Stimulation surgery so that he could take less medication, now he has dystonia and may need to take more? Where is this PD pathway leading us?

                For more information on dystonia and PD visit Dystonia | Parkinson’s Foundation.