While I write this, I am thinking about the side effects of Parkinson’s medications, the potential aftereffects of surgical interventions, the choices we all face when deciding whether a recommended treatment or the disease is worse. Many of the drugs for PD come with warnings about dyskinesia, dizziness, constipation, confusion, even impulsive behavior. All treatments presented to my husband have some negative aspects and it is important to weigh whether they could potentially cause more problems than the symptom they are designed to control. This can be particularly difficult when your loved one has cognitive impairment and you are left to figure things out without their input.

In our case, my husband is still capable of making choices and has declined many medications because they disrupted his sleep or his thinking processes. When he took them, he would have nightmares, strike out in his sleep and then was groggy all day long. After years of consideration and multiple conversations with his neurologists, he did choose Deep Brain Stimulation surgery. We made sure that we both understood the risks before he underwent the procedure. This trade-off took his tremors away but replaced them with balance and voice issues. I think it was worth it, I’m not sure he agrees.  

Everyone presents differently on their journey with PD which means their treatment options, and reactions to those options, are going to be different. There may be universal things, like carbidopa levodopa, that can provide relief for everyone. Then there will be medications or procedures like my husband’s DBS which work only on a particular sub-group. I try to help him by researching his options and their potential outcomes. I ask questions, observe what is happening and talk with him and his doctor when things don’t look right. Most of all, I always discuss any concerns about what could happen when he is making changes to his treatment plan. It’s essential that we work together to figure out what treatments are best for him and for us.