Today Wally’s neurologist and I had a long discussion about what’s happening with PD patients as their Parkinson’s progresses.
He is reducing or removing Mirapex in his patients’ treatment program because in addition to the compulsive and obsessive behavior that increases over time, he has found that Mirapex is contributing to a patient’s “freezing,” where the patient “locks up” or can’t move. When he took the Mirapex away from one patient who was experiencing “freezing” at an alarming rate, the “freezing” stopped, almost immediately.
Different things can trigger “freezing” for a person with PD such as walking through a very narrow space or feeling crowded. It’s not uncommon for “freezing” to occur while a patient is taking a bath. Looking back on such things, a person with a wacky sense of humor could write a comedy skit, but while you are faced with this dilemma, it is far from funny for both the patient and the caregiver.
Mirapex, like Permax before it, affects the circulation system and can erode the heart valve, so the patient may mimic symptoms of Diabetes where the limbs swell with edema and/or the skin becomes red and flaky and easily infected.
Wally also experienced Dystonia. It became so severe that he explained that he thought his body was going to explode when his muscles spasmed. Sometimes his feet faced each other when the contortion was severe. Removing Mirapex from his treatment has seen the end of his Dystonia.
The neurologist and I agreed that all drugs must be viewed with an eye on their toxicity. Everything including Sinemet at first seems to act like a miracle, but the basic effectiveness of any of the Dopamine replacement and enhancement drugs may only be within a five-year range. After that, increasing dosages enhances the side effects and augments toxic impact. Patients believe that the drugs are helping because there is the span of relief after receiving the drugs on schedule before the relief wears off and the patient is anxiously waiting for the next round of pills. This describes what happens to a person addicted to drugs, so that fallout cannot be dismissed with the use of these PD medicines as well.
As these results become more common in the medical field, don’t be alarmed if your neurologist advises cutting back on meds rather than increasing them. A doctor’s aim is still to try and give the PD patient the best quality of life possible, but it’s becoming increasingly clear, more of the same meds are not the answer. Even meds to offset side effects of a drug program may lose their effectiveness and end up causing further problems. No one’s sure because newer drugs are being released without long-term studies, thus the patients themselves become part of the experiment as PD progresses from person to person.
I wish I had answers for caregivers who are left feeling helpless as they watch their loved ones live with PD, and as one commented on our wall, the changes in the person she loves is driving her crazy. All of us who are caregivers understand her frustration and repressed anger.
What is the breaking point for the caregiver? Each is human, not superhuman, and what is demanded of caregivers becomes a superhuman expectation that few can meet. Even the strongest of the strong have breaking points. The neurologist repeated to me today, “None of this is your fault, so you must not blame yourself.” But, we’re talking about a person we love. Even if we rationally see that “it’s not our fault,” it’s impossible to pretend it doesn’t matter.