Jack Frost and I have been corresponding because I asked him for his insights into the drug question. Jack has had PD for 31 years. His Parkinson’s symptoms started as young onset and continues to progress slowly for him today. What’s further interesting is his background in physical chemistry and food science. He says, and I quote:
“Ahhhh meds!!!! I had a year-long battle with “Patients Like Me” about the cavalier prescribing of PD meds. I do not think the medical research community or the pharmaceutical companies have a firm grip on the mechanism of PD and exactly what roles dopamine and acetylcholine play. We used to call this throwing darts in the dark. I do not understand how the FDA has approved these meds with the weak statistical results for efficacy and safety. The prescribing doctors are relying way too much on what the drug reps tell them. I personally am experiencing positive help with Sinemet at this stage. I would not recommend anybody to take a dopamine agonist. I have studied the trial results for agonists and it appears to me they do more TO you than for you. As you can see this is a sore point with me. To answer your question directly, I would say that all PWP’s are different and have different responses to the meds. This in itself is a sign that we do not have PD nailed down.”
As a caregiver and a PWP, be careful if you are prescribed agonists. Be aware of their deterimental effects. If anything occurs that doesn’t feel right, ask your pharmacist to look up the agonist in the pharmaceutical anthology and tell your doctor. Neurologists can’t just keep on prescribing more drugs searching for a better quality of life for their patients without realizing the physical cost to the patient and family. And you as the patient and caregiver need to let them know that these side effects are not an acceptable trade off because the quality of your extended life is a sentence to hell. As far as I am concerned, you are better off to ride out the disease on as limited amount of Sinemet as possible. I’m still very angry at what Wally has suffered unnecessarily because we thought we had no choice. You DO have a choice, and you have the right to make that choice.
Bonnie and Wally