I might be asking for trouble for writing this, but here goes…
I have always been a good little patient. I have listened to what my doctors say and done everything by the book, so to speak. But as I get older with this little monster as my constant companion and admittedly becoming more forgetful when it comes to my medications (and other stuff), I am also becoming stronger in myself. I am finding that in order to survive, I am having to be tougher. Stronger. More sure of myself. Who I am. And that means if I take less pills than the doctor prescribes and am still alive, then so be it.
Within 3-4 years of being diagnosed with Parkinson’s disease, I remember taking up to 26+ pills a day, either prescribed and over the counter stuff that would aid in my symptoms due to PD. I took them all. I had complete faith in my neurologist that he knew what was best for me. But, even though I feel it is blasphemy to say this, I’m going to say it/ask it. Did he know best? Does anyone?
I’ve had DBS (Deep Brain Stimulation) and perhaps it is because of this wonder surgery my PD can appear to be ‘invisible‘ . I assure you, for so many reasons, visible or invisible, my fight with PD is real and ongoing.
But, I am taking less and less in the pharmaceutical area of the disease. This past year I began to get sick after taking pills I have taken for a decade. Morning, noon, and night. So I decided to take matters into my own hands and find out which one was the culprit in making me not want to face another day of being sick. I had many to choose from.
After bringing up the subject with my new neurologist, we decided to go with the Amanadine, then the next visit we went with the Azilect, then the Aricept. Then the sickness stopped. When beginning this regimen, I was on doses of pills of many different colors that added up to approximately 16 pills a day. Every three months prior to July, my current nuerologist would make adjustments to my DBS unit so as not to have to up the medications more.
After attending the World Parkinson’s Congress in September, I keep coming back to a comment a doctor made to a woman with Parkinson’s disease who asked, “How do you feel about patients taking the reins on their own care and adjusting their treatment program as they see fit?” The doctor, an MDS (Movement Disorder Specialist), replied, “I don’t have a problem with it as long as you tell me about it after you’ve done it.”
Of course, a patient is limited to what they can do in regards to medications but I am finding fewer pills are working well for now. My doctor is aware of all the medication I am taking and the changes. I wouldn’t do it without his approval. The one thing I do notice – my wearing off is greater. It is not as gradual and if I don’t stay current, I shut down quickly. That is somewhat scary to me.
For now, I am grateful less chemicals are filling up my flesh, because I know, for now, it’s only temporary.