The Honeymoon is Over
Steve Walsh 9/24/19
One of the first things I learned upon receiving my Parkinson’s diagnosis is that there is a period of time following diagnosis that is frequently referred to as the Honeymoon period. My understanding of the Honeymoon period is that during this period the patient’s symptoms are reasonably well managed with medication while allowing the patient to continue to maintain their lifestyle. Depending upon a variety of factors such as early diagnosis, age, and overall health the Honeymoon period can last for a few months to many years. Since this is my story, I will focus on my Honeymoon period. Here’s a little background.
Let me stress that I am not a medical professional. This essay is based on my experience and understanding. Given that disclaimer here is my simple explanation of PD progression eventually leading to the end of the Honeymoon for me.
First of all, PD is a progressive disease. That means it gets worse over time. We can help delay the disease by maintaining healthy habits like eating right and exercising. These steps however only serve to slow PD down. At present there is nothing that stops the progression completely. So, as the disease progresses the medical response is to increase the dosage and frequency of the medication. At some point we max out the effectiveness of the medication. At this point we begin to experience a decrease in ON time and an offsetting increase in OFF time.
So, what is ON and OFF time? Simply put, for me ON time means I feel good, I can basically function normally for someone my age and physical condition. OFF time means I don’t feel good and it may be difficult to manage what would normally be simple, routine tasks. This is an extremely simplified explanation but hopefully it gets my point across.
So as PD progresses we increase the dosage and frequency to maximize ON time. At some point the maximum dosage can no longer support ON time for the entire cycle. My current dosage/frequency is one 25/250 mg tablet every four hours. When I started this cycle that was sufficient to provide ON time for the entire four hour cycle. Now it is not. We PD patients joke among ourselves that we can tell the time simply by feeling our meds wearing off. Since the effectiveness of the meds looks like a normal distribution (bell shaped) curve, it takes time for the next dose to kick in. So if dose 1 wears off in 3.5 hours and dose 2 takes 30 minutes to kick in, you have 1 hour of OFF time.
So how do we deal with this situation? In the near term we learn how to manage our ON time to get the most out of our day. For example, I typically take my meds at 7am, 11am, 3pm and 7pm. (I have a separate extended release pill at bedtime). If I have an 11am appointment I may take my second dose at 10:30 to improve my chances of being ON at 11am. Of course this will eventually catch up with me but hopefully when it does I will be resting on the couch at home. This strategy works for awhile but eventually there is not enough ON time being provided for us to pull ahead. So then what?
The next option is a surgery called Deep Brain Stimulation or DBS. DBS requires the implantation of two leads into the brain which are then connected to a pacemaker-like device implanted under the skin near the collarbone. While the meds delivered ON time in a bell shaped curve, DBS provides ON time in a constant even flow using electrical impulses. Many of my PD friends have undergone DBS and they all report positive results. As a result, I have decided to move forward with DBS. Please note that DBS won’t fix everything PD nor will it be effective forever. It will help manage some of my symptoms for what I hope will be a very long time.
So my PD Honeymoon is over. I have no complaints. I had a good five year run that allowed me the time to learn about PD and how to fight it. I made many new friends along the way who continue to help me along this journey. I’m looking forward to the next phase of my PD adventure. Thanks to all of you for helping me along the way.