Haven’t I been here before?
I can’t fight this alone. Medications are now an option.
Several months on a holistic route gave me no improvement in symptoms. So, I bit the bullet and decided to try another Parkinson’s prescription medication.
In October 2017, I started the Neupro (rotigotine) transdermal patch. This bypasses the digestive system (hence, less chance of nausea) because the medicine absorbs through the skin. The 8-mg dosage made me dizzy, so the doctor dropped me to 6 mg. I had no dizziness, but I also had no relief from symptoms. In December 2017, I agreed to try carbidopa-levodopa (the generic version of the “gold” standard therapy for treating PD). Unfortunately, the generic medication plagued me with nausea and dizziness.
In January 2018, I appealed to my insurance company to cover the brand name version of the medication — Sinemet 25 mg/100 mg. The doctor gave me a titration schedule to ease me into the medication. By February 2018, I was using a 6-mg Neupro patch per day and taking two Sinemet tablets three times a day. My “internal tremors” subsided and my second-left toe no longer curled. Unfortunately, this was not an “aha” moment; the change was very subtle.
Almost three years since diagnosis, I’m still putzing around.
My goal is to minimize my reliance on medications, as the long-term effects are not good (there is a risk of dyskinesia from using Sinemet). This is a classic case of a medication having a side effect that is also a symptom of the disease the medication is attempting to alleviate. In March 2018, my doctor agreed that I could cut back the Neupro dosage to 1 mg a day. This medication is cost prohibitive. Even with insurance, I pay over $200 per month.
Applying the patch to a different part of the body daily every 14 days is cumbersome. However, by the time I got to a 1-mg dosage, I had overwhelming fatigue, some depression, and general weakness. By the end of April, I had gone back to 2 mg of Neupro (while continuing with Sinemet). This change seemed to help my fatigue somewhat, but not enough for me to function well.
In mid-May, my doctor suggested I try a daily 3-mg patch of Neupro. This was very discouraging for me, as I want to take the minimum medications that will allow me to feel good enough to do the exercise I need to do to slow Parkinson’s progression and provide symptom relief. I want to decrease my reliance on prescription medications, not increase them.
What about exercise?
We walk a fine line when it comes to exercise. We need to push our intensity. However, if we get injured and can’t exercise, we lose the benefits of what movement does for our quality of life. Sometimes I wonder if I will exhaust my dopamine allotment for the day if I push myself too hard. Now, when I overdo my exercise, I am usually wasted for the rest of the day. As a former dancer and cyclist, it has always been in my nature to push my limits, and it is a tough habit to break.
To add to my confusion, I’ve read articles about how intense exercise is great for those with Parkinson’s. Exercising three times weekly at high intensity — 80 to 85 percent of maximum heart rate — is not an easy task, especially when plagued with symptoms of apathy, fatigue, and lack of motivation. As a former Spinning instructor, when I heard cycling is great for Parkinson’s patients, I was ecstatic. Piece of cake, I said to myself. However, the recommendation was to pedal at 80 to 90 rpms for 45 minutes, three times per week, a challenge even without Parkinson’s.
In Greek mythology, Sisyphus was condemned to an eternity of rolling a boulder uphill to watch it roll back down again. At times, I feel like a modern-day Sisyphus when I exercise. It feels like a fruitless task that has no ending and is impossible to complete.
Do I still need to take prescription medications?
I am continuing to adjust my medications to find that Holy Grail combination that will hopefully make me feel more like my former self. I will take my supplements, attempt to reduce my stress where possible, maintain a healthy vegan diet, exercise, and meditate. Because I am trying so many things to improve my situation, it will be very difficult to know what is working for me and what is not.
In my next column, I will share with you what I believe has helped me the most.
Note: Parkinson’s News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Parkinson’s News Today or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to Parkinson’s disease.