“I urge you to please notice when you are happy, and exclaim or murmur or think at some point, ‘If this isn’t nice, I don’t know what is.'” – Kurt Vonnegut
I’ve done enough whining on this site about the times when Parkinson’s is getting the best of me that it would be wrong not to write about the past week to week and a half. The simple fact is, that for some reason I don’t fully understand, over that timeframe, I’ve felt great. Indescribably great. Great as in how good one can feel when compared to how crummy I felt. Great as in I’ve actually reduced taking my meds from once every three and a half to four hours to once every nine to ten hours. It’s been literally years since I’ve felt this good. And while my voice and handwriting are both bordering on being illegible, those seem like minor complaints.
The balance problems that were not only getting me but actually literally knocking me down have largely vanished. Where I was prone to falling or crashing into walls or doorways or furniture multiple times per day, I now move normally and freely about 90% of the time. I’m sleeping six to seven hours a night, and while I still sometimes take a quick nap in the late morning (I’m convinced because of the cumulative side effect of my morning cocktail of six different meds), I’m awake and alert the rest of the day, and avoid the afternoon naps I’d been taking. I never imagined I’d feel this good again. Ever.
Why am I feeling so good? Well, I’m not sure. Here are my guesses:
- On the cardiac front, I’m still watching what I eat, and exercising an hour to an hour and a half every day. I recently had my annual physical with my doctor, and the numbers are very good:
- Weight: 212 pounds (down from 235 before my bypass surgery)
- Total cholesterol: 120 (down from 230)
- LDL (“bad” cholesterol): 48 (target: < 100)
- HDL (“good” cholesterol): 54 (target: > 40, ideal > 60 – still have a little work to do here!)
- Triglycerides: 88 (< 100 optimal)
While exercise and diet have been big contributors to my improved numbers, my nightly dose of Lipitor has been just as big a factor.
Heart disease, while scary and deadly, has been pretty easy to prevent. Just eat right, exercise, and take my Lipitor, and my numbers go down. These have been tried and proven methods, and the numbers provide an excellent indicator of progress.
Unfortunately, for Parkinson’s, it’s not as black and white. There are no proven biomarkers to determine how likely one is to get Parkinson’s, and once diagnosed, it’s known as a “snowflake” disease, as in everybody’s instance of the disease is a unique combination of symptoms and side effects that progress and evolve and react to treatments in varying and often times unpredictable ways. Treatment tends to be reactive and is dependent upon symptoms and is often trial and error.
So why am I at this point, eleven years into my diagnosis, suddenly feeling so good? I have no idea. What my guess is, is that after my recent appointment with my Movement Disorders Specialist (MDS), Dr. Z., we’ve arrived at a combination of meds, Deep Brain Stimulator settings, exercise, and physical therapy regime that are perfect for where I’m at in terms of the disease’s progression and how my unique instance is behaving at this time. Specifically, Dr. Z added an additional med to my daily cocktail, which has enabled me to cut back on the amount of Carbidopa / Levodopa I consume.
I do know that I am incredibly lucky to be treated by a MDS, especially one as gifted as Dr. Z, at one of the premiere institutions in the country, Northwestern Memorial in Chicago. Because I treat there, I have access to resources that sadly aren’t available to too many people who are suffering much more than I’ve suffered.
The other thing I know is that I’m better off appreciating these days when I’m feeling so well instead of wasting time trying to figure out why. I don’t know when this “honeymoon” period will end, I just know that it will. It might end tomorrow, next week, next month.
Until it does, all I can say is, “If this isn’t nice, I don’t know what is.”