plot twist…

I’ve had a couple of weeks to sit with this and I haven’t really known how to process it. Honestly, I still don’t really know how. But, I figured I’d do what writers do (especially writers who can’t sleep) and I’d well…write.

I had a neurology appointment a couple of weeks ago. I’ve noticed some mild progression in some of my symptoms that needed to be addressed. After some discussion, we decided to increase one of my three Parkinson’s meds. This is always a tough decision for two significant reasons.

Reason 1; while the correct dose will, indeed, silence the tremors and lessen other symptoms, too much of the medicine will trigger what is called dyskinesia…abnormal, uncontrollable, involuntary movements similar to tics or spasms.

Reason 2; one of my medications has a “life span” or a maximum dosage “limit”. The efficacy decreases and ultimately ceases after a few years of this medication….typically around seven years. Now, this isn’t quite as concerning if you’re a 70-year-old patient. But, I’m 47. I want this medication to help me for as long as it possibly can. I’ve already been on it for two years. I want more than just five more.

I’ve also developed some new symptoms. I’ve been experiencing additional tremors that appear during and/or following activities. Just normal activities like using my laptop, trying to clean, trying to cook, etc. See, the “typical” Parkinson’s tremor that is a well-known characteristic of the disease is called a “resting tremor”. Meaning, just as it sounds, it most often occurs while a person is at rest. Well, let me tell you…there is nothing restful about a resting tremor. Frankly…it’s exhausting. These new tremors, that happen during or after activity are considered “active tremors”. Makes sense, right?!?

Well, my neurologist said that these particular tremors sound more like what is classified as an Essential Tremor. This…is (was) potentially good news. Essential Tremor is just that. A tremor. While it is not an ideal diagnosis, a diagnosis of Essential Tremor doesn’t come with many of the additional debilitating, and sometimes frightening, symptoms that a Parkinson’s diagnosis comes with.

Do you see where this could be going?!? When he said this, for one brief moment on that Tuesday…I thought that maybe, just maybe, I didn’t have Parkinson’s Disease. But…I do.

My clinical exams continue to exhibit symptoms that are, in his words, “textbook Parkinson’s”. And…plot twist. I also have Essential Tremor. Apparently, you can have both…20% of PD patients also have ET. They are tremors of two completely different origins and are treated with two completely different medications. So, I’ve started a new, additional medication…one that is targeted at the ET. I’m having some difficulty adjusting to this new medication. But, I’m trying to remain optimistic that the undesirable side effects will subside. If not, there are other medications for ET we can try. It’s just such a daunting and frustrating task.

So, I now land in the extremely small percentage of PD patients, 4%, that have Young-Onset Parkinson’s Disease. And, I also land in the small…but not as small…20% percent of PD patients that also have Essential Tremor.

While this certainly isn’t the news I was expecting…it is what it is. The additional tremors were already happening. All this appointment did was give them a name.

And, so I’ll continue. I’ll continue tremoring, I guess now both while resting and while active…but I’ll also continue fighting.