Progressive Phobia of Parkinson’s

Greetings fellow sojourners throughout the Parkinson’s community. I would like to offer my opinion of the progression of this wretched disease and offer coping mechanisms that actually promote healthy and sustainable lifestyles. You know, when you are first diagnosed with PD, some doctors are optimistic and say things like, “You're young, and scientists are making great progress into research” which is a lot better than, “You’ve got Parkinson’s disease, and there isn’t a known cure. By the way, your symptoms will become gradually worse.” Although nobody wants to hear the diagnosis, it does bring a sense of closure to why some people are symptomatic. Okay, so now you know the name of the beast, but how do we tame it?

Being proactive

After the initial diagnosis, you may feel denial, anger, questioning followed by tears and eventually acceptance. Ah yes! The stages of grieving are well known among all forms of chronic illnesses and they all follow a pattern of: “I want to be left alone!” First, we must resist and overcome those feelings of dread and darkness. Sometimes it requires the help of an accountability partner. Be nice to this person. They are trying to help. Second, realize that the day doesn’t officially begin until your feet are on the floor. Notice I didn’t say your whole body. If this happens, you’ve done something wrong and should probably dial 911. You may not feel like getting out of bed but PD will.

So, you are up, now what? Move slowly if necessary, gathering whatever aids (cane, walker, meds, etc.) Allow your body to adjust to a standing position - especially if you have orthostatic hypertension, which is a common side effect of having PD. You may be one of those people that are dependent on a wheelchair or scooter or are newly diagnosed. In either case, the more proactive you are in your overall treatment, whether you rely on exercise, holistic methods, or conventional medicine, early intervention is important. Notice I didn’t guarantee that this disease won’t progress because every case of PD is different. Find what works for you, and make it a routine.

30 days

Behavioral experts say that if you repeat an activity for at least 30 days consecutively that it becomes a habit. We need to develop healthy habits. For example, good nutrition is a healthy way to begin. My grandfather used to say, “Good stuff in – good stuff out!”. This is good advice since there is scientific evidence that PD begins in the gut. With all that good stuff inside your body, try an exercise routine. It does not have to necessarily be physically challenging, like running. There are a number of activities that are low-impact such as yoga, tai chi, or simple stretches. My doctor used to tell me all the time: Just move – “keep moving” and then during visits he would hold me accountable with my activity. My point is to make the commitment for 30 days, and you will probably worry less about progression. I’ll just mention that in my Parkinson’s strengthening class, there are a lot of 70-year-old women that are in incredible shape!

Don’t get scared now

Fear, as I’ve come to understand it, is the result of misinformation, lack of understanding, worry and doubt collectively. The more informed of PD we become, the less worry and doubt - two emotions that can lead to panic and fear. If we keep ourselves informed, we can raise the positive expectation of a future where PD remains, but we are wiser and smarter not just medically but personally. A future that may or may not hold a cure for PD but one filled with hope not fear. Keep fighting my friends!