One of my close friends recently asked me, “What is a typical day for you”? My knee-jerk reaction/response was going to be, “the same as anybody else”. But after some introspection and conscious self-observations of my activities, it dawned on me that my day required a lot more planning - before the day begins and as the day progresses.
Here are some basic and simple pieces of information about ND (Please see entry titled “Why o Why” for necessary context). The lower levels of an important chemical Dn in the brain leads to lower levels of kinetic (movement related) behaviour so one is prescribed medication to boost the level of Dn. The absorption of this extra dose of Dn by the body depends on many factors, most important of them being the ingredients in any food consumed (upto one hour) before and after the consumption of the medication. As you can guess, one is also forced to take another medication to improve the body's absorption capability and one more to counter the negative effects of the second medication, and so on.
Not surprisingly, when a drug regimen calls for consumption at pre-specified times, given the dynamics governing our lives these days, you are bound to violate the regimen some of the days for a variety of reasons.
- You are in the middle of a meeting.
- You are travelling and food is served at different times in different places.
- You get too involved in what you are doing and your medicine intake gets sidelined.
Whatever be the reason, the symptoms of ND become more visible during these moments of lapse - at least one feels that way, and often the psychological impact causes this feeling to be exaggerated. Being nervous about an upcoming event, has the same effect. One has to consciously curb this feeling and that is not always easy. The bottom line is that a ND patient’s movement depends on many factors and circumstances to be always predictable.
How do patients with ND deal with life under these conditions:
- Some withdraw from life and go into a shell - unfortunately this is not at all rare.
- Keep up with work. The more you have to think about other things, the less time you have to worry the external symptoms.
- Pretend you don’t have any ailment. Given the explicit and externalized nature of ND’s symptoms, this is hard and unless you are a “Stitha Pragnya” a difficult act to pull off.
I told myself: there is too much remaining to do in this life - I hope I never have to resort to (1). As of now, my day is governed by (2), and I am hoping that my yoga + meditation will allow me to simulate (3).
In the final analysis, the factors that govern my typical day are quite atypical, and hence the day is also not typical, mostly caused by large variations in the mobility factor. The mind might say: get up and walk to the shelf to pick up that book. But, the body has its own compulsions and so refuses, with the mind left to feel helpless. So your reading has to wait.
Getting up from a sofa, putting your other foot forward to walk, lifting something a small child easily can, turning your head to see who is to your left, are all actions that a person with ND oftentimes cannot take for granted. A minute ago you could do something does not mean the next minute you can. The frustrations that result can have a snowballing effect on one's psyche, with consequences many cannot contemplate. The only antidote, where possible., is to be conscious about oneself and refuse to get into the spiral.
Easier said than done:(
Here is where a spiritual attitude has much to offer.