Inspiring you to live well with Parkinson's disease
The bumps and shaking rudely wake me up from my light dozing. And no Parkinson's is not the culprit. In fact sleep is the only time I get a reprieve, my muscles unusually relaxed, my body at rest. Instead it's the turbulence. I'm finally on my way home from another charity event, this one a five hour flight away, which unfortunately was two and a half hours late in its departure time. Prior to boarding, as I was moving around restlessly in the hard waiting room chair, my husband, intent on his iPad, mentions that I need to relax, enjoy some "nothing" time. What he doesn't realize is that a delay of a few hours further lengthens my travel time, am uncomfortable experience to begin with.
Not that I let it prevent me from traveling. Like most other things, I refuse to let PD take away that aspect of my life. I would much rather suffer through than not experience what the world has to offer. But admittedly, the cramped leg room (especially on American airlines I must say) is not only annoying, but painful. Muscles already with a tendency to cramp, do so to a much grater degree when confined to 6 square feet. That doesn't even account for the dystonias which are a whole different level of complication. Trying to control the awkward motions that define this symptom by repositioning my body time and time again, while not triggering any alarm in passengers in my immediate vicinity, is monumentally difficult. Thankfully it's just my husband sitting next to me today and I can try and contort my foot, the current instigator of trouble, without needing to expend excess energy masking it.
Symptoms and side effects are always more prominent while I travel. Perhaps because I'm more fatigued, the lack of routine, but more likely it's due to the fact that it's much more difficult to manage my medications. I attribute a lot of my success in managing this disease due to the fact that I am able to adjust my medications on a dose by dose basis depending on my activities, my level of symptoms and the side effects I am experiencing. But throw in time changes, jet lag, missed meals and awkward waking and sleeping times and that process can sometimes be nearly impossible.
This trip was no exception. We were up late, catching up and partying with good friends and as per my usual "hotel linen" phobia, sleeping was an exercise in futility. And unlike at home where I can escape to another part of the darkened house, I am left lying on one side of the uncomfortable mattress, trying not to move too much so that I don't disturb my poor exhausted husband beside me. I remember a time when vacationing automatically included lounging and dozing into the mid morning hours, free from all schedules and commitments. Now instead I can’t wait for morning to come so that I can leave behind the discomfort of the night and stretch my weary body.
Yet despite the difficulties a trip brings and all the advanced planning required, I love to travel. It requires flexibility and resourcefulness on my part which is difficult with a disease that is so unforgiving, but I push myself. Time away brings a certain sense of freedom, escapism really. If only for a little while, I can lose myself in a different space, give my mind a break from the routine challenges I face on a daily basis. And that for me is worth the cramped leg room, literally....