Sometimes, I feel like everything is just going too fast with my daughter nearly finishing high school and my only nephew applying for master’s program while my oldest niece heads off to college. I remember holding all these babies in my hands thinking I could hold them forever in my arms. Now, although I am happy and proud, I just want time to stop and enjoy all of it. Why can’t time have Parkinson’s? Wish it would crawl like molasses as my body often seems to do when I want so much to move faster. Wish time would have a bit of memory loss, as I often do after taking my amantadine, when it comes to the bad days and freezes during the moments of sheer joy like when I listen to my daughter play the piano and marvel at her talent as she plays one of my favorite melodies-Nocturne. But, alas as much as I would like time to develop PD it would have none of it. However, it has become my friend showing me the beauty around even as my disease progresses and seasons change – there is always something new to behold, and learn from.
So has been my life this last month, I thought that once my practiced closed I would feel a void in my life. But, rather I have discovered new activities, skills, talents, and friends I never imagined that I would have all thanks to living with PD.
In my role as ambassador of PF and activist for all people with Parkinson’s, I got the opportunity to have several interviews nationally to raise awareness in the Hispanic community as we celebrate 200 year anniversary of the “Shaking palsy” publication.
No more fast paced times have I had than during these days of interviewing sitting by my phone starting way too early for me and my meds to kick in- fortunately I did not have to go further than my bedroom. one talk after another and another- feeling my words begin to slur as my mouth became thick and dry and hypophonic (low voice) as the effect of the medication wore off quicker than usual due to the high mental activity. The days went by in a blur compounded by other responsibilities and activities, I as a mother have. Two of my favorite stories which will live in my memory bank forever that occurred during this crazy period are as follow.. which will forever cause a big smile.
My daughter was to sing in the choir at church, I was spent from all the awareness activities and radio show talks that I could barely move and my neck was in a state of complete spasm from talking on the phone for hours. The cervical dystonia invariably triggers a wave of migraines which usually I can abort but not this week when I needed most because the insurance had refused to cover my Maxalt which I have taken for years and the medicine I was given to replace only caused my head to hurt more. There I was with severe migraine throwing up and stiff as a board trying to get dress in a hurry. No can do my body protested. But, I must get ready and attend my daughter’s performance I insisted despite by husbands better judgment, of course I should have listened because by the time we arrived we only saw her leaving the stage.
The second scenario-came about in the middle of the week in the midst of a hectic schedule which include teaching. A friend associated with a group of women I teach left me a voice mail saying there would be a get together and would love for me to attend the following day at noon. No more details or at least I did not hear. The following day after completing all my morning activities, I realized it was almost noon. I did not want to let my friend down since she insisted I come. But, having been on the computer and phone since 6:30 in the am I was in no way ready to socialize. The dilemma was go all grungy an hope to get there on time or make effort to look presentable knowing full well I would be late. Realizing lunch was being held at a place usually considered a bit more upscale I opted for the latter – thinking this was an informal get together. I arrived late of course and entered a room full of well- dressed women seated at tables with fine china and cutlery. I nearly retreated but the host caught a glimpse of me and said: ” I am so glad you made it. let me show you to your seat which had my name inscribed on a card.” this was an etiquette luncheon! First faux pas – do not show up late! but, thank God at least I was presentable! after a very enjoyable lunch and fellowship which extended way longer than I hoped for (and could not leave early since I was already late too begin with) I had to sit getting stiffer and more antsy since I had another meeting to attend and the time for this to start was beginning to draw near. I am still not sure as far as etiquette if would have been better to not look good but be on time or arrive late looking fabulous! This week back to my slow crawl pace – till next adventure. In the meantime will try to catch up on some reading curled in my favorite diva couch!
Happy Week to everyone!
Art By Ross Webb
All rights reserved – Maria De Leon MD