Skip to main content

Seize the Minute

 Although I never wanted Parkinson's, I am thankful for some of the things it has taught me. 



I have learned to enjoy everyday, mundane activities.  Those things in everyone's day that they don't think about, often stand out to me.    I am able to rise easily  from a chair,  do laundry and cook dinner.  I can drive to the grocery store when needed.  Although household chores are not fun, I find joy in the fact that I can do them.  I know all too well now that not everyone can do these things.

I have learned to take advantage of the times when I feel my best.  Parkinson's can be so unpredictable throughout the day that there are times when simple tasks become hard.  You might find me chopping vegetables for dinner in the middle of the morning because I am feeling good in the morning and never know what the afternoon will bring.  (It often brings tremors and fatigue).  If it ends up being a good afternoon, then dinner is already prepped and  I have extra time to enjoy something else.

I am learning to be a planner. I  set early deadlines for myself.  This can be puzzling to others..."why are you working on that now?  You've got three weeks to get it done."  I don't know how I am going to feel in three weeks, or even one week or even in one hour so if I can, I seize the moment and try to squeeze in as much as I can while the going is good.

I have learned to be more patient with myself.  When the off times hit and I can't type as fast as I want or get up the energy to clean the house, I allow myself the time to rest (something I have never been good at). I try not to feel guilty when someone else picks up the slack (usually this falls to my wonderful hubby).  I try to wait patiently for my meds to kick in and for some sense of normalcy to return so that I can get back to life.

I have learned that I am strong. Adversity can knock you down and it can make you stronger.  PD is a big adversity.  It does knock me down sometimes but I get back up.  Although I know that my future is likely full of knock downs, I pray that it is also full of getting back up.

Comments

Popular posts from this blog

Self Advocacy in a World of Red Tape

In a perfect world, a person with an illness or a disability would easily be able to get needed services and treatments. We do not live in a perfect world and often the healthcare system is littered with red tape. Patients or their care partners are tasked with jumping through hoops, waiting countless hours on hold with pharmacies or insurance companies, and waiting months to see specialists. I wish I had the solution to this problem but unfortunately, I only see it getting worse. You need to be an advocate for yourself.   Here’s what has helped me: ·        Be persistent, be firm and be polite.  ·        Call often.  A squeaky wheel gets attention. ·        Stay on hold.  It is frustrating but sometimes it is the only way. ·        If someone doesn’t have the answer you need, ask to speak with someone who does.  ·   ...

Medication Pumps for the Trend Setters

I jest.  You have to keep a sense of humor when you are living with a condition like Parkinson's.  I am actually very thankful for new treatments even if they aren't pink and pretty.

Getting Pumped!

  I finally got my Vyalev pump. Like anything else with Parkinson's, the road has been bumpy. I started in the clinical trial about four years ago. That only lasted a month or so because of the skin bruising, swelling and medication pooling. At the end of last year, the FDA approved the pump and recently Medicare started covering it. I was anxious to try again. So now I am on day 6 and here's the good, the bad and the ugly: I am having much less off time. I am still in the phase of getting my rate adjusted and anticipate that this will improve even more. On occasion, I still use my Inbrija to get me over a rough patch but I'm not using it much and I anticipate I will need to continue to have it on hand in the future because life with PD, well, life in general, is unpredictable. I have had some trouble with the medication pooling and my skin bruising and looking bumpy and swollen. Thankfully, there is an online community of wonderful people sharing tips and tricks for dealin...