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What It's Like To Live With the Unpredictability of Parkinson's

Days with chronic illness can be unpredictable. Days with Parkinson’s Disease (PD) can be just as unique and uncertain as the disease itself. In addition to the normal uncertainty of everyday life that we all must face, you also have the added “fun” of never quite knowing how you will feel. Most days, my treatment manages PD very well.  Sometimes, however, a conversation similar to this occurs:

Care Partner/Friend: You doing okay today? You seem to be struggling a little?

Me: I’m okay, just feeling a little ‘off’.

Care Partner/Friend: Why are you having a rough day? Something happen?

Me: I don’t know. It is just one of those ‘off’ days.

One of the most frustrating aspects of Parkinson’s Disease is the uncertainty. It is often called the “snowflake disease” because each person with PD has a different experience. More than just dealing with tremors, people affected by PD can exhibit a range of symptoms including: anxiety, pain, cognitive issues, fatigue, sleep disorders, loss of smell, stiffness, slow movement, speech changes, and a range of other symptoms both seen and unseen by others. I am never quite sure what a day will hold or how I will feel, which makes planning and participating in the normal, everyday activities challenging.

Sometimes you can be given medicine that helps you regain so much of what this disease has taken. For me, it occured after just a couple of days taking it, and I felt almost like my old self again. Able to move better, tremors controlled, stiffness gone, walking and speaking improved – I felt great. But, just as each person’s experience living with PD is different, so too, can daily differences in treatment effectiveness manifest themselves differently from person to person.

The medication was immediately effective and helped me manage the symptoms of my PD. However, there was one catch: I had to stick to a regiment of pills, taken throughout the day, and over time, these doses would most likely need to be increased and adjusted because the medication would gradually lose its effectiveness. In addition to this, how well the medication managed my PD symptoms varied from day to day. Sometimes it would not work, and other times it wouldn’t work as well or as long. But when would these times come? How would I know how I would feel from day to day? It turns out these times would be as unpredictable as the disease itself.

I refer to these times when my symptoms aren’t as well-managed as “off times” or “off periods.” Off times can occur for a multitude of reasons:

  • Missing a dose of your medication 
  • Taking a dose too late
  • Taking medication with certain foods
  • Fatigue
  • Stress
  • How long you’ve had PD
  • Or for some reason you are not even aware of

These off times are unpredictable, can come on with little or no warning, and their unexpected nature can be very frustrating for those battling an already unpredictable disease. In addition to this, these off times can manifest in a multitude of physical, mental, and emotional ways from tremors, to stiffness, to brain fog, to balance and speech issues. Just like every person who has PD has a different combination of symptoms, off times manifest differently in different people, and each time, it could be a little different. 

Honestly, I was not even familiar with off periods when I was first diagnosed and could not understand why I was feeling better some days and not others. This led to some frustration, anxiety, and confusion, and I wish I had known to look out for off times and their causes sooner. Knowing about this definitely would have helped me understand and prepare better for this journey.

These off periods are not just hard for the patients; they can also be challenging for care partners and those surrounding us. Since symptoms often occur unexpectedly, individuals with PD might not even know from minute to minute what they can and cannot do. Those surrounding this person can be just as frustrated as those battling this disease, and it can be hard for them to understand why you can’t do an activity now that you could earlier in the day.

For each of us, it is important to educate and  advocate for ourselves. You can start by keeping a log of what your day is like and note when these off periods occur. Talk to your doctor, and work with them to find an adjustment or dose that will help limit these times when you are more symptomatic. Also, give yourself the freedom and grace to stop, rest, and take a break while you give your body and the medication time to “catch up”.  

Yes, medication can be a wonder and a life-line that has helped us live better with this very challenging and unpredictable condition. Unfortunately, just like the symptoms of this disease, it is impossible to totally eliminate off times, but with the right communication and treatment, you may just be able to negate or greatly reduce these frustrating periods.