Monday, December 16, 2019

Plate Spinners

Managing lift with Parkinson's is lot like being a plate spinner at the circus. Early on in the course of our disease we just have a few disease management tasks because we have less problems and our meds work better. We still have energy and can pretty much handle the disease alone. As time goes on, like the plate spinner adding more plates, we add on more medications and have more drug interactions to manage. When symptoms get worse or new ones develop our lives get busier managing our disease and it's challenging to keep all our plates spinning. If we're not vigilant and can't keep up, plates wobble. If we're not sleeping, it's hard to exercise. If we are not exercising, our symptoms get worse. Over time. PD keeps adding problems and taking away energy. We need help to keep all our plates spinning, or else!

Thursday, December 5, 2019

Call Me Unreliable

Before I was diagnosed with Parkinson's I was punctual, if not early for every appointment or event. I didn't even know how to be fashionably late.

Having always been a bit of a spacecase, It wasn’t unusual for me to be a whole day early and on occasion, a whole week. But still on time. Wrong day. Right time.

Over the past 8 years or so of the 15 years I have knowingly been living with Parkinson's, my on-time performance has slid from being unreliable (often late), to being reliably late all the time. I am getting later and later by the day.

Some of it is due to medication fluctuations. A lot of it is due to being distracted. I am like a three-year-old who knows, step-by-step the tasks that need to be done to get ready to leave the house, but like a three year old, I get distracted by something that catches my attention, and although I know the clock is running, I suspend time in my mind.

For those of you that are over three years old and do not have Parkinson's, you can relate this example: When you are at your computer, and you are waiting for a page to load, and that that little swirling circle keeps going round and round, doesn’t it feel like that time is off the clock while you wait the page to load?

It’s kind of like that, but worse.

Parkinson's gives us lots of reasons to be late:

Moving too fast and uncontrolled with dyskinesia, makes us late because we drop a lot of things, lose a lot of things, smash into a lot of things, and forget a lot of things.

Moving very slowly, if at all, when meds are low, we get very little done. Rushing us causes a stress reaction that makes us freeze. We get stuck. Another time out.

If we get it all done, it takes us forever to walk to the car or get to our destination.

Of course there is always the last trip to the bathroom. Until the next last trip to the bathroom.

People are becoming increasingly frustrated with me.

But today I realised I am becoming increasingly frustrated with people. A lot of people. All the people who send me text messages.

Today I ran a tally of the time it takes for me to respond to text messages. People with Parkinson’s are on a different time clock than normal people.

From most people, who sent me a text, it takes about 10 seconds and they do this while simultaneously doing something else.

It takes me 3-5 minutes to respond to that text. I have to stop what I'm doing. I can't multitask. I have to find a comfortable place to sit. I have to prop my elbow up so I'm not bending  my neck way over while I text.

If I type with my fingers in my tiny little iPhone section, it takes me quite a while to type one line of text. I seem to be pressing the key to the left of the one I want.

I have to drink some water so my voice is not too scratchy for my voice recognition app to work. Sometimes those apps are even more time consuming because they make more mistakes than typing.

I have to reread and edit before I hit send. I have so often sent such erroneous text messages, because my PD fingers hit send send button before im ready, that I mostly now write my text in notepad first. A short text takes me a good 3 to 4 minutes.  I have to add another minute for getting out of the chair and remembering what it was I was doing.

Then I get started, another text! Repeat cycle.

This morning between the hours of 9 AM and 3 PM I had lost an hour and 3/4.

No wonder I get behind so much every day and no wonder I’m late all the time.

I’m done texting. I could use that time for course stabilization exercises. Hydrating. Taking a shower. Calling a friend. Knocking something off my to do list.

I can’t really control any of that, but I can control the time I spent texting.

So, please be on notice that if you need me, call me or email me. If you text I’ll respond later, usually in the evening when I’m wiped out and sitting down for awhile.

In the event of an emergency, call 911.