How to Compensate When We Lose the Moon
In life, people with Parkinson's find that they have several choices to deal with their oncoming issues. Here, they and I must compensate (knowingly and naturally, and through sadness and anger).
All three are natural occurrences in our lives.
For instance, I want to go to a Bastille Day event in central Philly, but it's 90° out now. Taylor Swift is playing the Enormodome in Philadelphia. What do I do?
- Brave the traffic, carry lots of extra water, try to find shade, and have a good time.
- Skip that event and feel down about what I can't do.
- Find other fun things to do, which won't make me feel overwhelmed in expressway traffic (even as a passenger), as well as something in cooler temps (since heat is a major issue for people with Parkinson's).
Answer #1 is too much risk for too little reward. Answer #2 happens. It's true that when we lose abilities, we get bummed out. However, answer #3 is our best alternative, though not always easiest to attain.
Thus, learning our limitations and symptoms that can be aggravated allows us to find new hobbies and alternatives in less dangerous conditions.
Victor Hugo therapy
In my life, I have already found that I am changing my interests. Life is less about outdoor pursuits than indoor ones (for now). In fact, I've found that I enjoy going to see many musicals with my wife. This includes our recent trip to see The Hunchback of Notre Dame at our local Lancaster, Pennsylvaniatheater. I was never a musical guy before, but now...
Noticing our changes
When it's hot, I find that the air conditioning keeps me cool. That's obvious.
Nevertheless, I also notice that I:
- walk as if I have a cement boot on my left foot.
- sway widely, bump into people, and limit walks in shops with breakables.
- get really tired in the afternoons.
- have an unpredictable sleep schedule, which makes waking up a pain.
- occasionally wake up nauseous.
- have arm snappy bouts of dyskinesia.
- feel like my arm is getting shakier
- feel more rigid than before.
- sense dystonia's arrival in my right foot.
- lean on the side of the car for support while getting out.
- avoid bright lights.
- rip off my sleep apnea mask with no recollection of having done so.
Compensation for our changes
- avoid crowds and narrow aisles.
- have someone steer me through crowds and aisles
- push myself to stay on a normal sleep schedule, if possible.
- stay active
- be OK with assistance and playing-field levelers
- find new hobbies
- wear sunglasses
- be the passenger
- switch or stop meds/procedures with my doctor's permission
- be angry and sad in constructive ways (hitting a punching bag, journaling, screaming at inanimate objects as opposed to others, etc.)
- That super cool voice button on Messenger and text messaging that lets me compensate by talking instead of doing the one finger type (i.e. how to tell when I'm on a computer or my smartphone).
Apollo 13 blues
In the movie Apollo 13, Tom Hanks plays Jim Lovell, a real-life astronaut who has to get his ship down from space after a malfunction. Here, he realizes he has lost his chance to stand on the moon. It's a very human reaction in a very extreme situation. It's not that different from one scene later in the movie where all three astronauts tear off their sensors because they're sick of being monitored 24/7.
The scientists looking at them know their body functions better than the astronauts do. However, they know nothing of their emotions. The commander in Houston gets this and lets them vent. In this very personal and positive way, he gives them time to vent. Nothing in their vital signs will change the fact that they have to descend from outer space and survive re-entry. Everything is still going to be there. The only question is whether they land safely.
Randall "Tex" Cobb blues
In a perfect world, we have a good relationship with our doctors. However, there is a point where we've had all we can stand with constant medical treatment. We know that Parkinson's is a fine-tuned disease with one mission. We're making peace with that as each stage hits home. We're stoic and mean to it when we can be. Nevertheless, sometimes we get what I call the "Randall "Tex" Cobb blues".
Cobb was a boxer who took 15 rounds of punishment from Larry Holmes, but he never went down. His verdict came, but he fought back with pride. We want to be that person, but it's not always easy to keep playing it tough, let alone following doctor's orders.
Hopefully, our doctors understand this personal need when they request new tests. Ideally, they understand when we're sick of being diagnosed with co-morbid diagnoses. Additionally, we want to feel like a distinct person and not the next number in the line. Realistically, we demand they know how to deal with PD. Professionally, we hope they know when to stop adding meds on top of meds, especially ones that affect our cognitive functions, create compulsions, and trigger scary side effects.
In the end
Parkies need to understand their changes so we can be okay with how we compensate for them. Professionals need to help us compensate for issues, as well as to be okay with how we compensate. We want treatment, and we're okay being a patient, as long as medical treatments keep us human.
Do you or a loved one use smartphone apps to help with PD management?