On social activity and neurologic conditions:

Friends who understand the challenges of a progressive brain disease are the ones I continue to connect with. It’s hard to admit this as an independent kind of woman, first born and too stubborn to accept defeat, but I can no longer multi-task or juggle overlapping activities anymore. I need more time between each event. I might arrive stiff, or ready to roll. You never know. Wait… I never know either!

Symptoms of a progressive brain disease can turn suddenly crippling, then disappear. Family and friends who are willing to anticipate and accept my apparent and not so apparent (neurologic) complications are golden!

Some acquaintances and friends used to demand I join their routines, join them wherever they live, and “act normal for God’s sake!”
They were just unaware those of us with neurologic conditions aren’t capable of maintaining the same levels of activity. And normal? What IS that?

Navigating everyone’s schedules to plan within larger groups or loud crowded places also exhausts a PwP more quickly.

Living with YOPD, I’m forced to decline most invitations in order to conserve energy. Social engagements with limited transportation options or stringent scheduling must fall last on my list. A few relationships have not survived this reality, because demands surpassed capability. It not an unwillingness, it’s my new reality. When I push these limits, I collapse into overwhelm and fatigue.

It is our responsibility to communicate the ever-changing symptoms and side effects of our condition(s) clearly, because our people cannot read minds. If we need extra time, or closer parking, or special access, it’s on us to let them know. It’s unreasonable to expect anyone (even established caregivers) to anticipate all needs.

My kids know that my health changes each day- sometimes hourly. Like my closest friends, they know how to make the most of times when mom has lots of energy. We have fun, and forget about Parkinson’s as often as possible. Let’s talk about you, because I am really bored with PD discussions and explaining why one minute I am running and leaping and the next curled into a ball.