HOLDING JOHN
A place for updates, love, and prayers for our dear friend, John.
Why an Artistic Rendering?You may be wondering why we've chosen an artistic rendering of John rather than a photograph. The answer is simple: protection. We live in a world where the most vulnerable are too often targeted. John lives just five miles from one of the most dangerous areas in his state. As an Asian man, he faces an additional, very real layer of risk. We chose this artwork to shield his identity.Yeah, it's a thing...
The Weight of a Broken HeartThose who know John know he is one of the good ones. He is the person who bends over backwards to help, the one who would sacrifice his own sleep or skip a meal just to fix a problem for someone else. He has a massive, generous heart.Today, that heart is breaking.If you haven't heard, John has Parkinson's Disease. His father passed away from it on December 8, 2022. When your best friend loses their dad to this cruel disease, it's not a date you can easily forget. Since then, John has lost several cousins and an aunt. The reality of family mortality is a grim, relentless reminder of how fragile life truly is.
The Daily BattleParkinson's slowly robs John of his ability to function. The daily toll is immense:• Debilitating Fatigue: The disease drains his energy, causing him to sleep for large portions of the day.• Unpredictable Balance: His balance is unstable. In a heartbreaking act of love, he has distanced himself from his mother so he doesn't accidentally hurt her. His logic is simple: If someone is going to get hurt, it's better for one person to suffer than two.• Swallowing Difficulties: Food, liquids, and pills often go down the wrong way. Eating has become a terrifying chore.• Temperature Regulation: His body can no longer regulate its own temperature. He suffered heat illnesses this summer, and now faces the torture of forcing himself to be cold to prevent overheating.The Fog of Parkinson'sJohn has always had a mind that raced—a trait he jokes about as his "ADHD brain." Before Parkinson's, he could have a dozen thoughts running at once and still function. Now, the Parkinson's drains his energy, and the thoughts have nowhere to go. He walks into a room with a clear purpose and by the time he gets there, the reason is gone. He has to use logic to find his way back. This is not forgetfulness; it is the disease disrupting his brain's executive function.
Why John Has Chosen Not to Treat His Parkinson'sJohn is refusing treatment for his Parkinson's. To understand why, you have to understand what he has learned.John discovered that the "cure" being developed only works if administered before symptoms appear. Once the diagnosis is given, that window is closed. The treatments available are not cures. They are temporary fixes that become less effective over time, demanding more money while the disease marches on.John watched his father die from Parkinson's. He saw what the treatments did to his parents' savings. He knows public assistance doesn't arrive until a person has lost everything. He refuses to let his mother spend her final years on a fixed income because his treatment drained what little they have left.From his perspective, this is not giving up. It is giving. He has set his affairs in order, and he has made his choice legally binding. He is trying to give a better life to the people he loves.
A Personal PleaI understand where John is coming from. I don't agree with him, but I understand. And I refuse to give up on him.First: If you know of alternative treatments—vitamins, herbs, folk remedies, anything that might help manage his symptoms without financial devastation—please share it.Second: Please share this page with everyone you know who prays. John needs a chorus of voices. He needs to know he is not alone.Even if he doesn't have the energy to read what you write, I will read every word to him.
A Song of HopeDespite his doubts, I recently asked John to write a song. This might open the door for him to help his mom, even when he is no longer around. Who knows? Maybe if it goes huge, he might even reconsider his current ideas of handling his disability. If you would like to listen to his music or support his family by purchasing the song, please visit his music page.Shining the Light