Parkinson’s fatigue makes my husband’s days difficult
Parkinson's fatigue goes well beyond being tired
One of the most challenging nonmotor symptoms of Parkinson’s disease is fatigue. When I think about the word, a poor night’s sleep comes to mind, resulting in a day of being tired afterward. Or fatigue might result from a long week at work or a stressful life event.
For my husband, Arman, who was diagnosed with early-onset Parkinson’s disease in 2009, and many other patients, fatigue is an entirely different ballgame. Parkinson’s-related fatigue is the type of exhaustion that makes it feel impossible to move, as if there is no energy at all.
Parkinson’s patients experience a deep physical weariness that is different from sleepiness. The kicker is that the majority of the medications for Parkinson’s have side effects that include fatigue.
Arman has always loved watching things on TV, including the news, sports, and movies. There is a significant amount of downtime with this disease, particularly while waiting for medications to start doing their job. Watching TV has helped to fill the spaces in time during this waiting game.
We also love to watch movies as a family when the kids are home. And we enjoy binge-watching the many different programs now available on streaming services. Arman is an equal-opportunity viewer and enjoys almost every type of genre.
But the moment we sit down to watch a TV series or movie, it’s a fight — not a boxing match or a “Rocky” movie, but rather a fight between Arman and fatigue. It doesn’t happen only when he’s sitting in the comfort of his recliner, either. He battles fatigue all day long. Although he may have a restful night’s sleep, the fight starts during breakfast and continues all day. Keeping his head upright and staying awake and alert is a constant struggle, and Parkinson’s seems to win every time.
Searching for relief
My son loves to research medical topics. He has toyed around with the idea of becoming a physician and is pursuing a degree in neuroscience in addition to finance. When he arrived home from college for vacation recently, it troubled him to see how much Arman’s Parkinson’s fatigue had progressed. My son immediately went to work to find a way to combat it. He found a medication that could possibly help, and Arman asked his neurologist about it.
Our neurologist thought the medicine would be good to try, so he prescribed it. After a few weeks of fighting with our insurance company to cover it, we finally received it.
As I have said many times, you truly need to be your own advocate when it comes to medical care. You and your family are the real experts, and your specialists are your partners on your journey. We have found that it is vital to communicate all of your symptoms of your version of Parkinson’s to your medical team. This is the only way that they can effectively treat you.
Unfortunately, for Arman, the battle with fatigue continues, but we will not give up the fight to combat it.
Note: Parkinson’s News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Parkinson’s News Today or its parent company, BioNews, and are intended to spark discussion about issues pertaining to Parkinson’s disease.