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.
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Comments
Nick Tavare
This is my major issue with Parkinson’s. I do a fair amount of walking which helps generally, but seems to add to the fatigue. Even if I go to bed early and sleep well, it seems my ‘battery’ has not been charged overnight. I start the day with no energy and it even decreases during the day!
A magic potion would be good. Anyone have one?
Mary Farnsworth
Something that helps me sleep better is Delta 8 CBD gummies. But you have to find a reputable company to buy from.
Lisa Schmidt
My husband also used to fall asleep when ever he was sitting down. He even fell asleep while talking to the doctor and while sitting at the table talking to me. We have done a couple of things that seems to have greatly improved his alertness level. First of all he had a sleep study several years ago that determined he had sleep apnea. ( not so much snoring but long breathing pauses)He tried using a C-Pap but was not able to tolerate it. We finally had the Inspire surgery and that has helped a lot. It is a new implantable device that helps to move the tongue out of the way so he is able breath easier. He also takes 10 mg of Melatonin at night to help reduce REM sleep disorder and he now seems to have a more restful sleep. Lastly, he has bio identical testosterone pellets implanted every six months, which seem to give him more energy. He now only takes an occasional nap during the day or when lying down at night to watch some tv shows. I hope this is helpful and some of these ideas will help you!
Mary Farnsworth
Fatigue is always worse in the evenings for me. I was diagnosed in January 23 and I have suffered with Parkinson for almost a year before I found a Doctor who actually said I have Parkinson. I have some mornings where I doing great then by 3 or 4 pm I'm done in especially if I went grocery shopping. I drag around the house sometimes not cooking, and I use to enjoy it. Mentally the Fatigue part of this whole thing is the worst! I do not want to fall into a depression over it but oh my gosh it's getting harder and harder to find the strength to fight it.
Mike
Jamie,
Fatigue is something that plagues many. That it is troublesome for many in our community is a pain. It would be nice if there were a set of symptoms that were Common and always the same for all folks with the diagnosis. That would be wishful thinking! I just hope that your son can make discoveries that will impact your husband and others as well. Maybe the ‘potion’ that Nick suggests. Blessings, Mike
Mark Brody
I think there is a frequently missed point about fatigue and Parkinson’s. Not only is fatigue a part of Parkinson’s, but spending one’s day fighting the daily symptoms of Parkinson’s adds that fatigue. Having to always to be conscious of and making the extra effort to lift one’s legs and feet high enough not to trip, to swing one’s arm when walking, to project one’s voice when talking, to cope with the random pains and to pay more careful attention to one’s surroundings and where one is going, all can wear one down as the day progresses and add to the fatigue.
Jamie Askari
I agree completely. Fatigue is an issue for individuals with Parkinson's and manifests in many different ways. Thank you for sharing your perspective; very helpful!