My Mornings Are Broken Due to Parkinson’s Disease
For columnist Dr. C, morning brings distressing motor and nonmotor symptoms
When Cat Stevens sang “Morning has broken,” the lyrics were referring to the rejuvenation of the sunrise. That doesn’t happen for me as someone with Parkinson’s disease.
It starts with what I call the 4 a.m. four-alarm wake-up call. It’s head-to-toe body pain, sweating, and an erection that demands something be done about it. Then comes the histamine flicker, and I’m sneezing and dripping like a leaky faucet. This is followed by vertigo, nausea, and back and neck pain with slowed, clumsy movement. That’s not a morning rejuvenation.
I face this chaotic morning with a cup of hot chocolate. Between sips of velvety cocoa, my thoughts are tossed on tumultuous seas, flitting from one wave to the next. Everything needs to be addressed now! Find the cats (we have three) to be sure everyone’s needs are met. Weed the garden, help Mrs. Dr. C with her projects, write a column, work on the next book, and practice the Parkinson’s self-management toolkit.
My brain has a cacophony of noise, but the chronic, physical distress also is yelling at me. If it’s a bad morning, my body cannot function in synchronicity with my brain, and movements are both slow and painful.
I surmise that, given my intense off-period symptoms, I’m not particularly objective in the morning. Mood fluctuations are reported in up to two-thirds of Parkinson’s patients who experience motor fluctuations, as noted in a 2001 article published in the Journal of Neuropsychiatry and Clinical Neurosciences. According to the article’s abstract, “Most researchers indicate that mood fluctuations tend to be associated with motor fluctuations in that patients experience decreased mood when ‘off’ (immobile) and elevated mood when ‘on’ (mobile).”
Mornings start with some variation on these events. What’s worse, I can waste the day spinning, flitting, and grasping in this busy physical and mental state. In fact, it’s amazingly easy. I just give up and let the disease take over, laying aside my self-management strategies. But letting the disease take over is a fuse lit on a potential bonfire. I want to avoid that, so I take time to relax every morning.
My relaxed mental state is, to a degree, a normal, default brain state. Unfortunately, my default brain is malfunctioning with Parkinson’s. I find that the more I use this dysfunctional mental state, the worse it gets.
So the question I face every morning is, “Do I want the rest of my day to be like this?”
You would think the answer would be obvious, but because of the culturally accepted and endorsed Parkinson’s “sick role” (a role that identifies attributes of living with a chronic illness), we haven’t made much progress on Parkinson’s self-management. Parkinson’s is often seen as a horrible “death sentence.” Self-management seeks to steer away from this sick role and replace it with possibility based in science and hard work.
Mrs. Dr. C will tell you that when I (or we) can’t follow the calm morning rituals, then it’s difficult to get back on track the rest of the day. It’s more difficult to use the self-management tools once the cascade has begun. It’s also rewarding to practice a set of tools that help steer a bad morning into a tolerable day I can share with my partner.
A scoping review published this month in the Journal of Medical Internet Research focused on Parkinson’s self-management. A scoping review allows researchers to assess emerging evidence and propose a first step in research development.
The review looks at current applications of self-management tools on motor issues. (Unfortunately, nonmotor symptoms weren’t included.) Researchers conclude:
“This scoping review identified a wide variety of interventions designed to support various aspects of self-management for people with Parkinson disease. The studies all generally reported positive results, and although the strength of the evidence varied, it suggests that self-management interventions are promising for improving the care and outcomes of people with Parkinson disease.”
The goal of a future self-management toolkit would be, as the authors state, to eventually teach self-management strategies to patients. We need to expand our efforts to include nonmotor issues. But first, we need a beginning toolkit to test.
I’m testing this one on myself. My first step is to dedicate myself to practicing my Parkinson’s self-management toolkit every morning so I don’t have to forfeit the rest of the day. It should be first on my morning to-do list.
Granted, it’s been difficult to make self-management happen consistently. I have so many obstacles that hamper my making Parkinson’s self-management a daily ritual.
Mornings are broken, but I can change the day with self-management tools and the gains I make with insight meditation. I can even the playing field. I can steer my Parkinson’s so that I’m starting my day in a better frame of mind and body.
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
Jennifer Sylvia
I haven't been able to focus long enough to read or comment on anything helpful regarding parkinsons but this article has me in tears because I can completely relate. I get so tired of the focus on my physical symptoms by my nuerologist and my pcp etc. nobody seems to understand the hardest parts are invisible and when I reach out and try to express anything other than my tremors or falls I am told to tell my therapist, I cant put into words what Im feeling but I am thankful for this article.
Dr. C.
Hello ~ I'm seeing that other PD folks have problems describing or having recognition by providers for non-motor symptoms. I think this is a common but important problem that isn't being addressed adequately. To get a better handle on the nature of non-motor symptoms, and what we can do about them, I wrote the two books. The second book, "Possibilities with Parkinson's: Developing a Self-Management Toolkit" should be available before the end of the year. The first book "Possibilities with Parkinson's: A Fresh Look" is available from Amazon or Barnes and Noble. I would hope that both of these will supply some more rehabilitation strategies to cover the wide range of non-motor symptoms that we all experience. We've had readers suggest that they bought the book to help communicate their Parkinson's experience to their providers.
Dr. C.
Sheila Fallows
Thank you Dr C for letting us know about all your morning symptoms. It is so hard when Parkinson's symptoms are not the same (or even similar) for all PD sufferers. My husband has frequent bouts of extremely distressing stomach upsets usually coupled with what we call his "hot head syndrome" whereby his face and head feel extremely hot to him although they don't look hot or feel hot to touch. More often now he also feels twitchy and trembly along with the "hot head" and stomach churning. The only relief he can get is to sit in a very cold room with the air conditioner on and a fan blowing directly onto his face. He may also have a small hand-held fan as well. It can be hours before he starts to feel better. He has seen three specialist physicians in addition to his Parkinson's Specialist and has also tried an alternative GP but so far no gains have been made. These symptoms remain inexplicable and very hard to handle. Has anybody else experienced these symptoms and if so have you found an effective way to deal with them?
Mark Caldwell
I don’t have true “off times” with my Parkinson’s disease, at least not yet. My mornings are fairly quiet and I too often forget to take my morning dose of carbidopa/levodopa. My wife is recovering from a broken hip, (fractured femeral neck), so our morning love making is now restricted to once or twice a week now. We are both in our late 70’s, but still pretty active. I am working on building a shop behind the house, which includes a she-shed an one end. It now takes me three times longer to do anything, such as it took me a week to wire the shop, and two days to wire her she-shed. I used to be able to do that in a couple of days. I am a retired pharmacist, but have always loved to build things and make things. I always end up doing everything the hard way because that’s more fun than doing the plain old simple way. My mood is always better when I have been busy rather than just sitting around. I guess I still have my “ADHD” going for me. I guess you would call this my self-management tools. I often get so absorbed in my play, that I forget to take my midday doses, also. I really enjoy your columns, as you put into words my feelings and what is going on with my disease, that I have my wife read them, hoping she will understand a little better what I am going through.
Again, thanks for being there for me and all of us Parkies.
Best regards,
Mark
MIke
Dr. C.
Of course Cat Stevens has always been one of my favorite artists….maybe we are dating ourselves, certainly our condition does that. You Sir are an inspiration to so many…your Self Management Toolkit is critical to my well being. I think that some mornings it is not unexpected that you feel challenges but you have the tools to press on. In fact your gift is that you have named the tools for your followers. Now is the time for Brain Rewiring just pick up your book, I find Page 31, Video Chess is a good way to Reframe. Next Mindful movement, I find LSVT is a great way to stretch out. Then you can walk in your Garden.
I think the way you work out of bad days is just your demonstration of how it works ‘One day at a Time’ ,Blessings, Mike
JEAN KITTELSON
THANK YOU THANK YOU DR.C and MRS. DR.C also. I can especially relate to JENNIFER.
I have DBS (2011) HAVE HAD pd for 15 years.
JEAN KITTELSON
I too have a HOT HEAD (INFLAMATION) AND A CHURNING STOMACH , so don't feel alone.