A Look Back at the Management of Dr. C’s Parkinson’s Symptoms
“Good morning, Mrs. Dr. C,” says Neo, Dr. C’s imaginary talking neocortex and a frequent guest of this column. “Are you excited about the new year?”
“I think so, but last year was a challenge for Dr. C. and me,” Mrs. Dr. C replies.
“How so?” Neo asks. “Isn’t Dr. C trying to use his ‘TBM’ for self-management of his Parkinson’s symptoms? I’m not sure I really understand how TBM works if you’re still struggling.” (“TBM” is Dr. C’s three-tiered strategy of threshold management, brain rewiring, and mindful movement.)
Mrs. Dr. C reaches for her morning coffee with a sigh and settles into a chair.
“We’ve both been aware of the progression of the Parkinson’s symptoms,” she says. “Dr. C is now seven years out from the official diagnosis. We both know the disease presented itself years before that. Dr. C has been able to manage most of the Parkinson’s symptoms, but he recently had to stop treatment with levodopa, which no longer offered relief and had begun to present a range of adverse effects. According to one review, after five years of taking the medication, most Parkinson’s patients suffer fluctuations, dyskinesias, or toxicity. Facing disease progression without the benefits of levodopa, Dr. C is applying his training to manage the worst of times.”
“So, the TBM self-management concept is one that comes from a rehabilitation viewpoint?” Neo asks.
Mrs. Dr. C stirs her morning brew and responds, “Yes, rehab doesn’t mean that everything is great again. It means both of us are managing it better. TBM is all about threshold management, which is how one handles stress, brain rewiring to develop new pathways around the damaged ones, and mindful movements, which protect the body from falling or choking. TBM requires dedication, persistence, and lots of time to practice. I take care of many household tasks to give him that time. With the levodopa not working, well, he needs it.”
“Levodopa is the most effective symptomatic treatment of Parkinson’s disease,” she continues. “However, after an initial period of dramatic benefit, limitations become apparent, including motor symptoms such as postural abnormalities, freezing episodes, and speech impairment, nonmotor signs like autonomic dysfunction, mood, and cognitive impairment, or drug-related side effects like psychosis, motor fluctuations, and dyskinesias. Some medical providers realize that strategies should ideally be developed to prevent them.”
“That sounds like a gloomy picture,” Neo says, frowning. “Do you think TBM will help?”
“I think so,” Mrs. Dr. C says. “There are going to be alternative therapies that aren’t drug-related. For instance, we know that added stress can lead to emotional swings. If we can try to avoid stress or at least manage his reaction to stress, then that is the ‘T’ in threshold management. This is used every day to help maintain homeostasis, keeping stress in check.”
“And what about brain rewiring?” Neo asks.
“That isn’t something I can do for Dr. C, but I can encourage him. Important to this is pausing before acting habitually, followed by reacting to the situation in a new way. Part of that is mindful play, his enjoyment of challenging online games. Another part is being honest with each other about symptoms,” Mrs. Dr. C says.
“And the ‘M?’” Neo asks.
“Well, that’s mindful movement. Again, I can’t do it for him, but I can clear the pathways in the house to be obstacle-free. I can give him extra time to move from one place to another. I can suggest, without being a nag, that he not talk while eating.”
Neo pauses, then asks, “So, does everyone have these progressive Parkinson’s symptoms like Dr. C?”
“Parkinson’s impacts people in different ways. Not everyone will experience all the Parkinson’s symptoms. They won’t experience them in quite the same order or at the same intensity, either,” she says. “It’s complicated and seems to occur across a spectrum with no easy answer.”
“What does the future hold for Dr. C?” Neo asks, adding that he is hoping for the best.
“I like what actor Michael J. Fox said,” Mrs. Dr. C replies. “He said, ‘Who am I to tell people to cheer up? Who am I to tell people it’s gonna be OK? Is that just something I say? Or is that something I believe? If it’s something I believe, is it something I can live? And if I can live it, is it fair for me to ask others or suggest to others, or prescribe that others look at it the same way?’”
Mrs. Dr. C hugs Neo. “I know Dr. C wants to share his story, including the good times and the not-so-good ones,” she says. “His future will entail continuing to reach out. How we manage ‘our’ Parkinson’s might make a difference for someone else with it or with any other chronic illness. We can just keep showing up to follow the quest of living well and sharing the journey.”
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.