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.
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Comments
Kathleen L. Karafonda
Amazing!!! I just stopped morning doses of c-l and feel so much better! I had never heard of anyone doing this until your article...
Many many thanks!
John Citron
I've been going through this myself and can relate. In late 2005, my first neurologist tried Sinemet as an experiment at my insistence. He diagnosed Focal Dystonia after a 19-minute visit then insisted I visit his Botox clinic. A friend of mine noticed I had other symptoms that didn't add up because his wife had PD and mine were similar. My grandfather also had PD as well and this doctor's diagnosis didn't make sense. He said it because I play the piano one hour per day! Upon taking the very first dose, I felt 100% better. Not kidding! My journey was set.
I ended up seeing another neurologist due to some other issues with the first one and I've been with the second doctor ever since. In 2012 she gave me a "possible Parkinson Disease with dystonia" diagnosis since the Sinemet, Amantadine and worked well. After more visits, she nailed it down as Parkinson Disease in 2014. I have more details about this in another article you posted.
I will say that stress will play a part 100% in your medication management. In 2012 to 2016 we did some adjustments to my medication. By this time, I was taking upwards of 8x 25/100 Sinemet pd, plus 3x Amantadine, and a 50/100 CR at night! I felt no side-effects from the medication then suddenly I had hallucinations. I was seeing bugs, hearing voices, and seeing shapeshifters at night! We cut things back, but the severe nausea hit me. I couldn't get the balance right. We tried Azilect plus reduced Sinemet amounts, but that caused me to pass out at work and it was really expensive, so we switched to Selegiline and a few Sinemet. I felt okay when I first took them, then vomiting and nausea hit to be followed by hallucinations again.
I ended up quitting cold turkey and did what you are doing. I muscled through my stiffness and rigidity and just dealt with it until it got too bad, and I caved and ended up on Baclofen and now 25/100 Sinemet again, but at a reduced rate in 2021. So far this is working.
During this period, I was under constant severe stress. Up until 2012, I was working full-time, and going to school at night as I pursued a BA in IT at night. That very stressful tech support job had me supporting nearly 700 people both in-house, and in the field, plus training and managing a new team of coworkers. I was closing 350 tickets a month and still not keeping up with the workload. This was in addition to my other tasks I had to do daily.
At home, I was dealing with a family member with drug and alcohol addiction, and at the same time my mother was terminally ill and fading away in front of me. This was in addition to supporting the household and everything else that goes along with that, plus my night classes I wanted to finish off and of course do my very best in.
In December 2018 after my mother passed away and the drug addicted family member ended her life before, I relaxed after all was said and done. I felt the steam go out of me and my Parkinson Disease symptoms, while there, aren't as pronounced now. I have some new ones, like a stiff left shoulder and biceps, but nothing like I was dealing with. Occasionally, I'll do dumb things and get confused, but not like I did before. The hallucinations are gone now and so is the nausea even though I'm back on the Sinemet. Believe me, I was a bit on the edgy side for the first month as I titrated back up.
It didn't dawn on me until a few months ago what was going on. I even mentioned this to my neurologist recently.
The stress was pushing me beyond what neither the medication nor I could control. With this stress, I noticed that my cognitive levels were fading, and it was taking me more time to think, and my executive functions weren't as sharp. I noticed too I had a difficult time spitting out what I wanted to say. I knew what I wanted to say but could not. My organizational skills too were shot, and I couldn't keep anything straight for squat. These skills are most important as a computer technician and network administrator. I had to be on the ball at all times and keep up with the daily tasks, and articulate not only to other techs, but also management. In this job, you never rest and always need to stay awake so to speak. My balance was off, and I nearly fell down some stairs at work. I was seen by a C-level admin and that ended my career along with my manager getting ready to fire me for not keeping up the pace. I found too that my motor-symptoms were getting worse, thus the increase in medication to the levels I was on. We were heading into a big loop going nowhere.
In summary, stress kills. If you can eliminate stress as much as you can from your life, you'll find that you can do very well on managing your symptoms on medication or not. In 2021 I developed increased dystonia in my feet and hands. My hands were so tight, I was bruising my palms. Combine that with increased tremors, I never had before, and increasing rigidity, I knew what was needed. She and I worked out a small dose of Sinemet 25/100 3x pd plus Baclofen 3x pd. This schedule has been my magic combination for now.
Ellie Schwarz
What is the Baclofen.? Is this a well known drug accessible to any person who is interested?
Reading all the recommendations makes me wonder how to handle this new information.