Living Better with Parkinson’s

“Life is a journey, not a destination. Happiness is not “there” but here, not “tomorrow” but today.” Sidney Greenberg

“The moment in between what you once were, and who you are now becoming, is where the dance of life really takes place.” Barbara De Angelis

Précis: This post reminds the Person (People)-with-Parkinson’s disease (PwP) that you are neither crazy nor lazy; just remember that you have Parkinson’s. This post is also meant to help the Care Partner better sustain and manage life with the PwP with some (relatively) simple suggestions.

“Remember, Life is a journey, not a destination.” Bruce Lee

Dopamine: When you think about it, Parkinson’s has many issues and factors. However, the most straightforward conclusion is that it is all about dopamine levels and managing life after that. The following schematic is entitled “The Complex Role of Dopamine in Parkinson’s.” I offer only the drawing itself, with no detailed explanation.

A new blog post will appear soon describing the material in the above schematic. Usually, I would explain the science behind the drawing and then try to tie together the behavioral-cognitive-personality changes most affected by those physiological changes. Instead, I am reversing these tasks and would like to describe potential solutions to typical Parkinson’s obstacles; then discuss the science behind them.

“I may not have gone where I intended to go, but I think I have ended up where I intended to be.” Douglas Adams

TwelveSuggestions/Ideas for Living Well With Parkinson’s: These are not Rules, and they may not all apply to every PwP or Care Partner. And you may want to adapt/modify/change any of these suggestions to fit better your role in living with Parkinson’s and the one handling the burden of your life with Parkinson’s. Furthermore, remember I am a biochemist, not a “life coach” or psychologist; thus, these are points to be considered by you and your Care Partner/Team/Family.

If you want to skip the explanation and go right to the one-sheet-handout, including some quotes, see below:

  1. Your Life Still Matters. Underneath the veneer of Parkinson’s, you are still you. Your true self still exists, along with whatever changes you might express in developing Parkinson’s. It is easy to get bitter about having Parkinson’s; yes, it sucks, and you may ask, why me? It takes courage to live your life from now on, but remain hopeful and positive, and show resilience; keep the real you close to the surface. You still exist. Never forget this point #1.

Image by Silvia from Pixabay

2. Stay Goal-Oriented. You are still you, but unfortunately, you have Parkinson’s. Your life is being altered from within, but remind yourself that you are neither crazy nor lazy; it’s just that you have Parkinson’s. The lens of life you are viewing has been changed in your brain. You should still have life goals to achieve by all means. Your life is not over by any means. If you are still working, maybe work fewer hours. If you are retired and focused on reducing stress, think of taking a few hours off each day to rest. Do not give up already planned trips, do not over-exercise, yet, stay goal focused.

Image by Taras Lazer from Pixabay

3. Do Not be Embarrassed by Your Symptoms. Please do not let any motor symptom expression (the cardinal signs of Parkinson’s include Rest tremor, bradykinesia, rigidity, and loss of postural reflexes) from preventing you from going out. While some people may stare, to some extent, your acceptance and that from your Care Partner is what matters. Life is now marching to a different drummer with a new cadence. By continuing to get out and be seen, to be as active as you want, those stares of the past will soon become smiles of acceptance. Stay active, and keep moving. It is suitable for what ails you.

4. Do Not Hide any Evolving Issues or New Symptoms. Parkinson’s is both a complex disorder and a slowly progressing conglomerate disease. Let’s say you are sleeping poorly, having vivid dreams, maybe seeing things that are not there (hallucinations), losing words, or that others can barely hear you when you talk. These are all things your movement disorder physician (a specialty-trained Neurologist) is familiar with from their training. There are ways to deal with each scenario described above. First, you and your Care Partner should try to keep a list of symptoms. Try not to be embarrassed when describing these symptoms to your Neurologist; they are there to help you. Think of your life now as a ‘paint-by-number’ canvas. Only by filling in all of the numbers is the artwork finished. Likewise, give your Neurologist all the information about you, and let them create a complete version of you.

5. Slow Down; It May be Better to Accomplish Less Today. Managing life with Parkinson’s is like returning to learning how to ride a bike with training wheels on once again. Sort out how much you can handle now, and do not be defeated by it. Let’s say you, at 75%, is still very functional. Be realistic. Remember the 1969 song by Simon and Garfunkle entitled “The 59th Street Bridge Song (Feelin’ Groovy)?” Read the first verse. Does it fit you today to slow it down a notch or so? “Slow down, you move too fast / You got to make the morning last / Just kicking down the cobblestones / Looking for fun and feeling groovy / Ba da-da da-da da-da, feeling groovy.” 

Image by Samuel Busetto from Pixabay

6. Understand Your Medical Side Effects. Every drug prescribed by your Neurologist is potent and has side effects. Each class of therapeutic drugs has its strengths and pitfalls. Yes, your Neurologist’s task is to inform you how to take it, what to look for in favorable treatment, and what features are considered detrimental to your health. The first question my Neurologist asked me for almost a decade was, “Are you gambling? And have you spent down any of our retirement annuity?” He asked that because, for several years, I was taking large quantities of a dopamine agonist, which has a distinct side effect, promoting compulsive behavior. But it is your responsibility to be vigilant about such side effects. Furthermore, your therapy can magnify or manipulate other side effects of the disorder. Your Neurologist should be willing to help you understand your therapies’ positive and negative benefits.

7. Optimize Your Day Around Your Best Time to Focus, Balanced by Your On-Off Periods. Maybe you are a morning person. Maybe your best time of the day is late afternoon. If you are still working, keep this in mind as your map out your workday while on Carbidopa/Levodopa. It may be possible to focus your time on when you are at your best, not coming out of a slow-moving off period. If you are still working, see if you can work when you are at peak on; alternatively, see if you can work part-time with your work time coinciding with your optimal time of the day.

8. Everyone Benefits From Better and More Sleep. Many PwP have some sleeping problems, which seem to worsen with the disorder’s progression. Sleep disorders include nocturnal and diurnal manifestations such as insomnia, REM sleep behavior disorder, and excessive daytime sleepiness. There is a real need for each PwP to discuss their sleeping habits with their Neurologist. I am starting to take melatonin (3 mg/night) to prevent nightmares during REM sleep (I’ve been told that I have had 2-3 nightmares over the last two years). Additionally, I could take a nap most afternoons. My goal is to stay in bed for 6 hours each night, whether I sleep the whole time or not is the goal. Slowly, I am adapting my brain such that when it is 3:00 AM., I am absolutely at peak mind. I tell myself to put my head back on the pillow and try to return to sleep. It works about ~60% of the time. I am getting better; time will tell. [Stay tuned, a new blog post on Sleep Disorders and Parkinson’s has been planned.]

9. With Age, Other Disorders Might Occur, and Symptoms May be Unlike Parkinson’s. With age, many other diseases may take a seat alongside Parkinson’s, such as cardiovascular disease, cancer, and type 2 diabetes. The number of deaths in the USA in 2020 resulted in the following statistics (in parentheses is the number of deaths), heart disease (696,962), cancer (602,350), and COVID-19 (350,831). Therefore, we must be prepared for anything to happen with Parkinson’s. However, we must be acutely aware that several other disorders will likely rob us of our lives. Make sure if any symptoms suddenly appear, call your Neurologist AND your Internist/Family Practice physician. It may not be an anomaly with your Parkinson’s.

10. Reduce Stress. If you can figure out the formula to reduce stress, you deserve a Nobel Prize. Stress exacerbates all of your symptoms of Parkinson’s (well, at least mine are!). Under pressure, the adrenal gland produces cortisol, contributing to our “fight or flight” response. While a crucial physiological reaction to stress, chronic stimulation of the stress components is detrimental to one’s health; indeed, it contributes as a critical ally to Parkinson’s. This section is not a treatise on stress, but anything a PwP can do to reduce stress levels will improve their lives. My stress levels came down substantially by retiring from a 40-something-year career in academics at a major medical school. I have now got different stressors and signals. Still, calm has been achieved without the daily stress associated with work. Whatever works for you to reduce stress, do it.

Image by Curt Cornum from Pixabay

11. Exercise is Essential. Suppose you have followed this blog for any length of time. In that case, you know that exercise matters and is essential for your fight against your intruder named, Parkinson’s. A search of this blog reveals a history describing, defending, and detailing all sorts of exercise to enable your health to proceed as planned, even with Parkinson’s. Find an aerobic exercise you enjoy, stretch daily, exercise every other day or so, and achieve some stalemate with Parkinson’s. Keep going because there is no finish line since this is now a life-long exercise pursuit.

Image by Arek Socha from Pixabay

12. Nutrition Matters. You are what you eat, and what you eat matters for PwP. I am learning more about the benefits of an appropriate diet for Parkinson’s. I am working on a new post devoted to nutritional science and Parkinson’s, so stay tuned. A good meal >> bad meal for your body, mind, and your battle with Parkinson’s will all benefit if you carve out time to eat better. An ancient Ayurvedic Proverb says, “When diet is wrong, medicine is of no use. When diet is correct, medicine is of no need.” 

“If the path be beautiful, let us not ask where it leads.” Anatole France

 Adding Up the 12 Suggestions/Ideas: There is no magical tip or suggestion here to rid ourselves of this disorder. There is also no ranked order of importance in this list. Additionally, we can add these 12 suggestions/ideas to the previous posts about ways to live with Parkinson’s. Furthermore, I am happy if only one tip enables you to have a better day. If more than one adds to your day, I will be thrilled.

The task ahead is to stay strong in life with Parkinson’s. Our path forward is both continuous and possibly unsure. A hopeful goal expressed here is to help provide a way through this complicated journey with Parkinson’s. Remember the words of Wendell Berry, “It may be that when we no longer know what to do, we have come to our real work, and that when we no longer know which way to go, we have begun our real journey.”

“A healthy person is not perfect but perfectible, not a done deal but a work in progress. Staying healthy takes discipline, work, and patience, which is why our life is a journey and perforce a heroic one.” David Richo

Cover Photo Image by Roman Grac from Pixabay

10 Replies to “Living Better with Parkinson’s”

  1. Frank, I’m the older brother of Thomas Ciriacks and he recently shared your blog with me. I find it truly inspiring and helpful in my own journey. I had DBS surgery on 3/19/20 (right at the break of Covid which is a story in itself) and have been able to return to 95% of my life since the surgery. Miraculous! No drugs needed aside from 100 mg of Amantadine. I’m boxing (Rock Steady), biking (peloton), receiving acupuncture, chiropractic care, physical therapy and LVST speech therapy (recent decline in voice volume). My speech therapist added exercises with an EMST 150 expiratory muscle strength trainer which appears to be helping greatly with the loudness of my voice. I haven’t seen mention of this device by you. Maybe a previous blog? Despite all the positive benefits of the foregoing, it still comes down to managing stress and getting enough rest. I’ll be interested in seeing your nutrition post as that is my weakest link. Keep up the great blog with as little stress as possible. Blessings!

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    1. Hi Pat, thanks so much for your note. Your brother did a great job publishing ‘The PD Companion;’ simply outstanding. So glad your DBS surgery went well. congrats! It is reassuring to hear the results of your DBS surgery. One of my first PD treatment experiences was taking both LSVT LOUD snd LSVT BIG. I am not familiar with the EMST 159 trainer, but it sounds interesting. I will go back and look (if not, easy enough to correct and write about both LSVT Programs), I know I mentioned the LSVT Programs in my paper, Church FC. Treatment Options for Motor and Non-Motor Symptoms of Parkinson’s Disease. Biomolecules. 2021; 11(4):612. https://doi.org/10.3390/biom11040612. You got it right when you said what it comes down to, “managing stress and getting enough rest.” Absolutely correct assessment about managing Parkinson’s. The idea for the nutrition post is slowly coming, waiting for that ‘nucleation event’ to occur and that tells me, right, now you’ve read enough, go write the blog.I will do my best to work stress-free. In closing, your words are most kind in saying the blog is inspiring and helpful, that means a lot to me, thank you very much. Stay healthy, Frank

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      1. Frank, the EMST 150 is targeted at voice volume improvement, but has a secondary effect of improving swallowing – a key area of risk for PwP as the disease progresses. The manufacturer is Aspire, LLC and they’re located in Cedar Point, NC.

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  2. Hello from Sweden. I found your site to be very useful. After visiting the neurologist I am told I have prodromal symptoms of Parkinson and I am waiting for a DaTScan. O man, is this a tuff waiting… I am trying to fight my symptoms with an antiinflammatory and neuroprotective approach, taking a lot of supplements; ALA, phosfatidylserine, Lions Mane, Quercitine, Luteolin, Benfotiamine, Nicotinamid and other vitamins and mineral. Will also start fasting and try ketogenic diet (have been using both periodically in the past). Being physically active also is an important key. Being a municipal lawyer, my biggest fear is cognitive impairment. IF I am to battle the beast Parkinson, I will do it with every aspect and tool there is available. Thankyou for your great work!

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    1. Susanne, thanks for your note and comments about the blog, I appreciate it. Early in your battle against Parkinson’s, keep going with everyday life, the supplement list sounds impressive, diet is always important (something I am trying to better understand about Parkinson’s), sleep is crucial (the combination of disorder and drugs can dramatically interfere with sleep), and exercise (staying physically active is crucial). Regarding cognitive function, two suggestions. Here, we are asked to type in ‘codes’ (usually a series of 4-6 numbers/letters) to verify accounts. A little boost on memory that I try to do is to remember (quickly memorize) those short number sequences before typing them. It keeps your mind working. Another thing, I am a fan of the medicinal herb Ashwagandha, a part of Ayurveda, the traditional medicine of India. It has been used for many years to treat cognition, anxiety, and Parkinson’s. A big issue with Parkinson’s over time is potential cognitive changes. Keep your mind active, do not let it get lazy, and keep those neural networks firing; and let’s hope you/we all stay together cognitively. Best wishes, Frank

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