Since being diagnosed with PD in 2014, I’ve had the pleasure to meet individuals who have lived with Parkinson’s for 10 to 20 years, and even longer. The common theme for living well with PD is regular exercise and staying active. PD may be a life sentence, but it is far from being a death sentence.
Think of exercise as your most important prescription, something that you need to make time for almost every day. Exercise is more important than any medication, but medication is often necessary or helpful to maximize your ability to exercise.
Medication can help control the symptoms of PD, but no medication has been shown to actually slow or reverse the progression of the disease. PD continues to progress (worsen), and eventually the medication will no longer be able to control the symptoms. Additionally, many patients experience significant side effects from the medications.
Numerous studies have shown that exercise has a profound impact on PD. Exercise helps improve the symptoms of the disease, and can slow down the progression of the disease.
If you’ve been diagnosed with Parkinson’s Disease, search for PD specific group exercise programs in your area. I strongly recommend the Rock Steady Boxing program (don’t worry, it is non-contact). In some metro areas there are alternative unaffiliated programs, including PD Gladiators in Atlanta, Punch Out Parkinson’s in Fort Worth Texas, and Power Punch Parkinson’s in the Denver metro area. Your local YMCA might also have some suggestions.
Also consider working with a personal trainer and/or physical therapist to develop a fitness plan to address your specific needs.
Moving past these sound bites, I’d like to share a brain dump of some of the key things that I have learned about PD over the last few years.
First, I can’t emphasize strongly enough that the outlook is not as bleak as you might think. Your attitude and expectations will shape your reality.
Last week, I visited Rock Steady Boxing headquarters in Indianapolis and met a gentleman who one year ago could only walk with the assistance of a walker. I watched him aggressively perform jumping drills and deep runner’s squats. And I envied his prowess on the speed bag. A key to his recovery was an adjustment in attitude and expectations.
Positive attitude and expectations are a cornerstone for living well with Parkinson’s Disease, but to better manage your PD, you will likely need to change your lifestyle.
It is important not to neglect your key priorities of faith, family and friends. But, from a lifestyle perspective, you will put extra focus on the following:
- Socialization/Active Lifestyle
The good news is that, for the most part, Parkinson’s won’t kill you. It is a major quality of life problem, but you don’t have to look very far to find inspirational individuals that have led full and active lives with PD for 10-20 years or longer. The common theme in the story of these individuals is that they have embraced a lifestyle that includes regular vigorous exercise.
The bad news is that PD is a progressive condition, and there is a good chance that eventually the disease will progress to the point where you can no longer take care of yourself. This can also put a lot of strain on families of the person with PD. But exercise can help you delay how soon this occurs, and lessen the extent.
You’re not alone. It has been estimated that there are between 1 and 1.5 million people in the US with Parkinson’s Disease. If you do the math, this translates to somewhere between 1 person per 220 or 1 person per 320, which makes PD a lot more common than you might think.
There’s no cure, and there is still a lot that is unknown about the disease. Parkinson’s Disease affects different people in different ways, and it is likely multiple different underlying diseases and conditions with similar effects. There is a common saying that “if you’ve met one person with Parkinson’s Disease, then you have met one person with Parkinson’s Disease.” In other words, PD takes a different path with each individual case. I may be lucky and have a very mild version of the disease. But the neurologists that I have seen believe my exercise program is the most important factor in my slow progression, or dare I say, in some aspects, slow improvement.
The medical community understands what happens in the brain as PD symptoms become apparent, but they don’t know why or what triggers it. They do know that in a very small number of cases, there are genetic triggers. The reality is that there are probably a dozen different diseases or underlying conditions that trigger Parkinsonian symptoms.
We also know that by the time symptoms become noticeable, 60-80% of the neurons in this section of the brain (the substantia nigra) that produce dopamine and control movement, are dead.
Medication can help control the symptoms of PD, but no medication has been proven to actually slow or reverse the progression of the disease.
Exercise helps improve the symptoms of the disease, and in many cases, slows down the progression of the disease.
Studies suggest that vigorous exercise may promote neurogenesis and neuroplasticity which can slow down, and to a limited extent, reverse disease progression.
The benefits of exercise are easy to understand if you look at the main motor related symptoms of PD: tremor, muscle weakness, rigidity or stiffness, slow movement and postural stability or balance. Tremor is a little more complex of an issue, but for the other symptoms, it is pretty obvious that exercise is going to help.
Moderate intensity exercise clearly helps with symptom management of Parkinson’s Disease, fighting rigidity and maintaining muscle to counteract the weakening effects of PD. Numerous studies provide clear evidence that even moderate intensity exercise can improve gait, balance, tremor, flexibility, grip strength and motor coordination.
Additional studies have shown that vigorous exercise can affect not only the symptoms, but can slow down the progression of Parkinson’s Disease.
Vigorous exercise induces and increases the beneficial neurotrophic factors. Studies show an increase in GDNF (glial-derived neurotrophic factor), which reduces the vulnerability of remaining dopamine neurons to damage.
Similarly, vigorous exercise increases BDNF (brain-derived neurotrophic factor), which may promote neuroplasticity. Historically, the medical field held the belief that the brain did not make major changes after a certain point in time. However, it is now known that the brain is actually capable of changing and developing throughout a lifetime. The term neuroplasticity is used to describe this tendency for the brain to keep developing and changing. Vigorous exercise is currently considered as the best approach to encourage neuroplasticity.
How much should you exercise? The PD studies that look at this usually start with the general recommendations from the US government and the medical community.
The Centers for Disease Control and Prevention (CDC), which is looking at the overall health of the nation, and preventing disease, makes some clear recommendations.
At minimum, the CDC recommends 2.5 hours moderate intensity aerobic activity or 1.25 hours intense activity per week. And at least 2 days per week of muscle strengthening activities that work all major muscle groups.
But the CDC also recommends that if you want to see greater health benefits, you should double those numbers. 5 hours moderate intensity aerobic activity or 2.5 hours intense activity per week. Plus the muscle strengthening activities.
In fact, there is no upper limit on their recommendation. The CDC emphasizes that more time equals more health benefits. The National Parkinson Foundation (NPF) agrees that this “more is better” exercise recommendation applies to PD.
What is moderate and what is vigorous? I explain that, and provide links to the CDC and NPF statements on exercise in the following article:
For people with Parkinson’s, the most common vigorous exercise regimens are:
High intensity interval training (including boxing training programs, and/or sessions with a personal trainer or physical therapist) – These sessions can provide that moderate or vigorous intensity, depending on the effort that you put into it. They incorporate strength training, exercises that promote balance and emphasize fine motor control and conscious movement. PD specific classes offer an additional benefit through social interaction with others who are fighting similar battles.
Bicycling – Research suggests the speed of the cycling may be important, with motor-assisted devices sometimes used to achieve higher speeds. Different studies have had different minimum speed recommendations, varying from 75 to 90 revolutions per minute.
Running, Jogging and/or Brisk Walking – Heart rate monitors are recommended for helping to monitor intensity.
Of course there are many other vigorous exercise activities, such as swimming laps, kayaking, rowing, jump rope, mountain hiking, and sports such as tennis, soccer and basketball, to name a few.
Don’t limit yourself to a single activity which only exercises a subset of your body’s muscles. If possible, I highly recommend that you see a personal trainer and/or physical therapist, even if they have no experience with PD. They can help ensure that you are strengthening all muscle groups, and help you avoid injuries that can slow or impede your muscle development.
I’m not a doctor, so please keep in mind that this is a layman’s guide.
Levodopa (L-dopa) is the gold standard for treating Parkinson’s, as it able to cross the blood-brain barrier, where it is converted to dopamine. Determining the proper dosage for an individual is difficult and often requires a lengthy trial-and-error approach, as you work with your neurologist to determine the best dosage.
Levodopa is not a once or twice a day drug. As dopamine is used, it is broken down and must be replaced. These fluctuations between doses are known as “on and off” periods. On periods are when the drug is working and symptoms are in control. Off periods are when PD symptoms are in full effect.
Levodopa is combined with carbidopa to reduce nausea and increase effectiveness. Carbidopa reduces the amount of levodopa broken down by the body before it reaches the blood-brain barrier, increasing the amount of levodopa that reaches the brain. This combination is sold under the brand name Sinemet. A recent extended release formulation is sold under the brand name Rytary. There is also an infusion pump mechanism using the brand name Duopa.
In some countries, benserazide (co-beneldopa) is used instead of carbidopa. This combination is sold under the names Madopar and Prolopa, and is not approved for use in the US.
Over time, doses of levodopa must be adjusted, usually increased. This is because PD is a progressive condition, and as more dopamine producing neurons die, there is a greater need for dopamine replacement.
A side effect of levodopa in more advanced PD is dyskinesia, which is involuntary muscle movement. This is the sway that you will frequently see when celebrities with Parkinson’s, such as Michael J. Fox, are interviewed.
Not everyone who takes levodopa develops dyskinesia, but most sources estimate that within 5 to 10 years, 80% will develop these involuntary movements. For this reason, some neurologists are reluctant to prescribe levodopa for younger patients. Other neurologists argue that improved current quality of life and increased ability to exercise outweighs this risk. They also argue that the dyskinesia is the result of levodopa combined with more advanced PD, and that the PD would have advanced with or without levodopa.
Natural sources of l-dopa may be recommended by some naturopaths, including mucuna pruriens (also known as cowhage or velvet beans) and fava beans.
Other drugs include MAO and COMT inhibitors that slow the breakdown of dopamine. Azilect (rasagaline) is a frequently prescribed MAO-B inhibitor. Early studies suggested it may be neuroprotective and slow down PD progression, but further studies were inclusive. Azilect is controversial because the manufacturer is currently charging exorbitant prices during the final months while generic competition is restricted. Selegiline is another MAO-B inhibitor used in some parts of the world. MAO inhibitors are considered to have a mild, if any, effect on PD symptoms, and are taken primarily in hope that they offer some level of neuroprotection.
Dopamine agonists simulate the effects of dopamine and are frequently prescribed before levodopa for younger PD patients. Pramipexole (Mirapex) and Ropinirole (Requip) are the most commonly prescribed.
One concern about dopamine agonists is that for a small percentage of patients, they can be personality altering, leading to both impulse control disorders (ICD) and obsessive compulsive disorders (OCD), such as risky sexual behavior or gambling addiction.
Amantadine is an old flu vaccine that was accidentally discovered to help some PD patients. It is a weak NMDA antagonist that slightly increases dopamine release, and does limited blocking of dopamine reuptake, providing a slight dopamine boost.
Artane (trihexyphenidyl) is an anticholinergic drug that is also occasionally prescribed. It blocks activity of the muscarinic acetylcholine receptor. Acetylcholine is one of the other neurotransmitters, and it is believed that because there is less dopamine with PD, an imbalance of proportionally more acetylcholine causes some PD symptoms, such as muscle rigidity and tremor. Benadryl is an over-the-counter anticholinergic drug that is sometimes used by PwP. However, there’s a potential problem. Studies have shown that long term use of anticholinergic drugs correlates with an increased chance of dementia. Acetylcholine is essential to executive function in the brain, and there are studies that suggest gait and balance issues may be improved by boosting acetylcholine, as opposed to blocking it.
While not necessarily a medication, another frequently discussed treatment is Deep Brain Stimulation (DBS). DBS is a brain surgery where an electrode is implanted in a specific area of the brain. The electrode is connected to a wire that runs below the skin, from the head, down the side of the neck, behind the ear, to a battery powered pulse generator that is placed just under the skin of the upper chest. Electric impulses are sent to specific targets in the brain. The effects are reversible, unlike earlier lesioning techniques where a part of the brain is destroyed. DBS is considered generally effective for improving tremor and dyskinesia. However, it is not very effective for other PD symptoms such as gait, freezing, balance, speech and cognition. In some cases, DBS may worsen balance and/or speech.
Is there a best diet for Parkinson’s Disease?
Kathrynne Holden is a Parkinson’s Disease nutrition specialist who has studied this question for 20+ years, many of those years as the voice behind “Ask About Nutrition” on the NPF Parkinson.org website. She is far better qualified to answer this question than me. She recently shared her thoughts on this subject on her website at http://nutritionucanlivewith.com/2016/10/best-parkinsons-diet/
Overall, that article probably raises as many questions as it does answers. But the reality is that, as individuals with PD, we have widely varying nutritional needs based on other factors. Some of us need to lose weight, and some struggle to maintain weight. Some have food allergies which may affect their condition.
There are books like Grain Brain, and its followup Brain Maker, that are worth reading for PD nutrition advice. However, I’d advise that the medical community is not in agreement on many of the dietary recommendations in these books.
One of the central tenets of the Grain Brain diet is that it is a gluten-free diet. The theory is that some people have unseen gluten allergies which cause inflammation in the gut. This may damage the blood brain barrier which limits the types of molecules that are allowed to pass from the bloodstream into the brain. Enthusiasm for this gluten-free diet is largely based on the case study of one individual who experienced dramatic improvements in PD symptoms by going gluten-free: https://www.ncbi.nlm.nih.gov/pubmed/24464413
While there is certainly no harm trying a gluten-free diet, it may be worth taking a food sensitivity nutrition test (like NutrEval) first, which can advise of gluten and many other food sensitivities.
An extreme diet which may be helpful for PD is the ketogenic diet. This diet is difficult to practice without careful monitoring. This is a high fat, low carb diet, consisting of just 10% carbs, 15-20% protein, and 70-75% fat. Ketogenic diets have a history of some success in treating epilepsy, and some theorize that it may be helpful for other neurological conditions, such as PD and Alzheimer’s.
If you are interested in exploring the ketogenic diet, I’d highly recommend reading The Wahls Protocol. Dr. Terry Wahls suffered from severe Multiple Sclerosis (MS), and fought her way back to health with a nutrient-rich paleo ketogenic diet. This book and web site is the best source of the current information on ketogenic diets to treat neurological disorders.
My personal approach to nutrition is less extreme. I believe that most of us already know what is good for us and what is bad for us. Adjust your diet for overall health, not just for PD. For many people, it is easier to watch what they eat when they are following a diet plan. Paleo and Mediterranean diets are good guidelines, but the Mediterranean diet seems to be chosen more for PD (…probably because it is easier to follow and you get to drink wine). If you go with Paleo, emphasize the plants and vegetables, and don’t overdo the red meat. Our paleo ancestors likely ate far more plant material than animal. The Wahls Protocol has some great discussion of paleo diet adaptations, which are less extreme than ketosis.
Many studies are linking gut bacteria in the microbiome to Parkinson’s Disease. As illogical as it sounds, there is considerable evidence that changes in the gut occur before PD symptoms become evident. While there is much more to be learned, studies show that people with PD have an increase in suspected bad bacteria that tend to cause inflammation and a decrease in good/healthy bacteria that produce protective compounds called short chain fatty acids (SCFAs) that feed the cells lining your gut.
Probiotic and prebiotic foods and supplements may help tip the balance in the microbiome toward healthy bacteria. Probiotics contain actual live healthy bacteria strains, and include certain fermented foods and beverages including kefir, kombucha, kimchi and traditional sauerkraut. (Kefir and kombucha are a delicious part of my daily routine.) Prebiotics are foods that pass through the stomach to the intestines without being fully broken down, and that provide nutrients to stimulate the growth of good bacteria. In general, the good bacteria eat dietary fiber and bad bacteria eat protein and fat. If you eat more plants and less animal protein and fat, you tend to have more good bacteria in your gut.
(On the extreme end of microbiome theories, there are some who believe that fecal transplants, where fecal matter is transplanted from a healthy subject, are a viable treatment to quickly repair an unhealthy microbiome.)
A good summary of the current state of this gut-brain connection and PD was recently published by the National Parkinson Foundation and can be found here: http://www.parkinson.org/find-help/blogs/whats-hot/december-2016
Some PwP have taken interest in a finding of the Finnish study that found that those with PD have significantly lower amounts of Prevotellaceae bacteria in their feces. Unfortunately, there do not appear to be any probiotic foods or supplements that have been shown to boost this particular strain.
If you take probiotic supplements, please keep in mind that they require refrigeration to keep the probiotic bacteria alive. I hesitate to recommend any particular brands, but VSL#3 sees to have the best reputation.
Additional nutrition thoughts that come to mind…
General cellular inflammation, especially in the brain, may contribute to PD, and fish oil/omega-3s may help fight this inflammation.
Sugars can also promote inflammation. Reduce sugars in your diet, especially added sugars which will soon be highlighted on nutrition labels (but also be weary of sugar substitutes).
Eat more plant based food, such as vegetables, fruits, seeds and nuts.
On the PD specific side, you’ll encounter various superfood recommendations in your journey. They can’t hurt, but it is very unlikely that a single superfood is going to make a difference.
Some foods such as fava beans and pumpkin seeds can provide a small dopamine boost.
Coconut oil contains medium chain triglycerides (MCTs), which are an extremely efficient source of fuel for the body, and supportive of digestive/gut health.
Anti-oxidants may also be beneficial.
What about supplements and alternative remedies?
Well, my dirty little secret is that I take a combination of around 15 different vitamins and nutrients. I’m not proud of this, as I’m sure that most of this is a complete waste of money. But who knows? Feel free to skip this section if you are skeptical of supplements.
Let’s face it, from my perspective, looking ahead to advanced stages of PD is a frightening prospect. If there’s a chance that something I do today can prevent or postpone that fate, without causing me harm, it is worth the chance.
I’ve been pretty straight-forward with my neurologists about this, and so far the recommendation back is to keep doing what I’m doing, especially the exercise. Comparatively speaking, for 2-1/2 years post-diagnosis, I am doing extremely well.
I don’t necessarily recommend that others pursue supplements with an almost reckless abandon, but don’t dismiss them without consideration.
One day I will do a more detailed supplement write-up, but for now, here are a few to consider:
Fish oil (omega-3), chelated magnesium, Vitamin B complex (methylized for MTHFR consideration – P5P for B6, metafolin for B9), extra Vitamin B1 (thiamin), extra Vitamin B3 (nicotinamide ribosome), extra Vitamin B12 (sublingual absorption), Vitamin C, liposomal glutathione, NAC, TUDCA, R-Lipoic Acid, Curcumin, CoQ10, Milk Thistle, Acetyl L-Carnitine, Vitamin D, Pterostilbene.
To emphasize a few points, the B vitamins are important for the nervous system and help prevent fatigue. Many people, especially as they age, do not get enough B vitamins. Also worth consideration is a common genetic condition known as MTHFR, which, in my opinion, is overhyped in alternative medicine circles. However, there is compelling evidence that MTHFR does affect the body’s ability to process some forms of B vitamins. Methalized versions are preferred with this condition, such as P5P for B6, metafolin/methylfolate for B9, and methylcobalamin for B12. 23andme.com offers a free DNA test if you have PD.
Low levels of glutathione in the blood are associated with PD. Studies of IV glutathione treatment in the early 2000’s were inconclusive, but possibly beneficial. All agreed that the IV delivery was inconvenient. Newer formulations of oral glutathione have been shown to raise these levels of glutathione in the blood, and in a self-reported assessment survey of PD patients by Bastyr University, usage of oral glutathione strongly correlated with slower PD progression. Intranasal glutathione is also being studied…it has been shown not to increase blood levels of glutathione, but may increase glutathione levels in the brain.
NAC is another supplement that can raise glutathione levels and boost the immune system. Your results may vary, but NAC has been part of my routine since shortly after my diagnosis, and I haven’t been sick or had so much as a cold since then. Come to think of it, I haven’t been bothered by seasonal allergies either.
Low levels of NAD+ (nicotinamide adenine dinucleotide) in the blood are also associated with PD. Vitamin B3 (niacin) is a dietary precursor to NAD+. Nicotinamide riboside Is a formulation of vitamin B3 that claims to be most effective in raising NAD+ levels. It is also an excellent energy booster.
Coffee is generally seen as positive for PD.
Nicotine is also a substance of interest because of studies that have shown lower occurrence of PD with people who smoke. One might argue that PD affects mostly an older population, and smokers don’t live as long. But, there are some with PD who experiment with nicotine patches.
Speaking of experiments, one of the reasons why there are somewhat inconclusive opinions on different alternative remedies is because PD seems to be greatly influenced by the placebo effect. In double blind studies, there is one group that receives the treatment and another group that receives a fake treatment known as the placebo. The patients, and those evaluating the patients do not know who is receiving the real treatment or the placebo until the end of the study. In PD studies, it is very common for placebo groups to do as well or better than the treatment groups. This phenomenon, the PD placebo effect, is thought to occur because patients expect the treatment to help them, causing the brain to release a dopamine reward that provides a temporary improvement. This may explain my success with supplements…the placebo effect times 15. As Steve Perry sang, “Don’t Stop Believing”.
Parkinson’s Disease symptoms are not limited to motor symptoms. There are a variety of non-motor symptoms including:
- Soft voice
- Excessive sweating
- Sleep disorders (especially acting out dreams)
- Difficulty swallowing
- Animal magnetism
Ok…I made that last one up.
When I was diagnosed, the neurologist commented that he could see PD from my facial expression because my face was frozen and I was unable to smile. I told him, “You idiot, of course I’m not smiling…you just told me I had Parkinson’s Disease.”
In all seriousness, with a symptomatic predisposition toward depression, and the harsh reality of living with an incurable disease, it is easy to become depressed. Combining depression with fatigue, pain, and embarrassment over visible symptoms, there is a tendency to reduce social interaction and increase isolation. This, in turn, tends to increase depression.
There is also the situation that you may be thinking about PD quite a bit, but are reluctant to discuss it. You don’t want to be the type of person who is always going on and on about their health problems.
It is important to continue social interaction and actively challenge depression. Parkinson’s support groups are a good outlet for some people. Others find these groups to be depressing. Group exercise classes for PD are a great alternative outlet…somewhere that you can openly talk about PD without judgment…learn from the experience of others facing similar issues…in a setting that is motivational, fun and inspiring…the polar opposite of depressing.
The motivation and camaraderie of a group exercise class for Parkinson’s Disease, like Rock Steady Boxing, is a powerful force in the battle with PD depression and isolation.
Having a PD outlet can make it easier to also maintain your friendships outside of the PD community.
Need some motivation to get started?
Here are some great stories about Rock Steady Boxing: