On a recent episode of APDA’s Dr. Gilbert Hosts, Dr. Drew Falconer joined me to tackle your unanswered questions about Parkinson’s disease (PD). We covered a lot of ground during the broadcast and answered many questions from the audience. In this blog, we are answering some of the questions we didn’t have time for, specifically about nutrition, exercise, and physical therapy. We will also dedicate future blogs to address your unanswered questions about medications, testing for PD, deep brain stimulation, and more.
Jump to the answers below:
Questions answered within Dr. Gilbert Hosts’ episode
It was a very informative conversation, and we encourage you to watch the full episode, but for your convenience we’ve listed the topics and questions from the episode below with timestamps, so you can skip to what interests you most.
- 3:56 – Is there another medication besides Carbidopa levodopa for PD? That seems to be the only medication that anyone is ever on. I have tremor and tremor does not seem responsive to this medication.
- 7:19 – Does levodopa become less effective over time and if so, what should I do about it?
Deep brain stimulation
- 9:27 – What is deep brain stimulation, and at what point should you be considering such a procedure?
- 15:14 – What is the prognosis of Parkinson’s after DBS?
- 16:02 – Many people have heard of the vibrating glove for PD. Does it work?
- 20:32 – Is lightheadedness connected to my Parkinson’s and if so, what can I do about it?
- 25:12 – How many people with Parkinson’s have gastroparesis?
- 27:24 – Are probiotics a good idea for Parkinson’s?
Tests for Parkinson’s
- 28:58 – Is there a specific test for Parkinson’s Disease?
- 33:59 – What is atypical Parkinson’s?
- 37:10 – What is Lewy Body dementia? How is it different from Parkinson’s disease?
Exercise and physical therapy
- 42:26 – How much should I exercise and what exercise is the most helpful?
- 47:19 – What is freezing of gait and what can be done about it?
- 50:33 – Is there a specific Parkinson’s diet that I should use? Are there specific supplements that I should use?
Movement disorder specialist
- 54:34 – What is a movement disorder specialist, and should I be seeing one?
Additional Audience Questions on Parkinson’s
There were many more audience questions and comments that we didn’t have time to address during the live broadcast. Today, we will address many of these questions specifically on the topics of diet, physical therapy, and exercise. In subsequent blogs, we will address questions on other topics, so stay tuned for more.
Diet and Parkinson’s Disease
Q: I have heard of the “protein effect”, that protein can interfere with levodopa absorption. How much protein do you need to eat to get this effect? How do we balance the foods that we eat to ensure optimal performance of the medication?
A: In some people, protein competes with levodopa to cross the small intestine, so eating protein (e.g., beef, chicken, pork, fish) close to taking a dose of levodopa can lead to decreased absorption of the medication. This is known as the protein effect. However, the protein effect does not typically occur early in the disease and is not a problem for many people even as the disease advances. Therefore, you need to make sure that you have the protein effect before you change your eating habits. You can do this by comparing your response to levodopa upon eating protein and not eating protein. If the effect is the same, then you do not have the protein effect and you can eat whatever you like, whenever you like. If you do feel like eating levodopa with protein reduces its efficacy, this article on the challenges of levodopa and food intake explains how you can better manage to eat well and get the full benefit of the medication.
There is not one set amount of protein that triggers the protein effect. Everyone is different in this regard. This means that personal experience will be the guide as to how much protein will affect medication absorption in you.
Q. Should I take my medication with food, before food, or after food? What if a dose that should have been taken before a meal is missed? Should it be taken after the meal and, if so, how long after eating?
A: If a person has the protein effect (as discussed above), then it makes sense to take the medication either ½ hour before or ½ hour after eating protein. Your intake needs to be individualized – some people need more time between protein and medication. However, some people may experience nausea from the medication and for those people, taking the medication with food can be helpful. If you have both nausea from the medication and the protein effect, then you can take the medication with foods that do not have protein in them, such as crackers.
Q: Should people with Parkinson’s disease avoid dairy? Is there any connection between dairy and PD?
A: Population studies have shown a slightly elevated risk of PD in people who report high consumption of dairy, as compared to people who report low consumption of dairy. The reason for the association between increased risk of PD and dairy is not known. It is important to note that these studies do not address the effects of dairy on people who already have PD.
These studies demonstrate an association (meaning a small, elevated risk of PD and dairy coexists) – but not a causation (that consuming dairy causes the elevated risk.) There may be an innocuous link between dairy and PD that explains the connection (e.g., just for argument’s sake – no data exists to suggest this – people who carry a genetic predisposition to PD also carry a genetic predisposition to enjoying dairy) but that has yet to be discovered.
Two theories that have been suggested but not proven to explain the connection:
- dairy may contain a pesticide that contributes to PD risk.
- dairy may lower uric acid in the body; a substance which may be protective of PD.
On the other side of the argument is the fact that dairy serves as an excellent source of calcium, vitamin D, and other essential nutrients. Calcium and vitamin D are vital to support bone strength which is necessary to decrease the probability of fractures in people with PD who may be prone to falls. Vitamin D deficiency specifically has also been linked to PD, so all things considered, it may be detrimental to people with PD to eliminate a dietary source of calcium and vitamin D.
The bottom line is that there is currently not enough information to make a particular dietary recommendation concerning dairy for people with PD.
Q: Are there other foods to avoid if you have PD?
A: It is hard to sift through all the information on the internet about foods and supplements to avoid in people with PD. There are a lot of claims about nutrition and PD out there, so it is important to consult credible sources. People often ask us about alcohol, iron, dairy, certain vitamins and supplements — this article addresses other foods to avoid if you have PD.
Q: I have lost 20 pounds with PD. Why does this happen? Eating more does not seem to help.
A: Weight loss is a non-specific symptom and could be a sign of many medical problems including cancer, thyroid disease, and other endocrine abnormalities, as well as inflammatory bowel disease and other malabsorption syndromes. It is imperative that weight loss is not assumed to be due to PD without a medical workup. Once a medical workup is complete and your primary care physician is confident that there isn’t a second medical problem contributing or causing weight loss, then the weight loss can be attributed to PD.
The causes of weight loss in PD are varied and include:
- Decreased appetite due to decreased sense of smell, apathy, depression, or nausea from medications.
- Increased energy expenditure can be associated with PD due to dyskinesias or tremor. In addition, PD can be associated with dysregulated energy use even without extra movements. There are many theories as to why this may be the case, including abnormalities of the hypothalamus, an area of the brain that is responsible for many automatic functions including food intake and energy metabolism.
Other symptoms that may contribute to weight loss in PD include:
- Impaired swallow which often is associated with a reduced amount of food intake as the person with PD avoids the discomfort of eating with a swallow impairment.
- Slowed transit of food through the gut which can impact absorption and cause weight loss.
- Mobility issues and tremors may impede the ability to buy groceries, prepare meals, and eat, all contributing to reduced food intake.
The solution to the weight loss depends on its cause. This may involve improving your swallow with swallow therapy, adjusting PD medications to control dyskinesias, tremor or nausea, and treating depression.
- For all people with weight loss and PD, a visit with a dietitian may be very useful to help design menus for you to increase your weight.
Physical Therapy and Parkinson’s Disease
Q: Is physical therapy (PT) the only thing that can help you straighten up and not be bent over? If yes, are there any exercises? Can it be managed in other ways?
A: Physical therapy is the mainstay of treatment for postural problems of PD. There are particular physical therapy techniques directed at postural abnormalities including:
- back muscle strengthening exercises
- postural re-education, in which the body is trained and coached to maintain an upright posture
- kinesio-taping of the back muscles
- stretching exercises
Here are some other strategies that have been tried:
- Use of a high-frame walker with forearm support
- Increase of levodopa: In a small subset of people, truncal abnormalities may worsen at the end of a levodopa dose and may respond well to an increase in levodopa
- Consider whether the addition of a new medication preceded the postural abnormality and if so, withdraw or adjust it
- Botulinum toxin injections of muscles of the trunk, back or abdomen found to be overactive
- Deep brain stimulation (this has been tried infrequently and may be beneficial in select situations)
Q. I have a problem with frequent falling. Does carbidopa/levodopa help with this problem?
A: One of the most challenging symptoms of PD that fundamentally affects quality of life is frequent falls. The most important first step to prevent falls is to identify the cause or causes of the falls.
It may seem that everyone with PD falls for the same reason, but in fact, there are multiple possibilities including:
- Postural instability –– refers to the inability to right oneself after being thrown off balance. A person with PD with postural instability may fall if they are jostled. This symptom is not typically present early in the disease and tends to develop as the disease progresses. This cause of falling may be responsive to an increase in carbidopa/levodopa.
- Freezing of gait (FOG) – This is an abnormal gait pattern that can accompany PD in which you experience sudden, short, and temporary episodes during which you cannot move your feet forward despite the intention to walk. FOG can lead to a fall. This cause of falling may be responsive to an increase in PD medication.
- Dyskinesias – These are extra, involuntary movements that occur in some people as a side effect of levodopa ingestion. When severe, dyskinesias can throw a person off-balance and cause a fall. This cause of falling may require a decrease in medication.
- Visuospatial dysfunction which leads to an inability to navigate oneself in three dimensions. A person may have difficulty maneuvering around obstacles in a room or backing up to sit down in a chair. This cause of falling responds best to physical or occupational therapy.
- Orthostatic hypotension – A common non-motor feature of PD is drops in blood pressure upon changing head position. This can lead to dizziness and even passing out, which can be interpreted by the bystander as a fall. Treating low blood pressure is necessary to help with this cause of falling.
Q: What options are there to help with gait issues?
A: Walking can be affected in PD in many ways. The characteristic walk of a person with PD involves a stooped posture, slow shuffling steps, decreased arm swing, difficulty with turns, and poor balance. An increase in medication may be helpful for gait issues. Physical therapy is also vital to retrain the brain to take bigger, more confident steps. If possible, find a physical therapist who has experience with patients who have PD.
This presentation addresses ways to improve walking in PD.
Q: Can PT help with delaying the progression of the disease?
A: Evidence supports the following claims (among others):
- Cardiovascular fitness is associated with better cognitive and motor scores in PD
- Longevity in PD is associated with increased physical activity
- Non-motor features of PD such as constipation, fatigue, depression, all improve with exercise and fitness
Physical therapy, which is the use of exercises and physical activities, guided by health professionals to help restore strength and movement, plays a large role in facilitating fitness and activity in people with PD. To get started, ask your doctor for a recommendation for a physical therapy assessment.
Q. Can you do physical therapy in someone with advanced dementia?
A. Yes, even people with advanced dementia can benefit from physical therapy even if it seems that they are not able to follow commands and participate. Physical therapists may use different methods to engage a person with dementia and these may include:
- Using short, simple instructions
- Demonstrating the movement being requested so that the person with dementia mimics the movement.
- Breaking down an activity into small steps to allow for the teaching of a more complex movement
- Performing passive movement and stretching to prevent contractures and bed sores
Exercise and Parkinson’s Disease
Q. When I exercise, how much should I push myself? Is it common for pain to restrict exercise?
A. If you feel that exercise is causing pain or excessive fatigue, you should re-evaluate what you are doing. Pain and excessive fatigue may be the body’s way of saying that there is a problem. A physical therapy evaluation will ensure that you are doing the exercises properly, which in turn will allow you to maximize the benefits of exercise and limit any negative consequences.
Q. Would you recommend the constant motion of sailing as a good PD exercise?
A. I am not familiar enough with the body movements required for sailing in order to answer that question. But my guess is that it involves many of the four elements of exercise – aerobic, strengthening, balance training and stretching – which would provide positive benefits. An important element for exercise success is finding something that you enjoy and are going to do.
Q. Can excessive exercise take the place of medication?
A. Exercise will improve your Parkinson’s disease over time, but usually can’t be used in the short term to improve symptoms. However, there are some people that do feel that a session of intense exercise makes them able to miss a dose of medication. For others, the opposite is true – that people need to take their medication to be limber enough to exercise maximally.
Be sure to talk with your doctor before changing or stopping any medications.
Q. How do I keep my spouse motivated to exercise regularly?
A. A great way to keep motivated is to have an exercise buddy. So, if possible, do the exercise with your spouse! Also, find an activity that they like to do, so it is more enjoyable and feels less like a chore. Fitness classes can be a great option – not only can the camaraderie of a group setting be beneficial and motivating, but by signing up for a class you may feel more accountable and inclined to show up. You may need to try out various classes to find one that is enjoyable for them. Be sure to look for classes that are designed specifically for people with PD.
Tips and Takeaways
- Parkinson’s disease can be complicated and confusing. APDA is always here to answer your questions and provide support.
- The questions in this blog were asked during a recent episode of Dr. Gilbert Hosts: Ask the Doctors Anything. We encourage you to watch the full episode.
- You can track your PD symptoms using the APDA Symptom Tracker app, available for free through the Apple Store or Google Play.
- If you have a PD-related question, you can submit it to our Ask A Doctor portal.
- To make sure you don’t miss the next episode of Dr. Gilbert Hosts, subscribe to APDA’s YouTube channel, and check our Virtual Events Calendar.