Thank you for attending the Living Well with PD Education Symposium. Please scroll down to to read our speakers answers to attendee questions.

ANSWERS TO YOUR PD QUESTIONS FROM IHTSHAM UL HAQ, MD FAAN 

Ihtsham ul Haq, MD FAAN

University of Miami Health Systems Division Chief of Movement Disorders
Department of Neurology

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University of Miami to Naples

​QUESTION: With four MDS specialists, are you planning to have someone based in SWFL, and is the University of Miami planning to have someone provide care in Naples?
DR HAQ: I feel obliged to mention that we are now blessed with seven UM affiliated movement faculty, but all are based in the greater Miami area. We would be delighted to have someone in SWFL; it will require identifying a location and hiring faculty interested in being affiliated with, but not physically present at, the main UM campus.

Is PD Heritable?

QUESTION: How can I find out more about my genetic links to my PD?
DR HAQ: There are several ways to go about it. The Parkinson’s disease foundation provides free genetic testing for seven of the genes that we know increase the risk of Parkinson’s disease through the PDGene project (https://www.parkinson.org/advancing-research/our-research/pdgeneration). I think it makes sense to pursue that first. If that is negative, there is a 26 gene panel offered by the company invitae (https://www.invitae.com/) that, if not covered by insurance, should be a maximum of $250 out of pocket. More detailed testing than that is usually done for research purposes. We have a number of genetic studies (in addition to PD Gene) going on at UM that are discovering new risk genes and other genetic factors that improve our understanding of the condition and that could point to targets for new treatments.

QUESTION: Is PD inherited or acquired?
DR HAQ: It is both. There has to be some reason that some people get PD and others do not, and even more so why PD is so different even between people who have it. Like other health conditions (diabetes, obesity, cancer) whether or not you develop the condition, and its severity if you do, is a combination of genetic and environmental influences. One of those factors may be more or less relevant than the other for a given individual. The seven most common risk factor genes are present in between 10-15% of people with Parkinson’s disease.

QUESTION: Does being a carrier with hand tremors and dystonia mean I have PD?
DR HAQ: Parkinson’s disease is a clinical diagnosis, and so if you have the typical features of it, and no features pointing to another disease instead, then you have Parkinson’s disease. Many people with hand tremors and dystonia would meet criteria for PD but some would not.

QUESTION: Could you also elaborate on PD carriers?
DR HAQ: To be a carrier means to have inherited an abnormal copy of a gene from one parent where normally an abnormal copy has to be inherited from both parents to show symptoms of the disease. Sometimes carriers are at higher risk than the rest of the population for developing PD, but are at less risk than if an abnormal copy was inherited from both patients. Sometimes  a person is a carrier for two different risk genes whose abnormal activity combine in a way that leads to their developing symptoms. Usually If you are a carrier for a PD-associated mutation, that would warrant watching for symptoms of PD, but it is having the symptoms that would mean you have the disease. There are some people who are carriers for PD-risk genes who do not have PD symptoms, and we would say that they don’t have PD. 

Treatment

​QUESTION: What is Your Opinion on DBS?
DR HAQ: DBS is very good at what it is good for, and for the people for whom it is safe to get it. Which is to say it is excellent at getting rid of tremor that nothing else can, decreasing (and hopefully eliminating) the fluctuation of an otherwise good medication response, and eliminating dyskinesia. It also has the advantage of being adjustable over time. People who are at higher risk for postoperative cognitive decline (i.e. the significantly cognitively impaired), for infection, or for bleeding, should not get the surgery.

QUESTION: What dopamine agonists do you recommend for early non-motor symptoms, and what dopamine agonists do you recommend with Rasagiline for early non-motor symptoms?
DR HAQ: They are all equally good, except for amantadine which has a somewhat higher side effect profile. In my opinion amantadine is best used to treat dyskinesias, which it does quite well.

QUESTION: What do you know of electromagnetic stimulation through fingertips sponsored by Stanford University? 5-50 Hertz. Do you have an opinion on Stanford’s vibrating gloves?
DR HAQ: I can’t say much about it other than I’m eager to see the results of larger trials. They started with stimulation that paused instead of going on all the time, in patients with implanted DBS brain electrodes. Then they tried a similar strategy with sensory vibrations, and in six patients found it was safe and produced a statistically significant result. The amount of improvement on average was not much though. One patient out of the six did do significantly better than the others. There was no placebo group, and the lab themselves note that the study shows the technique is safe and requires additional study with a placebo group. This work was done by the Tass Lab at Stanford (https://med.stanford.edu/tass-lab.html).

QUESTION: Where can I go to receive a current evaluation? I have had PD for 3 years.
DR HAQ: I think it always makes sense to start with whoever is closest to you. UM, UF, and USF all have excellent movement disorder groups that provide telehealth visits. Please speak to your congressional representative by the way – since the state of emergency is over telehealth for neurological care is slated to only be available if you live in a rural area in January 2025 if Congress does not act to change the rules. 

Trials & Studies

QUESTION: Please elaborate on studies linking glucose to PD and current dysfunction regulation.
DR HAQ: This is a large topic that is dealt with much better than I would have over on the MJFF site: https://bit.ly/3NVdJHS

QUESTION: You provided an encyclopedic overview of trials…in your opinion which three are the most promising?
DR HAQ: The trials are aimed at different stages of the disease, so which three are most promising depends on what you might consider most important. If you have disabling dyskinesias but are otherwise doing well, studies that show promise at treating tremor may not be of much interest. The broadest impact on the field – barring a left-field surprise, which happens often enough in medicine – will probably be the large genetic database efforts that are currently ongoing.

QUESTION: Should/can our neurologist recommend me for any particular study? Are there criteria needed (e.g. age, degree of PD) to get into a trial?
DR HAQ: You ought to have trials that you qualify for presented to you by your neurologist so that you can pick for yourself which of them is most worth your time. You can also look up trials on FoxFinder (https://www.michaeljfox.org/trial-finder) or clinicaltrials.gov and reach out to the study groups directly. All trials will have enrollment criteria such as age and disease duration.

QUESTION: We have someone in the Pasadena study that is in 4th year and they are continuing on because of “positive signs” from Phase I. However, I believe you stated that Phase I was unsuccessful.  Can you clarify?
DR HAQ: Success in a study is a matter of whether they saw a significant difference in the overall chosen metric. In this case they did not see that there was a significant difference between the placebo or either dose of prazinesumab at 52 weeks. When an individual in a study notices benefit, allowing them to continue taking the medication can help sort out whether there was an effect that the study missed (an open-label extension). There was enough there for the company to proceed to a phase 2b trial of the same drug, this time called PADOVA. It sounds like your friend is either in an open-label extension or rolled over to PADOVA.  

Exercise

QUESTION: During exercise, what heart rate should be targeted? Will three different exercises over 60 minutes be effective?
DR HAQ: I think there’s a lot of good research going on trying to answer this question. At least 60-85% of maximal HR or 2.5h/week is what the studies are testing. Three vigorous exercises over 60m would definitely qualify. A stroll, tai chi, and then stretching might not provide the same level of neuroprotection.

QUESTION: Can insurance cover the cost of exercise?
DR HAQ: Yes. It will vary with insurance provider.

QUESTION Is there a “PD Camp”? Such as a golf camp?
DR HAQ: Though I have found some on Google, I have no direct experience with any.

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Answers to your PD Questions - Bhavana Patel, MD

Bhavana Patel, MD

Dr. Bhavana Patel, DO, MS is currently an assistant professor in the Division of Movement disorders and Behavioral Neurology at the University of Florida. (scroll down for Dr. Patel's full bio.)

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Treatments

QUESTION Is a B-12 shot advisable to enhance energy level?
DR PATEL: No, it only helps those who are actually deficient in B12 so first step would be checking a B12 level.

QUESTION: Can you speak to the debate about waiting to start L-Dopa vs. Starting earlier? Regarding its ability to preserve efficacy long-term?
DR PATEL: There is no benefit to waiting to start levodopa, particularly if you are having difficulties with daily activities or balance. Instead, you may be missing out on good years of better motor function and quality of life. Levodopa is the best medication to date for individuals with PD. Given that PD is a progressive condition, people with PD will have lower levels of dopamine over time and so individuals require more medication over time- regardless of when you start taking levodopa.

QUESTION: Where can PD patients get a list of medications/drugs that we should avoid and/or conflict with Sinemet?
DR PATEL: Recommend looking at these sites, printing the free information and/or ordering the Aware in Care kit from the Parkinson Foundation. The kit is free however there is a $8 shipping charge.
Click: Hospital Safety Kits -Parkinson's Foundation
​Click: Aware in Care Packet - Parkinson's Foundation
 CLICK: Aware in Care - Parkinson's Foundation

QUESTION What do you know/advise about the use of Clozapine for delusions & hallucinations?
DR PATEL: Clozapine is a one of the 3 medications used to treat delusions and hallucinations in PD and it works great. However, it requires frequent blood monitoring for a rare side-effect in blood counts and can cause sleepiness.

QUESTION When in the course of disease progression should I start DBS?
DR PATEL: This is an individualized decision, however overall individuals should start considering DBS if they are experiencing frequent OFF times with recurrence of PD symptoms (tremor, slowness, stiffness), dyskinesias, and tremor. It is important to note that individuals considering DBS should have improvement in their motor symptoms with PD medications like levodopa. DBS can help improve OFF times, dyskinesias, tremor, slowness, and stiffness. It is not indicated to help with memory, speech, swallowing, and balance.

Symptoms

QUESTIONS: Does PD affect the eyes?
DR PATEL: Yes. Eye movements can be affected, along with difficulty blinking leading to dry eyes. Some people may excessive blinking and others may experience inability to open the eyes on command. Additionally,  changes in the retina can lead to difficulty in determining contrast changes when items are of similar colors. Depth perception/visuospatial concerns may also occur however this is related to the brain’s ability to process the visual information.

QUESTION: Could you address the issue of eye tremors that make it difficult to read a line of print/text?
DR PATEL: Convergence insufficiency, which is difficulty moving the eyes to read print up close can make print look blurry or even double.

QUESTION: Is hearing affected by PD?
DR PATEL: There was one study that showed a possible link with hearing loss and PD, however more research is needed on this topic. 

QUESTION: Is neuropathy related to PD?
DR PATEL: Neuropathy can be part of PD.

QUESTION: How is neuropathy treated if it is part of PD?
DR PATEL: Neuropathy is frequently treated symptomatically with medications aimed to improve tingling and pain. To date there are no medications to help with numbness that people can experience with neuropathy. Part of the work up include excluding other common causes of neuropathy for example diabetes, thyroid disease, certain vitamin deficiencies, among others.

QUESTION: Is constipation a side effect of PD? What can be done to ease this symptom?
DR PATEL: Constipation can occur years prior to the dx of PD and is part of the disease. Management can include hydration, dietary changes, fiber supplements, stool softeners, various laxatives, suppositories, enemas, and prescription medications such as Amitiza or Linzess.

QUESTION: I lost my sense of smell at 42. I am now 77. Could the loss so long ago have been an early symptom of PD or a sign of early Alzheimer's?
DR PATEL: Yes we know there are many symptoms that precede the onset of motor symptoms and reduced sense of smell is one of them that may occur 10-20+ years prior to the diagnosis.
DR PATEL: No loss of sense of smell is not related to Alzheimer's disease.

Exercise

QUESTION: Why/how does exercise slow PD progression?
DR PATEL: More research is underway at this time to better understand the connection between the exercise and disease progression, however overall it can help maintain connections within the brain and help form new connections.  

QUESTIONS: Optimal heart rate for exercise/ percentage of maximum heart rate?
80-85% average maximum heart rate, There are target heart rate calculators and charts online like this one at the American Heart Association website  And the  CDC website 

QUESTION: How can PD patients get the cost of exercise covered by insurance?
DR PATEL: Some Medicare supplement plans or advantage plans may offer coverage for gym memberships or some health insurance plans may reimburse you for gym membership.

QUESTION: Are clinical trials available in North Florida?
DR PATEL: Yes, I recommend going to ClinicalTrials.gov
Under condition type Parkinson disease, followed by selecting United States for Country. Then you will be prompted to select the state and enter the city you live in and can search for centers in your area who are offering clinical trials. 

Questions About LSVT Big & Loud - Christina Metz, PT, DPT & Judy Jenner, MS, CCC

Christina Metz, PT, DPT

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Judy Jenner, MS,CCC

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Erin Trifilio, PhD

Matt Beke, MS, RDN, LDN

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LSVT Big & Loud

QUESTION: Are LSVT Big & LSVT Loud covered by Medicare?
ANSWER: Medicare does provide coverage for speech, physical, and occupational therapy. LSVT LOUD and LSVT BIG are types of these therapies. As with any questions related to insurance coverage, it is imperative that you discuss your individual situation with your insurance/Medicare representative, the healthcare organization from whom you will receive treatment, and your individual LSVT Clinician. There are many variances associated with Medicare coverage (e.g., co-pays) that you will want to fully understand before starting treatment.
Reference: https://blog.lsvtglobal.com/faqs/insurance/#1501865754905-9de739e8-7e94 

QUESTION: How often should PD patients do LSVT refreshers?
JUDY JENNER: LOUD refreshers should take place every 3-12 or longer as the individual feels is necessary or notices changes in their status (i.e., voice getting softer, slurring of speech).  Certainly, evaluations can take place and if further therapy is not indicated, the refresher is not necessary.  The individual must commit to daily practice for BIG and LOUD improvements to "stick.”  The Speech Exercise Groups and the Exercise Groups offered by the Association provide an excellent and different opportunity to "practice" and might encourage individuals to maintain the daily practice by offering some variety.

DR METZ: For a ballpark estimate-refreshers would be recommended roughly every 3-6 months based on the following research. Improvements in voice and communication following LSVT LOUD have been documented to last for as long as two years after treatment.  For LSVT BIG, research demonstrated improvements lasting at least 12 weeks beyond the end of the treatment. In both research studies, it is quite possible that the results for LSVT LOUD or LSVT BIG lasted longer than two years or 12 weeks in some people, however, those were the endpoints of the study.

Clinically there is individual variability in how long treatment effects last from person to person. We teach our LSVT Certified Clinicians that they should expect LSVT LOUD and LSVT BIG treatment effects to last at least six months in people with idiopathic Parkinson’s disease without any additional treatment. This is if participants keep up their LSVT exercises post-treatment.
 
Another good reference: Tools and tips for maintaining improvements in communication, mobility, and activities of daily living following LSVT LOUD and LSVT BIG:
https://blog.lsvtglobal.com/tools-and-tips-for-maintaining-improvements-in-communication-mobility-and-activities-of-daily-living-following-lsvt-loud-and-lsvt-big/ 

Nutrition

QUESTION: Is including vegetables in soup adequate for vegetable intake?
MATT BEKE: Possibly. Generally, a serving of cooked vegetables is around 1 cup. We recommend adults consume at least two servings of veggies each day. If your soups are chock-full of veggies, or are primarily veggie puree, then it is possible to consume a significant amount of veggies via soup.

QUESTION: Do dried fruits (prunes, apricots, etc.) work as well as fresh fruit? 
MATT BEKE: Dried fruits can be a part of a healthy diet. The recommendation for fruit consumption is 3 cups per day. At least half, or 1.5 cups, of your fruit intake should come from whole fruit (fresh or frozen) each day. Regarding constipation, prunes may be helpful for some people, although berries and kiwi seem to reduce constipation symptoms more often. More research is needed to evaluate which foods may be better for constipation in people affected with PD.

QUESTION: Using MiraLAX daily works great for me, but I am concerned that daily use could have negative long-term effects. 
MATT BEKE: Thankfully, there is no evidence to suggest that Miralax causes dependency. It’s important to remember that bowel function typically changes over the progression of the disease. Thus, the amount of Miralax, or other bowel product, you take may need to be modified over time to continue experiencing benefit.

QUESTION: Do “Balance of Nature” products help/hurt/neutral?
MATT BEKE: Fruit and vegetable supplements are never going to be as good as eating the real thing. Supplements from companies like Balance of Nature may provide a significant amount of vitamins and minerals, but will lack the phytonutrients and fibers that come from the whole fruit. In my professional opinion, they are unlikely to be worth their cost.

QUESTION: Please provide more examples of red fruit other than strawberries and raspberries.
MATT BEKE: I believe this question is in regard to the comment about how berries may be especially neuroprotective. Fruits and vegetables with a dark red, blue, or purple color are likely to contain significant amounts of anthocyanadins, which is the phytonutrient thought to be neuroprotective. This would include strawberries, raspberries, blueberries, blackberries, blackcurrant, grapes, red cabbage, black carrots, purple corn, etc.

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Speaker Bios

About Dr Ihtsham ul Haq MD, FAAN
Division Chief of Movement Disorders
Department of Neurology
Presentation Topic:  "Unlocking the Mysteries of Parkinson's: The Latest in Research and Diagnosis." This talk will discuss our current understanding of why and how Parkinson’s disease occurs, and how that knowledge is driving our search for better treatments and ultimately a cure.  
 
Dr. Ihtsham Haq joined the University of Miami as Chief of the Movement Disorders Division in September of 2020.  His passion for the study of the brain began at Columbia University, at which he completed degrees in Bioengineering and in Philosophy. He obtained his medical degree at SUNY Downstate and his Neurology residency training at Georgetown University. After his residency he spent three years at the University of Florida’s Movement Disorders & Neurorestoration program at the Norman Fixel Institute for Neurological Diseases performing his movement disorders fellowship training. From there he was recruited to the Wake Forest School of Medicine in North Carolina. He spent the next ten years there and reached the position of Associate Professor in Departments of Neurology and Neurosurgery. Highlights of his tenure at WFSM include bringing it into the NIH’s premier early clinical trial research consortium NeuroNext, performing pioneering brain implantations for the treatment of Tourette syndrome and obsessive-compulsive disorder, and working on multiple NIH-funded projects to phenotype the motor and nonmotor effects of basal ganglia disease.
 
Dr. Haq’s overall research interest has been in understanding and improving the care of patients with movement disorders, with a focus on technology and brain circuitry. He has been funded by the National Institute of Health, Parkinson’s Foundation, and Smallwood Foundation, as well as partnering with industry to bring better treatments to patients. His NIH funded research has included work on both common (Parkinson’s & Alzheimer’s disease) and rare disorders (ATP1A3 rapid onset dystonia syndrome). He has been performing Deep Brain Stimulation (DBS) surgeries since 2006 and has been part of pioneering efforts to improve targeting, increase the types of devices available to patients, and expand the number of diseases that treated by the technique. In addition to using DBS to treat Parkinson’s disease, Essential Tremor, and Dystonia, he has used it to treat patients with medication-refractory Tourette’s syndrome and Obsessive-Compulsive Disorder. Dr. Haq has also worked to advance the success of clinical trials, and shortly after being selected to the NIH Clinical Trial Methodology Course in 2017, served as the CoPI of the Wake Forest site for NeuroNext. He has published 50 articles and 3 book chapters.
 
Since joining the U two years ago, Dr. Haq has overseen rapid growth in the Movement Disorders division. The division now includes six fellowship-trained movement disorders specialists, two advanced care practitioners, and three resident physicians recruited to fellowship training for 2023, practicing across six clinics in South Florida. He has established new partnerships with the American Parkinson’s Disease Foundation and Parkinson’s Foundation of Southwest Florida, as well as substantially deepening the divisions longstanding relationship with the national Parkinson’s Foundation. From a trials standpoint, UM is now collaborating on more than 30 industry, NIH, and foundation-funded studies. With respect to DBS, UM implanted more than 90 leads in 2021 and were part of the pivotal trials for both Boston Scientific and Abbott’s DBS devices. He has also made it a focus to take concrete steps to ensure historically underrepresented patients are provided that opportunity to participate in research at UM, including pipeline programs, advocacy, and disparity research. He considers it a privilege to lead this dedicated, compassionate, and experienced team of providers as it strives to redefine the standard for the understanding and care of movement disorders.  

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About Dr. Bhavana Patel
Presentation Topic: "Advancements in Management of Parkinson Disease." This talk will review recently approved treatments for Parkinson disease, optimal management of PD with a multidisciplinary approach and upcoming treatment strategies.

Dr. Bhavana Patel, DO, MS is currently an assistant professor in the Division of Movement disorders and Behavioral Neurology at the University of Florida. She joined the UF Department of Neurology and the Fixel Institute in 2019.
Dr. Patel graduated from Butler University in 2008 with a double major in chemistry and Spanish, followed by a Master’s degree in Biology at Purdue University in Indianapolis. She completed medical school at the West Virginia School of Osteopathic medicine in 2013, followed by a preliminary internal medicine year and neurology residency at University of Kansas in 2017. During her residency she received awards for her residency research projects and was recognized by the medical student body for her excellence in teaching. In her final year of training she served as Chief Resident.
Upon completion of her neurology training she pursued a two year fellowship in Movement Disorders and additional training in cognitive disorders and dementias at UF from 2017-2019. She has a personal connection to Dementia with Lewy Bodies and during her training she completed additional clinical and research training in Lewy Body disease under the mentorship of Dr. Melissa Armstrong. In 2018 she was the inaugural recipient of the Clinical Research Training Scholarship in Dementia with Lewy Bodies from the American Brain Foundation and the Mary E. Groff Charitable trust, in collaboration with the American Academy of Neurology.

Dr. Patel’s research interests include improving the delivery of specialized healthcare in Lewy body dementia, applications of technology to improve health outcomes, and neurostimulation for movement and cognitive disorders.
Currently her NIH funded research focuses on developing a LBD centric telemedicine program with access to a multidisciplinary team of exerts in LBD and using smartwatch technology to objectively measure life space mobility.
She has presented her research at multiple international conferences including an International Lewy Body Dementia Conference, International Congress of Parkinson’s Disease and Movement Disorder Society, Academy of Neurology, and World Parkinson Congress.

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CEDUCATION SYMPOSIUM Panelists 2023 by Patrice T Shields