Over time, surgical therapies have improved treatment options for a generation of people with Parkinson’s disease (PD) who experience worsening motor fluctuations and dyskinesia. Lesion therapies, such as deep brain stimulation (DBS), are powerful options for people with these troublesome symptoms. Levodopa/carbidopa intestinal pump therapy (Duopa) provide an option for symptom relief without brain surgery. In this month’s edition of What’s Hot in Parkinson’s disease, we examine the results of the recently completed apomorphine TOLEDO pump trial, a new study examining subcutaneous apomorphine infusion (a pump therapy that delivers PD medication similar to insulin pumps for diabetes). These results may influence an individual’s decision to pursue levodopa/carbidopa intestinal gel pumps (Duopa) or deep brain stimulation.

About subcutaneous apomorphine treatment

Recently, there has been hope among the PD community that subcutaneous apomorphine treatment may  provide a less invasive option to directly address troublesome motor fluctuations. A person with Parkinson’s or a caregiver can administer the setup and procedure of a pump. A small delivery tube is placed under the skin and connected to an external pumping device filled with apomorphine. Duopa pump therapy a similar option, however is more prone to complications associated with the gastroduodenal levodopa/carbidopa gel delivery tube.

Prior to the recently published TOLEDO trial, subcutaneous apomorphine infusion had only been tested in open-label studies, which lacked control groups or the use of a placebo to more accurately test the treatment. Regina Katzenschlager, MD, and colleagues conducted a randomized placebo controlled multicenter double-blind study — the gold standard of research studies — utilizing 23 clinical trial centers across Europe and published their findings in the July issue of Lancet Neurology. 

How does the TOLEDO trial help people with Parkinson’s?

Though there were 107 people with Parkinson’s enrolled in the study, 36 did not complete the full double blind observational period. Participants had to be diagnosed at least three years prior to enrollment. Researchers were most interested in studying people with PD who have persistent motor fluctuations, despite medication. Over the course of the 12-week study, participants were randomized, some receiving three to eight milligrams per hour of apomorphine subcutaneous injections, while others received a placebo saline infusion. The infusions were only administered during waking hours — approximately 16 hours a day. The flow rates for the devices and the PD medications could be adjusted during the first four weeks of therapy. 

Apomorphine infusion improved off time by more than two hours a day; however, it surprisingly did not influence quality of life. The primary outcome variable for the study was the change in daily dopaminergic off medication time. The apomorphine infusion reduced off time compared with placebo. Data from 106 participants was analyzed. Six subjects in the apomorphine group withdrew and 44 percent had nodules (growth of tissue) where the pump was infused. The most common side effects were erythema (reddening of skin) at the infusion site, nausea and dyskinesia.

The dyskinesia scores among participants were so mild that it would be hard to judge how the apomorphine therapy would have performed if administered to moderate to severe dyskinesia cases. However, one could speculate that the apomorphine infusion would likely worsen dyskinesia as it did in 15 percent of subjects who were randomly chosen to receive the apomorphine. Finally, the four-week period where medications and apomorphine could both be simultaneously adjusted in the study, made the results difficult to evaluate. Regardless, since the study design was double blind, there was a clear benefit in improving on dopaminergic time in the apomorphine, but not in the placebo group.

What is the bottom line for the PD community? 

If you are experiencing mild to moderate Parkinson’s motor fluctuations, apomorphine infusion treatment may be beneficial — even though it is not FDA-approved in the U.S. It would make sense to try a subcutaneous apomorphine before trying the more invasive levodopa/carbidopa intestinal gel pumps or deep brain stimulation.

Unlike apomorphine infusions, both the Duopa levodopa/carbidopa intestinal gel pump and DBS have been associated with improvements in quality of life. Collectively, research suggests that both the Duopa pump and DBS approaches would have greater benefits than apomorphine infusions but have increased risks. 

Deep brain stimulation remains the most powerful treatment for severe dyskinesia. In some cases, apomorphine infusions may worsen dyskinesia. The implications of forming nodules and erythema where the pump is inserted, for short and long term apomorphine infusion treatment, remains unknown. Future and hopefully larger comparative studies can help guide people with Parkinson’s and doctors in therapy choices. 

Selected References:

Regina Katzenschlager, Werner Poewe, Olivier Rascol, Claudia Trenkwalder, Günther Deuschl, K Ray Chaudhuri, Tove Henriksen, Teus van Laar, Kevin Spivey, Senthil Vel, Harry Staines, Andrew Lees. Apomorphine subcutaneous infusion in patients with Parkinson’s disease with persistent motor fluctuations (TOLEDO): a multicentre, double-blind, randomised, placebo-controlled trial. Lancet Neurology. Published online July 2018.

Okun MS. Subcutaneous Apomorphine Treatment: Results of the TOLEDO Trial. NEJM Journal Watch Neurology, 2018.

Wearing an elastic abdominal binder (a medical version of a girdle available in most drugstores) may help prevent low blood pressure on standing in people with Parkinson’s disease (PD), according to research published in the November 27 online edition of Movement Disorders Clinical Practice.

Many people with mid- and late-stage PD experience a sharp drop in blood pressure when standing up from a sitting position. This symptom is also common among people living with the atypical parkinsonism known as multiple system atrophy (MSA). The medical term for it is neurogenic orthostatic hypotension (nOH), and it can make a person feel dizzy, lose their balance and fall or even lose consciousness. Treating orthostatic hypotension with drugs that raise blood pressure is tricky — the medicines can prevent dizziness when standing up, but can make blood pressure too high when lying down.

Studies in people with other conditions that lead to orthostatic hypotension, including diabetes, have suggested that wearing an elastic abdominal binder — a wide elastic band that supports the stomach — helped them maintain a steady blood pressure.
Researchers led by Klaus Seppi, M.D., at the Innsbruck Medical University in Austria tested the treatment in 15 study participants who had PD and orthostatic hypotension. First, they monitored each study participant’s blood pressure during a “tilt test,” during which participants lay on a flat examining table, which is then raised to a seated position. Then participants wore either an elastic abdominal binder or a placebo binder — one that did not put pressure on the abdomen — for two hours and repeated the test. On a different day the participants switched binders and were tested again. Then all participants wore the elastic binders a few hours a day for four weeks and were assessed again.

Results

• On average, blood pressure was about 10 mm Hg higher when participants sat up wearing the elastic abdominal binder versus the placebo binder.
• Lying-down blood pressure remained the same no matter which binder the participants wore.
• Using an elastic abdominal binder daily for four weeks improved symptoms of orthostatic hypotension.

What Does It Mean?

The study authors conclude that elastic abdominal binders may provide a simple tool to alleviate the troublesome PD symptom of orthostatic hypotension. For some, it may be worth trying because it involves no drugs that might interact with other PD medications, and there is no risk of raising overall blood pressure in people whose blood pressure is already generally high.  
Limitations of the study include the fact that the number of study participants was small and the study was not double blinded (participants knew which group they were in).

In addition, one side effect that remains to be investigated is the possibility that abdominal binders exacerbate varicose veins in the legs. Therefore, a larger, controlled trial will likely need to be performed before abdominal binders receive broad endorsement. In the meantime, talk with your physician to see if you might benefit from this simple tool to help manage orthostatic hypotension.

Every day, potentially groundbreaking Parkinson’s disease (PD) research ideas are explored in labs funded by the Parkinson’s Foundation. Since research never stops, I am excited to share our latest Parkinson Report newsletter with you that focuses on a topic that is critical to the Foundation and our community: research.

In this special issue, we are excited to announce four new Research Centers. These centers will receive Foundation funding dedicated to developing the latest in treatment and better understanding this disease. Read more about these centers and how we will work together to find the next PD breakthrough.

Scientists play a critical role in advancing Parkinson’s treatments. More than 500 scientists have received funding from the Parkinson’s Foundation, like James Dahlman, PhD (page 9), who conducts thousands of drug delivery tests at the same time.

In addition, learn more about the future of PD research with these articles:

• Announcing New Centers of Excellence
• Ask the Doctor: Research Edition
• PD Medications: What’s New
• Women and PD Research

We are optimistic and excited to fund the most innovative and dedicated research initiatives among those new to our field and experts, alike. It is only a matter of time until we evolve precision treatment, revolutionize therapy options and ultimately, cure Parkinson’s.

Sincerely,

James Beck, PhD
Chief Scientific Officer
Parkinson’s Foundation

Every year, the top Parkinson’s experts from around the world who treat people with Parkinson’s at a Parkinson’s Foundation-designated Center of Excellence (a department or clinic within a hospital that specializes in PD) convene to discuss the latest Parkinson’s research and treatments. This article summarizes the 2018 Center Leadership Conference presentation on music therapy led by Concetta M. Tomaino, DA, LCAT, MT-BC, Executive Director and Co-Founder of the Institute for Music and Neurologic Function in New York City. Read the articles covering some of the other topics discussed: intimacy issues, new therapies in trial and oral health.

Music therapists are professionals who are academically trained and board certified to improve the everyday lives of their patients. More specifically, when people with Parkinson’s disease (PD) work with a music therapist they see improvements in movement symptoms, speech, cognitive issues and mental health. Through dance programs, choirs and drumming programs, music therapy helps people with PD maintain function, express creativity and experience a better quality of life.

Music therapy can help someone with PD with:

• Balance: Stride length, posture and side-to-side movement can improve with music therapy.
• Communication: Singing can increase volume and articulation, as well as swallowing function. Humming exercises can relax tense vocal folds.
• Cognition: Singing lyrics can improve memory issues. Music-based cues can help with recall, recognition and attention span.
• Mental Health: People with PD often experience anxiety, fatigue, sleep problems, depression and more. Music allows for self-expression and self-discovery that can combat these feelings.
• Social Isolation: Music therapy, particularly group activities, allow for building connections with others, which can help with isolation.

What does a Parkinson’s music therapy class consist of? Led by a music therapist, a group class generally begins with a vocal warm-up that can be accompanied with drumming or hand instruments. While each class varies, they can include singing songs while following lyrics displayed on a large screen, singing familiar songs to motivate participants and jog memories, and singing exercises. Music therapy can also include dancing or seated exercises that help people with PD maintain range of motion, endurance, strength, coordination and balance.

Music therapy uses rhythm, melody and preferred movement to address issues that commonly affect people with PD, such as bradykinesia (a slowness of movement that can lead to difficulties with activities of daily living).

Why is rhythm so effective? Rhythm becomes a template for organizing a series of movements, as well as combat cognitive issues that affect movement function, such as attention and focus. Rhythm helps coordinate movement, stimulate attention spans and induce relaxation.

As long as participants can feel the beat, music therapy can help lead to better outcomes in physical exercise programs. Sometimes finding that is a challenge, but a music therapist can work to find a rhythmic pattern or musical style that resounds with you — making music therapy both effective and enjoyable.

For more information about music therapy or where to find a music therapist near you, contact the Parkinson’s Foundation Helpline at 1-800-4PD-INFO (473-4636) or Helpline@Parkinson.org.

Every year, the top Parkinson’s experts from around the world who treat people with Parkinson’s at a Parkinson’s Foundation-designated Center of Excellence (a department or clinic within a hospital that specializes in PD) convene to discuss the latest Parkinson’s research and treatments. This article summarizes the 2018 Center Leadership Conference presentation on oral health by neuroscientist Cameron Jeter, PhD, The University of Texas Health Science Center at Houston; speech-language pathologist Linsey Heidrick, MA, CCC-SLP, University of Kansas Medical Center; geriatric dentist Marsha Pyle, DDS, University of Missouri-Kansas City; and moderator Irene Litvan, MD, UC San Diego School of Medicine. Read the articles covering some of the other topics discussed: intimacy issues, art therapy, new therapies in trial and music therapy. 

Maintaining oral health is important for people with Parkinson’s disease (PD). Parkinson’s symptoms can easily complicate dental care. A panel of PD experts at a Parkinson’s Foundation conference recently discussed oral health and saliva management – two PD-related issues not discussed often enough.

When it comes to Parkinson’s and oral health, the goals are to preserve dental health and minimize the negative impact disease treatment may have. People with PD commonly experience problems related to the four “dreaded D’s” of oral health:

• Dry mouth
• Drooling
• Dysphagia (difficulty swallowing)
• Deadly oral bacteria

Why are these conditions dreaded? Beyond the discomfort and inconvenience, they impact quality of life and can even have the potential to create life-threatening situations for people with PD.

While many people think drooling is caused by excess saliva, in PD it is actually attributed to dysphagia. When severe, drooling can be an indicator of serious problems swallowing, which can cause people to choke on foods and liquids. In extreme cases, it can lead to aspiration pneumonia — the leading cause of death for people with PD.

Oral health problems arise directly and indirectly from the progression of PD. For example, people with PD often have dry mouth, which can be caused by the disease process or medication side effects.

Movement-related symptoms also present a challenge in PD oral care. Tremors can interfere with brushing and flossing. These problems can be compounded by depression or cognitive changes when some people’s ability and willingness to engage in routine dental care decreases. Then, as people have tooth and gum loss, their ability to chew well also decreases.

However, there are ways people with Parkinson’s can maintain oral health. These 11 tips from the experts can help with oral health and swallowing problems:

1. Engage in frequent and thorough oral care. Be sure to brush right after every meal.
2. Stay hydrated.
3. Eat and drink in an upright position.
4. Take small bites and sips.
5. Avoid talking when eating.
6. After eating a meal or snack, check the inside of cheeks for any food pocketing.
7. Consider a special toothbrush (www.colliscurve.com) or adaptive grip aids to make toothbrushing easier. If you prefer an electric toothbrush, be sure it is an oscillating, rotating power toothbrush.
8. If you experience dry mouth, try over-the-counter remedies. The ideal product will be sugar-free, have preventative qualities, be easy to apply and have a pleasant taste.
9. Avoid products that include alcohol; they make dry mouth conditions worse.
10. Your doctor or dentist can recommend special products like toothpaste and gels that can help with dry mouth and other oral health problems.
11. Have your oral health providers work collaboratively with your other healthcare providers to improve oral health-based quality of life.

Visit our Dental Health page to learn more about Tips for Preventing Dental Problems and Treating Dental Issues.

Though dizziness and vertigo have been commonly reported in the setting of Parkinson’s disease (PD), the diagnosis may be missed and treatment may not be optimal. The terms dizziness and vertigo can be defined in many ways. Most experts agree that the terms refer to a sensation of spinning or whirling and that the sensation has been frequently associated with balance problems. The Parkinson’s Foundation 1-800-4PD-INFO (473-4636) Helpline and PD Conversations have received many questions on the topic of dizziness, vertigo and Parkinson’s disease. In this month’s What’s Hot in PD? column, I will review the topic and summarize the most common management strategies.

Van Wenson and colleagues recently analyzed a consecutive cohort of Parkinson’s disease patients. There were 305 patients and 49% complained of dizziness. Of these cases, 38% had orthostatic hypotension and 8% had benign paroxysmal positional vertigo. There were another 3% suffering from a less classical type of benign paroxysmal positional vertigo. The prevalence of benign paroxysmal positional vertigo in Parkinson’s patients was 5.3% and over 90% of cases improved with treatment (Van Wenson, 2013).

Common Causes and Tips to Cope with Dizziness and Vertigo in PD:

• Orthostatic hypotension: a change in blood pressure when changing position from sitting to standing or from lying to sitting or standing. This condition is treated with hydration (6-8 glasses of water a day), compression stockings, adding salt to the diet and possibly by medications such as Florinef, Midodrine, Droxidopa, or Mestinon. Orthostatic hypotension, which can also be associated with syncope or “passing out,” is the most commonly overlooked cause of dizziness in Parkinson’s disease patients.
• Medication-induced dizziness or vertigo: the most common drugs associated with dizziness or vertigo in PD are dopamine agonists. Medication-induced dizziness is typically treated by weaning the dosage and by slowly discontinuing the offending drug(s). Common drugs associated with dizziness include anticonvulsants, antihypertensives, antibiotics, antidepressants, antipsychotics, pain medications and anti-inflammatory drugs.
• Deep Brain Stimulation (DBS): this surgical procedure can be associated with dizziness or vertigo. The issue usually emerges soon after surgical implantation. It is important to determine if the dizziness is present with the device activated or when the device is in the off position. The first step is to turn off the device and to observe and document if the sensation resolves. If the dizziness resolves, then check the location of the electrode in the brain and consider re-programming the device.
• Benign Paroxysmal Positional Vertigo (BPPV) can be diagnosed using examination maneuvers such as the Dix-Hallpike maneuver. A common complaint of BPPV is dizziness when turning in bed or dizziness lasting only a few seconds. Referral to a physical therapist who is an expert in vestibular rehabilitation can be helpful. Alternatively, teaching the patient to use a maneuver such as the Semont maneuver can be a reasonable approach.
• Migraine headaches: dizziness or vertigo can sometimes be the effect of migraine headaches. In most cases, treatment of the headache can resolve the dizziness. Some experts refer to this entity as migraine-induced vertigo.
• Transient ischemic attack or stroke: sudden onset of dizziness, usually in the presence of other neurological signs, could possibly be a transient ischemic attack or stroke. If a stroke is suspected, you should seek medical attention immediately and undergo appropriate imaging and potentially stroke-related therapies.

Selected References:

1. Van Wensen E, van Leeuwen RB, van der Zaag-Loonen HJ, Masius-Olthof S, Bloem BR. Benign paroxysmal positional vertigo in Parkinson's disease. Parkinsonism Relat Disord. 2013 Dec;19(12):1110-2. doi: 10.1016/j.parkreldis.2013.07.024. Epub 2013 Aug 13. PubMed PMID: 23948517.

2. Zeigelboim BS, Klagenberg KF, Teive HA, Munhoz RP, Martins-Bassetto J. Vestibular rehabilitation: clinical benefits to patients with Parkinson's disease. Arq Neuropsiquiatr. 2009 Jun;67(2A):219-23. PubMed PMID: 19547812.

You can find out more about our National Medical Director, Dr. Michael S. Okun, by also visiting the Center of Excellence, University of Florida Health Center for Movement Disorders and Neurorestoration. Dr. Okun is also the author of the Amazon #1 Parkinson's Best Seller 10 Secrets to a Happier Life and 10 Breakthrough Therapies for Parkinson's Disease.

All Science News articles summarize a research study and are not an official opinion, endorsement or position of the Parkinson’s Foundation’s.

Usually, the first Parkinson’s disease (PD) symptom that causes people to seek medical attention is resting tremor. Three out of four people in the early Parkinson’s stages experience it. Done without conscious control or choice, a resting tremor is an involuntary, rhythmic muscle contraction that causes shaking/tremor. Most often initially detected in the hand, resting tremor may also begin in the foot or face. While the term “resting tremor” may sound benign, people with PD describe it as a symptom that is impossible to escape, socially isolating, career-ending and a constant reminder that the disease will only get worse.

Standard, first-line treatment for PD resting tremor is the combination therapy of carbidopa and levodopa. Its success rate is variable and with long-term use, commonly leads to abnormal involuntary movements called dyskinesias. Deep brain stimulation (DBS) — which involves surgically implanting small electrodes into specific brain regions — is another treatment for PD tremors. DBS delivers pulses of electricity into the brain and works like a pacemaker to help counteract abnormal brain activity in PD. Traditionally, doctors have reserved DBS for later stages of PD, when medications are no longer working and quality of life is deemed unacceptable. However, that delay in recommending DBS may be changing.

A recently published study in the journal, Neurology, titled, “Effects of deep brain stimulation on rest tremor progression in early-stage Parkinson disease” (Hacker et al., 2018), involved a post hoc analysis (an additional analysis after the study finished that was not part of the original study design) as to whether having DBS in the early stages of PD might specifically improve resting tremor.

A total of 28 people with PD (25 men, 3 women) ranging in age from 50 to 75, and with no history of dyskinesia or motor fluctuations, participated in the two-year study. Patients were randomly assigned to receive either optimal drug therapy alone (ODT), or DBS with drug therapy. A well-accepted, reliable, battery of tests designed to evaluate motor function, called the Unified Parkinson’s Disease Rating Scale–III (UPDRS-III), was conducted at baseline. The UPDRS-III was accessed on medication, and also off medication (after a one-week therapeutic washout). These on and off medication measurements were then repeated every six months for 24 months. Areas evaluated included the limbs, defined as hands, legs, and face. A participation satisfaction survey was also administered.

Results

From baseline to 24 months:

• 86% of medication-only patients developed a resting tremor in previously unaffected limbs, as compared to only 46% of patients receiving DBS and medication.
• While the total UPDRS-III scores off medication did not differ between the groups, rest tremor measured off medication was 3.1 points better for the patients receiving DBS and medication, compared to the patients receiving medication only. Rest tremor was the only measure from the UPDRS-III that showed a statistically significant improvement­ – meaning, these findings are unlikely random or due to chance, but are instead meaningful and potentially causal, i.e., DBS + medication worked better.
• Rest tremor scores measured on medication improved over the two years for the DBS and medication group, while they worsened for the medication only group. At the end of the two years, the difference between the two groups was statistically significant. 
• In the medication-only group, the average number of limbs affected by tremor doubled, whereas it decreased slightly in the DBS and medication group.
• In the patient satisfaction survey, nearly half said the greatest benefit of undergoing DBS was the management of their tremor. Note: DBS is also used for bradykinesia (slowness of movement), and rigidity.

What Does This Mean?

This Hacker et al. (2018) study suggests that having DBS in the early stages of PD may not only improve resting tremor, it may also slow the progression. The possibility of diminishing such a distressing symptom could be a game changer for those who have had to put activities, work, and interests on hold due to their tremor. As with any surgery, DBS is not without risk. This is brain surgery, involving two holes being drilled into one’s head. Serious or permanent complications are rare, but they happen.

This study does have some limitations. It was a small study, involving just 28 people. In addition, some of the analyses done were post hoc, which means they were conducted after seeing the data. In most clinical trials, the primary outcome measure (what the researcher thinks will demonstrate the greatest therapeutic benefit) is decided before the trial ever takes place. While the post hoc analysis showed an interesting relationship between DBS and slowed rest tremor progression, more studies are needed to further test this hypothesis.

Learn More

The Parkinson’s Foundation believes in empowering the Parkinson’s community through education. For more information on medications and deep brain stimulation, read our books Parkinson’s Disease: Medications and A Guide to Deep Brain Stimulation.

For more insights on this topic, listen to our podcast episode “What is Deep Brain Stimulation?”.

To offer more support to the nearly one million people in the U.S. living with Parkinson’s disease (PD), the Parkinson's Foundation has expanded its Helpline hours. You can call with the Helpline with your PD questions at 1-800-4PD-INFO (473-4636), in English and Spanish, Monday through Friday from 9 a.m. to 7 p.m. ET.

The Parkinson’s Foundation Helpline provides guidance on:

• current disease information
• medical issues including symptoms and treatments
• health and social care
• emotional support
• referrals to local health professionals

We recently asked the trained Parkinson's information specialists who answer Helpline calls to share the answers to the most frequently asked questions below. If you have a question that is not listed below, please call our Helpline!  

Q: Can the Helpline provide me with Parkinson’s specialists, exercise classes and support groups? 

A: Yes. The Helpline can provide names of Parkinson’s movement disorder specialists, neurologists and other Parkinson’s specialists — like a physical therapist, occupational therapist, speech therapist and more — in your area. Helpline specialists can also provide nearby exercise classes and support groups.

Q: Is there a special diet that can help with my Parkinson’s?

A: A balanced, nutritious diet is important in Parkinson’s. The best plan is to maintain a full diet with all the daily nutritional requirements — try to eat lots of fruits and vegetables, lean proteins and whole grains. Many doctors recommend the Mediterranean diet for its ability to help reduce blood pressure and cardiovascular disease. Also, try to drink plenty of water to help with constipation.

Q: My family member told me about a vitamin/supplement/tea that can relieve PD symptoms. Does it work?

A: Many people add vitamins to their treatment regimen, incorporating antioxidants such as vitamin B6, vitamin E, vitamin C, Coenzyme Q10, glutathione, in the hope of slowing the disease. Be wary of new supplements that claim to cure multiple symptoms, as they often lack rigorous testing. Since Helpline specialists stay up-to-date on PD treatments, call to discuss any supplement you hear about.

Q: Should I not eat protein when I take carbidopa/levodopa (brand name Sinemet)?

A: Most people who are newly diagnosed will not have a problem. For some people, particularly those living with PD for many years, eating protein-rich foods limits the effectiveness of levodopa. Most people who have trouble with Parkinson’s related to a diet high in protein report that their medications are not working. Levodopa works best when taken on an empty stomach. Taking it 30 to 45 minutes before eating can help.

Q: As the primary caregiver, I find myself frequently feeling overwhelmed and unable to keep up with my own needs. What should I do?

A: Up to 70 percent of caregivers are significantly stressed and half meet the criteria for clinical depression. Take immediate action when you find you are ignoring your own needs, feel isolated, experience anxiety, resentment, demoralization or depression. Try to alleviate caregiver stress by recruiting friends and family or hiring a paid caregiver to help with care. Don’t wait, and get help managing caregiver-related anxiety, stress or depression by seeing a psychologist or therapist. Remember that you need to take care of yourself to be well enough to take care of others.

Q: Is there financial assistance available for people with Parkinson’s?

A: While the Foundation does not give financial aid, Helpline specialists provide referrals to organizations that may be able to help with financial assistance for medication, transportation, basic needs and respite or nursing home care. A good place to start is to locate your nearest Area Agency on Aging office through the Eldercare Locator Service for help finding financial aid and related programs. Our specialists can also give information about various government social service programs.

Q: What other therapies can help with my Parkinson’s symptoms?

A: A comprehensive and multi-disciplinary approach to health care can be very beneficial at any stage of Parkinson’s. Building a healthcare team involves taking advantage of not only the expertise of a PD specialist, but the help of a physical therapist, occupational therapist, speech therapist, nutritionist, social worker and others. Some may be able to find all of these professionals in one practice or center, but many will have to explore their community’s resources.

While we are happy to discuss any issue with you, calling our helpline is not a substitute for seeing a doctor.

No one should have to face Parkinson’s alone. Call the Parkinson’s Foundation Helpline today at 1-800-4PD-INFO (473-4636) or email us at Helpline@Parkinson.org with your Parkinson’s questions in English or Spanish.

This isn’t a solicitation for a financial donation. But I am going to ask for something valuable that is in short supply and critical to getting an approved therapy to slow the progression of Parkinson’s disease (PD), and move us closer to a cure. It is something you can do to improve the lives of people with PD and take an active role in the Parkinson’s community. Only you have the power to do this. 

The discovery that clumping of a misfolded protein in the brain (called alpha-synuclein) causes loss of dopamine neurons and dysfunction in other areas of the brain and nerves that control bodily functions provides opportunities for new Parkinson’s therapies. The research community is excited that preventing this protein clumping process or clearing these toxic clumps may be able to slow or stop the progression of Parkinson’s disease.

However, we still don’t have biomarkers, such as a blood test, that allows us to assess PD progression and test promising therapies in people with PD. Therefore, our best opportunity to test a new potential disease modifying therapy is to see if it can slow progression of PD signs and symptoms in people who were recently diagnosed with early PD and who are not taking symptomatic medications (like levodopa, dopamine agonists, amantadine, or MAO-B inhibitors).

But this poses a difficult challenge! Those diagnosed with early PD based on a combination of bradykinesia (slow and small movement), rigidity (stiffness) and tremor (shaking), can usually only go about six to twelve months before they will want or need medication to relieve symptoms.

Ideally, researchers would like to observe patients in a clinical trial to test a potential disease slowing medication immediately following diagnosis, and for as long as possible. This gives us the best chance of identifying a difference in the rate of progression between those treated with active (“real”) study medication and those treated with placebo. The shorter the testing period, the more difficult it is to identify the beneficial effect of a disease slowing medication. Conversely, the longer the testing period, the more obvious a slowing effect should be.

However, if the proposed time period to test the new medication is too long, many patients will need symptomatic treatment, and researchers will lose their ability to monitor clinical disease progression. Therefore, most trials of potential disease slowing medications in early PD observe patients for about six months to a year.

The key problem is that patients with early PD who are able and willing to enroll in a clinical trial, and whose PD symptoms are mild enough to go up to a year before starting symptom medications are in short supply. To test promising disease slowing therapies, patients with early PD must be identified as early as possible and referred to centers hosting a clinical trial before beginning symptomatic PD medications. Unfortunately, this process fails too often. Patients often wait to seek treatment until their symptoms become troublesome. After all, why see a doctor when you don’t need treatment? However, research-wise it is then too late to participate in an early PD disease slowing trial. Additional unwanted delays may also occur between the time it takes to make an appointment and be seen.

In another disappointing scenario, patients with early PD are diagnosed and immediately placed on symptom medication, even though it’s not immediately required. The doctor may do so instinctively and without considering the lost research opportunity. Of course, immediately beginning medication may be necessary in cases where progression has been swift or if necessary to maintain employment.

The critical time of about one year from an early PD diagnosis until symptom medication is required is called the “Golden Year” for participation in disease slowing clinical trials. It is critical that care providers and patients don’t unknowingly waste this Golden Year.

Therefore, I ask this of care providers and patients:  

Care Providers: When you diagnose early PD, please don’t unnecessarily institute symptomatic therapy. Evaluate whether a clinical trial for early untreated PD patients is being conducted within a reasonable distance and discuss the possibility of participating with your patient. At a minimum, let your patient know that there are early PD disease modifying trials being conducted and they may want to learn more about the trials before beginning therapy. Centers conducting such trials would be delighted to discuss ongoing trials with your patient.

Patients: If you have new onset of tremor or slowness, or if a care provider says you may have PD, don’t wait until your condition worsens to the point that you feel you need treatment. Seek evaluation with a specialist as soon as possible. If you are diagnosed with PD, ask about clinical trials. Search online for open trials you can enroll in by visiting ClinicalTrials.gov and Parkinson.org/ClinicalTrials. In addition, if you are diagnosed with PD and your doctor wants to begin medication immediately, consider seeking a second opinion from a center that conducts clinical trials. If you explain that you were recently diagnosed and interested in learning about clinical trials that center will often quickly provide you with an appointment.

Our ability to test promising new potential disease slowing therapies depends on both patients and health care providers understanding the critical value of the Golden Year in PD. I hope that individuals with early PD will consider participating in clinical trials, and the earlier, the better.

The journey to a cure will likely be incremental. If a medication does not work, we want to find out, discard it, and move on to other promising new therapies. Once we demonstrate that a therapy can slow disease progression, we will want to improve on it or find other therapies that can also slow progression and perhaps use them together.

We also need to ensure that clinical trials are designed to meet the needs and priorities of the PD community. This can only be done by working with people with PD to design and implement clinical trials, such as is done in the Parkinson’s Foundation Parkinson's Advocates in Research program. This model of patient engagement in research is being increasingly mandated by regulatory agencies and study sponsors as critical to the research process. Finally, we must be sure study participants and people with PD involved in research represent the diverse PD population to ensure that new treatments benefit the greater PD community. Once we can slow disease progression sufficiently and can identify patients early enough (even before the onset of slowness, stiffness and tremor), the result will be equal to having a cure. 

This article was written by Robert A. Hauser, MD, MBA, University of South Florida Parkinson's Disease and Movement Disorders Center, a Parkinson’s Foundation Center of Excellence. Dr. Hauser’s primary research interest is in the development of new medical and surgical treatments for Parkinson's, tremor, tardive dyskinesia, dystonia, and restless legs syndrome. 

As your Parkinson’s disease (PD) journey evolves, so do your questions about symptoms, treatment options, research and medications. Whether you live with Parkinson’s or care for someone who does, you are not alone in looking for answers to your big PD questions.

The Parkinson’s Foundation has recently released Frequently Asked Questions: A Guide to Parkinson’s Disease, a new and improved booklet that provides answers to the most frequently asked questions our Helpline receives. Pro tip: every section in the booklet provides additional free resources you can check out to learn more. Order the free book now, read it online or check out some questions and answers below:

Q: Can Parkinson’s be cured?

A: Not yet. However, many PD symptoms can be treated and researchers are making advances in understanding the disease, its causes and how to best treat it.

Q: What are the stages of Parkinson’s?

A: The stages of Parkinson’s correspond to the severity of movement symptoms and to how much the disease affects a person’s daily activities. At all stages of Parkinson’s, effective therapies are available to ease symptoms and make it possible for people with PD to live well.

• Mild Parkinson’s: movement symptoms, often tremor, occur on one side and may be inconvenient, but do not affect daily activities. Regular exercise improves and maintains mobility and balance, it also reduces depression and constipation.
• Moderate Parkinson’s: movement symptoms occur on both sides of the body. The body moves more slowly and trouble with balance and coordination may develop. Regular exercise combined with physical or occupational therapy can help with mobility and balance.
• Advanced Parkinson’s: a person may have great difficulty walking; may be in a wheelchair or bed most of the day. The person will need assistance with all daily activities. Balancing the benefits of medications with side effects becomes more challenging.

Q: How can I find a doctor who can treat Parkinson’s?

A: Treating Parkinson’s requires a team approach involving the person living with Parkinson’s, family members, a physician and other healthcare professionals. People with Parkinson’s are best served by a movement disorder specialist who is an expert in all aspects of the disease, knowledgeable regarding the full range of treatment options and familiar with the cutting edge of clinical and scientific research. The ideal Parkinson’s physician is available to provide advice and care. Our Helpline at 1-800-4PD-INFO (473-4636) can help you find your nearest Parkinson’s specialist.

Q: Is it okay to drink alcohol?

A: Consult your doctor first. Generally, moderate consumption (an occasional drink) should be acceptable for people with PD, if there are no medical conditions or medications that prohibit alcohol use.

Q: Are there any new Parkinson’s drugs on the horizon?

A: There are always several promising new pharmaceutical compounds “in the pipeline” of discovery or development. New surgical approaches and gene therapies for Parkinson’s are also currently being tested. If you are interested in testing new Parkinson’s drugs, consider participating in a clinical trial.

Q: How can I get involved with PD research?

A: You can consider becoming a research advocate and educating your PD community about clinical studies or the development of new therapies. Advocate for funding PD research by joining the Parkinson’s Foundation Parkinson’s Advocates in Research (PAIR) program is a network of research advocates who work to bring educated consumer voices to important issues in Parkinson’s therapy development. 

Visit Parkinson.org/Library or call our free Helpline at 1-800-4PD-INFO (1-800-473-4636), to order Frequently Asked Questions along with any of our educational materials and to speak to a Helpline specialist.