The Future of Parkinson’s Disease Treatments

The Parkinson’s Disease Medication Pipeline
The pipeline for Parkinson’s disease (PD) medications is extremely crowded these days, with multiple medications at various stages of research development. This is very exciting news for the PD community and is a perfect example of the “hope in progress” part of our organization’s motto. It is thrilling to see the research that is underway, especially the potential treatments that have already made it to the clinical trial phase of development. However, this progress brings with it the welcome challenge of keeping track of all the potential compounds that are in research development! Recently, a review was published in the Journal of Parkinson’s Disease which cataloged the 145 compounds that are currently being studied in humans via clinical trials for PD. This is a staggering number and is even more exceptional when you consider the many more compounds that are not quite yet ready for human trials, but are currently being studied in the laboratory in test tubes, cell culture or animal models of PD. The number also does not account for compounds that have been studied in small clinical trials, garnered promising data, and will be studied in larger clinical trials in the near future – but are not being tested in clinical trials right now.

145 is a pretty long list, so we’re not going to cover all of them here. Instead we will examine the science behind some of categories of the disease modifying therapies (more on this below) that are currently being investigated as PD therapeutics in clinical trials, and I will aim to present highlights, not be comprehensive.  In future blogs, we will examine other categories.
Some background on the review
Of note, the review was authored by Kevin McFarthing, Susan Buff and Gary Rafaloff, (along with scientists at The Cure Parkinson’s Trust, a non-profit PD organization based in London, UK). McFarthing, Buff and Rafaloff are three people with PD who have each developed an exceptional knowledge of the current state of PD research and have been heavily involved in explaining that research to the PD community.
Types of medications to treat Parkinson’s disease
Medications in the research pipeline can be divided into two main categories: those that treat the symptoms of PD and those that are disease modifying (which means that they aim to slow down or halt disease progression). Of note, all medications currently available for PD are symptomatic treatments. There is no medication at this time that can affect the progression of the disease. Of course, the PD research community is extremely eager to find a medication that is disease modifying or neuroprotective (meaning it protects the nerve cells from damage or degeneration). There have been many attempts over the past number of years to demonstrate through clinical trials that particular compounds have neuroprotective effects but, to date, these attempts have not been successful.
If you are interested in getting involved in a clinical trial, is a database of all clinical trials for all diseases worldwide. When a clinical trial is registered with

A Discussion with Parkinson’s Disease Care Partners

What does it mean to be a Parksinon’s disease care partner?

Being a care partner for someone with Parkinson’s disease (PD) is a whirlwind of challenges, responsibilities, setbacks and victories. It is a very difficult, but potentially very rewarding role. Knowing that many of you reading this are trying to navigate the complexities of being a care partner, we thought it would be helpful to  hear from others in your situation. If you haven’t already, you might find that reading our Becoming a Care Partner overview will be helpful as well.
For today’s blog, I spoke with three care partners to bring their unique perspectives to our readers who might be grappling with similar issues. Remember, every person with PD is different, their disease progression is different, and each care partner is different – so keep that in mind as you read on. But despite those differences, we think you will find helpful advice, bits of inspiration, and some solace in their stories. All names have been changed for privacy.
Q: What is the most gratifying part(s) of being a care partner for someone with Parkinson’s disease?
Ellen: We have developed a deeper connection and bond. I have also grown personally by taking an active role volunteering with APDA.
Gary: We live with Parkinson’s disease together. We are continually adjusting to this new norm. One priority is a daily exercise routine.
Brenda: I find that the most gratifying part of being a care partner is the intimacy that occurs in providing necessary care for someone you love.
Q: What is the most challenging part(s) of being a care partner?
Ellen: Staying patient and positive. It is difficult to know when to push him and when to back off.  I want to continue to challenge him, but it is sometimes difficult to know what he is capable of.
Gary: Anticipating my wife’s needs to keep her safe on a 24/7 basis…I can never let down my guard.
Brenda:  I would say there are three things that I find the most challenging: 1) Being responsible for EVERYTHING. I still have all my responsibilities from before PD and now I also have to do EVERYTHING my spouse once did. 2) Knowing that I cannot cure or stop my spouse’s disease and I can’t take away his pain. 3) The loneliness of my spouse’s unavailability to share and discuss issues – especially as the dementia increases.
Q: Do you get help from family, friends, neighbors?
Ellen: My husband is pretty self-sufficient, so I do not feel the need to ask for help at this point.  He is ambulatory but struggles with balance. Fortunately, he does not fall. He has had some mild cognitive decline and I worry most about that.
Gary: Yes, they are always available in any circumstance.
Brenda: Yes – we are blessed with WONDERFUL FRIENDS and some family members. They check in and do what they can.
Q: What keeps you going in the tough/challenging moments?
Ellen: Remembering to take a breath and physically give myself some space. I try to find some humor in moments. And

Planning for the What-Ifs: Sleep disorders in Advanced Parkinson’s Disease

Planning for the What-Ifs, Part Five: Sleep Disorders & Advanced Parkinson’s Disease
 Today we continue Parkinson’s Disease: Planning for the What-Ifs, a special series of posts to address both motor and non-motor issues of people with advanced Parkinson’s disease (PD). We are defining advanced PD as those who are no longer independent in their activities of daily living and require help for their self-care such as eating, bathing, dressing and toileting. Remember, PD is a very variable condition and many never reach the advanced stages. Additional background and the full introduction to the series is still available if you missed it.
In previous blogs, we’ve addressed the mental health issues in relation to advanced PD which include: cognitive decline/dementia, depression, anxiety, apathy, psychosis, mania and behavioral problems. We also addressed other topics of advanced PD including falls, extreme immobility, and drooling and swallowing difficulties and urinary and gastro-intestinal issues.
Today we will focus on sleep issues in advanced PD.
Sleep and Parkinson’s Disease
There are many sleep disorders that are associated with PD and that can be problematic throughout the disease course. These include:

Rapid eye movement (REM) behavior sleep disorder (RBD) – a sleep disorder in which the affected person is not paralyzed during dreaming (which is normally what occurs) and can therefore act out his/her dreams
Insomnia – an inability to fall asleep at the beginning of the night or in the middle of the night upon awakening
Restless leg syndrome – uncomfortable sensations, usually in the legs, which are temporarily relieved by movement of the legs
Sleep apnea – a disorder in which breathing stops and starts through the night, leading to periods of low oxygenation in the blood and frequent awakenings
Sleep fragmentation – brief arousals during sleep cause sleep to be less restful

PD medications can interfere with sleep by causing:

Nightmares and vivid dreams
Sleep attacks (falling asleep without warning)

Finally, there are motor and non-motor symptoms of PD that interfere with sleep. These include:

Urinary frequency

In addition to all the sleep issues listed above, people with PD often have fatigue, a complicated non-motor symptom of PD, characterized by a general lack of energy, which is sometimes present even in the face of what seems like intact and restful sleep. This can be due to many causes including PD medications, but can also be independent of medication use.
All of these sleep issues can continue to be problematic for the person with advanced PD. In addition, an extreme form of fatigue, or excessive daytime sleepiness (EDS), can develop. EDS is defined as an inability to maintain wakefulness during the waking day which leads to lapses into drowsiness or sleep. Care partners often report that the person with PD will sleep for large parts of the day and care partners are not sure whether or how to intervene.
Possible causes of Excessive Daytime Sleepiness:

Poor nighttime sleep – all the sleep disorders and PD symptoms that interfere with sleep that were mentioned above can lead to non-restorative sleep at night. This can in turn lead to an overwhelming urge to sleep during the day
Medication side effect (both

Staying Connected While Social Distancing

Staying Connected While Social Distancing

Challenges often force us to adapt and learn new ways of doing things. No one knows that better than people living with Parkinson’s disease (PD).

Facing new challenges

As COVID-19 became a reality and communities implemented social distancing guidelines, the American Parkinson Disease Association (APDA) faced some significant challenges. All of our in-person programs that help keep people supported, healthy and informed could no longer take place. How could we continue to serve and stay connected to the PD community?

Jumping into action

In addition to hosting our first-ever Facebook Live, APDA created a new a weekly series of Q&A sessions, called “Dr. Gilbert Hosts,” addressing topics related to COVID-19; developed a fitness-focused series called “Let’s Keep Moving with APDA” to help people learn how to exercise safely at home, and much more.

According to Rosa Peña, Senior Director Programs and Services Field Operations at APDA, local Chapters quickly moved support groups online or connected by phone. They also sent out weekly emails to constituents with updates about COVID-19 and ongoing programs.

Making a tangible difference

This pandemic has impacted people in so many different ways, but for someone living with PD it can be especially frightening. We received a call from a Spanish-speaking gentleman who lost his medical insurance when his wife was laid off from the service industry. He needed a refill on his PD medication. After several phone calls to urgent care facilities and pharmacies, APDA was able to get him his medication and relieve some of the stress he and his wife were feeling.

Innovation and creativity

All across the country, thanks to your support, APDA Chapters found ways to keep people healthy and active despite stay-at-home orders, including free online yoga classes, improv classes, online singing programs and more. “We immediately jumped into action and contacted all of our support group leaders to help them transition to a virtual format so attendees could still feel connected and supported,” said Jennifer Gillick, Program Director, APDA Northwest Chapter.

Looking to the future

While there’s no substitute for in-person gatherings, Peña pointed out that virtual programs will continue even when social distancing restrictions are lifted. Bill Patjane, Executive Director, APDA Massachusetts Chapter, added: “The transition from in-person to virtual programs did help us to think about how we can expand the reach of many great offerings, like yoga, tai chi, and professionally-led support groups into homes and communities that haven’t always had access to our programs and services in the past.”

One of the most important takeaways for all of us is that being at home doesn’t mean being alone. APDA is here for you no matter what. “You can call us if you are having a challenging moment and we’ll see what we can do for you… We’re in it together, it’s going to get better,” says Peña.

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What’s Happening at APDA

What’s Happening at APDA

A Facebook First

Just as many of you have been learning how to work from home, connect virtually, and figure out new ways to get things done, APDA has been doing the same! We knew we had to find different ways to stay connected, so to get things started we hosted our first-ever Facebook LIVE Q&A as a new way to bring information directly to you.

Coming to you from their homes, APDA President & CEO Leslie Chambers and our Chief Scientific Officer Dr. Rebecca Gilbert hosted a virtual discussion and answered people’s questions about COVID-19 and PD. The recorded session is available here along with the additional virtual Q&A programs we have conducted since then. We encourage you to check them out.

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Restless Leg Syndrome and Parkinson’s Disease

Restless Legs Syndrome (RLS) is a neurologic and sleep-related condition characterized by an irresistible urge to move the legs. The symptoms respond to dopaminergic medications such as dopamine agonists or levodopa, which are also used to treat Parkinson’s disease (PD), making an association between RLS and PD likely. Here we explore RLS and its potential connections with PD. This post was adapted from content originally written by Dr. J Steven Poceta, neurologist and sleep medicine specialist.

What is Restless Leg Syndrome (RLS)?

Characteristics of Restless Leg Syndrome

There are certain features of RLS that make it a unique and specific disorder.

  1. The hallmark of RLS is a feeling of restlessness, usually in the legs. The restlessness is often accompanied by additional sensations such as tingling, “creepy-crawly” or electric sensations, usually located in the legs. The symptoms are usually not restricted to the toes or feet, as in peripheral neuropathy, but rather are present more generally in the legs, often the calves or thighs.
  2. The restlessness is worse when the person is at rest or not moving. This feature makes it hard for people with RLS to get to sleep and can also interfere with the ability to sit still in order to read, relax, or do desk work.
  3. Symptoms are improved with moving, particularly walking. Unfortunately, the relief lasts only as long as the movement continues, which makes some people “pace the floor” for hours when the condition is severe. Besides walking, sometimes providing other stimuli to the legs is helpful, such as rubbing, massage, or stretching.
  4. RLS symptoms usually occur in the evening and night and are absent in the daytime. This is the reason that RLS is considered a sleep disorder. If the symptoms are present in the daytime, the intensity of the sensations are usually less than in the evening and night. Most people with the condition have the onset of the feeling in the hours after dinner and before bedtime. The restlessness might impede the onset of sleep or cause the person to wake up frequently, but usually the restlessness goes away during the latter portion of the night and is gone by morning. RLS can cause significant sleep deprivation and anxiety related to trying to fall asleep — and poor sleep can have significant ramifications on health and wellbeing.
  5. RLS can be accompanied by a related disorder called Periodic Limb Movements of Sleep (PLMS) which are repetitive leg movements that occur during sleep.

Causes of Restless Leg Syndrome

  1. Although the cause of RLS in many people remains unknown, about half of people with RLS have a family history of the condition. Despite this, no specific gene has been identified.
  2. RLS can also be secondary to other medical conditions such as iron deficiency, neuropathy and renal failure.

Parkinson’s & Restless Leg Syndrome: Using Dopaminergic Medication

Because RLS is well-treated by medications that also treat PD, it is likely that some aspect of brain dopamine function is altered in RLS. However, unlike in PD, in which the deficit in substantia nigra dopamine-producing cells can be proven in many ways, no such abnormality has been shown in RLS. For example, studies show that DaTscan results are not abnormal in RLS.

Using dopaminergic medications to treat RLS however can be tricky. In some people they can lead to a phenomenon known as augmentation, in which long term use of dopaminergic medications can worsen the symptoms – making them appear earlier in the day or migrating to the upper body in addition to the legs.

Does having RLS increase the risk of developing PD?

Since RLS affects as much as 4-10% of the US adult population, it is clear that the vast majority of those with RLS do not ever develop PD.

Despite this, it still might be the case that RLS increases the risk of subsequently developing PD. There have been many studies trying to figure this out – with conflicting results. Some studies show that there is no increased risk and others show that having RLS confers about a two-fold increased risk of developing PD over the general population.

Is RLS more common in PD?

But what about the other possibility? Do patients with PD have an increased risk of RLS over the general population? Is it the same RLS as the person without PD has, or is it different? These questions have been difficult to answer. Of course, since PD affects about 1.5% of the elderly, and RLS in about 4-10% of the population, there will be some coincidental overlap. In addition to this however, patients with PD can have sensations that feel like RLS when their dose of dopamine medication is wearing off. These sensations are not truly RLS since they do not have the key features of RLS described above (more common at night, improves with movement, etc) and fluctuate with medication timing, but they can be easily confused with RLS by the person with PD.

Studies of people with PD that assess for RLS and compare to a control group are hindered by the fact that the majority of patients with significant PD are under treatment with medications that affect RLS. Over the years, there have been multiple studies investigating whether RLS is more common in PD than in the general population. Different studies come to different conclusions. Studies conducted in which a group of people with PD are directly compared to a group of people without PD (case-control study) typically show that RLS is more common in PD than the general population.

To complicate matters, some researchers of this topic explain that the experience of people with PD is not actually RLS but rather something else called leg motor restlessness (LMR).  The difference between the two is that RLS is worse when the legs are not moving and temporarily relieved by movement whereas leg motor restlessness is not worse when the legs are not moving and not relieved by movement. LMR may be increased in people with PD, whereas true RLS may not be.

Treatment of RLS in PD

Regardless of the above discussion, it is clear that many people with PD have difficulty falling asleep because of annoying sensations in the legs accompanied by a sometimes unbearable sense of restlessness in the legs. For these people, taking dopamine agonists before bed can be helpful. Caution is in order, of course, because in some patients with PD, especially older or more advanced patients, these medications can cause confusion and hallucinations and are thus not well-tolerated. A long-acting levodopa formulation or medications such as gabapentin, gabapentin enacarbil and pregabalin can also be effective. Trying to address sleep issues such as RLS in patients who have sleep complaints can be an important aspect of maximizing therapy for PD.

Tips and Takeaways

  • Restless leg syndrome (RLS) causes a feeling of restlessness in the evening hours, usually in the legs, when the limbs are at rest. The restlessness is relieved by movement.
  • RLS is a common condition in the general population and may have an increased incidence among people with PD, but studies have been inconsistent.
  • Dopamine agonists, levodopa, gabapentin, gabapentin enacarbil, and pregabalin, can be tried to help relieve RLS symptoms, but should be used with caution (as with all medications) due to potential side effects.
  • Sleep disorders including RLS are very common in PD and often interfere with getting a restful night sleep. Poor sleep can have significant impacts on your health and wellbeing, so talk with your doctor about these symptoms or any symptoms that interfere with your sleep.

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