Restless Legs Syndrome Foundation Blog

September 5, 2018

Ten Ways to Raise RLS Awareness During September

RLS is still not widely understood and awareness remains one of our primary goals at the RLS Foundation. With your help, we hope to spread awareness about what RLS is, and to let the public know that information and support are available through the RLS Foundation and our volunteer support network.

This year we are launching our #MakeADifference4RLS challenge. On the cover of the Summer 2018 edition of NightWalkers is our Awareness Day image and we encourage you to take part in the challenge. To participate, take a picture of you and the cover of NightWalkers doing an activity to spread awareness and email it to clara@rls.org. If you do so before September 23, you will receive a FREE RLS awareness magnet!

Here are some suggestions to get you started, we look forward to hearing what YOU do to get the word out!

1. Take a selfie or make a short video clip with your own RLS awareness message. Post it on Facebook, Twitter, YouTube or Instagram – and ask your kids, grandkids and friends to do the same! Use the hashtags #MakeADifference4RLS.
2. Write a letter to the editor of your local newspaper or TV station about your experience with RLS. You can also be a guest blogger for the RLS Foundation – email info@rls.org to learn more.
3. Share our YouTube videoswith your local newspaper, radio and TV media.
4. Show your support! Whether an RLS Foundation T-shirt, an RLS magnet on your car, or a hand- written “RLS Awareness Day” sign, you can catch eyes and start conversations to help spread the word. For more ideas, visit www.rls.org/shop to access the RLS Foundation’s online store - Everything is 25% off during September!
5. Share copies of Nightwalkers with your local library, doctor’s office, assisted living facility, church or other community gathering place.
6. Ask a friend or family member to join you in watching a free RLS Foundation webinar – visit the Member Portal on www.rls.org to access our webinar library.
7. Make the RLS Awareness Day image your Facebook profile picture.
8. Give the gift of an RLS Foundation membership to family, friends and your physician or “pay it forward” by donating a scholarship membership to someone needing assistance with membership, visit www.rls.org/pay-it-forward or call 512-366-9109.
9. Share what you are doing on Awareness Day with a post to Facebook tagged #MakeADifference4RLS.
10. Share information about our upcoming RLS physician webinar series beginning in October 2018 with your healthcare providers – refer them to www.rls.org/PhysicianEd.

Thank you to everyone who has participated in RLS Awareness Day activities so far - let's get creative and let's get going!

SEPTEMBER 4, 2018

Appropriate Use of Opioids to Treat RLS

About 1 in 33 Americans – 3 percent of the US population – have RLS that is severe enough that they need treatment with medications. Unfortunately, treatment options are limited and do not provide life-long coverage. Dopamine agonist medications (pramipexole, ropinirole and rotigotine patch) can actually make the disease worse over time – an effect called augmentation. Alpha-2-delta agents (gabapentin, pregabalin and gabapentin enacarbil) are effective for only 70 percent of RLS patients and can have serious side effects such as suicidal thoughts.

Opioids are an established, highly effective treatment option for people with severe RLS when other therapies have failed. These medications bring dramatic relief to an estimated 90–95 percent of RLS patients. Clinical experience among experts has not shown the degree of drug misuse, dependency or addiction that is commonly associated with opioid use to treat chronic pain, which has a different underlying biology from RLS.

Clinical guidelines published in Mayo Clinic Proceedings are available for clinicians to appropriately prescribe opioids for RLS, assess patients for risk of addiction, and monitor use over time. The RLS Foundation actively conducts educational outreach to help ensure that healthcare providers know how to diagnose and treat RLS, including treatment with opioid therapy.

Learn More About RLS Treatment Options

If you are struggling to control your RLS symptoms, consult with your healthcare provider about which treatment options may be right for you. A good resource to share with your provider is the RLS Medical Bulletin, available in the Member Portal at www.rls.org.

If you are looking for an RLS healthcare provider, visit www.rls.org or contact the RLS Foundation at info@rls.org for information about RLS Quality Care Centers and other providers knowledgeable about RLS.

AUGUST 16, 2018

What You Should Know about Iron and RLS

Iron deficiency is a known contributing factor to RLS, and many find some symptom relief from supplemental iron in pill form or by intravenous (IV) infusions.

Healthcare providers have new guidance for treating RLS patients whose iron stores are low. A paper published in the January 2018 issue of Sleep Medicine provides information on how to evaluate RLS patients for low iron, when to offer iron therapy as a treatment, and which type of treatment is most likely to be helpful for individual patients, including children.

“Iron treatment, despite its importance, is not well understood,” says co-author Richard P. Allen, PhD, a researcher at the Johns Hopkins Center for Restless Legs Syndrome. “Iron treatment is complicated by current iron status, and the various oral and IV iron treatments available. Understanding the benefits of IV iron in particular for some patients is relatively new, and this paper provides reasonable guidance for its use that is not available elsewhere.”

Past research has shown that iron deficiency in the brain is an underlying abnormality of RLS. “RLS treatments are basically palliative – they reduce symptoms but do not reduce any basic biological abnormality,” Allen says. “Iron treatment differs. It serves to reduce, for some, a biological abnormality in RLS of reduced brain iron.”

The new report was developed on behalf of the International Restless Legs Syndrome Study Group (IRLSSG). In recent years, a number of research studies on iron for RLS and periodic limb movement disorder (PLMD) have been published. To evaluate these findings, the IRLSSG formed a task force of 12 medical experts in RLS, sleep medicine, neuroscience and other fields, to evaluate published research on the topic and develop a set of recommendations for clinical practice.

This group searched the medical literature and examined 299 related articles. The group’s analysis also included clinical recommendations based on expert clinical opinion. The resulting report includes evidence- and consensus-based guidelines that confirm iron should be a first-line treatment option for RLS. The report also recommends treating people with RLS and iron deficiency with oral iron first, unless there is a medical reason why oral iron cannot be used. The article presents updated treatment algorithms for iron use to treat RLS in adults, and both RLS and PLMD in children.

Importantly, the article delves into the differences among five different IV iron formulations available. “Not all IV iron formulations are alike, and some appear to work better than others,” says Dr. Allen. In addition, specific guidance about when and how to use oral iron is presented, including the recommendation that taking oral supplements once a day is preferable to taking them twice a day.

The article, “Evidence-based and consensus clinical practice guidelines for the iron treatment of restless legs syndrome/Willis- Ekbom disease in adults and children: an IRLSSG task force report,” is available online at www.sleep-journal.com.

This and other clinical publications are the outcome of dedicated work by members of the RLS medical and scientific community to help healthcare providers worldwide offer the best possible medical treatment to RLS patients.

Iron and RLS: What you need to know

Every individual with RLS should have their blood iron levels (serum ferritin) checked, as keeping ferritin levels mid-range – at 75 micrograms per liter and above – correlates to RLS symptom improvement.

If your iron levels are low, your doctor may recommend ways to replenish your iron stores, including:

• Increased consumption of iron-rich foods, especially meat, fish and liver. Leafy green vegetables also contain iron but may not be broken down adequately by your digestive tract to deliver significant amounts of iron to your body.
• Oral iron supplements. For best iron absorption, iron pills should be taken at night on an empty stomach with vitamin C. They should not be taken with food, milk, antacids, calcium supplements or medications used to treat acid reflux and thyroid.
• IV iron therapy. Your RLS doctor should be aware of the potential for IV iron treatment, and if you are an appropriate candidate, can refer you to a hematology center or RLS program that provides iron treatments for RLS.

Iron supplements should only be taken under the supervision and care of a physician to ensure proper monitoring and help prevent iron overload.

Learn more

To learn more about iron and RLS, please view the webcast “Iron and RLS” or see the handout Understanding Iron and Restless Legs Syndrome, available in the Member Portal at www.rls.org.

JULY 21, 2018

By Kris Schanilec

If you have RLS, you know the relentless leg discomfort that can drive you out of bed at night.

Chances are, you also have two other symptoms: periodic limb movements in sleep (PLMS) – 80 percent of those suffering from RLS display this symptom; and constant wakefulness or “hyperarousal” – people with RLS typically are not sleepy during the day, even if they don’t sleep well at night.

Now, scientists have gained new insight into what causes these symptoms – and new avenues to investigate for treatment.
In 2014 and 2015, Sergi Ferré, MD, PhD, of the National Institute on Drug Abuse (Intramural Research Program) received grants from the RLS Foundation to more closely examine how dopamine and glutamate work in the brain.

Dr. Ferré has found that low levels of receptors of adenosine, a chemical in the brain that regulates neurochemicals, lead to abnormally high levels of glutamate and dopamine. This may be the underlying cause of both PLMS and hyperarousal in RLS. The researchers have also pinpointed a subtype of receptor in the brain – the dopamine D4 receptor – as a new and better target for dopamine drug development.

These findings are the culmination of a four-year study funded by the RLS Foundation, and were recently published in Annals of Neurology¹ and Frontiers in Neuroscience.²

Building on decades of RLS research

Dr. Ferré’s research into RLS builds on decades of science by others on the roles of dopamine and glutamate in the brain for those who suffer from RLS.

It has long been believed that RLS is related to a malfunction in the way the brain uses dopamine. Dopamine is a neurotransmitter (a brain chemical that sends messages) associated with muscle activity and movement. Dopamine medications for RLS act by decreasing the amount of dopamine produced by neurons (brain cells). This has the effect of reducing PLMS. However, use of dopamine medications is limited by the serious side effect of augmentation.

In 2013, scientists at Johns Hopkins identified the involvement of another neurotransmitter – glutamate, which is associated with arousal (wakefulness). Researchers found elevated levels of glutamate in the brains of people who had RLS. The extra glutamate is thought to contribute to PLMS – and to hyperarousal. Many RLS patients take alpha-2-delta medications to control their symptoms by reducing glutamate levels.

In the current study, Dr. Ferré’s laboratory used its first RLS Foundation grant to create an animal model that will help develop and test new RLS treatments. A rodent was fed an iron-deficient diet to mirror the brain iron deficiency found in people with RLS. The researchers invented a method that combines optogenetics and microdialysis. They attached a light-activated protein to specific neurons between the cortex and striatum in the brain of the rodent. When they shone a light on the neurons, this triggered the release of glutamate – which was greater in the animals with iron-deficiency than in animals fed a regular diet.

“The first finding was to show that in the rodent with brain iron deficiency, a well-accepted pathogenetic model of RLS, we were able to show that brain iron deficiency produces increased sensitivity of the cortico-striatal terminals to release glutamate,” says Dr. Ferré. Recently, Dr. Ferré’s team tested this animal model with several RLS drugs: the dopamine agonists pramipexole and ropinirole, and the alpha-2-delta drug gabapentin. The researchers validated that these medications work by counteracting the release of glutamate.

In the process, the team also pinpointed a specific type of protein, called the dopamine D4 receptor, that controls the transmission of glutamate in these cells. This protein may be an effective target for future dopamine medications. “Thanks to this mechanism, we were able to find which subtype of dopamine receptor needs to be targeted,” says Dr. Ferré. “I believe that augmentation is acting on other subtypes. That opens up new hope for therapeutic approaches that probably will have less secondary problems like augmentation and will be more successful.”

Uncovering a new player: Adenosine

If RLS medications work by reversing unusually high dopamine and glutamate levels, how could these high levels be prevented in the first place?

That is the scientific question – and Dr. Ferré feels he may have found an answer in adenosine. Adenosine is a neurotransmitter that regulates the levels of other chemicals; it acts as a brake for the dopamine and glutamate systems in the brain.

Using the animal model, Dr. Ferré’s team found that when there are fewer adenosine receptors (specifically of the A1 subtype), there is increased dopamine and glutamate. This links adenosine to PLMS symptoms.

But there’s more. “Adenosine by the way, regulates the sleepiness associated with prolonged wakefulness,” explains Dr. Ferré. In the cortex, thalamus and other areas of the brain, adenosine modulates homeostatic sleep. Low levels of adenosine receptors could explain the hyperarousal of RLS. “The beauty of the adenosine story is that it connects the hyperarousal symptoms with movement [PLMS],” he says.

“What is really important about our story is that maybe we have found a mechanism – the adenosine system – that links brain iron deficiency to hyperglutamatergic and hyperdopaminergic states.”

This insight can be used to potentially develop RLS treatments that increase the concentration of adenosine to prevent both PLMS and hyperarousal. One such drug is already available clinically: dipyridamole, an antiplatelet drug that protects against stroke and heart attack.

Dr. Ferré’s team validated dipyridamole using the animal model. He also collaborated with Diego García-Borreguero, MD, PhD, director of the Sleep Research Institute in Madrid, to trial the drug in a small group of RLS patients – with promising results. As a next step, Dr. García- Borreguero will coordinate a larger clinical trial in Europe.

Dr. Ferré is also working with several research laboratories to pursue drugs similar to dipyridamole that are more potent and can more easily cross the blood-brain barrier.

“The story now reaches the clinical level,” says Dr. Ferré. “Anything else that could modify the release of glutamate by those terminals could theoretically be good therapeutically for RLS. That’s the case with dipyridamole. We just got results that validate once more our animal model and, in fact, dipyridamole decreases glutamate release by cortico- striatal neuronal terminals.”

Study Results At a Glance

• Using a rodent model of RLS, the researchers showed that people with RLS may have an increased sensitivity in specific brain cells to release dopamine and glutamate.
• They also found that a decrease in the concentration of receptors for adenosine in the brain may cause higher levels of dopamine and glutamate, explaining movement-related RLS symptoms – namely, PLMS.
• Since adenosine also regulates sleep, the low concentration of adenosine may also explain the hyperarousal symptom in RLS.
• Therapies that increase adenosine may help with RLS. Dipyridamole may be one, and others can be developed.
• The researchers also pinpointed a subtype of protein in the brain that can be targeted by dopamine medications, potentially without augmentation as a side effect.

Thanks to the RLS Foundation

Dr. Ferré credits the RLS Foundation with making the last four years of progress in his laboratory possible. “The RLS Foundation research grant has made what we’ve done so far possible. Above all, it has made it possible for a scientist on our team, Gabriel Yepes, to devote his time entirely to this project. And it has been a complete success.”

He also points to the Foundation’s role in cultivating a community of scientists dedicated to solving the mysteries of RLS who support each other’s work. Forty-four researchers have received grants from the RLS Foundation since 1997, and nine have served on the Foundation’s advisory board. Their work spans several continents and many disciplines. “Thanks to the RLS Foundation, I can connect to different specialties quickly and get their input right away,” says Dr. Ferré.

“We are much closer to understanding the mechanisms of RLS. If you understand the mechanisms, that directs your research,” he adds. “We are very close to getting new approaches – not just new molecules that are acting the same way. We are discovering new mechanisms, and that should open a line to new approaches. To hope.”

¹Yepes G, Guitart X, Rea W, Newman AH, Allen RP, Earley CJ, Quiroz C, Ferré S. Dec 2017. “Targeting hypersensitive corticostriatal terminals in restless legs syndrome.” Ann Neurol 82(6): 951–60. doi:10.1002/ana.25104.
²Ferré S, Quiroz C, Guitart X, Rea W, Seyedian A, Moreno E, Casadó-Anguera V, Díaz-Ríos M, Casadó V, Clemens S, Allen RP, Earley CJ, García-Borreguero D. 2018. “Pivotal Role of Adenosine Neurotransmission in Restless Legs Syndrome.” Front Neurosci 11: 722. doi:10.3389/fnins.2017.00722.

JULY 15, 2018

In June, the RLS Foundation visited Washington for a second round of meetings to advocate for research funding and for continued patient access to opioid medications to treat severe RLS.

Led by Executive Director Karla Dzienkowski, the Foundation team met with members of Congress who are on key legislative committees that have jurisdiction over health policy, and with two groups at the National Institutes of Health (NIH).

“Our meetings at Congress and the NIH were very important to moving our advocacy program forward,” Dzienkowski says. “We had the opportunity to meet with Congressional staff who are directly involved in opioid-related legislation. We are also excited to be deepening our relationships at the NIH and taking meaningful steps to advance RLS research.”

The Foundation team met with staff in the offices of Sen. Sheldon Whitehouse, D (RI); Sen. Bob Casey, D (PA); Sen. Elizabeth Warren, D (MA); Rep. Markwayne Mullin, R (OK); Rep. Conor Lamb, D (PA); Rep. Katherine Clark, D (MA); and Rep. Michael Burgess, R (TX).

The discussions centered on the need for a safe harbor for RLS in any upcoming legislation or policy that might restrict access to opioid medications. “Staffers shared that over 50 opioid bills are under consideration,” says Dzienkowski. For the millions of Americans who have chronic, unrelenting RLS, opioid medications taken in low total daily doses can be very effective for controlling symptoms.

The Foundation team also asked legislators to support two research priorities: $2 billion in increased funding for the NIH in fiscal year 2019; and continued inclusion of “sleep disorders” as a category eligible for grants by the Department of Defense.

At the NIH, John Winkelman, MD, PhD, gave a presentation on behalf of the Foundation to the Sleep Disorders Research Advisory Board (SDRAB) of the National Heart, Lung, and Blood Institute. Dr. Winkelman is director of the RLS Quality Care Center at Massachusetts General Hospital and a member of the Foundation’s Scientific and Medical Advisory Board.

The SDRAB is a federal advisory committee that sets the strategy for sleep disorders research at the NIH, and the meeting was an opportunity to highlight the unmet needs of RLS patients. RLS Foundation Board member Linda Secretan is one of two patient advocates on the SDRAB.

In his presentation, Dr. Winkelman discussed limitations of RLS treatments and the importance of research, including his current study to evaluate the long-term use of opioids to treat RLS.

“We had a very positive discussion,” Dr. Winkelman says. “It was important to describe the existing landscape of RLS treatment options, particularly as not everyone at the table was fully aware that many people with RLS continue to suffer for a variety of reasons, such as augmentation. It was equally important to raise awareness about the effectiveness of low total daily doses of opioid medications as a therapy for severe RLS.”

The Foundation also visited the National Institute on Drug Abuse and met with members of the Division of Neuroscience and Behavior, which supports research on drug use and addiction. Dr. Winkelman led a lively discussion on the neuroscience of RLS and how new drug therapies might be developed to treat the disease.

“We’re always looking for new ways to intervene to prevent or treat RLS,” Dr. Winkelman says. “We discussed what we already know about what causes RLS in the brain, and the various ways we might learn more about the neurological pathways involved. We came away with new ideas to explore for research.”

The meetings were coordinated by the Health and Medicine Counsel of Washington (HMCW), a government relations organization with nonprofit and healthcare industry expertise that is partnering with the RLS Foundation to guide its advocacy efforts. In addition to Dzienkowski and Dr. Winkelman, the delegation included Kris Schanilec, RLS Foundation communications; and Dane Christiansen, Dale Dirks and Peter Herzog of HMCW.

How You Can Take Action

The RLS Foundation is working hard to advocate on behalf of the RLS community. The Foundation needs you, an RLS patient or family member, to amplify these efforts by meeting with your legislators. You can meet with your members of Congress at offices in your home state or in Washington. Elected officials want to hear directly from their constituents, and sharing your personal experiences is the best way to educate them about the needs of RLS patients.

The Foundation has resources to help you get started. Contact Peter Herzog at herzog@hmcw.org or visit www.rls.org to learn more.

RLS Advocacy: Our Progress

Since October 2017, the RLS Foundation and its partners at HMCW have:

• Delivered letters to members of Congress from 200+ individuals who responded to a request for personal stories about opioid medications and RLS. 
• Attended Congressional meetings and hand-delivered position letters to committees that are crafting legislation related to opioid medications and/or biomedical research funding. These efforts helped support passage of the FY2018 appropriations bill, securing a $3 billion increase in funding to the NIH. 
• Delivered 40 letters to members of the Senate Defense Appropriations Subcommittee from RLS Foundation members who responded to an Action Alert to support inclusion of “sleep disorders” on the Department of Defense Peer Reviewed Medical Research Program in FY2019. 
• Met with 23 Congressional offices, three NIH institutes, the NIH Sleep Disorders Research Advisory Board, and the U.S. Food and Drug Administration (FDA). 
• Coordinated or supported meetings by the RLS Foundation team and Foundation members with US senators and representatives of 13 states.

Why Are Opioids Needed for RLS?

About 1 in 33 Americans – 3 percent of the US population – has RLS that is severe enough to need daily medical treatment. Unfortunately, treatment options are limited, and FDA-approved medications for RLS often have serious, long-term side effects.

When all other options have failed, opioids at low total daily doses are an established, highly effective treatment option for people with RLS. Clinical experience among experts has not shown the degree of drug misuse, dependency or addiction commonly associated with opioid use to treat chronic pain. The RLS Foundation actively conducts educational outreach to help ensure that healthcare providers know how to diagnose and treat RLS, including appropriate use of opioid medications. For more information, visit www.rls.org.

JULY 15, 2018

Contact the Food and Drug Administration (FDA) and ask them to maintain access to opioids in low total daily doses for patients with refractory RLS

Decision makers at the FDA are requesting comments by September 10, 2018 from patients who utilize opioid therapies to manage their chronic conditions. Agency officials want to hear from refractory RLS patients on how they manage their condition and barriers that are affecting their access to treatment.

Background

On Monday, July 9th, the Restless Legs Syndrome (RLS) Foundation participated in a Patient Focused Drug Development (PFDD) meeting hosted by the FDA. The goal of this meeting was to incorporate patients’ voices as the agency develops guidance on opioid therapies for chronic pain, refractory RLS, and other conditions that utilize these treatments.

RLS is not considered to be a chronic pain condition, because its underlying mechanisms and neuropathology are very different. The Foundation urged regulators to appreciate the differences. This is why it’s important for the RLS community to take part in these discussions, because the perspectives shared will inform the FDA’s decision making on regulations that will affect refractory RLS patients who utilize low total daily doses of opioids to manage their condition.

At the July meeting the FDA welcomed input from a variety of people using opioids to manage chronic conditions. The FDA is now seeking input from patients who were unable to attend in person. Written comments will add weight and depth to the presentations made at the meeting.

Given the high level of concern about opioid related deaths, it is critical that RLS patients make their voices heard at this crucial moment in the policymaking process! In response to these questions, always make sure to note that RLS is different from chronic pain and requires any regulations or legislation take this difference into account. Now is your chance to speak up, to share your experiences and frustrations.

Take Action

• Go to the FDA’s online portal for submitting electronic comments to submit feedback at https://www.regulations.gov/document?D=FDA-2018-N-1621-0001 and click on “Comment Now” at the right of the page. 

• Tell the FDA about RLS, how you manage your symptoms, and what kind of barriers have affected your access to treatment. You can use the suggested discussion topics below to inform your comments.

Feel free to answer the questions directly or simply review them to help guide your response:

Topic 1: Symptoms and Daily Impacts

1. How would you describe your RLS symptoms? (Characteristics could include location, radiation, intensity, duration, constancy or intermittency, triggers etc.)
2. What are the most significant symptoms that you experience resulting from your condition? (Examples may include restricted range of motion, muscle spasms, changes in sensation, etc.)
3. Are there specific activities that are important to you but that you cannot do at all or as fully as you would like because of your condition? (Examples of activities may include work or school activities, sleeping through the night, daily hygiene, participation in sports or social activities, intimacy with a spouse or partner, etc.)
4. How has your condition changed over time? (Considerations include severity and frequency of symptoms and the effects of RLS on your daily activities.)

Topic 2: Patients' Perspectives on Current Approaches to Treatment

1. What are you currently doing to help treat your RLS? (Examples may include prescription medicines, over-the-counter products, and non-drug therapies.)
a. How has your treatment regimen changed over time, and why? (Examples may include change in your condition, change in dose, or treatment side effects.)
b. What factors do you take into account when making decisions about selecting a course of treatment?
2. How well does your current treatment regimen manage your chronic condition?
3. What are the most significant downsides to your current treatments, and how do they affect your daily life?
4. What challenges or barriers to accessing or using medical treatments have you or do you encounter?

Electronic comments must be submitted on or before September 10, 2018. Make sure to let the RLS Foundation know you participated in this campaign!

JULY 12, 2018

Ode to RLS/PLMD

A Poem by Isabella Horsky

Isabella has been an RLS Foundation member since 1998.
I'm sitting in the concert hall, the show will soon begin.
The orchestra is tuning up - the horns and first violin.
They finish the first movement of a Haydn symphony,
When I start feeling tickles, and I know the augury:
Before the measure ends, my leg involuntarily
Jerks upward in a spasm that the person next to me
Can't help but notice. And when twenty seconds pass and then,
In spite of my best efforts, that leg levitates again,
He looks at me as if he thinks that I might be contagious.
To cope with my embarrassment I find it's advantageous
To get a seat right by the aisle. And that is just in case
My PLMD gets so bad, I have to leave the place.
Now Haydn is concluded and they're playing Bach or Lizst,
And I'm outside, lamenting all the music that I've missed.

It's not much different on a plane. Soon after we depart
I feel the same sensations in one leg. It soon will start
To jump and jerk for several seconds, twenty then of respite
Before the next. Whate'er I try, I never can arrest it.
But now I can't get up and stretch. I have to stay and sit,
Because my legs don't understand the seat belt sign is lit.
My neighbor notices my twitch. With look of trepidation
She wonders if, when she gets home, she'll need inoculation.
She looks away, uncomfortable, and then she starts to doze.
I wish my legs would follow suit and grant me some repose,
I eat a snack, recline my seat and try hard to relax.
To no avail. Just then a leg maliciously attacks,
Providing for my body even greater turbulence
Than pilots flying through a wind storm might experience.

So now let's say I stay at home. I have some time that's free.
I'd like to knit, do puzzles or compose some poetry.
But if I want to just be still, to read a book or pray,
My legs soon start to twitch as if they want to run away.
And if, by chance, I think I'd like to take a little nap -
You guessed it: Pretty soon a leg begins to tense, then flap
And jerk. It acts as if it were an independent thinker.
And if I had some booze, I might become a heavy drinker.
I shuffle pillows, toss and turn, then lie this way and that.
The dog jumps off my bed and slinks forlornly to his mat.

Then after supper in the evening is the time I dread
Because I know the old routine when I must go to bed.
I read a gentle novel or I listen to some Bach.
I make a point of never looking over at my clock
To see how many minutes of that twitching might have passed.
I wonder if each spasm will turn out to be the last.

So now of sleep I've been deprived for over 40 years.
The thought could very soon engender bitterness or tears
Of helplessness, frustration. Truth to tell, I can't conceive
Of life without PLMD, but somehow I believe
There is a loving God who will continue to provide
The energy that comes from rest, of which I've been denied.
If daily He did not help me to grow in this conviction,
I'd find it quite impossible to deal with my affliction.
Besides which, spending every day in scowling, grumpy mood
Will use up far more energy than simple gratitude.