Restless Legs Syndrome Foundation Blog

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.

June 21, 2018

By Kris Schanilec

For many people who have Alzheimer’s disease, evenings are difficult. Right around sundown, uneasy feelings and confusion start to flow. The person may become forgetful, agitated – even aggressive, and start pacing or wandering. These symptoms can last through the night and make it tough for anyone in the household to get a good night’s sleep.

Could it be that these behaviors – known as nighttime agitation, or “sundowning” – are caused by RLS? And could treating the RLS lessen the nighttime agitation symptoms?

Researchers led by Kathy Richards, PhD, at the University of Texas at Austin are working to answer these questions. Dr. Richards and co-investigator Christine Kovach, PhD, from the University of Wisconsin-Milwaukee have been awarded a $3.9 million, five-year grant from the National Institute on Aging to evaluate whether there is an association between nighttime agitation and RLS in people who have Alzheimer’s disease.

“Nighttime agitation is the No. 1 reason why people with Alzheimer’s cannot be cared for at home,” says Dr. Richards. “If we can find a better and more precise way to treat nighttime agitation, we can improve the quality of life for many persons who are living with Alzheimer’s disease.”

Nighttime agitation is often treated with powerful antipsychotic drugs, which are only moderately effective and carry with them serious risks, such as falls, stroke and death.

Because nighttime agitation has a strong circadian component and shares symptoms with RLS, Dr. Richards and others have long postulated that for some people, undiagnosed RLS could be the underlying cause. In a previous study led by Dr. Richards, researchers examined symptoms in 59 people who had Alzheimer’s disease and nighttime agitation. They found that 24 percent of participants also had RLS.

In the current research, the team will validate this result in a pilot study – an eight-week, double-blind, randomized controlled trial with 136 long-term care residents who have nighttime agitation and RLS. Participants will receive either gabapentin enacarbil (Horizant, an FDA-approved medication for treating RLS) or a placebo. Data from the study will also help discern the effectiveness, safety and optimal dosage of gabapentin enacarbil for treating nighttime agitation, as well as whether the frequency of RLS symptoms may be linked to nighttime agitation.

The researchers will use a tool newly developed by Dr. Richards called the Behavioral Indicators Test-Restless Legs. This test includes a brief 20-minute observation and simple set of questions for caregivers. Previous studies have shown the tool to be an effective way to diagnose RLS in people who have Alzheimer’s, and one that has potential for future use with children and others who don’t have the ability to report their symptoms.

RLS Foundation Executive Director Karla Dzienkowski visited the University of Texas in May, where she gave a presentation about RLS and met with Dr. Richards’ team to extend the RLS Foundation’s support for the research endeavor. “Cognitively impaired seniors with RLS may have difficulty expressing RLS symptoms causing an inability to sit or lie still during the evening or nighttime hours,” says Dzienkowski. “This study will ensure seniors with cognitive impairments are accurately diagnosed and receive proper treatment to manage their RLS symptoms.”

Dr. Richards emphasizes that while there is no evidence suggesting that RLS causes Alzheimer’s, the study may show that it’s important for caregivers of people with any type of dementia to watch for possible signs of RLS that can then be treated to potentially reduce nighttime agitation.

It all comes down to quality of life for people who have dementia, says Richards. “I hope they will be more comfortable, and that they – and their caregivers – can get a good night’s sleep.”

Kathy Richards, PhD, is a member of the RLS Foundation Scientific and Medical Advisory Board. Read more about her research on the University of Texas at Austin School of Nursing newsletter.

“Does the new tax law take away my tax benefit when I make a contribution to the Foundation?”
At the RLS Foundation, we have been hearing this question from many of our donors, supporters, members and friends. We consulted with tax experts, and based on their analysis, we believe the correct answer is, “Probably not, but it depends.” In fact, the new tax law has actually made charitable giving more affordable for many donors!

Don’t believe the headlines

You may have heard reports that charities like the RLS Foundation risk losing millions of donations because more taxpayers may qualify for the newly doubled standard deduction (up from $12,000 to $24,000 for married taxpayers filing jointly, with an added $1,300 for each spouse age 65 or older).
But depending on their circumstances, this higher standard deduction could mean donors have more money available to support their favorite causes. Moreover, the newly lowered tax brackets mean that donor incomes may be taxed at lower rates overall.
If the new law generates greater tax savings for someone, then part of those savings is available to donate. The surprising result may be that the new tax law actually increases charitable giving.

More advantages to giving! 

Meanwhile, the new tax law has created or maintained other tax advantages that specifically benefit charitable giving:

• There is a cap on how much of a contribution may be deducted in a year when comparing that gift to the taxpayer’s income. The new law raised that cap from 50 percent of income to 60 percent, which could allow for a larger annual tax deduction. 
• Also, people age 70 1/2 or older who must take an annual required minimum distribution (RMD) from their IRA can continue to make a qualified charitable deduction (QCD). This allows them to make a contribution of up to $100,000 directly from their IRA to a charity – which can satisfy part or all of their RMD (or exceed it) but not count as taxable income. And, they can still take a standard deduction on top of it. 
• The new tax law continues to offer the opportunity to donate appreciated stock and deduct the increased value, subject to a 30 percent limit of taxpayer’s income. The amount over the 30 percent of income can be carried over for up to five years and deducted in future years. 

Keep on believing

The question every donor should ask him or herself is: “Why do I give?” At the RLS Foundation, we feel (and studies have shown) that donors give first and foremost because they believe in the causes they support.
Getting a tax benefit is a nice bonus, but what motivates supporters like you to make a gift, whether it’s $25, $250, or even $25,000 or more, is knowing that you’re doing your part – connecting personally to a mission that’s important to you. We give because we care. The new tax law doesn’t change this fact at all.
So, our advice to all our supporters is to look past the gloomy headlines from last fall and winter. Speak with your tax advisor about ways to maximize your tax benefits. ... And, when it comes to our work to find a cure for RLS (and the other worthy causes you support) – keep on believing!
The possible tax advantages of charitable giving described above are illustrations only and may not apply to specific taxpayers’ circumstances. To determine whether you may have tax benefits associated with charitable giving, consult with a certified public accountant, tax return preparation specialist or other qualified financial adviser.

Take Action This Summer!

During the summer, elected officials in Washington break for recess and return to their home states. This is an excellent time to meet with and educate them about RLS, how opioid restrictions are affecting access to necessary treatment, and why more RLS research is needed to find a cure.
The Foundation needs you, a valued and essential member of the RLS community, to join in this important work. Your representatives need to hear your personal story about the struggles of living with RLS. These personal anecdotes put a face to the disease and are crucial to share so that legislators are fully aware of the needs of the RLS community when making legislative decisions.
Not sure where to start? It's easier than you think. The RLS Foundation’s advocacy partners at the Health and Medicine Counsel of Washington (HMCW) are available to assist you in planning and implementing these meetings with your representatives. Contact Peter Herzog at herzog@hmcw.org, or keep reading for information on how to get started.

First Steps

Find out who your representatives are. Each US citizen has three representatives in Congress: Two in the Senate, and one in the House of Representatives. You can find out who they are at www.senate.gov and www.house.gov. Just enter your zip code into the search bar in the top right-hand corner of the page to bring up their names. Many of these officials have offices both in Washington and locally, so select the office closest to you.
Reach out to HMCW. Contact Peter Herzog at herzog@hmcw.org, and he will provide you with talking points, a prep packet and other information to help with the meetings. He may also be able to help schedule meetings.
Make an appointment. Call the office of each representative and request an appointment to discuss issues that you and others with RLS are facing. You will likely be given an appointment with a staff member. Keep in mind that you will be meeting as an individual in the community and not as a representative of the RLS Foundation. If you are a Foundation member, please share this during your meeting.
Strength in numbers. You are not alone! Get a group of friends, family members or other RLS patients to go with you to the meeting. You can also find others who have RLS via the Foundation's Discussion Board, support groups and social media channels.

Resources

While you may have many items that you wish to discuss with your representatives, focusing these particular meetings on issues related to RLS will help make the most impact. The goal is to educate your representatives about RLS, how opioid-related legislation affects you and the RLS community, and why more research funding is needed. The Foundation has a variety of resources to help you accomplish this.
Webinar recordings. The Foundation and HMCW have presented two RLS advocacy webinars, available for free viewing in the "Get Involved" section at www.rls.org. These webinars contain excellent introductory information to RLS advocacy efforts and provide an overview of how you can get involved.
“Statement of Principles.” This document (provided in your prep packet) will be your "North Star" during the meetings and help guide your discussion. While you do not need to memorize all of this information, it will provide the basics about RLS, why more research is needed and why opioid therapies are necessary for patients with severe cases of RLS. Available for free download in the "Get Involved" section at www.rls.org.
HMCW. The Foundation has engaged HMCW staff to guide and focus advocacy efforts on behalf of the RLS community. They are available to help! Email Peter at herzog@hmcw.org with any questions or if you need additional information.

During the Meeting

What to expect. Congressional staff should be friendly and courteous. Remember, they work for you! Their goal is to help you in any way they can, and your “asks” will give them an opportunity to do so. You should arrive 15 minutes early for your meeting and dress in business casual attire. Make sure to print the leave-behind materials beforehand (provided by HMCW or available for download at www.rls.org), as you will be giving them to staff members during your meetings. Keep in mind that you will have 15–20 minutes to make your case, so be ready to start right in with the discussion.
Introductions. Start by thanking the staff member for meeting with you. Introduce yourself and talk about where you are from, then introduce everyone in the group. Be sure to keep the introductions brief so that most of your time is spent educating the representative about the needs of the RLS community. Give the staff member the leave-behind materials to reference during your discussion.
Defining RLS. The person you meet with may not know about restless legs syndrome, so it is important to define what it is. Here is a suggested explanation: “Restless legs syndrome (RLS) is a serious and chronic neurological disease. It causes unpleasant or uncomfortable sensations in the legs, together with an uncontrollable urge to move them. These symptoms can cause severe sleep loss, which can be devastating to a person’s health and well-being, and interfere with work, family and social life. There is no cure for RLS, and treatments are limited.”
Tell your RLS story. How do RLS symptoms impact you day-to-day? What challenges does RLS pose for your work, social life and family relationships? Do you have issues accessing medical care? Everyone's RLS is unique, and it's important to focus on your own experience and how RLS impacts your life.
Introduce the “asks.” Your prep packet provided by HMCW will include a sample meeting outline with specific requests, or “asks,” to make of your legislator. Make sure to review these materials before your meeting. You may want to write down some key points on a note card for reference. In the meeting, state the “asks” clearly and concisely, or read them from the document. Staffers will want to learn how their office can help you, and these “asks” are the best way for them to do so.
Responding to questions. The person you are meeting with may have some questions. If you are asked a complex question that you do not know the answer to, that is okay! Be honest. Let the staff person know that you will find the information and get back to them in a follow-up email.
In the event that you are pressed about RLS patients taking opioids, or you feel that someone is questioning or delegitimizing your struggles with RLS, remain calm and respectful. This will be rare, but it is always good to be prepared. RLS is an underdiagnosed condition, and many people are unaware of its prevalence and severity. Remind the staff person that opioid medications are a last resort for patients suffering from RLS, and that guidelines are available for physicians to prescribe them appropriately. Ask that the staff person review the written materials in the leave-behind packet, which includes the clinical guidelines (“The Appropriate Use of Opioids in the Treatment of Refractory Restless Legs Syndrome”).
Conclusion. Thank the staff member for taking the time to meet with you. The staff member will most likely give you a business card, so be sure to hang onto it for future inquiries. Consider this a relationship-building activity, and plan to follow up with the office a few times a year moving forward. If you brought a camera or phone, ask if you can step outside the office to take a picture together in front of your legislator’s nameplate, to share with the Foundation or on social media. Have fun with it!

After the Meeting

You’ve met with your legislator’s staffer, educated them about RLS, and asked them to support the needs of RLS patients. Give yourself a pat on the back for a job well done!
Make a note in your calendar to follow up by phone or email within two weeks. You can thank the staff person again for meeting with you and provide any follow-up answers to questions. This would also be a great time to plug the Foundation's website at www.rls.org, or share a clip from the Foundation’s YouTube series, My RLS Journey. You can also contact Peter Herzog at herzog@hmcw.org for help with your follow-up messages.


To read more about the Foundation's advocacy efforts, accomplishments, and how you can get involved, visit www.rls.org.

Excerpts from the Q&A

In April 2018, the RLS Foundation hosted the webinar “Legislative Update and Opportunities for Congressional Outreach,” presented by Dane Christiansen, MBA, vice president of the Health and Medicine Counsel of Washington. Mr. Christiansen has worked in government relations since 2004, and specializes in advancing medical research, treatment development, and patient access related policy goals for communities impacted by rare, chronic, and life-threatening medical conditions.

The following questions and answers are based on the webinar. Visit the online Member Portal or the Advocacy page of the Foundation's website to view the full presentation. To see a listing of all of the Foundation's upcoming webinars, visit www.rls.org.

Q: How can I monitor what legislation is being considered in Florida (and other states) and with the federal government?

A: That’s a very good question. If you are looking at what the federal government is doing, there is something called the Congressional Record that you can Google and sign up for that will tell you whenever a bill is introduced or whenever Congress is making a statement on something. But you might feel like that’s drinking from a firehose in terms of how much information you’re getting. There’s also a website called congress.gov which lists all of the bills that get introduced.

Every state is different, and every state has a different process. But the same way that we said that there is a house.gov and there is a senate.gov, where you can find your members of Congress, I know for a fact that that the Florida legislator has a floridasenate.gov and a floridahouse.gov. So, there is a Florida version of that on the local level, and you can similarly use that to identify your local members of Congress. I would encourage anybody to think about approaching their local members of Congress the same way that they would approach their national members of Congress. If the Florida legislator is considering approaching anything, rather than analyzing every bill that comes out, why not take time to write them a letter or send the local office or local state senator an email and say, “I just wanted you to know about RLS and how RLS patients use opioid-based mediations.” The same thing that you do for your members of Congress and your senators, would definitely similarly apply to your state senator and state representative no matter what state you’re in.

Q: What is the most effective form of communication with legislators? A mailed letter, a meeting, a phone call, or an email?

A: Some of you may recall if you did a letter in the past that HMCW helped with, we asked folks to mail those letters to us, and then we would hand-deliver them to Capitol Hill. The reason we asked you to send your letters to us is because you can’t send mail directly to Capitol Hill. Ever since there was the anthrax scare over a decade ago, mail goes to a processing facility in Ohio where it is radiated for a month. If you send your member of Congress a letter, it’s going to show up six weeks later and it’s going to be falling apart. So, if you send it to us, we can hand-deliver it directly to them. Of course, how things go nowadays, calling the office and also emailing the office is by far the easiest way to communicate with these folks. They don’t tend to hand out a lot of staff emails, but if you have that first meeting with the office in the spring or summer, you’re going to get a business card from that person. I would encourage you to occasionally email them to follow up. If you ever wanted to get information to them, or if you ever wanted to send them a letter, an email would be the easiest way to get a hold of them.

Q: To what extent can federal legislation override state laws, or is there a need to also be monitoring state efforts?

A: This is something that interestingly comes up more often these days. Federal law supersedes state law. The states can do as they see fit, but if the federal government passes something, it supersedes anything the state has done. The federal law is the primary law of the land.

Just to give an example, if the states said, “We’re not going to prescribe opioids to anyone,” and the federal government said, “You must prescribe to whomever the doctor thinks the right person to get it,” then the state would have no ability to not prescribe opioids or to advance that rule. The area where this becomes a little more murky is that the states do have latitude to do things wherever the federal government is not clear. So, if the government says, “This is our criteria for regulating prescribing,” there is nothing that would stop a state from adding additional rules on top of that, provided that they didn’t contravene or contradict what the federal government laid out. Anywhere the government is not specifically doing something, the state is allowed to take some form of action.

It is important to stay vigilant and to monitor what your states are doing, but right now a lot of the eyes are on the federal government in terms of what is going to take place with opioid coverage and access policy.

Q: How do you go about scheduling an appointment with a legislator? Do I organize it myself for the meeting and is it best to go as a group?

A: It’s better to go as a group. If you want to personally go into an office, that’s great. We definitely want the office to see somebody from the community. If you have an online support group that you work with, if there are others that the Foundation can connect you with that are local, it is very much in your interest to do this together. There might be a case, where they are four of you and you are from a particular area, like Philadelphia, but each of you may have a different congressperson even though you live near each other. Why don’t all four of you go and visit each those four offices together? That would be the ideal way to do it.

Q: Do you need to have specific proposed regulations to reference when you when you visit your legislator?

A: No, and this is why I would refer you back to the Statement of Principles document. The key thing would be to say, “Hey, we know that there are a lot of competing proposals right now. We know that Congress is taking a very broad look at this. There are many different ideas about how to move forward. We just want you to have facts from the RLS community. This is our Statement of Principles, and we ask you that anything that is moving through the legislative process aligns with these principles so it does not harm the RLS community.” That’s the value of having the North Star of the Statement of Principles document.

Q: Do you really think a carve-out for RLS in opioid legislation is possible?

A: Yes, but it’s very likely that the language will a little bit broader than mentioning a specific condition. For example, we already know that there is a potential carve out now for chronic pain, but they don’t list different conditions that might cause chronic pain. They just say “chronic pain.” Similarly, they will probably have a broader phrase, something like “neurological disorders,” that will capture RLS and also potentially other communities that use opioids in the same way – low-dose, chronic use to disrupt signals coming from within the brain itself. So, definitely yes on a carve out, but probably with the caveat that they might not mention the condition specifically, but instead an overall class of disorders that will capture our community.

Q: Is opioid treatment of RLS becoming more or less accepted by treatment providers?

A: I would say definitely more accepted. The scientific literature is pretty clear on this. One of the reasons that we talk about the importance of funding medical research is that we want a cure, we want better treatment options. But for right now, there is a growing awareness of what the proper treatment protocols are. Part of that is that these scientists read these medical journals and they get continuing education. There have been many journal publications recently and much research put out about how this is the proper care for RLS patients.

Just as an example, when we were doing meetings for Hilde, there was an office that said, “Is this true? Do they really give RLS patients methadone? I don’t know about this.” They said they were going to look at our information. The next day the American Academy of Neurology came to visit them, and Hilde asked, “Is it true that RLS patients take methadone? Is this the right way to do it?” And all of the doctors that were there with the American Academy of Neurology said, “Oh, absolutely. That is the clinical judgment, and that is the way it is currently done.”

So, while there is more scrutiny on opioid prescribing these days because of the tremendous amount of sensitivity to what is going on in the country, in terms of healthcare professionals, there is a growing awareness that this is a proper standard of care.

Q: Do you foresee that additional opioid lobbying in FY 2019 will be necessary to keep opioids as a treatment options for severe cases of RLS?

A: Yes, and I would go back to the “at the table or on the menu” phrase. If we aren’t advocating and we aren’t speaking out, I do believe that there is a real chance that Congress could do something that’s arbitrary or restrictive or harmful. They did already take a step and carve out chronic pain. They have not taken a similar step for RLS, but they need to. And we should have every expectation that they will if we make our voices heard, educate them, and tell them what is needed.

New Connection between Restless Legs Syndrome and Changes in Brain Structure

In a new study published in an online issue of Neurology, researchers at Pennsylvania State University revealed a connection between patients with restless legs syndrome and changes in brain structure, specifically parts of the brain that process sensory information.

"These structural changes make it even more convincing that restless legs syndrome symptoms are stemming from unique changes in the brain, and provide a new area of focus to understand the syndrome and possibly develop new therapies," said study author Byeong-Yeul Lee, PhD, who worked on the research team while at Pennsylvania State University before moving onto The University of Minnesota in Minneapolis. James R. Connor, RLS Foundation Scientific and Medical Advisory Board member, is also an author on this work.

During the study, MRI brain scans were performed on 28 people with severe RLS (who had the disorder for an average of 13 years) and a control group of 51 people without RLS. These scans showed that patients with RLS had an average of 7.5 percent less tissue thickness in the somatosensory cortex, the area of the brain that processes thing like touch, pain, movement, position and temperature.

Interestingly, the RLS patient group also had a decrease in the brain where nerve fibers connect the two hemispheres of the brain. While this study does not prove causation, it does provide a new piece to the puzzle about where to focus RLS research and treatments.

“I think the work is important at two levels,” Dr. Connor said. “The data continue to support that there are differences in the RLS brain --- these types of studies continue to hammer home the idea to the general public and health professional communities and funding agencies that RLS is a biological disorder and not anxiety or something without a biological basis. Additionally, this study is important because it ties imaging to the area of the brain that involves processing sensory information. We don’t know if the RLS symptoms start at this area of the brain or elsewhere in the brain, but for the first time there is a clear change in the brain that interprets sensory input.”

The original Neurology article is available for purchase online.

New Support Group Leader in Texas

The RLS Foundation is pleased to welcome Lisa Marie Smith as the new support group leader in Brazoria County, Texas. Thank you, Lisa, and welcome!

Lisa Marie Smith (Brazoria County, Texas)

Looking back over the years, I realize that restless legs syndrome has been a part of my life since I was a young girl. Simple, every day activities such as car rides, going to the movies, sitting in class, or lying in bed trying to sleep were challenging for me.

I didn’t understand what was happening, why I felt like I wanted to jump out of my skin, why I couldn’t just be still, why no one around me seemed to have these same problems.

Through the years, the RLS slowly progressed to the point that I am now taking medication three times a day just to cope with the symptoms.

There have been times I felt like no one in the world could possibly understand what I was feeling, but through the RLS Foundation I have learned that there are others who suffer just as much, others who understand what I’m going through. I want to help those who are struggling with RLS by providing information, guidance, and resources to help them cope. I want to be an encourager and a support that they can turn to.

Stay up to date with all upcoming RLS Foundation support group meetings on our website or Facebook page. All volunteer support group leaders and contacts are available via phone or email to provide support. Search by city or state to find one near you!

Interested in becoming a volunteer RLS Foundation support group leader? Visit our website to learn more about the role and how to apply!