Restless Legs Syndrome Foundation Blog

November 22, 2019

By Amber Arellano

RLS Safety Net

Do you consider yourself a caregiver for your spouse or partner? By definition, a caregiver is a person who provides direct care to the elderly, a child, a spouse or a partner. An estimated 39.8 million caregivers in the US provide assistance to another adult age 18 and up, according to a report by AARP. The degree of caregiving varies – from 24-hour care, to asking if a spouse took their medicine that day.

Caregiving can be a source of marital or familial strain; it can cause caregiver frustration and fatigue, as well as disagreements within a household. In the RLS Foundation’s 2013 Patient Odyssey Survey, spouses/partners reported the following were impacted by RLS: relationships (20%), the ability to travel/leisure activities (25%) and sleep (24%). Here are some tips for caregivers to strengthen relationships, manage travel and leisure activities, and improve sleep.

Strengthen your relationship

According to the Patient Odyssey Survey, 45% of RLS patients wish their family and friends were more supportive and understanding of their experience with RLS.

Caregivers may feel powerless over their loved ones’ RLS if they don’t understand it. It’s important to educate yourself. Watch the Foundation webinar “What is RLS” by Dr. William Ondo, request RLS Foundation literature or download publications from the member portal at www.rls.org. Don’t be afraid to share your struggles and listen to your loved one’s experiences in return.

If you are uncomfortable broaching the topic of RLS, then make time to talk. Ask your spouse or partner to describe what RLS means to them, go on a date together, or attend a support group meeting. As social researcher Brené Brown says “Vulnerability sounds like truth and feels like courage.” Have courage, and be bold. The effects of family support, collaboration, and control of RLS will have positive health benefits for all in your household.

Travel and leisure: Be flexible and creative

Gregory Stader, whose wife Rosemary has RLS, says that their family is aware of Rosemary’s symptoms and makes a few adjustments to work together and quell her symptoms. “We have set timers using [Amazon] Alexa as a reminder to take her meds on time,” says Stader. “[For trips] we try to travel together, and when driving we allow extra time for stops if needed.” Stader says he is now driving a majority of the time, and they keep Rosemary’s mind occupied with devices – iPads and cell phones – to allow her to stay connected, read email or order products.

RLS Foundation Executive Director Karla Dzienkowski talks about traveling with her daughter who has RLS. “Flexibility is key. As a family, we make plans to travel only in the morning or afternoon hours. If it’s not a good day, we change plans,” Dzienkowski says. If someone in your family has RLS, don’t let RLS stop you from traveling and doing other things that you enjoy. Find ways to make accommodations and be flexible with travel plans. Travel at a time of the day that is best for your family member with RLS, and consider modes of travel that will allow them to move when necessary – for example, by train, boat or RV. Find ways to keep their mind busy with activities such as Sudoku, crossword puzzles or podcasts.

According to AARP, couples bond more closely when they do new, innovative activities together. Pick up your local newspaper and find a new event to attend, take a dance class, or join a club. If you have an outdoor theater or concert nearby with options to stand or even dance, take advantage of venues that allow you to move. Travel and leisure activities are out there – go find yours!

Optimize your sleep

In the Foundation’s survey, 65% of patients and 24% of spouses/partners report a restful night’s sleep as the area of their lives most affected by RLS. Encourage your loved one with RLS to be aware of their triggers, use the Foundation’s RLS symptom diary, and establish a daily schedule to prepare for a restful night. Work together, and keep your channels of communication bright and open. Go outside or do something physical for at least 30 minutes a day to also aid sleep.

Loss of sleep can have a negative effect on mood, productivity and happiness. The Global Council on Brain Health, a collaborative from AARP, recommends people age 50-plus should aim to get about seven to eight hours of sleep in a 24-hour period. If the sleep needs of the RLS patient or caregiver are not met, don’t be afraid to try sleeping apart. In the Foundation’s survey, 36% of partners reported sleeping in separate beds due to RLS. Sleeping apart can be beneficial for both parties; the caregiver can get a full night’s rest, and the RLS patient will be less distressed throughout the night.

Caregivers, remember to be positive, patient and understanding when your loved one is experiencing severe RLS symptoms. Know that your loved one appreciates all that you do for them; you are their safety net when things get tough. As a community, patients, caregivers, families and friends can make a difference in each other’s lives. You are not alone!

November 19, 2019

Great Progress for RLS

By Kris Schanilec

The RLS Foundation has made significant progress in advocating for the needs of RLS patients this year. Foundation leaders, staff and community members have worked in tandem to advance three goals:
1) increase RLS research,
 2) improve professional RLS education and public awareness, and
 3) ensure patients have continued access to low total daily dose opioid therapy for severe RLS.

Here are some highlights of 2019 achievements:

• Secured key congressional appropriations committee recommendations for the 2020 fiscal year that will support RLS research. – Congress continued to highlight RLS research at the National Institutes of Health through report language in its annual appropriations bills. – In September, the Senate Defense Appropriations committee once again included “sleep disorders” on the annual list of conditions eligible for funding through the Department of Defense (DOD) Peer-Reviewed Medical Research Program.
• Held the first RLS Advocacy Day on Capitol Hill in Washington on May 3. A team of 30 participants met with 45 congressional offices representing 16 states.
• Educated key legislators, agency officials, and policy makers through a grassroots base of RLS patients and a group of congressional champions both on and off the Hill.
• Mobilized 350 public comments from the RLS community on federal rulemaking regarding the opioid epidemic.
• Coordinated grassroots meetings with local congressional offices throughout the country during the August recess.
• Achieved congressional recognition of RLS Awareness Day on September 23.

“We launched the RLS advocacy initiative two years ago, and we’re making a difference,” says Karla Dzienkowski, executive director of the RLS Foundation. “Our efforts are moving the dial in terms of increased awareness and accommodation for the needs of RLS patients.

“Thank you to everyone who has met with their legislators, those who have participated in letter-writing campaigns, and all whose financial support makes this progress possible.”

How You Can Support RLS Advocacy

The RLS Foundation’s advocacy work is funded solely by gifts from generous individuals like you. Please consider supporting this important work with a donation to the RLS Advocacy Initiative.
Visit www.rls.org or call 512-366-9109. Thank you.

November 14, 2019

What's Really under the Bun?

The Impossible Burger is a plant-based burger that has been widely praised for looking, smelling and – luckily for burger lovers – tasting just like the real thing. But if you have RLS and low iron stores, you may be wondering: Can it boost your iron?

Iron is essential for all living cells in the body. One of its main roles is as a component of hemoglobin (heme), the molecule in red blood cells that carries oxygen throughout the body. Iron deficiency is a known contributing factor to RLS, so maintaining a healthy iron level is especially important for those with the disease.*

According to a 2018 Gallup poll, 5% of Americans report they are vegetarian, and another 3% are vegan. (Vegetarians don’t eat meat; vegans don’t eat any animal products.) Individuals choose to limit their diet for a variety of reasons, but no matter why, removing meat from one’s diet can drastically reduce iron intake. To combat this iron deficiency, vegetarians have to work to fit other high-iron food choices (such as tofu, lentils and beans into their diets. Could the Impossible Burger be an iron-rich choice for vegetarians and vegans alike?

The Impossible Burger is a nationwide phenomenon. This 100% plant-based burger is known to taste like the real thing and even bleed. But how can a burger bleed if it isn’t meat? Scientists at Impossible Foods claim that heme is the molecule that makes meat taste and bleed like meat. The company genetically engineers yeast to make heme for the Impossible Burger.

However, the burger’s benefit as a source of dietary iron is up for debate. James Connor, PhD, a member of the RLS Foundation Scientific and Medical Advisory Board and a leading expert in brain iron metabolism, says that although the Impossible Burger contains heme iron, it is not clear to experts if this genetically altered molecule acts the same in the body as regular heme.

Additionally, Connor explains that soy protein actually inhibits iron absorption. Since the heme in the Impossible Burger is fermented in a soy plant, it is unlikely that any iron in the burger is absorbed into the body, according to Connor.

Overall, the Impossible Burger may be a tasty option for vegetarians or vegans who are craving a burger. Also, Impossible Foods states its main goal is “to reduce humanity’s destructive impact on the global environment by replacing the use of animals as food production technology.” However, choosing an Impossible Burger over a regular burger is probably not going to have much impact on your iron level.

The moral of the story is to do your research as a consumer. With so many products on the market and so much information on the internet and social media, it is sometimes hard to know if a product or service will provide the benefits you are expecting. Whether it is a new diet, a new drug or a new RLS treatment, make sure you understand the details and consult with your doctor before making any changes to your treatment plan.

Editor’s note: James Connor, PhD, is founder and chair of the board of Sidero Science, a competing specialty biotechnology company with an iron- based medical food product under development.