Techniques to Reduce Muscle Spasms

Our guest blogger this week is Christie Seidl, a massage therapy student from The Body Therapy Center and School of Massage in Swansea, Illinois.  Christie will obtain her MBLEx certification this August, and currently has her ASCP MLT certification and an associates degree in laboratory science.

For people with ALS, muscle spasms are a common and sometimes painful occurrence. Spasms and cramps are characterized by a sudden, involuntary contraction of muscles, and are the result of the ongoing disruption of signals from the nerves to the muscles that occurs in ALS.   There are four simple techniques you can use to help alleviate the pain and help stop the spasm.

The first method to try is compression. The easiest way to do this is to use one or two hands to compress and hold pressure to the active spasm. You can do this yourself or a caregiver can do this for you. Another way is to use compression bandages or sleeves during the active spasm.

A second method is light stretching. Gently stretch the muscle but do not over stretch or vigorously stretch the muscle. This can make the spasm worse.

The third method to try is the use of hot and cold contrast treatment. This contrast is achieved by using either hot and cold compresses or hot and cold baths. A cold compress for example is an ice pack and a hot compress is a microwaveable rice pack. An example of a cold bath is cold water with ice and a warm bath would be with hot water but do not burn yourself. When using a bath you want to be able to submerge the entire muscle. This method always starts and end using the cold method of choice. Start by leaving the cold pack on for 10 mins and then switch to the hot pack or water for 10 mins. Then rotate cold and hot method three times and end with one more cold application.

The last but most effective option is a little more difficult. This fourth method is called reciprocal inhibition. “When an agonist contracts, in order to cause the desired motion, it usually forces the antagonists to relax. This phenomenon is called reciprocal inhibition because the antagonists are inhibited from contracting.”(Appleton, 1996) This is accomplished by activating the antagonist muscle.  An antagonist muscle is a muscle that does the opposite job or function of the muscle that is having the spasm. For example: if you have a spasm in your biceps, the antagonist would be the triceps.  If you have a spasm in the calf (gastroc or soleus) the antagonist would be the front of your leg (tibialis anterior) or hamstrings and quads.

Now, the way to activate the antagonist is to put pressure or resistance up against that muscle and press against it. For example: if you have a muscle spasm in you calf, put pressure or resistance against your shin and use the muscles in your leg to press against it. I do this by using my hand against my shin or the front of my leg against a wall with my knee bent and try to straighten my leg.

 

 

The reason this last method works is because the antagonist and the muscle with the spasm cannot work at the same time. Therefore; when you make that opposite muscle work the spasm must relax.

Muscle spasms are not a comfortable thing to live with but there are ways to help shorten the length of the spasm and help alleviate the pain. Always consult a physician if the spasms become worse or more frequent.  I hope these techniques help and know that you are not alone.

References
Appleton, B. (1996, January 09). STRETCHING AND FLEXIBILITY Everything you never wanted to know. Retrieved May 30, 2018, from http://web.mit.edu/tkd/stretch/stretching_1.html#SEC


*A recent study led by Dr. Bjorn Oskarsson from the Mayo Clinic Jacksonville and supported by The ALS Association demonstrated that mexiletine, a drug approved by the U.S. Food and Drug Administration, reduced the frequency and severity of muscle cramps. Ask your healthcare provider for more information.

Caregiver Confidential: Diagnosis and Denial

Today is the first post in a series on ALS caregiving by guest blogger, Idelle Winer.  Idelle will be sharing her journey as an ALS caregiver and asking you to share yours as well.

Are you the caregiver of a loved one with ALS? Just as the journey of every ALS patient is unique, so are the experiences of family members and caregivers. My name is Idelle, and I would like to share my journey, beginning with how I learned that my husband Brian had ALS.

Late in 2004 Brian started to develop problems with his right hand and thumb. His earliest symptoms were that he could not tear sheets from a legal pad and he was dropping pills. Brian went to his primary care physician in May 2005 when his symptoms did not improve. Brian was then referred to a neurologist for evaluation. In July 2005 Brian underwent further testing at Washington University and was told that he may have ALS, which required follow-up to establish a definitive diagnosis.

I vividly remember the July day that Brian broke the news to me. It was late afternoon—a sunny, ordinary day really—and I was watching TV, waiting for Brian to return from neurological testing. I wasn’t particularly concerned that anything was seriously wrong and in fact thought his right thumb weakness was from an old high school football injury.

When Brian walked through the front door, he looked stunned. He calmly related that he could have ALS but would not know definitely for a while. I started to cry. How could he have such a devastating diagnosis? How and why did he get this terrible disease? How could this be happening when our daughter was starting college in the fall and at this stage of our lives?

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Brian, July 2007

Reflecting back, my first awareness of ALS was from watching The Pride of the Yankees after school as a young kid. I wasn’t particularly interested in baseball but was deeply impressed by the inspirational and courageous message of Lou Gehrig. Although I didn’t understand the first thing about ALS, Lou Gehrig’s luckiest man speech left an indelible mark on me. It seemed ironic that Brian had ALS because his favorite baseball team growing up was the Yankees, and now he shared the same disease as one of his heroes.

For the next 6 months, I read as much information as I could on ALS. The ALS Association was a wonderful resource of online information, ranging from symptoms to clinical trials and research, to caregiver resources. I was so desperate for an alternative diagnosis that I even called the St. Louis office, looking for reassurance. I constantly stared at his right arm, hand, and thumb to see if there were any visible signs of muscle wasting. After each office visit between August 2005 and February 2006, I asked Brian if the neurologist was any closer to making a definitive diagnosis. Each time Brian told me his symptoms were about the same with little change or progression, allowing me to cling to the false hope that there was another explanation for his symptoms. Despite my wishful thinking, Brian was officially diagnosed with ALS in February 2006.

How did your loved one learn of his or her diagnosis? What were the initial symptoms that brought your loved one to a physician? How did you and your loved one cope with the diagnosis? Please share your experiences in comments section and  let’s continue the conversation.

You can send your questions or post suggestions to Idelle at alsastl@alsastl.org. For more information and resources on caring for a person with ALS, please visit alsa-stl.org.

The ALS Ice Bucket Challenge: How It Helped and Why It Matters

Nearly three years ago, on August 4th, a peculiar news item showed up on our social media feed at The ALS Association St. Louis Regional Chapter.  Someone had posted an article from Shape Magazine that described something called an “Ice Bucket Challenge,” where people across the country were dumping buckets of water on their heads and challenging three other people to do the same thing. It seemed like a fun, interesting way to raise awareness for ALS, so we shared it to our page and asked our Facebook fans, “Have any of you heard of this?”  The rest of August became a blur of ice and water – it was incredible.

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A screenshot of our August 4, 2014 Facebook post

How it started

The ALS Ice Bucket Challenge – the largest viral social media craze the world has ever seen – was an organic movement started and carried by the community. It was not a planned fundraising or awareness campaign that The ALS Association created – it was instead initiated by people who were impacted by this fatal disease.

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The ALS Ice Bucket Challenge spread

Chris Kennedy, a golfer in Sarasota, Florida, was nominated and took the “ice water” challenge, which was, at the time, not connected with any specific charity. Kennedy then nominated a family member whose husband suffered from ALS, Anthony Senerchia, which was the first time the challenge became associated with ALS and The ALS Association.

The “ALS Ice Bucket Challenge” spread quickly on social media, linking to another person battling ALS, Pat Quinn, whose network of friends overlapped with Pete Frates, a young Boston College Baseball player and team captain, who had been diagnosed with ALS in his 20’s. Frates involvement led to participation by Boston’s athletic community, where it really went viral as professional athletes helped it to cross over into the celebrity realm.

From there – well you’re familiar with the rest – it spread across the nation and eventually went global.  By the peak of the challenge, which was somewhere near the third week of August, nearly 1.2 million videos – including those by Bill Gates, Oprah, George Bush, Jimmy Fallon, Shaquille O’Neal and others – had been posted to social media.  The whole world was talking about ALS.

How it Helped

In addition to the incredible awareness generated by the challenge, the dollars raised made a huge difference to people with ALS – through programs that eased the physical, emotional and financial burdens brought on by the disease.  It also re-energized ALS-specific research and accelerated the search for treatments and a cure.

Monies raised tripled annual research spending, leading to a greater understanding of the disease pathway and potential strategies for new therapies. Funding provided by Ice Bucket Challenge donations supported new treatment approaches in clinical trials, along with the discovery of new genes like NEK-1.

Currently, as a result of Ice Bucket Challenge funds, two antisense drugs targeting the two most common inherited causes of ALS are in or entering into clinical trials.  We’ve formed two new global partnerships – ALS ONE and NeuroLINCS, and we’re actively funding 180+ global research projects in 11 countries.

And any day now, RadicavaTM will be available for prescription use by individuals diagnosed with ALS – the first new treatment for people with the disease in more than two decades.  Produced by MT Pharma and used as a drug to treat stroke in Korea, the FDA took an unprecedented step when it did not require clinical trials of the drug to be conducted in the US, saving years in the approval process.

At The ALS Association, we’ve increased efforts to educate our legislators about the vital needs of people with ALS and potential changes in laws that affect individuals battling the disease. We allocated Ice Bucket Challenge funds to develop an FDA guidance document, which helped to navigate the regulatory pathway for approval of effective therapies. This document has been credited in helping expedite the process of FDA approval of Radicava by reducing obstacles that would limit access to effective treatments.

Learn more about the progress Ice Bucket Challenge donations have funded.

Locally, donations from the Ice Bucket Challenge had an immediate impact on people with ALS in eastern Missouri and central and southern Illinois. It enabled us to increase the amount of medical equipment, nutritional supplements, home modification and adaptive devices for people with ALS, as well as doubled the amount of respite care provided to much-deserving caregivers.

We’ve doubled financial support to our area’s only ALS Certified Treatment Center, located at Saint Louis University, and strengthened partnerships with our affiliated clinics. And, in order to better serve our nation’s heroes – who are twice as likely to be diagnosed with ALS as the general public – we are proud to be participating in a National Veterans Administration initiative, collaborating with clinicians in the St. Louis VA hospital system to establish an ALS specific clinic in our service area.

Why it Mattered

While some people labeled the challenge a flash in the pan, a gimmick, or “slacktivism,” to the ALS community, it was no joke.  Aside from the incredible awareness and the flood of donations, the unprecedented outpouring of support provided hope for many who were living with an ALS diagnosis. We heard from so many of the people we serve who told us that watching the videos made them feel like “the world was on their side, rooting them on.”

One gentleman in particular, Don Stewart, who had fought ALS for seven years, was so touched by the thousands of people posting their videos to social media that he decided to make his own video to thank everyone who had participated in the challenge.  Don, a longtime banjo player before ALS robbed him of his ability to play, needed oxygen to breathe, but decided to go without it for the time it took to express his gratitude.

 

Don died in 2016 after fighting ALS for nine years.  “He may have lost this one battle,” Don’s wife Saundra said, “but we’re still waging the war.”

What you can do

This August, we’d like people to continue talking about ALS.  We know lightning doesn’t strike twice, but we’ve seen what an outpouring (pardon the pun) of attention can bring. We’re asking for your help getting people talking again — about support for families, about the need for research, about what a difference those buckets of ice water made.

During the month of August, we’re asking you to re-post your Ice Bucket Challenge videos and photos to your social media accounts using the hashtag #TBIBC.

With your post, please consider sharing a fact or two about the incredible impact that the ALS Ice Bucket Challenge has had for people with ALS and their families.

Thank you to all of you who participated in the ALS Ice Bucket Challenge of 2014 (and in subsequent years).  You have truly changed the course of this disease forever.  We look forward to seeing your photos and videos throughout August and appreciate your keeping the conversation about ALS on the forefront.  We’re grateful for your support of people and families fighting ALS!

Learn more about ALS at www.alsa-stl.org.

ALS Advocacy: Why It’s Important and What You Can Do to Make a Difference

An important part of our mission at the ALS Association is to advocate for changes in laws and regulations that affect thousands of people living with ALS and their families. ALS advocacy has resulted in policies that not only advance the search for treatments and a cure, but has also helped to ensure that people living with ALS have access to the healthcare they need and deserve to maintain a higher quality of life.  ALS advocates from around the country have been instrumental in passing legislation that expanded veteran’s benefits, increased national data collection through the ALS Registry, and improved insurance and disability coverage for people with ALS.  More than $950 million in federal funding has been generated for ALS-specific research since 1998.

Advocacy is especially important now because of the many legislative changes being proposed to healthcare, social assistance, and other areas that impact the lives of people who are living with ALS. Many legislators don’t know about the experiences of someone who is living with ALS or how the disease can impact a family.  That’s why your involvement is crucial – as an advocate, you can help educate the decision-makers who are making determinations about the lives of people with ALS.

Not sure where to start? There’s no special training needed; most of what a good advocate does is intuitive and grows out of a few basic principles.  Here are a few tips to help you change the laws and policies for people affected by ALS:

Do your research.
Visit the House of Representatives websitethe U.S. Senate website,  the Centers for Medicare and Medicaid Services, check out The ALS Association’s Advocacy Action Center, or use digital tools and apps like Countable for policy updates and to track legislation. Learn more about the issues affecting you and your family.

Write, email or call your legislator.
Express your feelings about the issue; use your own words and include your personal experience. Speak or write from the heart, and ask for a response. One personal story can change a person’s mind and heart.

Utilize the media.
Write a letter to the editor of your community newspaper or contact your local anchor. Post something to your social media accounts and spread the word that help is needed on behalf of people battling ALS.

Sign up to become an advocate on our Chapter website, www.alsa-stl.org. Join a community of advocates who have realized significant accomplishments in our nation’s capital through active participation in the process.

Contact our office at 314-432-7257 or by email at advocacy@alsastl.org. We will be happy to help guide you and answer any questions you might have about ALS advocacy.

By continuing to share the ALS story with legislators and putting a face on this disease, advocates can advance legislative and regulatory changes that affect families living day to day with an ALS diagnosis. Decision-making centers around you, the voters. At some point in the legislative process, there will be one letter or one call that breaks the camel’s back and affects change. Make your voice heard and make a difference for people with ALS.

Living with ALS in Rural America

In a perfect world, everyone would have equal access to healthcare resources (let’s get real, in a perfect world, ALS doesn’t even exist).   Until that time – when we live in a world without ALS – living with ALS in a rural community can be extra challenging.    According to The National Rural Health Association here are just a few reasons why:

  • 53% of rural living Americans lack access to 25 Mbps/3 Mbps pf bandwidth; the benchmark for internet speed according to the Federal Communications Commission.
  •  Lack of high speed internet can be a hindrance for ALS patients in accessing information and communicating with other patients, thus heightening a sense of isolation that most generally is associated with an ALS diagnosis.   Limited technology support can also limit choices to use adaptive devices to help communicate or automate one’s home to overcome obstacles created by ALS.
  • Rural America residents have greater transportation difficulties reaching health care providers and are often required to travel great distances to reach a doctor.
  • ALS specialty clinics provide the best care possible for patients, but often, with ALS travel becomes difficult and patients must rely on their primary physician to coordinate in home services and other community referrals.
  • Rural communities often do not have local neurologists who have ever seen an ALS patient.  Patients often have to be referred to higher populated cities to see a neurologist which can bring on additional stressors for the family. Finding the time to take off work to complete the trip, having an accessible vehicle to transport the patient, or even affording the ever rising price of gas to get to the city can be stressful!
  • Often times, when a family receives an ALS diagnosis, they are referred back to their hometowns for therapies and in home care. Due to lack of agencies who are familiar with ALS, it is hard to find someone knowledgeable about the disease and it gets very frustrating to the patient and their family members.

When you chose to live in rural America, it is a lifestyle, not just a location.  Obstacles exist, but become just a part of everyday living. In my experience of working and living in rural Missouri and Illinois, you find that people tend to rely more heavily on each other and their communities.  Time and time again, I have witnessed neighbors (not just those to the immediate left or right) but entire towns or counties who begin ‘showing up and doing’.  They very quickly fill the care team of an ALS patient and provide a huge support that the family so greatly needs.

This world we live in might not be perfect, but when the human spirit prevails and see communities band together, it can make it feel a few steps closer to perfection.

The ALS Association St. Louis Regional Chapter can connect people with ALS and their families with the local resources they need, including equipment loans, grants to help with ALS-related expenses, transportation services, and access to ALS clinics and clinical trials. Visit www.alsa-stl.org to learn more.


Lori Dobbs is a care services coordinator with The ALS Association St. Louis Regional Chapter.  She has nearly twenty years of experience working with ALS families in the Missouri boot heel, southeast Missouri and the southern Illinois region, where she coordinates in-house services and community referrals. Lori joined The Chapter staff in 2010, bringing with her 12 years of service with ALS families.