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.

The Rudin Family Keeps on Truckin’ at the Walk to Defeat ALS®

When you attend a Walk to Defeat ALS®, you’ll be surrounded by hundreds of people who have been touched by this disease, each with their own story of how ALS has impacted their lives. Some are still fighting, and complete the route in their wheelchairs, next to an army of supporters cheering them on.  Some have lost someone special to the disease, but are committed to continuing the fight in memory of their friend or loved one.  All are warriors in the fight to defeat ALS.

Chatham, Illinois resident Ben Rudin was just 40 years old and the father of two young sons when he was diagnosed with ALS. He and his wife, Rebecca, participated in the Springfield Walk to Defeat ALS®, forming a team of family and friends to walk in support of a cure and to fund care for people living with the disease. An avid music lover and fan of the musical group, the Drive By Truckers, the family named their team, Truckin’ with Ben. 

Ben lost his battle with ALS in 2014, but Team Truckin’ with Ben still celebrates his memory through the Walk to Defeat ALS® in Springfield. Rebecca recently shared her story about why the Walk is so special for their family and why this year will be bittersweet for them.

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“After experiencing some wrist and hand weakness during the summer of 2011, Ben decided to go to the doctor with what he thought was carpal tunnel syndrome.  At the initial visit the doctor couldn’t decide whether or not to send him to an orthopedic specialist or a neurologist.  After spending about 10 minutes with the orthopedic doctor, she sent him to the neurologist who spent a lot of time looking at his nerves and muscles.  Ben spent the next six weeks having tests, including EMG’s and MRI’s, and on October 24, 2011 was given the diagnoses of ALS or Lou Gehrig’s disease.  Because there is no single test for this disease we were told to be guarded with this information until additional tests could be conducted to confirm the diagnoses.  That was a very trying and hard 6 months.  Our two young boys Elijah and Liam knew that there was something going on, but until we got the confirmation we didn’t put a name to it.  Rather, we decided to start doing bucket list activities as a family.

Rudin Family

The Rudin Family has been participating in the ALS walk since 2012.  During the Springfield walk that year, Ben, the boys and I were in Hawaii making lifelong memories.  Our extended family and friends walked for us.  When we returned we decided that we would walk at the St. Louis walk.  Ben was one of the ribbon cutters – another memory that will never be forgotten.  That year he was able to walk the entire route of the walk.  At the ALS walk in 2013, we walked in the rain at Washington Park.  Family members took turns pushing Ben in a wheelchair because he quickly became fatigued when walking.   In 2014 Ben was in his power wheel chair and was determined to do a lap all on his own.  The Truckin’ with Ben team had over 300 registered members that day.  Following the walk everyone celebrated Ben with a banquet that friends planned.  It was an amazing day and lots of pictures were taken.  Ben passed away four days later.  The strength he showed us on that day will never be forgotten.

2013 Walk

This year the Walk has a bit of extra special meaning.  The walk is on Father’s day weekend and this is our fifth father’s day without Ben.  It’s always a bittersweet day as the boys and I reminisce about all the things we used to do with dad.  We typically go out to his memorial at Southwind Park and then grill out his favorite meal of hamburgers.  This year also marks Elijah’s (our oldest) 18th birthday and high school graduation.  He is following in his dad’s footsteps and attending Illinois State University to study actuarial science.  Ben worked for insurance companies and instilled the love of math in his boys.

Mom and boys2

It’s never easy to lose a loved one, but the ALS walks have helped us remember and celebrate a life well lived.  We miss Ben terribly and know that he watches over us every day.”


Join the fight against ALS – sign up today for the Springfield Walk to Defeat ALS®, Saturday, June 16 at Southwind Park, or the St. Louis Walk to Defeat ALS®, Saturday, June 23 in Forest Park.  Support people with ALS and their families and help us find treatments and a cure – we need you!

Nine Questions with Dr. Ghazala Hayat

Dr. Ghazala Hayat is board certified by the American Board of Psychiatry and Neurology and the American Board of Electrodiagnostic Medicine and has clinical neurophysiology certification by the American Board of Psychiatry and Neurology.  She is the director of Neuromuscular Services, Clinical Neurophysiology Fellowship and Clinical Neurophysiology Laboratory and the ALS Certified Center of Excellence at Saint Louis University.

Can you tell us a little about yourself?

I graduated from King Edward Medical College in Pakistan. I did my neurology residency and Neuromuscular Disorders Fellowship at Medical College of Virginia. I have been at St. Louis University since 1986. I am Professor of Neurology, Director Neuromuscular Services, Clinical Neurophysiology Services; Director Clinical Neurophysiology Fellowship and Director of ALS Certified Center Of Excellence.

I was recently appointed as Director of CQI for education and research.

Why did you decide to become a neurologist?

I have loved math and physics since high school. Neurology “makes sense to me” as there are tracts, pathways which will correctly predict where the lesion is. Over years many breakthrough discoveries are making Neurology even more interesting.
How long have you been treating people with ALS?

I was involved in ALS care/therapy since my fellowship in Neuromuscular Disorders at Medical College of Virginia. I continued taking care of ALS patients at the neuromuscular clinic since 1886. About 22 years ago the ALS Certified Center of Excellence was established.

How is ALS diagnosed?

The diagnosis of ALS is clinical with laboratory tests ruling out other causes. Patients usually present with progressive weakness of arms, legs, difficulty speaking, swallowing, breathing and walking. The examination shows weakness of muscles, loss of muscle mass, tightness of muscles, hyperactive reflexes, muscle twitches, speech difficulties and gait imbalance. Not every patient will have the same symptoms and may develop some of these symptoms over time. Blood tests are performed to rule out any ALS “mimickers” or other causes of weakness. Imaging of the spine and brain is done to look for any compression, stroke or other causes for weakness. Nerve conduction studies and electromyography can help to confirm the diagnosis if there are wide spread changes in the body.
CarmenandDr.Hayat

How is the ALS clinic at Saint Louis University different from a typical clinic?

The ALS clinic is a multidisciplinary clinic. When the patient is seen at the ALS clinic, he/she is evaluated by a neuromuscular specialist, resident/fellow, ALS nurse coordinator, ALSA representative, Physical therapist, Occupational therapist, Respiratory therapist, Speech therapist, Dietician, and Social worker. If needed, we have personnel to provide different equipment evaluation. We have core group of gastroenterologists, pulmonologist, psychiatrists and psychologists for further evaluation and therapy. At the end of the clinic we have round table discussion about each patient and the decisions about different disciplines are made with consultation. This coordinated care provides the best possible treatment to the ALS patients.

Patients can contact the ALS nurse and the physician in between visits for any issues.

What do you love about working at SLU?

Commitment to patient care, education and clinical research.

What are some of the exciting developments in research in ALS?

Stem cell, gene therapies, learning more about different genes.

What are the most common misconceptions about ALS?

“There is a cure available in many parts of the world.”  Sadly I have seen patients and families spending their life savings on these therapies, which have not proven to be helpful at all.

“Feeding tubes are not helpful.” Feeding tubes improve quality of life and patients can conserve “energy” for other important functions.

“Once the diagnosis is made, go home and take care of your business.” We can offer many services to the patient and many studies have shown quality of life and may be length of survival to be better for the patients followed in multidisciplinary clinics.

What would you tell someone who has just been diagnosed with ALS?
  1. We do not have the cure for ALS but we have therapies. Now we have 2 FDA approved medications.
  2. Follow in a multidisciplinary clinic to get the best possible care.
  3. We will be with them at every step to help and guide.
  4. Take your time, but discuss with your loved ones to decide about feeding tube and respirator.
  5. Have an advanced directive.
  6. Read about research studies and see if he/she is interested in any.
  7. Take one day at a time.
  8. Progression of weakness will be challenging but we will be able to help with assistance from different disciplines.
What is the most rewarding thing about working with people who have ALS?

I am amazed by the courage of the ALS patients, their caregiver. How they adapt to changes, have smiles on their faces with all the challenges and are willing to try new treatment for research studies, even if they will not see the benefit.


For more information on multidisciplinary care for ALS and the ALS Certified Center of Excellence at Saint Louis University, visit our website.

 

ALS Advocates Will Make Their Voices Heard

Tomorrow, more than five hundred advocates will gather on Capitol Hill in Washington, D.C. for National ALS Advocacy Day.  ALS advocates from all around the country will meet with members of Congress to share their stories and educate legislators about the importance of continued funding for ALS research and patient care.

Through the efforts of ALS Advocates,  more than $1 billion in federal funding has been generated for ALS-specific research since 1998. In fact, ALS Advocacy efforts have been responsible for many legislative victories, including securing veterans benefits, enacting the ALS Registry Act, appropriating funding for caregiver relief and the ALS Research Program at the Dept. of Defense, and passing the Medicare waiver.

One of those advocates who will be making her voice heard is Pattie Hamlin of Nokomis, Illinois. Pattie, who was diagnosed with ALS two years ago, and her husband Lester, will be participating in ALS Advocacy Day for the second year in a row.   She shared with us her thoughts on her role as an advocate for people with ALS:

“When I was diagnosed with ALS September 2016, the only experience my family and I had had with ALS was participating in the ALS Ice Bucket Challenge. To learn that I had a disease that would slowly lock me into my own body, was devastating. Depression hit hard. An ALS Association care services coordinator came to visit. She explained some of their services and asked what I needed. I told her many of my friends wanted to help me, but there was really nothing that they could do to help me at this point. She suggested that I ask them to sign letters to the congressman requesting continued funding for ALS research.

Somehow over the next week this just got me out of my funk. I started asking everybody I knew to sign the letters, I asked my friends to ask their friends to sign the letters. We ended up with about 3000 letters for each of my congressmen. A side benefit to this effort was that I was able to teach many people about the effects of ALS and the fact that there is no cure.

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Pattie with the more than 3,000 letters of support she collected to deliver to her legislators.

The ALS Association of St. Louis asked me later if I’d like to go with them to Washington DC to advocate directly to my legislators.  My husband and I went to Washington, D.C. that May, we were able to meet many people with ALS and their caregivers. It was a great experience to know others that were dealing with the same things that I was. In Washington we learned a lot more about what’s going on in the area of research for ALS.

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ALS Advocates visit Capitol Hill in 2017.

We spent one whole day on the Hill meeting with legislators or their representatives and explaining the importance of continued research. Many people don’t realize it but if you were in the military you’re twice as likely to be diagnosed with ALS as other people; this makes it even more important that we find a cure. My husband and I look forward to going back this year to meet up with the friends we made last year and to advocate for continued research in finding a cure.”

Even if you can’t be in Washington DC tomorrow, you can make your voice heard.  Help us send Congress a unified message that we will not stop until we have a cure for ALS – post, tweet, email or call your legislator and tell them to support people with ALS and their families! And visit our ALS Advocacy Action Center to learn more about our legislative priorities and how you can become a virtual advocate in support of legislation that advances the search for treatments and a cure.

Don and Claire Bratcher: Imagining a World without ALS

ALS Association volunteers are a special breed of superhero — they are the heart and soul of this Chapter. They give up countless hours of their personal time to provide us with all manner of help – in the office, in the homes of people living with ALS, on our board of directors, as public policy advocates, on our committees, at our special events – without asking for anything in return.  

So many of our volunteers have been personally impacted by ALS, and have seen up close and personal the devastation the disease brings upon a family.  These wonderful people become volunteers to fight for a cure and to ensure that other families are supported physically and emotionally on their disease journey.

Two of those special volunteers are Don and Claire Bratcher, who have been ALS warriors and volunteers for close to 15 years.  Claire recently agreed to share their story and we’re delighted to post it here in her own words. 


And so my story begins. In 1990, at age 80, my dad, Larry Boberschmidt, Sr., was diagnosed with spinal muscular atrophy and died at age 82. In 1994, at age 55, my sister, Marie Serena was diagnosed with ALS and died at age 57. In 2002, at age 55 my sister, Eleanor Ecuyer, also heard the words, “You have amyotrophic lateral sclerosis (ALS)” – aka Lou Gehrig’s disease – and died at age 57.  I then realized my dad probably was misdiagnosed and also had ALS.

The most common form of ALS in the United States is “sporadic” ALS, which means that the disease can affect anyone, anywhere. Our family falls in to the other ten percent of cases – the inherited form of the disease, called “familial” ALS.  Families members who fall into this category have a fifty percent chance that they will inherit the gene mutation and may develop the disease.

 

Familoy members
Family members we celebrate.

Lou Gehrig’s wife name was Eleanor. On July 4, 1939 at the young age of 36, Lou Gehrig announced to the crowd in attendance at Yankee Stadium who came to watch him play, that instead he was retiring from the game he loved because he had been diagnosed with ALS. My sister Eleanor died on July 4th. Coincidence? I don’t think so. Eleanor was probably the most independent person I have ever known, but when you live with ALS, this horrific disease robs you of all of your independence which was, for Eleanor, the most difficult thing about having ALS. She didn’t want to have to depend on everyone for everything. I believe by her death occurring on July 4th, it was a way she showed that she was regaining her independence.  Despite all of that, she considered this disease a gift, as it brought people together in prayer who ordinarily would not even speak to each other.

Memory Wall
Our grandson, Shane Hill, looking at our family’s photos on the memory wall at the Walk to Defeat ALS.

In 2003, I decided that I needed to do something more. I knew that I couldn’t waste any more time with negative feelings about what ALS had done to our family, but decided instead to channel those feelings into positive actions. I reached out to the St. Louis Regional Chapter and asked what I could do to help. That is when the Eleanor’s Hope team was formed and we became a part of the Walk to Defeat ALS. I still felt I needed to do more, so I became a part of the St. Louis Regional Chapter’s Walk committee. I didn’t know it at the time, but not only was I becoming a member of this committee, I was joining a fabulous group of people that I now consider my ALS family.

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The Eleanor’s Hope Team

The Eleanor’s Hope team continues to walk for those who can’t and will continue to be part of the Walk to Defeat ALS as long as it takes. As the song goes, “I Can Only Imagine.” I would add to that and say that my prayer is “I can only imagine a world without ALS.” I believe we are very close to realizing that dream.

Claire and Don Bratcher
Eleanor’s Hope Team Captain

If you would like to become a volunteer and join a team of warriors dedicated to fighting ALS, please visit our website to learn more about available opportunities.  

And, join us at the Springfield Walk to Defeat ALS June 16th at Southwind Park, and at the St. Louis Walk to Defeat ALS on June 23rd at Forest Park.

Caregiver Confidential: Memories

We didn’t realize we were making memories, we just knew we were having fun.
—Unknown

A few weeks ago, I was sorting through boxes of family photos in the hope of organizing and creating some photo albums. During my search, I came across photos from our trips to Mexico and Hawaii in 2006 through 2008. Although my husband Brian had been diagnosed with ALS when the photos were taken, I had fond memories of our vacations. I recalled how much Brian, our daughter Leah, and I enjoyed ourselves despite his illness. We had never been to Playa del Carmen, Puerto Vallarta, and the Hawaiian Islands, so each trip was magical and a new adventure. Although somewhat challenging to travel with Brian as his disease progressed, in retrospect I am so thankful that we created happy memories during what otherwise was a very sad period.

I can attest to the importance of spending meaningful family time that does not dwell on your loved one’s illness. When we took our 2006 trip to Mexico, our daughter Leah was unaware that Brian had ALS. Brian’s symptoms were barely noticeable to anyone but me. On our next excursion in November 2007, Brian had just retired from his law practice and had told colleagues, friends, and family about his diagnosis. Brian enjoyed our trip to Puerto Vallarta, whether the cuisine, music, or walks on the beach. Fortunately, he had only minor physical limitations.

By the time of our vacation to Hawaii in January 2008, however, we needed to be creative in our approach to vacation activities. We could not do hikes or big excursions because Brian’s balance and mobility were limited. Instead we stuck to walks on paved sidewalks along the beach, driving tours with stops, and lots of wonderful eating. We enjoyed a Luau and took an amazing whale watching tour. Simply put: We had a great time.

Hawaii vacation
Idelle, Leah, and Brian enjoying dinner in Hawaii, January 2008.

We also created some wonderful memories by hosting a family reunion for all the Winer cousins in May 2008. Initially when Brian’s sister Joyce proposed St. Louis as the reunion site, I was unsure whether it was a good idea. It turned out to be a great idea and a much-needed distraction from wheelchair shopping and home modification. Brian and I enjoyed making the hotel and restaurant reservations, hosting a welcome cocktail party at our home, and engaging in good conversation with supportive family. It was the best medicine that could have been prescribed.

My message here is simple: Create a legacy of happy memories for your entire family while you can. It does not matter where you go and what you do; it is the people you are with that matters. With ALS, there is such a small window of opportunity to make memories and share meaningful time together, aspects of life that healthy people all too often take for granted. For an ALS patient, today—not tomorrow—is the best day of one’s life, and it is important to make every moment count.

How has your family created lasting memories? What activities have you enjoyed together? Please share your experiences and thoughts on this or any aspect of caregiving, current or past, in the comments section. Let’s continue the conversation.
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Idelle Winer was primary caregiver to her husband Brian, who passed away in 2010 after a 5-year battle with ALS. A retired medical publishing professional, Idelle offers her unique perspective on a variety of caregiving topics in our feature Caregiver Confidential.

The National ALS Registry

The National ALS Registry is the single largest ALS research project ever created and the only population-based registry in the U.S.  The registry collects information and demographics on people with ALS, connects patients to clinical trials, and funds ALS research.  The purpose of the registry is to learn more about who gets ALS and what causes ALS.  This will hopefully give scientists a more complete understanding of the disease and enable them to find a cure.

Get the Facts- ALS registry

The National ALS Registry also includes a Biorepository that stores samples for future research.

Biorepository

Recently, the Registry was used for the first time to recruit patients and caregivers into a landmark patient-focused drug development survey that captured important information on the burden of ALS across multiple dimensions, including: symptom experience, quality of life, health care resource utilization, and emotional well-being.  Other important advances made possible by the ALS Registry include attaining a 96 percent enrollment rate for registrants to be notified about ALS research opportunities (more than 100,000 such notifications being sent for over 30 clinical trials) and research funding for 13 institutions to examine what factors may contribute to ALS.  ATSDR recently released the third report on the results of the data gathered by the National ALS Registry.  You can read the report here.

If you are interested in joining the National ALS Registry or learning more about the latest news from the Registry, please visit https://www.cdc.gov/als/.

It is vital that the National ALS Registry continues to be fully funded.  Congress has started work on the Fiscal Year (FY) 2019 appropriations process and Representatives Eliot Engel (D-NY) and Peter King (R-NY) are circulating a bipartisan Dear Colleague letter in the House of Representatives (see it here), urging their colleagues to support $10 million in funding for the Registry.  The deadline for this letter has passed, but there is still more you can do to help make sure your Representatives are aware of the importance of issues affecting people with ALS.

Visit the ALS Association’s Advocacy Action Center to learn about the latest updates and news about legislative and regulatory issues being addressed by The ALS Association and to sign up to receive alerts when your action is needed to support people living with ALS.