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“Into the Light” – The story of the FSH Society

Produced for the FSH Society’s 25th anniversary, our new documentary tells the story of how the Society’s work has led to the discovery of the genetic cause of facioscapulohumeral muscular dystrophy and brought patients out of the darkness into the light. We premiered the film at our CureFSHD gala on November 11.

To all the patients, families and friends who have supported the Society through the years, this is your story. Please share this with others to help them understand what FSHD is, the great progress that has been made, and how their support can lead to a brighter future for tens of thousands of patients.

Ask the Physical Therapist: Asymmetrical Wasting and Braces

The following is part of the transcript of a question-and-answer session, conducted over the FSH Society’s Facebook page, with Julie Hershberg, PT, DPT, NCS. Hershberg is a physical therapist who is a Board Certified Neurologic Specialist.  She practices at [re+active] physical therapy & wellness and is an instructor in Doctor of Physical Therapy program at USC.

With wasting occurring asymmetrically (right/dominant arm faster than left), how should I modify my exercise regimen? Should I consider wearing some kind of undergarment support, or is it better not to give the muscles this support and make them work?

First, for your exercise routine—you should consider exercising each limb at its own capacity—for example, not lifting the same amount of weight in both arms. This will be very specific to your individual strength. I am not sure which type of undergarment support you are referring to, but I will recommend something like an abdominal binder for people who have very weak abdominals because it will help prevent overuse of other muscles for postural support and can help decrease some postural deformity that can occur over time. Wearing a support does not necessarily mean that you don’t use the muscles (in fact, sometimes they work better), and most people will report improved function.

Other compression garments for training (for example, the compression socks or arm sleeves) could also potentially be helpful (I certainly don’t think they would be harmful unless you have a circulatory disorder, so please consider your other health history if that is relevant). While there is not definitive research on these types of garments and performance, my philosophy is: If you feel better and are more likely to exercise and do the things you love with it, then use it!

What is your thought on canes/braces for weak legs? Will they cause dependency?

My first advice is for people to use devices to keep them independent and enjoying life as much as possible. If wearing a brace or using a cane or wheelchair lets you do the things you love, then absolutely—the benefits outweigh the risks, and your quality of life will soar.

However, there are some things to consider: First, for bracing—there is not evidence to show that wearing a brace decreases muscle activity. This is a common myth. Most people will be able to walk faster and more smoothly with the brace on, and therefore feel more comfortable wearing it.

The same is true for a walker or cane. Devices for walking can immediately make you feel more comfortable and confident. One thing I often recommend is trying the devices and seeing if you walk farther or have fewer trips and falls—and then, in that case, you will walk more and end up stronger and more fit in the long run.

My advice is to use the least restrictive device that gives you the most freedom, safety, and independence. A PT can usually do trials with all kinds of devices to help you choose the best one for you.

Download our medical alert card

If you ever find yourself in the emergency room, you want your medical care team to know about your status as a person with FSH muscular dystrophy. Our medical alert card, which provides essential information for emergency responders, is available for you to download, cut out, fold and carry in your wallet. Just click here: FSH Society Medical Alert card.

Ask the Physical Therapist: What are the best exercises for different muscles?

The following is part of the transcript of a question-and-answer session, conducted over the FSH Society’s Facebook page, with Julie Hershberg, PT, DPT, NCS. Hershberg is a physical therapist who is a Board Certified Neurologic Specialist.  She practices at [re+active] physical therapy & wellness and is an instructor in Doctor of Physical Therapy program at USC.

Q. What’s the best exercise for arms unable to move above shoulder height?

A. Best exercise for arms unable to move above shoulder height: oh, yes—a very big question! Again, this depends on how much movement and strength you have, so I cannot give specific advice, but I will offer these general suggestions. I often recommend exercises in which you do not have to move against gravity. A good example is a shoulder exercise lifting the arm to the side while lying down. This provides good scapular support, and you don’t have to lift against the force of gravity. Continue reading

Global FSHD Registry Workshop

Participants at the ENMC workshop of FSHD registries

Participants at the ENMC workshop of FSHD registries

International workshop in November reaches consensus on a global FSHD patient registry. 

If you are an individual with FSHD, or a family member, you may have been asked to join a patient registry. Perhaps you are wondering what a registry is?

Disease registries are an essential tool for advancing research to understand a disease, improve patient care, and develop treatments. Typically, registries collect patient contact information, and demographic and diagnosis data. In addition, registries may collect varying amounts of data about your health and symptoms. The data will be anonymized and accessible only by authorized individuals, to protect the privacy of patients and families who participate. Continue reading

FSHD imaging study is recruiting volunteers

The Kennedy Krieger Institute is recruiting volunteers with FSHD for a clinical research study. Volunteers will be asked to undergo muscle strength testing and non-invasive magnetic resonance imaging (MRI) and spectroscopy (MRS) of the muscles. The strength testing and MRI/MRS scans will be repeated every 3-6 months for up to 2 years.

We are particularly interested in recruiting individuals over the age of 12 years who started having symptoms of FSHD within the past 3 years. Continue reading

Looking Back on a Year Full of Strength, Part 3 of 3

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As we come up on the last days of 2016, we are taking one final look back on the incredible year it has been, and one last moment to recognize those who have shared their inspirational stories, strength, and commitment to continue to do the things that they love. As we mentioned in Part 1 and Part 2 on our blog, we are sharing stories we received throughout the year from fellow FSH Society members that demonstrate how they won’t let FSHD stand in their way.

Your support is life-changing to those in the Society – and with your continued dedication to finding a treatments and a cure.

Continue reading below to hear the stories of Ryan, Aditya, and Lynne on how they are raising awareness, doing what they love, and how the Society has helped them along the way!

Continue reading

Looking Back on A Year Full of Strength, Part 2

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As we continue to look back on the incredible year we have had, we want to recognize others who have shared their inspirational stories, strength and commitment to continue to do the things that they love. As we mentioned in our first post, throughout the remainder of 2016, we will be sharing these stories from fellow FSH Society members that demonstrate how they won’t let FSHD stand in their way.

Your support is life-changing to those in the Society and with your continued dedication to finding a cure, we know that this challenge is possible. Continue reading below to hear more from Kristen, Tom, and Zabrisa on how they are raising awareness, doing what they love and how the Society has helped them along the way!

Continue reading

Waking up your muscles with Lynnette Rasmussen

by Amy Tesolin-Gee, Midland, Michigan

Several FSHD patients, family members, and FSHD-experienced clinicians came together in Ann Arbor on June 4, 2016, for an educational meeting including lots of helpful, informal discussion time. Many people traveled a good distance, and some drove from as far away as northern Michigan and Columbus, Ohio.

Lynnette Rasmussen and Laura Damschroder shared invaluable lessons learned during their four-year experience working together—Laura, as a patient with FSHD, and Lynnette as a certified Pilates and occupational therapist. Their experience has revealed an effective approach to finding muscles Laura had thought were lost. Lynnette has explored ways to target lost muscles to maximize Laura’s independence and mobility. Continue reading

FSH Watch Issue 3 is out!

We are excited to announce the arrival of our newest edition of the FSH Watch.  This Watch not only shares patient stories and information on coping with FSHD, but also contains updates on the research projects being funded by the FSH Society with your support!  We are happy to FSH Watch Issue 3 2016share all of this going into the holiday season.  This edition of the Watch features…

  • Daniel Perez, President and CEO of the FSH Society, looking back on 25 years of searching for a cure
  • The annual research report on progress understanding the biological mechanisms of FSHD and developing treatments
  • Ask the PT! Physical Therapist Julie Hershberg answers patient questions on all things related to physical therapy
  • Personal stories from Christer Oldenhov, Katie Ruekert, Carden Wyckoff, Susan Mayes discussing topics ranging from adjusting to a scooter to donating muscle to research to the development of Colorado’s first annual Walk & Roll fundraiser!
  • Michelle Dodd explains how NeuroPhysics has helped her twelve-year-old son
  • FSH Society members gather in North Carolina and Washington, DC to hear from doctors and researchers

  Download this edition of the Watch here!