ਡੈਨ ਪੇਰੇਜ਼ ਨੂੰ ਯਾਦ ਕਰਦੇ ਹੋਏ, FSHD ਸੋਸਾਇਟੀ ਦੇ ਸਹਿ-ਸੰਸਥਾਪਕ ਅਤੇ FSHD ਖੋਜ ਅਤੇ ਵਕਾਲਤ ਵਿੱਚ ਇੱਕ ਪ੍ਰੇਰਕ ਸ਼ਕਤੀ।
ਡੈਨ ਪੇਰੇਜ਼ ਨੂੰ ਯਾਦ ਕਰਦੇ ਹੋਏ, FSHD ਸੋਸਾਇਟੀ ਦੇ ਸਹਿ-ਸੰਸਥਾਪਕ ਅਤੇ FSHD ਖੋਜ ਅਤੇ ਵਕਾਲਤ ਵਿੱਚ ਇੱਕ ਪ੍ਰੇਰਕ ਸ਼ਕਤੀ।
At its December meeting, the FSH Society’s Board of Directors elected Marie Morrell, JD, as its newest board member. Marie has worked in the aerospace and defense industry since 2003 and currently serves as a Vice President and in-house counsel for an Arizona-based company that designs, develops and manufactures survivable fuel systems for helicopters around the world. Her multifaceted experience includes contract negotiations with domestic and international customers, both government and civilian, and coordination and planning with finance, operations, and supply chain. She earned her Bachelor of Science and Juris Doctorate degrees from Arizona State University.
Marie’s husband, Landon, and one of their daughters and several of his family members are affected by FSHD to varying degrees. Marie and Landon are directors of the FSH Society’s Arizona Chapter and live in Gilbert, Arizona, within walking (or scooter) distance from their children and grandchildren.
We are grateful to Marie for offering her valuable time and experience to help advance our mission.
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I was diagnosed with FSHD 15 years ago. Mobility of my arms are not doing well. Foot drop makes me fall often. I’m so tired and scared. I don’t know what I’m to do anymore. I live in Charleston SC and I go to Augusta Ga for MD doctor Jerry Prutt because of cost of insurance. I’m lost on what I’m to do and how to take care of my family. I’m sorry to ask but can you direct me in the right direction.
Apologies for the delay in responding. I needed to check if we have any resources in your immediate area. Unfortunately, I couldn’t find any. Charlotte, NC, and Atlanta would be the closest locations where patients have recommended physical therapists and doctors. However, there is much you can do for yourself.
First, please do sign up with the FSH Society so you can receive notifications from us about educational resources, etc. that may be helpful to you. It’s free, and we appreciate it because it lets us know where people are located and guides us as to how to invest our resources in developing local chapters, working with clinics, etc.
https://www.fshdsociety.org/become-member/
I think you would benefit from seeing a physiatrist (a doctor specializing in rehabilitation medicine), who can advise you on exercises, braces, and other adaptations to reduce falls. The physiatrist doesn’t have to be an expert in FSHD, as long as he or she can assess your strengths and weaknesses and recommend helpful interventions.
Falling is the number one concern for me, because this can lead to severe injuries. With FSHD, you don’t want to break a leg because recovering from that can be an uphill battle. You might also consider using a scooter for traveling longer distances, as a way to conserve your energy.
Here are some additional resources that may be helpful:
Our physical therapy brochure
https://www.fshdsociety.org/wp-content/uploads/2017/08/FSH-Society-PT-for-FSHD-Brochure.pdf
Muscle activation technique
https://www.fshdsociety.org/2019/01/muscle-activation-strategies-for-fsh-muscular-dystrophy/
https://www.fshdsociety.org/2017/06/muscle-activations-exercises/