Lighting the Way to a Cure

  • Financials
  • Patient Library
  • Blog
  • Calendar
FSHD Header Logo
mobile-logo

  • Who We Are
        • About Us
          • History
          • Mission
          • Our Team
        • Our Impact
          • Therapeutic Accelerator
          • Education
          • Advocacy
          • Our Partners
        • Journey To A Cure
          • 2022 Donor Impact Report
  • Understanding FSHD
        • What is FSHD
          • Symptoms
          • Diagnosis
          • Early-onset FSHD
          • Genetic Testing
        • Living with FSHD
          • Newly Diagnosed?
          • Finding Care
          • Symptom Management
          • Patient Library
        • FSHD University
          • Physical Health
          • Wellness
          • Research
  • Get Involved
        • Support Us
          • Ways to Give
          • Become a Torchbearer
          • Raise Awareness
          • Volunteer
          • Fundraise
        • Advance Research
          • Patient Involvement
          • True Cost of FSHD Study
          • Clinical Trials
          • Donate tissue
        • Connect
          • Find Your Local Chapter
          • Join the Community
          • World FSHD Alliance
          • Online Communities
        • Events
          • Walk & Roll to Cure FSHD
          • Events Calendar
          • FSHD 360 Regional Conferences
          • FSHD Connect Conference
  • Research
        • For Patients & Families
          • Advance Research
          • True Cost of FSHD Study
          • TestFSHD genetic testing
          • Clinical Trials
        • For Researchers
          • Apply for a Grant
          • Research We Have Funded
          • Resources
          • Int’l Research Congress
        • For Clinicians
          • FSHD Masterclass
          • ICD-10
        • Global Collaboration
          • Therapeutic Accelerator
          • Clinical Trial Research Network
          • Drug Development Pipeline
          • Project Mercury
  • News
    • Media Library
    • Blog
      • Living with FSHD
        • Health and Medicine
        • PT and Exercise
        • Tips and Tricks
        • Mental Health
      • FSHD Society News
      • FSHD Research
      • Fundraising & Events
      • Media & PR
    • FSHD Society Radio
    • The FSHD Advocate
  • JOIN US
  • Donate
  • JOIN US
  • Donate

A portrait of Pierre, who lives with FSH muscular dystrophy

Home / Living with FSHD / A portrait of Pierre, who lives with FSH muscular dystrophy

Posted on: Mar 08, 2016

Check out this wonderful short documentary about Pierre, a 40-year-old who has shared this intimate view of what it is like to live with facioscapulohumeral muscular dystrophy.

Share

Filed Under: Living with FSHD

Comments

  1. Jim says

    March 31, 2016 at 4:22 pm

    Thanks so much for the documentary — and reality check for me. Now over 70 and long “retired” from (paid) work; I’m at roughly the same level of Ability — still ambulatory but pushing my limits. Yes, “Every day is an adventure, and every hour, every minute is a puzzle to be solved.”
    I can only suggest that for me, cheap ankle-braces have almost eliminated foot-drop falling; and this year a cane has become an easy invaluable part of my attire, and mobility support. The cane also “explains” my issues — and initiates welcome small offers of help. You put on a smile, and do what ya gotta.

    Reply
  2. james says

    April 2, 2016 at 6:04 pm

    Pierre, I am exactly the same as you. Same age and in the same condition. Here are some things that have helped me:

    Buy a pair of adidas ultra boost. They are very light, very comfy and they turn up at the end. This helps to stops catching our feet. My left foot is worse so if I am going for a walk over 1km I wear one of these – http://www.orliman.com/en/product/calf-support-for-the-boxia-drop-foot-ankle-brace/ You will walk better and be more confident as you won’t have to worry about your foot all the time.

    2/ Put your trousers on sitting on your bed. Standing up and doing it is very difficult.

    3/ Put two planks of wood under your sofa legs. We know how much difference 20 cm makes when we try to get up right.

    4/ Avoid going up those slopes. They will over extend your knees. You will not know you are doing it at the time then one day one of your knees will stop working. I did it carrying stuff up a steep slope for 2 weeks. Then one day I couldn’t walk. took about 3 months to get better.

    Hopefully some treatment comes along.

    All the best,

    Jam

    Reply
  3. Ester says

    April 17, 2016 at 9:33 pm

    I am not very knowledgeable about FSHMD and have a question about pain. My brother-in-law has FSHMS and is in a wheel chair and can not use his legs anymore. He complains of pain. Are you in pain at this stage?

    Reply
    • June Kinoshita says

      April 19, 2016 at 7:29 am

      We’re sorry to hear about your brother-in-law. Unfortunately, pain is common in FSHD at any stage. There may be many reasons and causes for the pain, with treatments ranging from physical therapy, exercise, massage, acupuncture and medication. He should consult a pain specialist on a strategy to manage his pain. Please encourage him to contact the FSH Society, if he is not already a member.

      Reply

Leave a Reply Cancel reply

Your email address will not be published. Required fields are marked *

SEARCH

Categories

  • FSHD Research
  • FSHD Society News
    • Extraordinary Measures
    • Journey to a Cure
  • Fundraising & Events
  • General
  • Living with FSHD
    • Health and Medicine
    • Mental Health
    • PT and Exercise
    • Tips and Tricks
  • Media & PR

Sign up for Email Alerts

Stay up to date with the latest FSHD news and updates from FSHD Society.

CONNECT WITH US

Proud Member World FSHD Alliance (1)
Footer-Logo-min

General Mailing Address:

75 North Main Street, Suite 1073
Randolph, MA 02368 U.S.A.

Mail Donations to:

Department 960
PO Box 4106
Woburn, MA 01888-4106

(781) 301-6060

  • DONATE
  • Donate
  • Join Us
  • Inclusivity & Equity
  • Privacy Policy
  • Contact Us
  • Glossary Of Scientific Terms
Digital Marketing by