At our May meeting, one member shared a great question: Has anyone had experience with falling backwards due to their lordosis? She didn’t feel any warning signals, and just fell back.

This was something many in the group have experienced, and the members came up with a variety of suggestions:

1. Using a walker helped many to maintain stability while walking. Assure the walker is appropriately set up for you (adjustable arms).

2. Wearing an abdominal binder provided (core) stability to a member.

3. Working with a physical therapist helped a member. The exercises focused on their core, which helped with balance.

4. One member stated that when she feels like she is falling, she simply sits down. She may sit in a chair or on the floor. This prevents her head from hitting anything At times it can be a jolt, but this was felt to be a better solution than breaking an arm or having a concussion.

5. One member has a lightweight helmet that she uses when transferring. She feels it has helped save her from many potential concussions.

6. One member brought up a positive Beevor sign, which is an indicator of FSHD demonstrated with weak lower abdominal muscles.

7. Many shared that they feel unstable when they first stand up from a sitting position. They also noted a walker helped with this instability.

8. Getting up slowly, and taking deep breaths is also important.

 

And keep in mind…

  • Check out the other wonderful Gathering Place group meetings.
  • The FSHD Society Calendar makes it easy to find the great opportunities within the Gathering Place, radio podcast, FSHD University webinars, and more!
  • There are changes being made to our FaceBook (FB) WOW page. We will have the capability to note in a document the providers that we like or don’t like (and why), and products/aides that we find helpful. Our goal is that it will be a one stop for our members to look for providers and aides that may be helpful to all. Thank you to Tara for her great work! If you don’t have access to the FB WOW page, fill out the registration.  You need to be both a woman and have FSHD to be registered. It is a private group to encourage conversations in a confidential manner.

 

From the Women on Wellness group

Courtesy of FSHD Society

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