by Ranae Beeker, RN
The Women on Wellness (WOW) group, a group of women who personally share the challenges of FSHD meets on the first Wednesday of the month (2P PT, 3P MT, 4 CT 5 ET via Zoom). We are a fairly new group and it is exciting to see the great, growing engagement of our women with FSHD! We focus on sensitive, confidential topics/concerns specific to women. The topics discussed are decided upon by the women in the group.
Our February 2022 meeting included discussions on personal care needs and challenges associated with Activities of Daily Living (ADLs). We talked about different ways to hire a caregiver, what a caregiver might provide for us and the participation of our family members or loved ones, in helping us with our ADL needs. There was a common theme In the discussion of gratitude, acceptance and the need to be flexible of those who help us, in the many (sometimes ever-growing) ways that we need help/assistance. We talked about different assistive care devices for ADLs and personal care needs, the strategies needed, the challenges presented and the successes we relish.
Products mentioned that have been helpful are:
Toilet lifts
- LiftSeat
- Stand Aid of Iowa
- Dignity Lifts (found online; haven’t tried)
Bidets
Shower Nozzles and Moveable Shower Heads set up
- Delta faucet (U6300-WH) Grab bar hand shower mount (allows the shower head to slide up and down and back and forth). A Moen dn8001ch home care shower head was used, it has 3 speeds including a slow speed and has a 7” soft hose, which is very light.
DIY solutions for the bathroom
Our March 2022 meeting will be a continuation of the robust topic of ADL and personal care needs.
If you know of someone who would like to participate, there are just two criteria to be able to participate:
- You must be a woman AND
- You must have FSHD -(it doesn’t have to be officially confirmed by genetics)
Register for Women on Wellness by clicking here. You’ll receive an email with a link to join the Zoom meeting.
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