The “Women on Wellness” Zoom group is for women with FSHD to discuss female-focused health and other topics. These notes are from the November 3, 2021, meeting, which began with discussion about finding clothing that is easier to manage. The group meets on the first Wednesday of every month at 5:00 pm ET. To join future meetings, please register.
- Shirts with Magnetic buttons –
- Elastic waist band pants, extra large.
- Tights under leg braces with tunics worn over them
Fastening bras from the front
- lean back to be able to use arms for hair and others
- pull out my dresser drawer to prop my arm to put shirt on.
- When considering a wheelchair, models that can raise legs for leaning is helpful. Be sure your PT and OT knows how to order to conform to demands of insurance/Medicare
- Use grab bars to lean on
- If you can stand/turn/sit, you can use sleeve garters to keep pants legs from slipping to the floor when toileting
- Pick up items with a back scratcher
- Have closet area in bathroom with hooks for necklaces
- Button helper, a long closed loop that you put through button hole to grab button (see image at right)
- Oversize crochet hook to pull up boot zipper
- Satin pjs and satin sheets to be able to turn in bed
- Light, “slippery” fabric down or downlike oversize jackets are easy on and off and warm
- Can wear lighter jackets on cold days by using ‘hot shots’ in packets that you shake up and they heat up. Skiers use them to warm their hands
- Leave them tied to put on. Have a standing shoe horn
- Clips to the back of the shoe so it stands and can be slipped on
- Use stretchy shoe laces that after you put the show on, stay in place
- Pre-dry with a washcloth and use a travel hairdryer to dry after
- Comfortable height – very helpful
- Motorized lift toilet seats are great
- Stand Aid of Iowa lifts straight up
- Liftseat can lift straight up or can arc at the end
- Bought a platform to raise toilet, has bidet on top
- Bidet very helpful as add on to toilet. Especially with water warmer and blow drying
- For occasional incontinence – use extra long pads.