4 posts tagged “patient tips”

In the market to live better: ALS members weigh in

Posted November 6th, 2017 by

Over the years, the PatientsLikeMe ALS community has shared what products help them manage their new normal with ALS. From eye-gaze devices to elevated toilet seats and alternating pressure mattresses, we compiled a list of some of the products that you, the experts, are talking about in the forum. Check it out:

When it gets difficult to turn over, members mentioned:

  • Drive Medical alternating pressure mattress
  • Check out Amazon for a variety of inexpensive alternating pressure mattress pads and pumps

To manage muscle weakness, Kate shared a list of helpful products:

  • For writing: PenAgain – alternative style pen, eliminates the need for a firm thumb-forefinger grip to write. Available online and in office supply stores.
  • Magnetic closure shirts. The shirts have buttons sewn on the front, but the closure is secured with small magnets behind the buttons, including the cuffs.
  • Devices that “cinch” your shoelaces (regular or elastic) closed so you don’t have to tie your shoes each time. An example is “lock laces.”
  • The “Toilevator” is a very small pedestal that goes under the entire toilet and lifts the entire thing up about 3 ½ inches, works with a bidet seat.

For Eyegaze:

And, other communication devices:

When transferring to and from the toilet gets tough, members mention:

For personal hygiene:

What products help you? In the market for something specific? Head to the forum – the community might have a recommendation.

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Coping with Changes in Physical Appearance

Posted January 24th, 2013 by

When you are diagnosed with a life-changing illness, your doctor may prepare you for how the disease will affect your physical functions.  But as our members point out, patients also need to be prepared for the changes in physical appearance they may experience.  For example, how do you deal with hair loss, facial swelling, weight gain, blotchy skin or other unexpected changes?  Or get comfortable with the use of new equipment such as leg braces, walkers or wheelchairs that may attract attention?  Most importantly, what can you do to still feel beautiful?

A cute hat can help to cover thinning hair or bald spots.  Image courtesy of Stock Free Images.

Here are some suggestions from members of our PatientsLikeMe Forum, where patients with different conditions come together to discuss universal issues:

  • Using attractive scarves or hats to cover thinning hair or bald spots
  • Experimenting with different cosmetics to see what works best
  • Treating yourself to a spa manicure and pedicure as a pick-me-up
  • Trying out different explanations for your new brace/walker/wheelchair when asked to see what feels right and what produces the most acceptable responses
  • Soaking in a scented Epsom salt bath to ease pain and relax
  • Consulting with a hair stylist about better styles for thinning hair
  • Using gentle, non-drying facial cleansers and lotions
  • Switching to an electric razor to improve ease and safety
  • Donating your hair to Locks of Love to put a feel-good spin on it

Have you discovered other tricks to help you deal with a changing appearance?  Join this ongoing discussion in our forum or share your experiences in the comments section.