3 posts tagged “patient advice”

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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What Would You Tell Yourself 10 Years Ago?

Posted January 3rd, 2013 by

The beginning of a new year is always a time for reflection.  You look back, you look ahead and you try to find the big picture.   For patients living with chronic health conditions, a new year can be an opportunity to implement and share lessons learned along the way – about how to cope, manage symptoms, find support, maintain perspective and much more.

It's a new year.  What will you do differently?

Here are a few pieces of advice from members of our Mental Health and Behavior Community in response to the thought-provoking question, “What do you wish you could tell yourself 10 years ago?”

  • Guilt drains your energy and doesn’t accomplish anything. Let it go.
  • Take your meds as prescribed for your sake – and your family’s.
  • Don’t like your provider? Trust your instincts and find a good one.
  • Just taking a shower or going on a walk can make you feel better.
  • Pick up the phone. Only you can break the cycle of self-isolating.
  • Things can get better with the right treatments and care team.
  • Get help if you’re self-medicating with alcohol, drugs or self-harm.
  • Remember, you’re not crazy or lazy – you have a chronic disease.
  • If you’re unable to keep working, apply for disability right away.
  • Be kind and patient with yourself because life is hard enough as is.

Is there something you wish you’d known earlier? Chime in on the discussion or share your thoughts in the comments section. Here’s to getting a little wiser in 2013!