9 posts tagged “ALS community”

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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Worth a thousand words: A day in the life of Larry

Posted April 14th, 2017 by

As a child, Sarah Howell loved art. She got her first camera at 6 years old and realized, over time, that she had a way of connecting emotionally and expressing herself through photos. Now, she has her own studio. Her passion? Capturing genuine family moments. Sarah often stays overnight in the home of the family so she can spend the entire next day with them, from start to finish.

A day in the life of Larry Tyler

© Sarah E Studios  |  www.sarahestudios.com

© Sarah E Studios  |  www.sarahestudios.com

When Sarah’s friend, Teri, asked her to capture a day in the life of her father, Larry Tyler, she was both shocked and honored. Larry, living with ALS that required 24-hour care, wanted the photos released to raise awareness and funding for ALS.

Sarah was there with her camera, from Larry’s wake-up at 10:30am, until he went to bed that evening. What emerged was a series of 24 deeply moving photos that capture a day in the life of Larry and his family.

© Sarah E Studios  |  www.sarahestudios.com

© Sarah E Studios  |  www.sarahestudios.com

While she was prepared for sad moments with the family, she wasn’t prepared for the level of caregiver exhaustion she witnessed. For Sarah, the realization that ALS is a family disease was the hardest part of her visit.

 

© Sarah E Studios  |  www.sarahestudios.com

© Sarah E Studios  |  www.sarahestudios.com

Despite the hard moments of exhaustion, chaos and frustration, Sarah also witnessed how Larry and his family coped: with laughter and humor.

© Sarah E Studios  |  www.sarahestudios.com

© Sarah E Studios  |  www.sarahestudios.com

Reflections

After this time with Larry and his family, Sarah now wants to photograph a day in the life of one person living with ALS every year. Even though she doesn’t have a personal connection to ALS, she feels that this story could resonate with other caregivers. She shared her collection at a gallery and was moved by the reception.

Sarah hopes the collection will not only raise awareness for ALS, but also to increase awareness of the need for caregiver support and therapy. In the meantime, she hopes that her photos can do some good.

Check out the rest of Sarah’s 24 photo collection with Larry.

Find other ALS caregivers

Do any of Sarah’s photos resonate with you? Share in the comments.

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