216 posts in the category “ALS”

Illustrating member perspectives on life with chronic illness

Posted November 17th, 2017 by

In medical terms, most health conditions have clear definitions. But only people living with chronic illness know what it really feels like to live with it — and making others understand can be a challenge.

When we asked some PatientsLikeMe members to explain what life was like with their condition, their responses painted vivid pictures of what they’re going through. So, we asked PatientsLikeMe User Experience Designer Kristina Ng to turn those descriptions into illustrations. Depicting life with lupus, multiple sclerosis, mental health and more, Kristina’s illustrations sparked a discussion in the PatientsLikeMe community.

Battling cluelessness and confusion

Member Tommy Dubuque was diagnosed with Parkinson’s disease in October 2002, though he’d been experiencing symptoms long before that. “I first noticed symptoms in the mid 1990’s. My youngest daughter told my wife that sometimes my hand would shake. It was getting harder for me to get out of chairs and get up from the ground if I was doing yard work. I just attributed it to old age and not taking care of myself as a young man.”

Tommy was forced to retire in 2006, but that didn’t stop him from staying physically active. “I began physically working hard around our property.” He remodeled a bathroom, built a stone patio, removed an above-ground swimming pool and more. “I was just trying to figure out how not to take my anger out on others. That’s when I realized that PD may win the war, but I can fight the battles and do that to the best of my ability every day.”

How does Tommy describe life with Parkinson’s disease? Take a look…

Tommy has been a PatientsLikeMe member since 2007, and has been connecting with others like him for ten years. “I found a community of wonderful caring people. We were like a small rural community even though we were spread out across the world… This is an isolating disease that makes some people embarrassed about how their body moves, and reclusive, so I make sure to welcome new members.”

Knocking down barriers

Larry Tilson is a PatientsLikeMe member living with ALS. He shared his story with us by typing with his eyes using Eye Gaze technology. “My first sensation of not being able to move came in the winter of 2007, when I started having trouble buttoning a shirt and tying my shoes. It felt like something was restricting my movement.”

Gradually, Larry says the feeling progressed from his hands to his lower arms, then to his back and core muscles. “It feels like I am pushing through an ever-thickening invisible substance.”

Larry is in a different place now than the initial disbelief he felt when he was diagnosed. When he began to research he discovered other people living with ALS were living productive lives. “That’s when I decided to accept the fact that I have ALS and fight to stay productive. I don’t lie down. I try each day to find a way to enrich someone else’s life in some way.”

Take a look at how Larry describes life with his condition…

What’s Larry’s focus these days? “I try to knock down a barrier, help to change a rule, right a wrong, or contribute to science in some way like sharing my information on PatientsLikeMe. That is what makes me smile. To touch someone else’s life in a positive way, whether they know it or not.”

Interested in seeing the rest of this illustration series? Join the PatientsLikeMe community and view the rest of the images in the forum.

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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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