932 posts in the category “Openness”

Circulation issues & ALS

Posted July 3rd, 2018 by

Do you have circulation issues like swelling (also called edema) or a burning (or cold) sensation in your legs and feet? How do you cope? From compression stockings to therapeutic massage and limiting salt intake, pALS are managing their circulation issues in some creative ways.

Why do some people with ALS experience poor circulation?

For many people living with ALS walking becomes difficult as their condition progresses. Lack of physical activity can make it difficult for the blood to reach the legs, feet, arms and hands, leading to poor circulation and swelling (some PatientsLikeMe members report swelling in their feet and hands). Swelling is also caused by dehydration, inflammation or consuming too much salt.

Some symptoms include:

  • Swelling or puffiness in legs, arms, hands or feet
  • Stretched and/or shiny skin
  • Skin that stays depressed after being pressed
How pALS manage:

If you’re experiencing any of the symptoms above, talk to your doctor. He or she may prescribe a diuretic (or water pills, to help rid your body of excess salt and water) but diuretics should be used with caution since many pALS are already dehydrated. Here are a few things some pALS are trying:

  • Electric blankets or hand warmers like the ones used for hunting
  • Ted Hose or compression socks (if you’re still walking) to prevent blood clots
  • Leg massage devices like this one or this one to get the blood flowing
  • Kathy Peters, Muscular Dystrophy Associations’s ALS Health Care Services Coordinator, warns that an ordinary reclining armchair can actually lead to more swelling. Instead, she recommends raising your feet (with a tilt-in-space wheelchair and hospital bed) so they’re on the same level or higher than your heart.
  • For more tips, check out this blog post about managing swollen feet.

How do you manage circulation issues? Any questions, thoughts or tips you’d like to share with the community? Join PatientsLikeMe and add your voice to the conversation.

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Home Safety Month: Pointers for “aging in place”

Posted June 29th, 2018 by

June is National Home Safety Month and there’s a buzz around “aging in place,” so we’ve gathered tips and products that can help today’s (stylish) older adults avoid falls and live well at home for years to come.

A top home-safety goal: Fall prevention

Falls are a growing problem when it comes to home safety, as many older adults opt to live independently at home for as long as possible.

“Although many seniors are more active and living longer, more than 1 in 4 report falling,” according to the CDC. “Emergency departments treat over 3 million older Americans for falls each year while direct medical expenses add up to more than $31 billion annually.”

(When you join PatientsLikeMe, you can report and track falls as a symptom on your profile and see what others have said about falls and fall prevention here.)

Because falls can cause severe injury and loss of independence, the CDC encourages you to talk openly with your healthcare provider(s) about them as soon as possible, even if you don’t get injured. They can do a screening on your future fall risk and help address balance or vision problems, medication side effects and other factors.

Home safety pointers

The CDC offers a free brochure called “Check for Safety: A Home Fall Prevention Checklist for Older Adults.” And here are the main tips, in a nutshell:

  • Get rid of things you could trip over.
  • Add grab bars inside and outside of your tub or shower and next to the toilet.
  • Put railings on both sides of stairs.
  • Make sure your home has lots of light by adding more or brighter light bulbs.

An expert voice on “aging in place”

The New York Times recently published an interview with Linda Shrager, the author of a new book called “Age in Place” and an occupational therapist with almost 40 years of experience.

“It’s cheaper to stay in your home, even if you have to make some renovations and get an aide a few days a week to help,” Shrager says. “It’s money well spent and a lot cheaper than assisted living. But it’s important not to wait until there’s a crisis — a parent falls and breaks her hip.”

A few of her suggestions that stand out:

  • When you declutter, don’t keep a “maybe” pile of things that’ll just collect dust
  • Use stools that don’t fold
  • Cook with a toaster or microwave (since stoves or ovens come with more hazards)
  • Install grab bars in the bathroom — one of the most hazardous rooms in the house

Safety can be stylish

Fortunately, products geared toward home safety have become more attractive in recent years. Here are a few trends and products we’ve spotted related to modern home safety:

Home modifications can get pricy, so check out this list of grants and resources from Home Advisor.

Have you had a fall lately? Any questions, thoughts or tips on home safety you’d like to chat about with the community? Join PatientsLikeMe and this forum discussion today!

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