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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Thinking about remodeling your home but don’t know where to begin? You’re not alone. Many people living with ALS consider a remodel to accommodate their needs as their condition progresses but don’t know where to start. To get some real-world advice, we talked to Jonathan Woodman, a pALS who recently renovated his garage into what he’s dubbed “Garaj Mahal.” Here’s his advice:
First up: Focusing on a space
- Where’s the center of energy in your house? If your family tends to gather in a certain room (like the kitchen or living room) or on a certain floor, you may want to consider remodeling a space nearby. You’ll spend the majority of your time here so it’s important to make sure you won’t feel isolated.
- Is there enough space for friends or family to visit? Plenty of comfortable and spacious seating is an important part of making sure you have an inviting and comfortable space for visitors.
- Is there natural light? Where’s the sun? While the basement often feels like the most logical place for a remodel, you may want to consider a space with more natural light and accessibility. Windows and easy access to the outdoors can help improve mood and keep you connected to the outside world.
- Is it accessible? If you won’t be on the main or ground floor, you may want to consider your future accessibility needs like an elevator, lift or ramp.
- How quickly can you start clearing the space? Get started as soon as you can. Once Jonathan landed on the space above his garage (his former workshop), it took another 3 months to clean out.
The design & planning process
- Find an experienced team (designer/architect and contractor). It’s important to find a team that has experience designing/building accessible spaces. Jonathan’s professional background as an architect allowed him to design the space with his own goals in mind and then work with contractor to bring his plans to life.
- Tip: Not sure where to start? Jonathan recommends calling your local American Institute of Architects chapter for a list of architects with experience in designing accessible homes. Talk to multiple designers and contractors about your goals (and budget) to find the right one for you.
- Design a flexible space. Think about how your needs may change over time. While you might not need a hoist or lift in your bedroom or shower now, you should plan the space to accommodate for that need in the future. Ask your caregivers for recommendations. How would they set up the shower? The bedroom?
- Utilize smart technology. Talk to an IT person about how you could use the latest in smart home technology (thermostats, security systems, lights, blinds, etc.) to make day-to-day life around your house easier. Here are a few suggestions.
Jonathan’s approach, in a nutshell:
- Think: Write down your goals and what you want to accomplish
- Plan: Hire someone (designer/architect) who can plan on paper
- Act: Get your team together, scheduled and organized so the project is least intrusive on your living environment
Jonathan’s “Garaj Mahal” is still a work in progress, but check out this first look:
Ruth Super from The Institute for Human Centered Design recently designed a home (from scratch) for a person and family living with ALS. She weighed in with her advice:
- “Know your budget, prioritize and try to remove barriers first. If you do need to remodel, find a contractor that you trust, are comfortable with and who can handle flexibility. Make sure you get at least 3 quotes. Be very clear with your designer and/or contractor what your priorities are and of time constraints that you are aware of.”
- She also recommended the Massachusetts State Home Modification Loan Program. This program provides loans (up to $30,0000 for mobile home owners and up to $50,000 for home owners) to people with medical issues and who need to modify their homes so that they can stay in them. The loan will be re-payed on the sale of the house and can be accessible to landlords if there is a renter who has a medical condition that requires modifications. In Ruth’s experience, the $30,000 should cover the cost of a ramp to get into the home and a bathroom modification. Or it could provide a stair chairlift, widening of a couple of doorways and replacing flooring.
Are you considering or have you started remodeling your home? Join the PatientsLikeMe community to share what you’ve learned about the process and what you wish you’d known before you started.
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