221 posts in the category “ALS”

Health news: What’s making headlines this month

Posted May 8th, 2018 by

Let’s stay on top of the latest health news — in case you missed it, check out this round up of some of the stories making headlines in May.

ALS
  • May is ALS awareness month: Later this month, advocates from across the U.S. will head to Capitol Hill to meet with their legislators. Check out how you can get involved and join the fight against ALS.
  • Congress passes $3 billion increase in NIH funding: $140 million of the increase will go to the BRAIN Initiative research projects that contribute to the knowledge and understanding of ALS. More info.
Lupus
  • May is Lupus Awareness Month: Nearly two-thirds of people know little or nothing about lupus beyond the name, according to the Lupus Foundation of America, which is promoting the “Go Purple” campaign. Get ideas for boosting awareness.

  • A link between the “mono” virus and lupus? A new study published in Nature Genetics shows that the Epstein-Barr virus (EBV) — known for causing mononucleosis — may increase the risk of lupus and six other autoimmune diseases by changing how some genes are expressed. Check it out.
Parkinson’s Disease
  • “Suspect” Parkinson’s drug faces scrutiny: Following reports of hundreds of deaths and adverse events, the FDA is re-examining the safety of Nuplazid (pimavanserin), which was approved in 2016 for treating hallucinations and delusions associated with PD. Read more.
Lung cancer
  • Emerging treatments for small-cell lung cancer (SCLC): Immunotherapy and other emerging drugs called PARP inhibitors and Rova-T(Rovalpituzumab tesirine) are among a group of new therapies showing “early promise” in clinical trials for the treatment of patients with SCLC. Hear from one patient.
MS
  • Life after a stem cell transplant: The BBC’s Caroline Wyatt had a stem cell transplant in Mexico to reboot her immune system. A year later, she shares how she’s doing. Read Caroline’s story.
  • New drug for secondary progressive MS: Phase 3 clinical trial results show that a new drug could slow down the progression of symptoms for people living with secondary progressive MS. Get the scoop.
Mental health
  • Ever heard of forest bathing? Research from the Nippon Medical School in Tokyo found that just standing in the woods could reduce depression scores and improve immune function. They also found some surprising benefits of dirt… Get the full story.
  • Looking closer at medical marijuana strains and doses: A new study draws from user-reported data on marijuana smoking habits to understand the effect of weed on depression and anxiety. From different strains to number of “puffs,” see what was uncovered.
  • Combining treatments for better results: Researchers at the University of Texas found they could boost the positive effects of cognitive processing therapy (CPT) by adding transcranial magnetic stimulation. More info.

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Remodeling for ALS? Tips from a pALS who’s been there

Posted April 11th, 2018 by

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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