These ALS Resources Get High Marks

October 24, 2017 - als

Dagmar Living Well
“Have we seen this?”
 The opening line of my friend’s email positively held my attention. Turns out my crony sent along a couple to a website, one of a new online ALS resources that have been popping adult lately. Eagerly we checked it out, and being gratified with what we found, soon combined a couple to my computer’s list of Favorite Places.

Over a past few years, I’ve beheld a flourishing trend: More ALS patients are relying on a internet for information and networking, with a together expansion in online resources all anticipating to accommodate that need. In addition, many ALS use providers have stretched their goal to go over providing medical apparatus to embody improving quality of life for patients and their caregivers.

When we was initial diagnosed, a blazing doubt in my mind was, “What can we do right now?” And a pamphlets and brochures given to me during a doctor’s bureau didn’t utterly give me a answer. Neither did a internet or “Dr. Google.” In fact, during that time a nonesuch of positive, motivational, and elemental information about ALS was one of a really reasons we started essay my “ALS and Wellness Blog.

With all that said, I’m vehement to share with we dual new ALS resources that we trust are value your time to explore, learn from, and share with others in a ALS community.

Your ALS Guide

Launched in Aug 2017, a website Your ALS Guide is a good apparatus for newly diagnosed patients as good as those now vital with a disease.

The alighting page is divided into 3 categorical sections: Patients, Caregivers, and Family Friends. Clicking by any territory you’ll find clear, easy to know explanations and suggested stairs for follow-through.

Additional options to try include: Getting Started, Planning, Equipment, and Resources. Throughout a website, tabs couple to some-more useful links and eventually lead directly to a apparatus or use provider.

A list of Common Questions addresses new studious worries. we enjoyed reading a special page of Shared Tips and even picked adult a few ideas to exercise in my possess home.

Your ALS Guide was combined by Kim Hughes, a former ALS Association caring services executive who teamed adult with a hermit and nephew of Myna Stroth, an ALS studious who died in 2015. Together they tapped into Kim’s 12 years of believe and knowledge in a ALS community. The outcome is an online apparatus that is both unsentimental and useful.

ALS Pathways

Another new website that held my eye is ALS Pathways, launched in August 2017 by Mitsubishi Tanabe Pharma America (which also grown a new ALS medical treatment Radicava).

ALS Pathways’ alighting page prompts users to select between Person with ALS or Caregiver or Healthcare Professional. Clicking on a initial choice brought me to a page of appreciative graphics that led me by any page. All explanations are easy to know and embody rebellious tough topics such as defining ALS, how a illness progresses, and how it is measured. Additional tabs open to pages with information on how to live with ALS, along with tips for caregiver support.

I was quite tender with a territory clinging to Assessing Function. Using useful graphics and layman’s language, a mostly misunderstood ALSFRS-R (ALS Functional Rating Scale – Revised) is entirely laid out. For a exam that has been used on ALS patients for scarcely 20 years, this is a best reason for, and validation of, a use that I’ve come opposite in a prolonged time.

I also appreciated a inexhaustible inventory of references located during a bottom of any page.

Sneaking a demeanour onto a Health Professional side of ALS Pathways, we found equally consummate and ominous information. Here a concentration is on a many hurdles of treating ALS, rethinking a causes of ALS along with options of monitoring and interventions accessible for treatment.

Closing thoughts

Finding a heal for ALS positively stays a priority. But we can all determine that for those of us living with ALS, training how to urge a peculiarity of a lives is only as important. Both of these new websites are acquire additions to a ALS online landscape, and we demeanour brazen to finding some-more and pity them with we here.


Note: ALS News Today is particularly a news and information website about a disease. It does not yield medical advice, diagnosis, or treatment. This calm is not dictated to be a surrogate for veteran medical advice, diagnosis, or treatment. Always find a recommendation of your medicine or other competent health provider with any questions we might have per a medical condition. Never negligence veteran medical recommendation or check in seeking it since of something we have review on this website. The opinions voiced in this mainstay are not those of ALS News Today, or a primogenitor company, BioNews Services, and are dictated to hint contention about issues regarding to ALS.

Print Friendly, PDF  EmailPrint This Page

source ⦿

More als ...

› tags: als /