RESOURCES
5 Hawkings = reported, published evidence of strong effectiveness with treating ailments or slowing down the spread of symptoms.
4 Hawkings = reported, published evidence of moderate effectiveness with treating ailments or slowing down the spread of symptoms.
3 Hawkings = non-published evidence with treating ailments or slowing down the spread of symptoms.
3* Hawkings = conflicted reports of effectiveness evidence with treating ailments or slowing down the spread of symptoms.
2 Hawkings = reported, published evidence of non-effectiveness with treating ailments or slowing down the spread of symptoms.
1 Hawkings = no proven effectiveness/damaging to ALS
Tools
As ALS progresses, ALS survivors may lose the ability to talk. Message Banking is a preventative step to record your voice so that in the event of losing it, you may make use of the recorded voice for your communication. ModelTalker is still in its infant stages and there are bugs to work out. However, they are very quick to respond to any questions or concerns, and provide a way to record via their website or a program you can download. You do need to buy a special headset for this—and be willing to pay $100 for the use of the voice bank onces it is ready.
Predictable App: need to pay $150.00 for Predictable app for Model Talker to work.
The Tobii Dynavox I-Series speech generators use sophisticated eye-tracking technology and boast several desirable features.
For Drop Foot Problems
ALS survivors need to make an appointment with a podiatrist or puchase medial AFO to assist with walkling.
Herbal Supplements
This cream provides two hours of fast relief for muscle cramps, helps with blood circulation, and is non-psychoactive.
Selenium (muscles)
Vitamin C (muscles)
Vitamin E (muscles)
Omega 3 (muscles and cognition)
Alpha Lipoic Acid (muscles)
Lion's Mane
The Riluzole (Rilutek)
Avoid using Riluzole! In addition to its impact on your liver and the highly unlikely benefits you will ever receive from it, recent studies suggest that fasting for 14+ hours at a time allows ketosis to assist the body is combating ALS. However, the instructions for Riluzole require that ALS survivors take the medicine every 12 hours without fail. This will block the full benefits of ketosis. More information here: Charlie Foundation
ALS physicians have noted that Riluzole, if taken every 12 hours, may have some slowing effect on some people's ALS symptoms. The maximum benefit has been reported at an additional 1–3 months of life, but only if taken consistently throughout.
DANGER: this drug has been shown to elevate some ALS survivor's liver enyzmes. This is usually perceptible after the first 30 days. Some studies suggest that if a person has such adverse reactions, they can stop the treatment and resume later and not suffer from the problems.
However, most ALS physicians consider Riluzole an overhyped and non-productive medicine for ALS survivors.
Foundations
Lou Gehrig was one of the many unfortunate U.S. Citizens to fall victim to the ALS disease. His fraternity pledged to help other people who suffer from this disease across the United States. As noted on this website, the volunteers do not do "errands" for the family or take care of the ALS survivor.
This foundation is more than just helping out around the house and yard—and it is free (fully volunteer).
Books & Articles
Neural Regeneration Research has published a review detailing the latest findings in the use ofcannabisderived compounds to treat amyotrophic lateral sclerosis (ALS).
Networks & Websites
ALS Association
The ALS Association is an American nonprofit organization that raises money for research and patient services, promotes awareness about and advocates in state and federal government on issues related to amyotrophic lateral sclerosis (ALS), also known as Lou Gehrig's disease.
The ALS Association is broken up into distinct chapters, each servicing a particular geographic area of the United States all working under the umbrella of a national charter and administrator.
Rare Diseases Clinic Research Network (RDCRN)
We are the Rare Diseases Clinical Research Network (RDCRN), an initiative of the Office of Rare Diseases Research (ORDR) National Center for Advancing Translational Sciences (NCATS). We are funded by ORDR, NCATS, and collaborating institutes and centers.
Our mission is to advance medical research on rare diseases by providing support for clinical studies and facilitating collaboration, study enrollment, and data sharing. Through the RDCRN rare diseases research groups consortia, researchers and their teams work together with patient organizations (patient advocacy groups) to study more than 190 rare diseases at clinical centers across the nation and worldwide.
ClinicalTrials.gov
The ClinicalTrials.gov results database was launched in September 2008 to implement Section 801 of the Food and Drug Administration Amendments Act of 2007 (FDAAA) Primary Completion Date on ClinicalTrials.gov.
The submission of adverse event information was optional when the results database was first released but was required beginning in September 2009. Results information for registered and completed studies is submitted by the study sponsor or principal investigator in a standard, tabular format without discussions or conclusions.
The information is considered summary information and does not include individual patient data.
