July 17, 2015
Stay Connected
Legislation Ensuring Access to Clinical Trials for People with Neuromuscular Diseases Passes U.S. Senate
On July 16, 2015, the U.S. Senate passed the Ensuring Access to Clinical Trials Act (S.139), which removes barriers for those with neuromuscular...
Brand new, hardly used Dynavox system. We obtained it for my father's ALS treatments, but unfortunately he was only able to use it for about two weeks before he went into Hospice care.
Includes monitor, charger, carrying case, and wheeling floor mount. All this equipment was about $10,000, but...
My husband has been diagnosed with bulbar palsy. Wondering if there are any new treatments known or if anyone has had stem cell treatment for this disease. He has trouble swallowing and it takes him a long time to eat meals. Is anyone aware if heavy mercury levels can cause this disease?
Dear Max,
Thanks to your advocacy throughout the year, this week the House of Representatives has advanced legislation to help find a treatment for ALS and to improve the lives of people living with the disease. An update on the latest activity is below. The action taken by Members of...
Hi all,
I have been looking at the alternative treatment with organic coconut oil and magnesium cloride. i cant find the pure magnesium cloride in its pure form. Does anyone know where one caan find a pure form?
i am already taking the oil internally and massaging it but need the mag.
I'm not...
a friend of mine did send me this article
Evidence for Fungal Infection in Cerebrospinal Fluid and Brain Tissue from Patients with Amyotrophic Lateral Sclerosis
Abstract of that article
Among neurogenerative diseases, amyotrophic lateral sclerosis (ALS) is a fatal illness characterized by a...
I've read many posts of PALS looking back after their diagnosis and realizing there were subtle changes to their bodies months if not years before they were given the diagnosis of ALS. I'm no exception. I noticed as far back as 2006 something was going on. I was a golfer and I noticed when...
Hi everyone,
Yesterday, I completed radiation treatments for prostate cancer. 37 in all. I was advised by my neurologist and urologist not to go through with it, but they left the decision up to me.
My justification was that if I didn't do it and research miraculously came up with something...
Shortly after hubby's diagnosis I asked for a split king adjustable bed in the hopes of keeping him out of a hospital bed as long as possible. Turning has become a big problem for him, and he's gotten stuck in the space between the mattresses twice (don't ask me how--the mattresses are very...
I can't help but feeling guilty - massively so.
We were so late in finding the diagnosis - even after 3 neurologist. It progressed so fast and I was blinded to anything serious.
As it progressed quickly I was foiled at every turn: Took time to get certain meds, time to get a peg tube, time to...
als
assisted living
clinical
clinical trial
diagnosis
guilt
headache
increase
insurance
medical
medicine
meds
neurologist
peg
rant
test
therapy
treatments
trial
venting
volunteers