Never Thought I’d be Writing This

Well, I never figured it, but 7 years has passed.

Sept. 22

Our family has been affected greatly by ALS, but less than I would have estimated 4, 5, 6 or especially 7 years ago. Still so much to come, it’s overwhelming every day. Thank you to every friend, neighbor, volunteer and family member that has helped and continues to help our family every day, week & month.

It is amazing how fast time has gone.

My progress from PLM…

http://blog.patientslikeme.com/tag/rilutek/

I’ve never taken Rilutek… but here’s how others have done on it.

New Phase 2b Trial of Tirasemtiv (CK-2017357) in ALS

Article Highlights:

• A new phase 2b clinical trial of tirasemtiv (formerly CK-2017357) in people with amyotrophic lateral sclerosis (ALS) is set to launch in late 2012.

• The new phase trial is designed to evaluate the safety, tolerability and efficacy (how well the therapy works) of tirasemtiv in people with ALS.

• Investigators will measure trial participants’ pulmonary, respiratory and skeletal muscle function.

• Tirasemtiv is thought to increase the sensitivity of muscle fibers to calcium, resulting in a potential increase in muscle force generation.

See more info here

Desperate Patients are Prime Targets for Scams !

A continuation of my last post…
Fraudulent, False Hope 4 ALS, MS, PARKINSONS & MUSCULAR DYSTROPHY Runs Rampant on the Internet   As I said, it’s gone too far and I’m not the first to notice, nor do I think it’s ok to remain quiet. Blogs and sites are popping up everywhere to warn patients and families out there. Being on disability income is hard enough..
Well, now it’s coming word-of-mouth right to us. I normally wouldn’t bring this up, but it’s coming to us! Getting truth out there about so many miraculous supplements… A billion $ + market that I once invested hundreds a month in. Not just the supplements’ science, but exact science of the disease related to the supplement touted by so many irrelevant stories. (trying to link the two to the unwary)
Recently, a new friend mentioned ALS to a new random acquaintance at a local Curves gym and wham! There it is… you need to try this! “Here, let me give you some info about this supplement and about this “New Opportunity”. On four independent occasions now, reps and unknown new contacts have approached or sought us out and claim their botanical supplement will help (or could even affect) the progression of ALS, help with Diabetes, even with anti-aging.
It may help with oxidative stress reduction (as they claim) and I can guarantee that there are plenty of studies on their website that prove it. I don’t dispute this! That’s not the issue! The issues arise by using valid study findings, then saying our product helps with that, loosely associating the two, then “insinuating” through legal personal testimonials (not corp.) that it has cured almost everything.
In completely unassociated diseases, what must be the logical outcome and result from taking it is not science (it’s placebo)... Testimonials written by people with financial $take in selling anything are virtually worthless and almost always biased. (fine print… “we make no claims….. yada, yada…)
I’m focusing on ALS here, but we personally know people with fibromyalgia, MD, autism and diabetes who have all been encouraged to try so many various miracles by Amway, MMS, Herbalife, Life Vantage and Mannatech, and more.
I wanted to express my thoughts on these apparently amazing blends that must baffle the entire scientific community with their miraculous healing potentials. One example being associated with ALS is Protandim by Life Vantage.

read the comments! A fight between skeptics and reps…

Along with their reps, LV doesn’t “officially claim” that their product “does” actually anything at all other than oxidative stress reduction (which 100’s of things do). They’re not allowed to under FDA regs for supplements. The rest is left all to innuendo by reps not their corporations.

time codes below refer here…

The point is; even having people “insinuate” that it “could” help is propagating absolute false claims and playing on people’s emotions. It makes me so angry. (personal opinion is not science fact). Even if they use the personal experience (MLM Feel, Felt, Found) “your mileage may vary” approach as a legal cop-out, it’s still wrong. A review by Science-Based Medicine of eight peer-reviewed studies found insufficient evidence to support its usefulness. Dr. Harriet Hall states, "We simply don’t know enough at this point to recommend Protandim for treatment or prevention of any disease, for anti-aging, for making people feel healthier or more energetic, or for anything else." (ALS-TDI) See more of Dr. Harriet Hall HERE minutes 19:30 – 20:10 & @ 23:20
Don’t you think every lab, institute or neurology researcher in the world would test, reverse engineer and sell this in a minute if it really worked? (ALS-TDI, a leading institute, has a reputable forum post Here!)  “Ohhh, but it has 3 patents and a special blend you can’t copy”, you say. Hmmm, and I can’t find cheap illegal Chinese purse knock-offs anywhere on the internet either. “Ohhh, But what if I didn’t take it?”  That’s a sales tactic that’s been called FUD “Fear, uncertainty and doubt” since the 1920’s…
I have done my homework, being in the game, so to speak. I’ve even looked into the cost of a stem cell treatment @ $125,000 with the means to pay it. That, was later found to be fraudulent in a federal investigation after a 60 Minutes special. The two men now in prison for selling stem cell procedures to two ALS patients now deceased.
Anyway, the 5 everyday, OTC botanicals in Protandim may cure anything and may even have magical properties. But as with Eric Edney and his new book, detox and diet regimens, there is always a an extremely slow progression (of any disease) for 15-20 years which may be genetic. But if something is being done or taken, then Shazam… it has to be it! @ 15:55, (disclaimer> your results may vary… now you can’t sue me)
If it’s something people believe in, then credibility goes WAY up when there’s not a financial conflict of interest. I believed that 3000mg of CoQ-10 daily could slow ALS, but trials have disproved this and even at levels of 5000mg+. I still take 300mg daily, but I don’t own stock in a coq10 factory and I don’t persuade people to buy it. Again, watch this minutes 10:02, 24:40
Deceptive to say the least.  The fact that these various supplements are now being touted by companies like Amway, MMS, Herbalife, Life Vantage and Mannatech, and many more “homeopathy” & “flower remedy” companies @38:18, for huge mark-ups to support their network marketing infrastructure makes this so much worse.  Making money on people through false hope screams unethical and just plain wrong. Reps are duplicated to “insinuate” the same “non-committal” claims to their down line through calls and rallies...

Direct sales companies are great, ones that “lead” the customer to believe their products can slow progression of major diseases without specific disease related science is not ok. The business model is fine, it works for a variety of products, but profit can ruin the original intent.
Discovery: People will modify original core values for ones that better suit sales and advancement.
Watch this: Link to 60 Minutes stem cell fraud story: HERE
Link to email fraud & sales pitch example: here and here
Link to other claims: ClinicalTrials.gov
 

FTC rules could hurt MLM supplement companies

Fraudulent, False Hope 4 ALS, MS, PARKINSONS & MUSCULAR DYSTROPHY Runs Rampant on the Internet

Wow, everyone is out to make a buck these days, regardless of the consequences. It can be anything from Lyme disease treatments, sure-fire systems & regimens, Stem cell transplant scams or the latest miracle elixirs from the MLM (aka network marketing) company of the month. How about the “Financial Placebo Effect”. It’s gone too far and I’m not the first to notice. Blogs and sites are popping up everywhere to warn patients and families out there. Scams are abundant! Just search “supplement scams” or “stem cell cures for ALS”

Having a public profile and being a vocal online ALS advocate means that I am a target for some incredibly sincere “sounding” emails and guinea pig requests and even the occasional psycho that bothers to track down a phone number. It takes some balls to phone in your scam to an ALS patient. Here’s just the tip of the iceberg…

========= Fraudulent False Hope Email Example =========

Dear [your name here],

I hope you are doing well in the midst of your ALS ordeal.  Please feel free to email or call me after you read this account of my experience and that of Eric Edney and others.  If my memory is correct, Eric was in a wheel chair and had lost the use of most of his left arm when he begin his program of recovery.  I was fortunate to begin my program mush earlier.
MY ALS RECOVERY AND THAT OF ERIC EDNEY
www.ericiswinning.com/
I have had all the symptoms of ALS except the muscle wasting  I would like to share what I learned and the peer reviewed science I have found with you and all other PALS.  
According to my neurologist, I had all the symptoms of ALS IN 2OO3 except muscle wasting.Since then I have successfully lessened my problems.
By detoxing mercury in many ways including taking OSR which the FDA took off the market because "it was too effective" ??, high doses of selenium as "sodium selenite" and in yeast bound form (absolutely not, I repeat not "selenomethionine"), taking sweat baths, and supplementing with manganese, various forms of sulfur and antioxidants, most of my symptoms are greatly diminished. Manganese helped me control cramps and fasiculations.  I am actually healthier and my muscle cramps and fasiculations have almost completely disappeared.  If I stop talking manganese I have choking problems and leg cramps.
I also begin to supplement with large dose of glutamine powder about 2005, which I believe helps prevent muscle wasting BUT YOU HAVE TO DETOXIFY FIRST BEFORE TAKING GLUTAMINE.  IT CAN CAUSE PROBLEMS SUCH AS MUSCLE WASTING IF YOU HAVE NOT DETOXED SUFFICENTLY.
I also discovered that MAGNESIUM STEARATE was contributing to my very severe leg cramps.  When I eliminated all magnesium  stearates from my supplements my cramps ceased.  
My mercury came from my mercury/silver fillings (I have none) and flu shots (I never have them!) and some sea food (Rarely).
Mercury is probably the major factor in causing most neurological disorders such as ALS, Alzheimer's. MS and Parkinson's Disease. The Agency for Toxic Substances and Disease Registry (ATSDR) tell us:

"The nervous system is very sensitive to all forms of mercury."
http://www.atsdr.cdc.gov/tfacts46.html#bookmark05

Metallic mercury vapors come off mercury/silver fillings for the life of the fillings. This is explained in detail in Petition to Reconsider filed with FDA. See www.iaomt.org/articles/files/files314/petition%20for%20reconsideration%20090309.pdf   at page 24.for the science for the connection between mercury and neurological disorders. For ALS read pages 34-36 for the science to support the connection between mercury and this devastating neurological disorder.  The above website summarizes the ten peer reviewed science/medical papers connecting mercury exposure to ALS.  Lead is probably also a factor as it is highly synergistically toxic with mercury.
Mercury/silver fillings are by far the largest source of mercury, much more so then fish. Unfortunately most MDs are unaware of this or that mercury might be a factor in causing ALS. The International Academy of Oral Medicine and Toxicology (IAOMT.org) is pushing this issue with the FDA by demanding a ban of mercury/silver fillings.
If considering having your fillings removed, be sure your dentist insures minimal exposure to the mercury vapor created by drilling to to remove. Most dentist do not realize the dangers to the patient & dental staff at the time of removal.  Many PALS have not benefited from this procedure because they were not probably protected from the large amounts of mercury vapor and particulate matter generated.    See http://www.iaomt.org/articles/category_view.asp
Here is a trailer to an unfinished documentary trailer on people who have slowed and even stopped the progression of their ALS:

http://www.youtube.com/watch?v=FjMLsa6I5tI&context=C34bbd2cADOEgsToPDskKqsOXOIar17QVmiyd5RBUV

Go to www.ericiswinning.com for more information on ALS,  Eric Edney has a compelling story of overcoming ALS. Eric says:

"If you have any neuro-degenerative illness, you could benefit from our book. Actually, there are over forty neuro-degenerative illnesses for which they do not have a CURE. That includes Multiple Sclerosis - Parkinson's - Alzheimer's - Fibromyalgia, and more. This is only my opinion, but I am convinced that almost all of these neuro illnesses are caused by the same thing; toxins such as pesticides, and heavy metals including mercury, lead, and arsenic." [1 person’s opinion]

I can explain what I did and am doing in much more detail.  I genuinely believe the progress of most ALS can be dramatically slowed or stopped if the symptoms have not progressed too far.  
I can be called at a/c 859   H-266-0364  C-619-7001  O-226-0700 or emailed robertereeves1@gmail.com.  Please at least let me know you received this even if you want no more information.  
Best wishes to you for health, Bob Reeves

__________________

Watch out! Express your views to people who spread false hope for profit. Let them know how you feel. Notify authorities if what they’re doing is illegal !

Falling and ALS; A How “not” to guide…

PALS (people w/ ALS)… FALLING? You’re not the only one. 
Well, it’s official, I’ve mastered the art of falling… after a few (4-5) previous tumbles and a few stitches…  This one took the “cake”.
I’m still recovering 4 days later, but have dizziness and concussion affects as well as headaches. I am always in my chair when out and about. but this happened in transition.  It won’t happen again.
I was unconscious for about a minute while 911 was called to the Target parking lot.  Julie held my head and people in the parking lot came to our aide.  So happy she didn’t faint at the site of my heavily bleeding head.  She tends to do that and was an incredible trooper through this.
She is the most amazing women on the planet. I don’t remember anything until the Emergency Room and I was told that I kept repeating the same questions over and over (which the paramedics told Julie was totally normal).  “what happened?, what happened?”

So, I was put in a neck brace and 2 CAT-scans later they determined that there was no brain swelling or torn arteries in my neck.  I wear a simple foam neck brace now until my muscles feel better.  The 6 stitches come out in 7 days. 
All that excitement of an ambulance ride and paramedics attention and I don’t remember any of it.











Now I’m on the way to recovery!

Clarification:
I still walk and fell backwards while standing there… I wasn’t in the chair! Just waiting while it was being unloaded … She ran to help me and left the chair which ended up falling off the other way. Two independent, yet related incidents. Chair is fine too.