Tag Archives: als treatment

An ALS Patient’s Journey With Supplements

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In September of 2012, Royce was given a spreadsheet filled with vitamins and supplements recommended for those suffering with ALS.

They were all part of a well known protocol that highlights the benefits of AAKG.

For Royce, the list made sense given he was already taking some of them. So, he decided to give it a try and follow the protocol and see if it made any difference.

While not 100% effective, he says that he’s absolutely certain it made a difference. He started off with a plan to follow it for six straight months. 

At first it was a little hard to follow.

Royce felt the hardest part was getting the needed exercise that the protocol suggested. 

One thing he recommended was taking AAKG with apple juice to improve the taste and to organise the doses with early morning, morning, lunch, afternoon, night and late night.

That’s how our Neuro-Health Protocol is organized on this page.

Royce noticed a difference in energy and symptoms of the disease and recommended that if you can’t afford all the products in the protocol, to start with the AAKG.

He suggests always having an extra bottle on hand.

He also recommends resistance exercises to stay fit and to maintain your muscle mass.

“I feel like I have progressed more slowly since I began following the protocol.” says Royce.

To make life simpler for people just like Royce, we’ve bundled all the most important supplements into one package.

See The Bundles Here

Energy Expenditure in Nerve Cells continues to be a Trigger for ALS

ALS, Blog, Supplements, ,

blue neurons als treatment

Finding a cure for ALS continues to be a difficult and elusive endeavor. This is understandable since the body is a complex system. Moreover, the degree of difficulty of finding a cure goes up exponentially, when one talks about the body’s nervous system. Nevertheless, advances and findings are coming to light rather quickly and we may be one piece of the puzzle away from a major breakthrough.

One cannot help but notice that within these new findings, certain similar themes that trigger ALS keep coming up. One such theme is the damage caused by the increase in energy expenditure by the nerve cells. A recent study called “Consideration of gravity as a possible etiological factor in Amyotrophic Lateral Sclerosis” that appeared in the journal Medical Hypotheses, suggests that nerve fibers that are disposed vertically (essentially oriented vertically) can accumulate too much cell waste. This cell waste accumulation can lead to damage to the nerve cell and even to cell death. The findings suggest that the uneven distribution of nerve cell loss in PALS, can have something to do with the fact that vertically oriented nerve cell bodies (axons) consume about 2% more energy than transverse running axons.

This may not seem like much but over a period of months and years this 2% excessive energy consumption, due to gravity, may cause the accumulation of waste in vertically running axons. This can deteriorate and weaken nerve cells and can lead to the onset of ALS. Other factors such as using your right hand more frequently (if you’re right handed), or excessive exercising, or your diet, or even your emotional wellbeing can all affect the progress of ALS.

Ok, so how do I counter the effects of excessive energy expenditure? I can’t stop my nerve cells from using energy! There’re a few strategies that we can recommend:

  1.  Avoid repetitive movements and try to change your body’s orientation throughout the day. There’s a recurring link between the deterioration of the nerve cells we use most and ALS. Making small adjustments throughout the day may help reduce the energy expenditure of the same nerve cells.
  2. Increase your intake of supplements that help your nerve cells produce energy. We recommend that you look at Simplesa AAKG+ or learn more about the Deanna Protocol.
  3. Increase the intake of supplements for ALS that help eliminate cell waste (such as excess Glutamate) and that help reduce oxidative damage. Try Oxaloacetate from Natural Dynamix Endure DX. Also try Liposomal Glutathione one of the most powerful anti-oxidants available.
  4. Engage in Moderate intensity exercise that is non-exhaustive and specifically designed for patients with ALS. Learn more here Exercise Program for ALS,
  5.  Do what you can to reduce stress and stay in reasonably good emotional balance. There are many natural remedies for ALS. Reduce coffee intake, practice Yoga and meditation, and develop a deeper spiritual life. You can also try natural Hemp Oil remedies. Proponents of Hemp Oil suggest that it may help with feelings of nervousness, anxiety, improved sleep and reduced pain.

The discoveries will continue to come. Each new finding will help our scientists complete this elusive puzzle and get us one step closer to a solution. The cure is out there. In the meantime, we can do what we can to reduce the rate of damage to our nerve cells. We can improve our exercise routine, our supplement intake, and our spiritual world. Choose to live your best life. Stay strong!

Source:
Pena, PhD., Ana. “Energy Demands to Counter Gravity in Vertical Neurons May Lie at Origin of ALS”, ALS NEWS TODAY, August 30th, 2019.

These statements have not been evaluated by the FDA. These products are not intended to diagnose, treat, cure or prevent any disease.

The Pros and Cons of the new “Right to Try” Law

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On May 30th 2018, the President signed the recently passed Right to Try (RTT) legislation into law. This new law allows patients to receive unapproved medications without FDA notification for up to one year. It also removes the FDA from prohibiting access to an experimental therapy and removes the FDA from advising on dosing, schedule, method of administration or other important safety measures. In short, you’re able to side step the FDA and go directly to the drug manufacturer. You’re basically on your own without the oversight of the FDA. So, Caveat Emptor (buyer beware) and proceed with caution.

Nevertheless, this opens up the door to new possibilities that were simply not available before.

Here’re some of the Pros and Cons as we see them.

PRO’s:

  • Finally, some options. The RTT provides a level of freedom…and hope, that would otherwise be denied patients of terminal diseases.
  • Some of the therapies may prove beneficial and/or point the investigators and drug companies in a better direction.
  • It’s the right of every individual to choose their own destiny.
  • Side stepping Governmental bureaucracy and perhaps accelerating therapies that show promise.
  • Patients can try other drugs, supplements and therapies and report their results to their physicians and drug companies. Now information can flow in more directions.
  • The ALS Association both welcomed and voiced reservations about RTT. The association is aware of and is tracking this new law and will communicate with the ALS community.
  • Since the drugs are experimental and not FDA approved, this MIGHT lower treatment costs, as pharmaceutical companies cannot make a profit on these drugs until they’re FDA approved.
  • Possible access to other treatments and drugs, available outside the US, that have shown promise in other countries.

CON’s:

  • Some medications may not be safe, although they must have passed Phase 1 of clinical trials before patients of RTT can try the drugs.
  • Patients must look out for “bad actors” stepping in now to take advantage of patients vulnerabilities. Check history and reliability of manufacturer.
  • Pharmaceutical companies have very little incentive to provide access or broadly distribute their meds since they cannot make money until the drugs are FDA approved.
  • The RTT law could weaken current patient protection laws enforced by the FDA.
  • The reality is that many experimental drugs have limited access and availability anyway.
  • The RTT law may work as a pressure release valve and may reduce pressure on the FDA to speed up approval of Phase 1, 2 and 3 drugs in the pipeline.
  • Patient has little to no legal safeguards in case therapy produces more harm than good.

All in all, we think that the net effect of the new RTT law will be a positive one. This law opens up the conversation about the FDA’s unjustifiably slow and expensive process and provides the patient with some control over their destiny. That being said, patients need to be careful not to make a bad situation worse and should continue to consult with their physicians before venturing into unexplored territories.

Sources:

Getting PALS the Help They Need FASTER!

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ALS is an incurable disease at this time. When a patient and family is dealing with ALS, the last thing they should have to do is wait for financial and medical assistance. Currently, Social Security Disability Insurance (SSDI) has a typical 5-month waiting period for patients with ALS (PALS).

On Thursday, Feb. 16, Congressmen Seth Moulton (D-MA) and Peter King (R-NY) re-introduced The ALS Disability Insurance Access Act, bipartisan legislation they spearheaded to ensure that amyotrophic lateral sclerosis (ALS) patients are provided vital support and benefits in a timelier manner. The legislation would waive the Social Security Disability Insurance (SSDI) five-month waiting period for people living with ALS, commonly referred to as Lou Gehrig’s Disease.[1]

Many PALS are often diagnosed after they experience significant health deterioration and symptoms.  After dealing with the shock of this devastating diagnosis, PALS have to then apply for SSDI, which can be a lengthy and timely process. The ALS Association reports that fifty percent of all PALS succumb to their illness within 16 months of diagnosis.  The waiver of this 5-month waiting period to get sorely needed resources in an expedient and timely manner is critical.  “This legislation is especially important for people with ALS, for whom five months can mean the difference between life and death,” said Barbara Newhouse, President and CEO of The ALS Association. “

The waiver implications go beyond just financial support. Medicare coverage is tied to the onset of the approval and start of SSDI.  The waiting period not only stalls much needed financial assistance to PALS and their families but also medical coverage for very costly care and potential medications.

We need your help to get this very important legislation quickly passed. You can send an e-mail to your members of Congress and personalize it with your story. Please urge your members of Congress to co-sponsor H.R. 1171/S. 379!  You can click here to send your support via the ALS Association website.

To track and monitor the status of this very important legislation you can visit the bill status on this website:   https://www.congress.gov/bill/115th-congress/house-bill/1171

Please see an excerpt of the bill here:

Bill History in the Congressional Record

Page numbers for legislative actions on this bill link to the Congressional Record. Learn more about the History of Bills and Resolutions.

From the Congressional Record, Volume 163 (2017)

——————————————————H.R. 1171–A bill to amend title II of the Social Security Act to     eliminate the five month waiting period for disability insurance     benefits for individuals with amyotrophic lateral sclerosis (ALS);     to the Committee on Ways and Means.  By Mr. MOULTON (for himself, Mr. King of New York, Mr. Bilirakis, Mr. Blumenauer, Mr. Cicilline, Ms. Clark of Massachusetts, Mr. Cohen, Mr. Conyers, Mr. DeFazio, Ms. DelBene, Mr. Engel, Mr. Garamendi, Mr. Heck, Mr. Jones, Mr. Keating, Mr. Kilmer, Ms. Michelle Lujan Grisham of New Mexico, Mr. MacArthur, Mr. McGovern, Mr. Peters, Ms. Pingree, Mr. Pocan, Miss Rice of New York, Mr. Richmond, Mr. Ruppersberger, Mr. Ryan of Ohio, Mr. Schiff, Mr. Sessions, Mr. Tonko, Mr. Walz, and Mr. Swalwell of California), H1300 [16FE]

If you need additional information on the bill or getting help read the original article form the ALS Association here:  http://www.alsa.org/news/media/press-releases/als-disability-insurance-access-act-021617.html

Please get involved today to CURE ALS and help PALS and their families improve their quality of lives.

[1] http://beverly.wickedlocal.com/news/20170220/moulton-king-continue-fight-for-als-patients

Exciting News for ALS Stem Cell Treatment

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als-breaking-news-promoThe news is buzzing with a groundbreaking study released with very promising results in the last week for ALS patients. The ALS Clinical Trial results indicate that the new Stem Cell Treatment inhibits ALS Disease progression in 87% of patients.

Those with ALS / Lou Gehrig’s disease have had very little hope or agreement from doctors on pharmaceuticals or methods to slow the progression of the disease.  The recent announcement offers encouraging results that a new stem cell treatment can help some patients.  The process evaluated by the study involves the collection of bone marrow stem cells from the patient. After the stem cells are gathered they are treated in a proprietary process. Once the stem cells are ready, they are then directly administered into the patient’s spinal fluid.

Dr. Dimitrios Karussis and his colleagues at Hadassah Medical Center in Israel reported that the treatment not only helped in stopping ALS progression but the same patients showed “notable improvement in their neurological functions.” The sentiment form the ALS researcher is that they are onto something “big” in treating ALS.

Denise Dador of ABC 7 of Chicago noted on January 12, 2016 12 that:

Researchers followed 26 patients for the past four years and 90 percent of patients experienced improvements in walking, talking and hand movement within a month of treatment and the results lasted for several months.

Karussis’ most compelling story is how well the new therapy helped a 22-year-old ALS patient.

“The disease completely stopped progressing and he had a significant improvement in many of his functions including his ability to speak and his motor functions of the hands,” Karussis said.

Neurologist Cliff Segil of Providence St. John’s Medical Center in Santa Monica said it’s easy to create tissue from stem cells, but motor-neurons are a completely different challenge.

That’s why Israeli doctors partnered with biotech firm BrainStorm Cell Therapeutics, which pioneered the cocktail of growth factors added to stem cells.

The process encourages cells to become neurons.

“If this study pans out and they repeat these results in the U.S., and we get 26 patients in the U.S. with similar results, it would really change ALS forever,” Segil said.

The article states that “similar studies are underway at the Mayo Clinic, Massachusetts General Hospital and Boston University.”[1]

The potential for similar methodology to be implemented on other neuro degenerative or motor diseases is also being considered and evaluated.  For more information about this treatment please see the press release:

Jama Neurology Releases Highly Promising Data from ALS Clinical Trial Conducted By Hadassah Medical Organization Jerusalem and Brainstorm Cell Therapeutics

“In the clinical trial of intrathecal infusion of stem cells there were no major adverse effects, and close to 90% of patients showed slowing in the progression of disease, as measured by their respiratory function or their general motor disability” — Principal Investigator Dr. Dimitrios Karussis, MD, PhD, Sr. Neurologist, HMO Neuro

To read more please see: http://www.prnewswire.com/news-releases/jama-neurology-releases-highly-promising-data-from-als-clinical-trial-conducted-by-hadassah-medical-organization-jerusalem-and-brainstorm-cell-therapeutics-300202651.html

Other metabolic programs exist to help improve the quality of life for ALS patients until a cure is found. Simplesa offers the Deanna Protocol® which is a part of the Winning the Fight Program for ALS. It is an all-natural metabolic  program developed by Dr. Vincent Tedone through his research on Amyotrophic Lateral Sclerosis (ALS, or Lou Gehrig’s Disease). Scientific studies conducted on the Deanna Protocol® by Winning the Fight have shown that it benefits individuals with ALS. To view research studies, CLICK HERE.

Please check back as we post updates on this treatment and other important news for ALS patients, families, and caregivers on our site and social media.

 

[1] http://abc7chicago.com/health/hope-for-als-treatment-after-groundbreaking-study/1156176/