Category Archives: Resources

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

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:

Cannabinoids to Treat ALS?

And OTHER Neurodegenerative Conditions

Let’s be honest, when you hear or read the word Cannabis, Hemp, CBD, Marijuana, what comes to mind? Some people giggle, others cringe, some get offended. Now, there’s an increasing group of ex-sceptics, including reputable researchers, who contemplate and study the POSSIBILITIES.

Understanding how marijuana and the brain’s own natural cannabinoid system works is helping researchers design new medicines.

Cannabinoid expert Daniele Piomelli, PhD, of the University of California in Irvine. Says, “It’s believed that the controlled therapies that come out of this research might provide select benefits to patients while avoiding some of the unwanted effects seen with the drug.”

Research from California Pacific Medical Center in San Francisco points to the promise of marijuana-like treatments for those with the fatal brain disorder ALS, also known as Lou Gehrig’s disease.

We all know new treatments for ALS are desperately needed.

ALS wreaks its havoc by harming nerve cells and patients experience progressive muscle weakness that can hinder movement, speech, even swallowing and breathing. The only FDA approved drug for ALS, Riluzole (marketed as Rilutek), extends life on average by about two months,” says Abood. “Evidence from our study suggests that a marijuana-based therapy could create a much greater effect, perhaps extending life by three years or more.”

In the study, ALS mouse models were given either the marijuana compound THC, the marijuana compound cannabidiol, cannabidiol plus THC, or a placebo daily following the onset of disease signs. The researchers measured disease progression by testing how long the mice could stand on a slowly rotating rod. The more severe their nerve cell degeneration, the less time the mice can balance on the rod. In addition, two conditions of ALS, the loss of movement ability and survival time, were analyzed using a mathematical model.

“We found that treatment with THC delayed disease progression by seven days and extended survival by six days in the mouse model,” says Abood. “This corresponds to three years in human terms.”

Another part of the study determined that the marijuana compounds create their benefits by reducing two molecular processes, known as oxidative stress and glutamate excitotoxicity. These processes have been implicated in ALS and are thought to harm nerve cells.

Other Neurodegenerative conditions

Another animal study also indicates that a marijuana-like compound can protect brain cells from the damage produced by the disorder Parkinson’s disease.

“For the first time, our research shows the neuroprotective value of marijuana-like compounds in a well-established animal model of Parkinson’s disease,” says study author Andrea Giuffrida, PhD, of the University of Texas Health Science Center in San Antonio.

As a next step, the researchers are testing whether the marijuana-like compounds have neuroprotective value when brain cell damage is already present and whether they can prevent the progression of brain cell loss. “Learning more about the mechanisms by which marijuana-like compounds may slow down or prevent neurodegeneration in Parkinson’s disease may translate into new pharmacological treatments that could fight this disorder in its earliest stages,” adds Giuffrida.

If you or a loved one could have a better quality of life through your ALS ordeal, would you say yes to Cannabis?

Sources: Science Daily, ALS News Today, Leafly

20 things to know regarding Pharmaceutical vs. Nutraceutical protocols for ALS!

Radicava® vs Deanna Protocol®

To understand what the differences between Pharmaceutical and Nutraceutical are, we should begin with their definitions:

phar·ma·ceu·ti·cal

Adjective

  1. Relating to medicinal drugs, or their preparation, use, or sale.

Noun

  1. a compound manufactured for use as a medicinal drug.

nu·tra·ceu·ti·cal

Noun

Plural noun: nutraceuticals 

a food containing health-giving additives and having medicinal benefit.

Now, let’s compare the new drug approved by the FDA Radicava® vs The Natural alternative for a better quality of life, the Deanna Protocol®.

  • 10 Things to Know About the New ALS Drug Radicava®
  1. It is a Pharmaceutical drug.
  2. The drug underwent a phase 3 clinical trial in Japan and South Korea where 137 ALS patients were given either Radicava® or a placebo. The group given Radicava® experienced a 33 percent reduction in the decline of their physical abilities compared to the placebo group.
  3. Radicava® works by reducing the oxidative stress in the body. People with ALS have high levels of oxidative stress.
  4. Radicava® is administered via intravenous infusions. Initially, patients have a daily infusion for two weeks and then have two weeks’ rest. After that, they need to have 10 consecutive daily infusions followed by two weeks of rest.
  5. Each infusion takes around an hour to complete.
  6. The dosage of each infusion is 60 mg.
  7. The cost of each Radicava® infusion is about $1,000 and it’s reported that the treatment costs about $146,000 annually.
  8. Radicava® should be available to ALS patients in the U.S. by August.
  9. The most common side effects associated with the drug are headaches, bruising and gait problems.
  10. Radicava® infusion contains sodium bisulfite which is known to cause both mild and severe allergic reactions in some people (particularly those with asthma).
  • 10 Things to Know About the Deanna Protocol®
  1. It is a naturally derived Nutraceutical program.
  2. Developed by Doctor Vincent Tedone, a retired physician (Orthopedic Surgeon), for his daughter Deanna who was diagnosed with ALS at the age of 30 in 2007.
  3. The Deanna Protocol® has undergone double blind clinical trials at the University of South Florida in mice models. The Deanna Protocol® has over 1,500 anecdotal case studies from patients with ALS.
  4. The Deanna Protocol® is a blend of nutritional powders and liquids that contain powerful antioxidants and amino acids essential to assist your body in its natural efforts to fight neurodegenerative damage. People suffering from other neurodegenerative diseases, such as Parkinson’s and Alzheimer’s, have also reported improvements.
  5. It is taken in the morning, in the afternoon and at night as part of your regular, at home, breakfast, lunch and dinner routine. No need to go to the clinic.
  6. The Protocol is the same for everyone but the dosages might vary, depending on the person and what their specific needs are. The most common side effect is an upset stomach usually reported during the initial days as the body adjusts to the protocol.
  7. The cost of the Deanna Protocol® starts at $219.99 for the Core Bundle #1. The next most inclusive package is the Plus Bundle #1 at $249.99. And our most inclusive bundle is the Comprehensive Bundle #1 at $349.99. Above prices are for a 1 month supply and include easy-to-follow, step-by-step instructions and an actual human to answer your questions and provide you with the support you need.
  8. Not sure? At Simplesa’s website there’re 330+ reviews with 4.5 stars from verified and satisfied buyers at simplesanutrition.com or call 1-888-578-5528.
  9. Deanna Protocol® has been in the market for almost 4 years. The popularity of the protocol and the positive reports from the clients, speak for themselves.
  10. The freshness of the products used in the Deanna Protocol is guaranteed, these products are naturally derived and are manufactured in a facility that follows strict Current Good Manufacturing Practice (cGMP) (Enforced by the FDA) and is UL (Underwriters Laboratories) certified.

 This Blog is for educational purposes. We hope that the above information helps you make the right decisions to address your neuro-degenerative concerns. And as always consult your physician.

 If you liked this article, please share with others
that could benefit from this information.
Remember Sharing is Caring!

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

Sources:
alsnewstoday.com
winningthefight.org
simplesanutrition.com/deanna-protocol/

 

B12 the Powerhouse Energy Vitamin – Try Simplesa Liposomal

Simplesa B12Even when you eat well and have a healthy diet you may still not be getting enough vitamin B12. When you are deficient there are symptoms, health risks, but you can easily address the deficiency with a quality B12 supplement.[1]

What is B12?
One form of Vitamin B12 is Methylcobalamin. It is one of the many B vitamins. Your body needs B12 to facilitate the healthy function of nerve tissue, brain function, and red blood cells.

Vitamin B12 is a powerhouse. Your metabolism wouldn’t run smoothly without it. But B12 isn’t like other vitamins. It’s only found in animal products like eggs, meat, shellfish and dairy. Up to 15% of people don’t get enough B12, and they’re more likely to be vegetarians, have celiac disease or other digestion problems, or be an adult over 50. The signs of vitamin B12 deficiency include exhaustion, rapid heartbeat, brain fog, and other symptoms, says Maggie Moon, RD, a Los Angeles–based nutritionist and owner of Everyday Healthy Eating.[2]

Like all B vitamins, vitamin B12 is a water-soluble vitamin. The human body does not store it. Any excess or unwanted amounts are excreted through urine. Structurally, vitamin B12 is the most complicated vitamin. It is also the largest.[3]

Why is Vitamin B12 so Important to our body?
Our bodies need vitamin B12 but do not make it and have to acquire it via proper nutrition and/or supplementation. Vitamin B12 is critical in the production of DNA, nerves, red blood cells, and to carry out other metabolic functions.  An average healthy adult requires approximately 2.4 micrograms a day, which can be an issue if you’re not consuming enough to meet your bodily needs. Some people may have an adequate intake of the appropriate nutrition, but malabsorption prevents them from utilizing it no matter how much they consume.

As a result, vitamin B12 deficiency is relatively common, especially among older people. The National Health and Nutrition Examination Survey estimated that 3.2% of adults over age 50 have a seriously low B12 level, and up to 20% may have a borderline deficiency.[4]

Do I have a B12 deficiency?
Vitamin B12 deficiency can be slow to develop, causing symptoms to appear gradually and intensify over time. It can also come on relatively quickly. Given the array of symptoms it can cause; the condition can be overlooked or confused with something else. Symptoms may include:

·         strange sensations, numbness, or tingling in the hands, legs, or feet

·         difficulty walking (staggering, balance problems)

·         anemia

·         a swollen, inflamed tongue

·         yellowed skin (jaundice)

·         difficulty thinking and reasoning (cognitive difficulties), or memory loss

·         paranoia or hallucinations

·         weakness

·         fatigue

While an experienced physician may be able to detect a vitamin B12 deficiency with a good interview and physical exam, a blood test is needed to confirm the condition. Early detection and treatment is important. “If left untreated, the deficiency can cause severe neurologic problems and blood diseases,” says Dr. Bruce Bistrian, chief of clinical nutrition at Harvard-affiliated Beth Israel Deaconess Medical Center.[5]

How can I avoid B12 Deficiency?
Simplesa® has just introduced its newest powerhouse supplement and high quality Liposomal Vitamin B12! Not all B12 vitamins are the same, Simplesa Liposomal Vitamin B12 boasts Methylcobalamin, the active form of vitamin B12 that supports brain and nerve health. With other forms of B12 your liver has to convert cyanocobalamin, another form of B12, into methylcobalamin.  Simplesa Liposomal Vitamin B12 is formulated for maximum and rapid absorption.

Simplesa Liposomal Vitamin B12 supports brain and nerve health with increased energy levels by providing methylcobalamin, the only form of vitamin B12 found in the brain.  Simplesa Liposomal Vitamin B12   does NOT contain soy ingredients, and the flavors are completely natural and delicious. The liposomes are gluten-free, alcohol-free, vegan, and tested non-GMO.

Simplesa Liposomal Vitamin B12 Benefit vs. Injectable B12
While injectable B12 is a commonly prescribed treatment for vitamin B12 deficiency, it does have some notable drawbacks. Because vitamin B12 injections are intramuscular, they can be difficult to administer to thin patients. Injections are also known to be painful, which may cause some patients to abandon treatment. Moreover, elderly or disabled patients may have difficulties traveling to a physician’s office for injection administration or affording the treatment if they don’t have insurance to cover it. [6] Additionally, the ease and cost savings is substantial via Simplesa Vitamin B12 as it can be easily self-administered at home and has a pleasant taste. One bottle will provide approximately 60 servings at ½ ml (approx. 3 pumps into the mouth) or 1000 mcg per serving.

Some of the many benefits of Simplesa Liposomal Vitamin B12:

·         Contributes to normal red blood cell formation

·         Supports the nervous system and mental functions

·         Contributes to a normal, healthy metabolism

·         Is essential for a healthy heart

Simplesa Liposomal Vitamin B12 uses natural non-hydrogenated sunflower phosphatidylcholine, derived from non-GMO certified oil.  It undergoes a several-step solvent-free purification and filtration process to ensure the utmost purity. The manufacturing facility is cGMP certified, following the same standards of sanitation and documentation as pharmaceutical companies. Each ingredient has been carefully sourced and tested in-house and by a third-party certified lab. The water is classified as Ultrapure Water, exceeding pharmaceutical grade standards.

For more information or to try our new Simplesa Liposomal Vitamin B12 click here.

[1] https://ods.od.nih.gov/factsheets/VitaminB12-HealthProfessional/
[2] http://www.health.com/health/gallery/0,,20924065,00.html
[3] http://www.medicalnewstoday.com/articles/219822.php
[4]  http://www.health.harvard.edu/blog/vitamin-b12-deficiency-can-be-sneaky-harmful-201301105780
[5] http://www.health.harvard.edu/blog/vitamin-b12-deficiency-can-be-sneaky-harmful-201301105780
[6] http://www.livestrong.com/article/289321-sublingual-vitamin-b12-vs-injectable-b12/

INTRODUCING OUR 2018 LOYALTY PROGRAM

We are pleased to launch our new 2018 Simplesa Loyalty Program. This program will enable you to earn rewards on your Simplesa purchases that can be used for discounts on future orders. Importantly, there is no expiration date on the points you earn. Get points for all your orders, and sometimes we’ll offer special opportunities to earn bonus points. You can keep track of your points by logging into your Simplesa account. Thank you for being a valued customer.

 

Simplesa Rewards Overview

SimplesaLoyalty

175 Points = $5 Voucher


330 Points = $10 Voucher


600 Points = $15 Voucher


900 Points = $25 Voucher


1,100 Points = $35 Voucher


1,500 Points = $50 Voucher


2,100 Points = $75 Voucher



2,600 Points = $100 Voucher


3,750 Points = $150 Voucher


4,000 Points = $200 Voucher


 

Start Earning Points

FREQUENTLY ASKED QUESTIONS
How do I enroll?
To enroll, you just have to create an account at SimplesaNutrition.com
Do I have to enroll if I am already a Customer?
We have already enrolled everyone with an active account and even rewarded you with 50 points to start the New Year.
When does the program begin?
The program begins January 1st, 2018

 

 

 

 

 

 

simplesafooteremail

Tips for Caregivers

 caregivingCaregiving – It’s one of the hardest, physically and emotionally draining roles anyone can undertake.  In a 2015 survey from AARP and the National Alliance of Caregiving it was found that a third of all Americans are caregivers, providing care to someone who is disabled, ill or elderly.  The same study found that almost 80% of these caregivers stated they needed help.[1] Caregivers can be family members or friends. Many caregivers have jobs, families, and the additional responsibility of the minute to minute needs of the person to whom they are providing care 24/7.  It is not just driving to doctor visits or making meals. Many caregivers are providing nursing care (maintaining Stomas, catheters, or feeding tubes), often without the training or previous experience to do so. Caregivers learn quickly as the lives and well-being of someone they love relies on them. Perhaps the person being cared for is not a good patient, or does not remember you, or has tremendous guilt in being ill or helpless. These are all potential circumstances that many caregivers have to face every day. It’s one of the experiences in life that unless you have done it – you won’t quite understand the demands or the challenges.

Tips for Caregiver:

The first rule of taking care of others: take care of yourself first. Caregiving can be a rewarding experience, but it is also physically and emotionally demanding. The stress of dealing with caregiving responsibilities leads to a higher risk of health issues among the nation’s 90 million family caregivers. So as a family caregiver, remember to pay attention to your own physical and mental wellness, and get proper rest and nutrition. Only by taking care of yourself can you be strong enough to take care of your loved one. You really do need to “take care to give care!”

  • Caregiving can be a stressful job. Most family caregivers say they feel stressed providing care for a loved one. With all of their caregiving responsibilities – from managing medications to arranging doctor appointments to planning meals – caregivers too often put themselves last.
  • The stress of caregiving impacts your own health. One out of five caregivers admit they have sacrificed their own physical health while caring for a loved one. Due to stress, caregivers have a disproportionate number of health and emotional problems. They are twice as likely to suffer depression and are at increased risk for many other chronic conditions.
  • Proper nutrition helps promote good health. Ensuring that you are getting proper nutrition is key to help maintain your strength, energy and stamina, as well as strengthening your immune system. Maintaining a healthy diet is one of the most powerful things you can do to take care of yourself and keep a positive attitude overall.
  • Ensuring good nutrition for your loved one helps make care easier. As many as half of all older adults are at risk for malnutrition. Good nutrition can help maintain muscle health, support recovery, and reduce risk for re-hospitalization – which may help make your care of a loved one easier.
  • Remember: “Rest. Recharge. Respite.” People think of respite as a luxury, but considering caregivers’ higher risk for health issues from chronic stress, those risks can be a lot costlier than some time away to recharge. The chance to take a breather, the opportunity to re-energize, is vital in order for you to be as good a caregiver tomorrow as you were today.[2]

What is Respite?

According to the Lifespan Respite Care Act (PL 109-442), Lifespan Respite is defined as ‘coordinated systems of community-based respite for family caregivers of children or adults regardless of special need.’  For more information, on Respite please visit: https://archrespite.org/index.php

Tips for Others:

As a caregiver your world at times feels like it’s in chaos and out of your control.  Interacting with other people can often be tiresome and difficult as you simply feel too overwhelmed to participate in social settings. Other people often want to help and support you, but struggle with what they can say and do to help.  We have compiled some great suggestions for what to say or not to say to caregivers.  Please feel free to send suggestions we have not mentioned in this blog. Interesting enough, there is some overlap on the advice on what best to say or not to say to caregivers. Bottom line:  speak from the heart and be supportive of their needs.

12 Things You Should Say to a Family Caregiver By Becky Benishek

Keep in mind many caregivers won’t ask for help, so the best way to help someone is to do things for them that they may not have the time, money, or mental energy to do for themselves. Social settings and activities may at times be too draining, or the fear of being a “bummer” or not in “the best mood” can often cause many caregivers to go into recluse mode.

A Dozen Things You Should Never Say to A Caregiver by Ann Brenoff

There is assistance and resources to help caregivers.  Many times a caregiver is so consumed in the day to day tasks of caregiving they don’t have the bandwidth to research tools or support.  One such resource is geared to caregivers of Veterans.  Per the Veteran Benefits: Caregiver Programs and Services on Military.com website:

On May 5, 2010, the Caregivers and Veterans Omnibus Health Services Act of 2010 was signed into law. Title I of the Act will allow VA to provide unprecedented benefits to eligible Caregivers (a parent, spouse, child, step-family member, extended family member, or an individual who lives with the Veteran, but is not a family member) who support the Veterans who have given so much for this Nation. The law distinguishes between Veterans who incurred or aggravated a serious injury in the line of duty on or after Sept. 11, 2001 (post-9/11 Veterans), and those Veterans whose injuries were incurred prior to Sept. 11, 2001 (pre-9/11 Veterans).

Please visit the VA’s caregiver page for more information, and to apply for these services.

 Caregivers Toolbox:

http://caregiveraction.org/family-caregiver-toolbox

http://www.caregiving.org/resources/

http://www.rosalynncarter.org/caregiver_resources/

https://www.medicare.gov/campaigns/caregiver/caregiver.html

http://www.aarp.org/home-family/caregiving/?cmp=RDRCT-CRGNG_APR12_012

http://www.easterseals.com/explore-resources/for-caregivers/understanding-aging-and-caregiving.html

Footnotes:

[1] http://www.huffingtonpost.com/entry/a-dozen-things-you-should-never-say-to-a-caregiver_us_5621409fe4b08589ef474317

[2] http://caregiveraction.org/national-family-caregivers-month-theme/

Getting PALS the Help They Need FASTER!

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

Simplesa Liposomal B12 the Powerhouse Energy Vitamin

Simplesa B12Even when you eat well and have a healthy diet you may still not be getting enough vitamin B12. When you are deficient there are symptoms, health risks, but you can easily address the deficiency with a quality B12 supplement.[1]

What is B12?
One form of Vitamin B12 is Methylcobalamin. It is one of the many B vitamins. Your body needs B12 to facilitate the healthy function of nerve tissue, brain function, and red blood cells.

Vitamin B12 is a powerhouse. Your metabolism wouldn’t run smoothly without it. But B12 isn’t like other vitamins. It’s only found in animal products like eggs, meat, shellfish and dairy. Up to 15% of people don’t get enough B12, and they’re more likely to be vegetarians, have celiac disease or other digestion problems, or be an adult over 50. The signs of vitamin B12 deficiency include exhaustion, rapid heartbeat, brain fog, and other symptoms, says Maggie Moon, RD, a Los Angeles–based nutritionist and owner of Everyday Healthy Eating.[2]

Like all B vitamins, vitamin B12 is a water-soluble vitamin. The human body does not store it. Any excess or unwanted amounts are excreted through urine. Structurally, vitamin B12 is the most complicated vitamin. It is also the largest.[3]

Why is Vitamin B12 so Important to our body?
Our bodies need vitamin B12 but do not make it and have to acquire it via proper nutrition and/or supplementation. Vitamin B12 is critical in the production of DNA, nerves, red blood cells, and to carry out other metabolic functions.  An average healthy adult requires approximately 2.4 micrograms a day, which can be an issue if you’re not consuming enough to meet your bodily needs. Some people may have an adequate intake of the appropriate nutrition, but malabsorption prevents them from utilizing it no matter how much they consume.

As a result, vitamin B12 deficiency is relatively common, especially among older people. The National Health and Nutrition Examination Survey estimated that 3.2% of adults over age 50 have a seriously low B12 level, and up to 20% may have a borderline deficiency.[4]

Do I have a B12 deficiency?
Vitamin B12 deficiency can be slow to develop, causing symptoms to appear gradually and intensify over time. It can also come on relatively quickly. Given the array of symptoms it can cause; the condition can be overlooked or confused with something else. Symptoms may include:

·         strange sensations, numbness, or tingling in the hands, legs, or feet

·         difficulty walking (staggering, balance problems)

·         anemia

·         a swollen, inflamed tongue

·         yellowed skin (jaundice)

·         difficulty thinking and reasoning (cognitive difficulties), or memory loss

·         paranoia or hallucinations

·         weakness

·         fatigue

While an experienced physician may be able to detect a vitamin B12 deficiency with a good interview and physical exam, a blood test is needed to confirm the condition. Early detection and treatment is important. “If left untreated, the deficiency can cause severe neurologic problems and blood diseases,” says Dr. Bruce Bistrian, chief of clinical nutrition at Harvard-affiliated Beth Israel Deaconess Medical Center.[5]

How can I avoid B12 Deficiency?
Simplesa® has just introduced its newest powerhouse supplement and high quality Liposomal Vitamin B12! Not all B12 vitamins are the same, Simplesa Liposomal Vitamin B12 boasts Methylcobalamin, the active form of vitamin B12 that supports brain and nerve health. With other forms of B12 your liver has to convert cyanocobalamin, another form of B12, into methylcobalamin.  Simplesa Liposomal Vitamin B12 is formulated for maximum and rapid absorption.

Simplesa Liposomal Vitamin B12 supports brain and nerve health with increased energy levels by providing methylcobalamin, the only form of vitamin B12 found in the brain.  Simplesa Liposomal Vitamin B12   does NOT contain soy ingredients, and the flavors are completely natural and delicious. The liposomes are gluten-free, alcohol-free, vegan, and tested non-GMO.

Simplesa Liposomal Vitamin B12 Benefit vs. Injectable B12
While injectable B12 is a commonly prescribed treatment for vitamin B12 deficiency, it does have some notable drawbacks. Because vitamin B12 injections are intramuscular, they can be difficult to administer to thin patients. Injections are also known to be painful, which may cause some patients to abandon treatment. Moreover, elderly or disabled patients may have difficulties traveling to a physician’s office for injection administration or affording the treatment if they don’t have insurance to cover it. [6] Additionally, the ease and cost savings is substantial via Simplesa Vitamin B12 as it can be easily self-administered at home and has a pleasant taste. One bottle will provide approximately 60 servings at ½ ml (approx. 3 pumps into the mouth) or 1000 mcg per serving.

Some of the many benefits of Simplesa Liposomal Vitamin B12:

·         Contributes to normal red blood cell formation

·         Supports the nervous system and mental functions

·         Contributes to a normal, healthy metabolism

·         Is essential for a healthy heart

Simplesa Liposomal Vitamin B12 uses natural non-hydrogenated sunflower phosphatidylcholine, derived from non-GMO certified oil.  It undergoes a several-step solvent-free purification and filtration process to ensure the utmost purity. The manufacturing facility is cGMP certified, following the same standards of sanitation and documentation as pharmaceutical companies. Each ingredient has been carefully sourced and tested in-house and by a third-party certified lab. The water is classified as Ultrapure Water, exceeding pharmaceutical grade standards.

For more information or to try our new Simplesa Liposomal Vitamin B12 click here.

[1] https://ods.od.nih.gov/factsheets/VitaminB12-HealthProfessional/
[2] http://www.health.com/health/gallery/0,,20924065,00.html
[3] http://www.medicalnewstoday.com/articles/219822.php
[4]  http://www.health.harvard.edu/blog/vitamin-b12-deficiency-can-be-sneaky-harmful-201301105780
[5] http://www.health.harvard.edu/blog/vitamin-b12-deficiency-can-be-sneaky-harmful-201301105780
[6] http://www.livestrong.com/article/289321-sublingual-vitamin-b12-vs-injectable-b12/

Holidays and Your Health

The holidays are frantic and stressful for everyone. If you are disabled or chronically ill, the holidays can present additional stress and potential health risks for you. For the caretaker of a chronically ill person the holiday can add another level of complexity and stress to your already busy life. No one wants to be a Grinch during this time of the year, but it is important to take some extra precautions and preparation to cope.

 

disabledchristmas

Per a recent article in the Huffington Post called “5 Ways the Holidays Are Hard on Those with a Chronic Disease (and 10 Ways to Cope)” the author provides advice on how to deal with the barrage of food, activity and traveling that may occur.

Food: Food is at the heart of nearly all holiday celebrations, and usually steaming mounds of not-so-healthy foods like sugary sweet potatoes. Desserts and sweet drinks are in abundance. For a person with a chronic disease, the variety of foods may be tempting or forbidden, or may just strike terror in our hearts or feelings of being bothered. If you’re staying in a hotel, you might be relegated to eating the in-house free breakfast that doesn’t accommodate your diet.

Traveling: Sitting in a car or on a plane for long periods of time can be the breeding ground for physical pain or, at minimum, provide ample time to worry about one’s disease. Traveling also means a change of routine and a lot of unpredictability and extra stress. For example, flying means I have to go through security at the airport, go through a pat-down while the rest of my family stands by waiting, and explain to multiple personnel what my disease is, what my devices do, and no, they cannot be removed from my body for inspection. Time zone and altitude changes can also be difficult.

Activity: Some holiday celebrations include activities which might be out of your typical routine: skiing, going from house-to-house visiting relatives, power-shopping with your mom on Black Friday. These activities can cause your disease to flare-up in undesirable ways, zapping your energy and bringing down your mood. [1]

For the caregiver who is constantly on call, the holidays just might seem like too much. If you know a caregiver the best thing to do this time of year is help. Perhaps offer to cook, shop, or just spend time with them. Many caregivers get burned out and need a break. Some suggestions for caregivers on how to avoid burnout this time of year are found in a great article by Empowher.com called “3 Steps to Avoiding Caregiver Burnout during the Holidays.”[2] The three biggest things to remember is know the signs of when you need a break, take care of yourself, and remember to ask for help. This is often easier said than done for many caregivers. Resources for help can be found at “The National Family Caregiver Association offers many tips and guides on how to take charge and effectively communicate with caregivers.  Log on to www.thefamilycaregiver.org or call them at 800-896-3650.”[3] The following great tips were found on Everydayhealth.com[4]:

*Eat healthy and try to exercise every day.

*Indulge in an enjoyable activity as often as you can – read a book, work on a hobby, or watch a movie.

*Pamper yourself with a massage or manicure.

*Keep a journal to record your thoughts and feelings.  This can be a good outlet for
frustrations.

* Be in touch with your own body and know when you are becoming ill or run down;
seek medical advice in a timely manner.

*If applicable seek support from your church or synagogue. Besides spiritual support, they often have programs to help caregivers.

*Remember that “laughter is the best medicine.”  Try to find some humor in daily situations.

*Join a support group.  If you can’t leave the house explore Internet options.

If you know a caregiver or chronically ill person, please remember that one of the best things you can offer this holiday season is love, support, time and help.

 

[1] http://www.huffingtonpost.com/rachel-garlinghouse/5-ways-the-holidays-are-hard-on-those-with-a-chronic-disease-and-10-ways-to-cope_b_8435494.html

[2] http://www.empowher.com/caregiving/content/3-steps-avoiding-caregiver-burnout-during-holidays

[3] http://www.everydayhealth.com/columns/lynda-shrager-the-organized-caregiver/how-to-avoid-caregiver-burnout-this-holiday-season/

[4] http://www.everydayhealth.com/columns/lynda-shrager-the-organized-caregiver/how-to-avoid-caregiver-burnout-this-holiday-season/

Metabolics and ALS

We often hear that we are what we eat.  Most people know how important it is to eat balanced healthy foods to stay healthy, but the importance of diet and nutrients is increased when you are ill. Often the symptoms or side effects of the disease are impaired metabolic function. Even eating a healthy diet won’t completely rectify this concern. Chronically ill patients sometimes can’t obtain the nutrients they require and/or the metabolizing process of nutrients has broken down. This breakdown impacts other critically important bodily functions.

Basics of Nutrition and Metabolism

Figure 1 – https://prezi.com/j5mbaoirevn1/copy-of-nutrition-vs-metabolism/#

In the recent article from National Institute of Health in November 2016 researchers found in the study “Metabolic Biomarkers and Neurodegeneration: A Pathway Enrichment Analysis of Alzheimer’s Disease, Parkinson’s Disease, and Amyotrophic Lateral Sclerosis”:

Neurodegenerative diseases such as Alzheimer’s disease (AD), Parkinson’s disease (PD), and amyotrophic lateral sclerosis (ALS) lack robust diagnostics and prognostic biomarkers. Metabolomics is a postgenomics field that offers fresh insights for biomarkers of common complex as well as rare diseases. Using data on metabolite-disease associations published in the previous decade (2006-2016) in PubMed, ScienceDirect, Scopus, and Web of Science, we identified 101 metabolites as putative biomarkers for these three neurodegenerative diseases. Notably, uric acid, choline, creatine, L-glutamine, alanine, creatinine, and N-acetyl-L-aspartate were the shared metabolite signatures among the three diseases. The disease-metabolite-pathway associations pointed out the importance of membrane transport (through ATP binding cassette transporters), particularly of arginine and proline amino acids in all three neurodegenerative diseases. When disease-specific and common metabolic pathways were queried by using the pathway enrichment analyses, we found that alanine, aspartate, glutamate, and purine metabolism might act as alternative pathways to overcome inadequate glucose supply and energy crisis in neurodegeneration. These observations underscore the importance of metabolite-based biomarker research in deciphering the elusive pathophysiology of neurodegenerative diseases. Future research investments in metabolomics of complex diseases might provide new insights on AD, PD, and ALS that continue to place a significant burden on global health.[1]

A year earlier, another study published in JAMA, October 2015, “Association Between Dietary Intake and Function in Amyotrophic Lateral Sclerosis” concluded:

 that Antioxidants, carotenes, fruits, and vegetables were associated with higher ALS function at baseline by regression of nutrient indices and weighted quantile sum regression analysis. We also demonstrated the usefulness of the weighted quantile sum regression method in the evaluation of diet. Those responsible for nutritional care of the patient with ALS should consider promoting fruit and vegetable intake since they are high in antioxidants and carotenes.[2]

Nutrition is especially important for ALS patients, and following the Deanna Protocol™ “supercharges” the right nutrition for patients with ALS (PALS). It also aids as a metabolic therapy and supports energy metabolism. A study published in 2014 by the National Institute of Health investigated and found that the Deanna Protocol® (DP):

Amyotrophic Lateral Sclerosis (ALS), also known as Lou Gehrig’s disease, is a neurodegenerative disorder of motor neurons causing progressive muscle weakness, paralysis, and eventual death from respiratory failure. There is currently no cure or effective treatment for ALS. Besides motor neuron degeneration, ALS is associated with impaired energy metabolism, which is pathophysiologically linked to mitochondrial dysfunction and glutamate excitotoxicity. The Deanna Protocol (DP) is a metabolic therapy that has been reported to alleviate symptoms in patients with ALS. In this study we hypothesized that alternative fuels in the form of TCA cycle intermediates, specifically arginine-alpha-ketoglutarate (AAKG), the main ingredient of the DP, and the ketogenic diet (KD), would increase motor function and survival in a mouse model of ALS (SOD1-G93A). ALS mice were fed standard rodent diet (SD), KD, or either diets containing a metabolic therapy of the primary ingredients of the DP consisting of AAKG, gamma-aminobutyric acid, Coenzyme Q10, and medium chain triglyceride high in caprylic triglyceride. Assessment of ALS-like pathology was performed using a pre-defined criteria for neurological score, accelerated rotarod test, paw grip endurance test, and grip strength test. Blood glucose, blood beta-hydroxybutyrate, and body weight were also monitored. SD+DP-fed mice exhibited improved neurological score from age 116 to 136 days compared to control mice. KD-fed mice exhibited better motor performance on all motor function tests at 15 and 16 weeks of age compared to controls. SD+DP and KD+DP therapies significantly extended survival time of SOD1-G93A mice by 7.5% (p = 0.001) and 4.2% (p = 0.006), respectively. Sixty-three percent of mice in the KD+DP and 72.7% of the SD+DP group lived past 125 days, while only 9% of the control animals survived past that point. Targeting energy metabolism with metabolic therapy produces a therapeutic effect in ALS mice which may prolong survival and quality of life in ALS patients.[3]

One thing shown over and over via these studies and anecdotal reports from PALS is that the Deanna Protocol® Metabolic Therapy is helping many PALS with quality of Life.

New studies are underway. the scientists at University of South Florida (USF) are moving forward with the experiment to determine the efficacy of the Deanna Protocol® Plan when combined with glutamic oxaloacetate transaminase (GOT). [4]

The DP® Plan focuses on cell metabolism. It delivers Alpha-ketoglutarate (AKG) to the Krebs Cycle in the neurons. The increase in AKG enables their mitochondria to produce enough energy to keep cells alive, despite their exposure to an unhealthy amount of extracellular glutamate.  AKG usually does not pass through the cell membranes in normal healthy cells.  Based on our experience, we found that the permeability of the cell membrane in diseased or damaged cells changes and allows AKG to permeate the cells. Due to the fact that AKG only enters diseased cells, the substance only goes where it is needed.

If you need more information on how Simplesa® Deanna Metabolic Plan can help you, please contact us for assistance.

Footnotes:

[1] https://www.ncbi.nlm.nih.gov/pubmed/27828769

[2] http://jamanetwork.com/journals/jamaneurology/fullarticle/2570546

[3] https://www.ncbi.nlm.nih.gov/pubmed/25061944

[4] https://www.winningthefight.org/latest-developments

Caregivers – “Take Care to Give Care”

 caregivingCaregiving – It’s one of the hardest, physically and emotionally draining roles anyone can undertake.  In a 2015 survey from AARP and the National Alliance of Caregiving it was found that a third of all Americans are caregivers, providing care to someone who is disabled, ill or elderly.  The same study found that almost 80% of these caregivers stated they needed help.[1] Caregivers can be family members or friends. Many caregivers have jobs, families, and the additional responsibility of the minute to minute needs of the person to whom they are providing care 24/7.  It is not just driving to doctor visits or making meals. Many caregivers are providing nursing care (maintaining Stomas, catheters, or feeding tubes), often without the training or previous experience to do so. Caregivers learn quickly as the lives and well-being of someone they love relies on them. Perhaps the person being cared for is not a good patient, or does not remember you, or has tremendous guilt in being ill or helpless. These are all potential circumstances that many caregivers have to face every day. It’s one of the experiences in life that unless you have done it – you won’t quite understand the demands or the challenges.

Tips for Caregiver:

The first rule of taking care of others: take care of yourself first. Caregiving can be a rewarding experience, but it is also physically and emotionally demanding. The stress of dealing with caregiving responsibilities leads to a higher risk of health issues among the nation’s 90 million family caregivers. So as a family caregiver, remember to pay attention to your own physical and mental wellness, and get proper rest and nutrition. Only by taking care of yourself can you be strong enough to take care of your loved one. You really do need to “take care to give care!”

  • Caregiving can be a stressful job. Most family caregivers say they feel stressed providing care for a loved one. With all of their caregiving responsibilities – from managing medications to arranging doctor appointments to planning meals – caregivers too often put themselves last.
  • The stress of caregiving impacts your own health. One out of five caregivers admit they have sacrificed their own physical health while caring for a loved one. Due to stress, caregivers have a disproportionate number of health and emotional problems. They are twice as likely to suffer depression and are at increased risk for many other chronic conditions.
  • Proper nutrition helps promote good health. Ensuring that you are getting proper nutrition is key to help maintain your strength, energy and stamina, as well as strengthening your immune system. Maintaining a healthy diet is one of the most powerful things you can do to take care of yourself and keep a positive attitude overall.
  • Ensuring good nutrition for your loved one helps make care easier. As many as half of all older adults are at risk for malnutrition. Good nutrition can help maintain muscle health, support recovery, and reduce risk for re-hospitalization – which may help make your care of a loved one easier.
  • Remember: “Rest. Recharge. Respite.” People think of respite as a luxury, but considering caregivers’ higher risk for health issues from chronic stress, those risks can be a lot costlier than some time away to recharge. The chance to take a breather, the opportunity to re-energize, is vital in order for you to be as good a caregiver tomorrow as you were today.[2]

What is Respite?

According to the Lifespan Respite Care Act (PL 109-442), Lifespan Respite is defined as ‘coordinated systems of community-based respite for family caregivers of children or adults regardless of special need.’  For more information, on Respite please visit: https://archrespite.org/index.php

Tips for Others:

As a caregiver your world at times feels like it’s in chaos and out of your control.  Interacting with other people can often be tiresome and difficult as you simply feel too overwhelmed to participate in social settings. Other people often want to help and support you, but struggle with what they can say and do to help.  We have compiled some great suggestions for what to say or not to say to caregivers.  Please feel free to send suggestions we have not mentioned in this blog. Interesting enough, there is some overlap on the advice on what best to say or not to say to caregivers. Bottom line:  speak from the heart and be supportive of their needs.

12 Things You Should Say to a Family Caregiver By Becky Benishek

Keep in mind many caregivers won’t ask for help, so the best way to help someone is to do things for them that they may not have the time, money, or mental energy to do for themselves. Social settings and activities may at times be too draining, or the fear of being a “bummer” or not in “the best mood” can often cause many caregivers to go into recluse mode.

A Dozen Things You Should Never Say to A Caregiver by Ann Brenoff

There is assistance and resources to help caregivers.  Many times a caregiver is so consumed in the day to day tasks of caregiving they don’t have the bandwidth to research tools or support.  One such resource is geared to caregivers of Veterans.  Per the Veteran Benefits: Caregiver Programs and Services on Military.com website:

On May 5, 2010, the Caregivers and Veterans Omnibus Health Services Act of 2010 was signed into law. Title I of the Act will allow VA to provide unprecedented benefits to eligible Caregivers (a parent, spouse, child, step-family member, extended family member, or an individual who lives with the Veteran, but is not a family member) who support the Veterans who have given so much for this Nation. The law distinguishes between Veterans who incurred or aggravated a serious injury in the line of duty on or after Sept. 11, 2001 (post-9/11 Veterans), and those Veterans whose injuries were incurred prior to Sept. 11, 2001 (pre-9/11 Veterans).

Please visit the VA’s caregiver page for more information, and to apply for these services.

 Caregivers Toolbox:

http://caregiveraction.org/family-caregiver-toolbox

http://www.caregiving.org/resources/

http://www.rosalynncarter.org/caregiver_resources/

https://www.medicare.gov/campaigns/caregiver/caregiver.html

http://www.aarp.org/home-family/caregiving/?cmp=RDRCT-CRGNG_APR12_012

http://www.easterseals.com/explore-resources/for-caregivers/understanding-aging-and-caregiving.html

Footnotes:

[1] http://www.huffingtonpost.com/entry/a-dozen-things-you-should-never-say-to-a-caregiver_us_5621409fe4b08589ef474317

[2] http://caregiveraction.org/national-family-caregivers-month-theme/

Flu Season & Keeping Healthy

The Flu season impacts a lot of people this time of year. There is always a lot of media about getting sick, so we have compiled some useful resources that could come in handy to stay healthy.

When is Flu Season?

The Flu season runs from October into late spring. The CDC says “the flu season begins when certain key flu indicators (for example, levels of influenza-like illness (ILI), hospitalization and deaths) rise and remain elevated for a number of consecutive weeks. Usually ILI increases first, followed by an increase in hospitalizations, which is then followed by increases in flu-associated deaths.” ¹

What is the difference between a Cold and the Flu?
Both a cold and Flu are respiratory illnesses. Typically, a cold is far less severe in nature and duration. Most of us know all too well that a bad cold and related symptoms will usually last for a few days or a week. Lingering symptoms that persist or worsen can indicate you have the Flu or a secondary concern.  Flu symptoms can make you ill for days to even weeks.

Why is the Flu a big deal?
No one likes to get sick, and getting a nasty cold during cold weather seems bad enough. A Flu can often be far worse in symptoms, downtime, and complications than a typical cold.
For those with chronic illness or disabilities it can be an incredibly dangerous. A recent article and video from CNN tells many “It’s time to get your flu shot.” Those who are young, old, or at risk from the complications that might occur from the Flu on a weaker immune system need to be protected.

Fight the Flu
Fight the Flu

How to protect yourself from the Flu?
One suggested precaution is to get the Flu vaccination / shot. The Flu vaccination this year is “expected to be more effective than last season.” ² It is recommended that not only should high risk people get the shot, but also those who spend time around them. Caretakers and family members also have be cautious as they can be contagious and transmit the Flu.

Why do I need a Flu shot every year?
Many wonder why we need to get another Flu vaccination every year. The reason is simple: the virus changes. A recent article in USA Today states that doctors are anticipating this to be a tough season and a nasty Flu. “Dr. Robin Altman, chief of general pediatrics for Children’s & Women’s Physicians of Westchester, suspects this may be another tough battle with the virus. Altman is urging patients to get vaccinated now, since it takes two weeks for the body to build up immunity. The flu vaccine remains the best protection against the virus.”³

I have ALS should I get the Flu Shot?
Protecting those with ALS from the Flu is very important. The ALS Association wrote a recent article about what you need to know to protect people with ALS from the Flu. Avoiding crowded places or people who are sick with either a cold or Flu is recommended. Some common sense and good hygiene are suggested. Caretakers and family members of those with ALS may want to get vaccinated.  ALS patients should always discuss the benefits and risks of getting vaccinated with their doctor. 4

A Flu for a person with weak swallowing and respiratory processes represents a significant health issue. Additional information on the Flu Virus and protecting your family and yourself this Flu season can also be found on: http://www.earlydetectionplan.org/

SOURCES

[1] http://www.cdc.gov/flu/about/season/flu-season-2015-2016.htm

[2] http://www.cnn.com/2015/10/07/health/flu-shot-vaccine-2015/

[3] http://www.usatoday.com/story/news/nation-now/2015/10/05/flu-season-underway/73383394/

[4] http://www.alsa.org/news/vision-express/articles/october-2015/flu-season.html

31 FACTS FOR ALS AWARENESS MONTH

31 FACTS FOR ALS AWARENESS MONTH

Guest Post by Sarah Martin

Fact #1: ALS is a disease of the nerve cells in the brain and spinal cord.

Fact #2: ALS is also known as Lou Gehrig’s disease, named after Yankees player Lou Gehrig.

Fact #3: Most people with ALS live 2-5 years after the first signs of the disease. About 10% live for ≥10 years.

Fact #4: Every 90 minutes someone is diagnosed with ALS in the United States.

Fact #5: Early signs of ALS include muscle weakness, twitching, muscle cramps & difficulty speaking or swallowing.

Fact #6: ALS occurs throughout the world and has no socioeconomic, ethnic, or racial boundaries.

Fact #7: There is no single diagnostic test for ALS. Diagnosis is based on symptoms and ruling out other diseases.

Fact #8: The cause of ALS is not known.

Fact #9: ALS does not affect a person’s ability to smell, see, taste, hear, or recognize touch.

Fact #10: French neurologist Jean-Martin Charcot discovered ALS in 1869, yet we still have no cure for the disease.

Fact #11: Tests done to diagnose ALS can include electromyography, blood & urine tests, spinal tap & muscle biopsy.

Fact #12: About 5-10% of ALS cases are inherited, also known as familial ALS. It is caused by a genetic mutation.

Fact #13: Most ALS cases are sporadic. It can affect anyone.

Fact #14: US military veterans are approximately twice as likely to develop ALS.

Fact #15: ALS is not contagious.

Fact #16: ALS usually strikes between the ages of 40-70, but can occur in younger adults and the elderly.

Fact #17: ALS is slightly more common in men than women.

Fact #18: ALS = MND (Motor Neuron Disease) in some parts of the world such as the UK and Australia.

Fact #19: A small percentage of people with ALS experience frontotemporal dementia (FTD).

Fact #20: ALS generally spreads from one part of the body to another.

Fact #21: Some public figures with ALS include former NFL player Steve Gleason and physicist Stephen Hawking.

Fact #22: ALS stands for amyotrophic lateral sclerosis.

Fact #23: Involuntary muscles are not affected in ALS. These include the muscles that control the bladder and heartbeat.

Fact #24: It is estimated that approximately 30,000 people in the United States may be living with ALS at the current time.

Fact #25: Current treatment for ALS focuses on managing symptoms and improving quality of life.

Fact #26: It is essential that people with ALS receive psychological and social support in addition to physical support.

Fact #27: People with ALS work with a multidisciplinary team of doctors to manage symptoms and improve quality of life.

Fact #28: In 2014, the ALS Ice Bucket Challenge raised millions of dollars for research, patient care and more.

Fact #29: There are organizations & people around the world working hard for a cure for ALS, including ALSA & ALS TDI.

Fact #30: The month of May has been established as ALS Awareness Month in the United States.

Fact #31: We will put an end to ALS one day.

Exciting News for ALS Stem Cell Treatment

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/

Health and Holidays

The holidays are frantic and stressful for everyone. If you are disabled or chronically ill, the holidays can present additional stress and potential health risks for you. For the caretaker of a chronically ill person the holiday can add another level of complexity and stress to your already busy life. No one wants to be a Grinch during this time of the year, but it is important to take some extra precautions and preparation to cope.

 

disabledchristmas

Per a recent article in the Huffington Post called “5 Ways the Holidays Are Hard on Those with a Chronic Disease (and 10 Ways to Cope)” the author provides advice on how to deal with the barrage of food, activity and traveling that may occur.

Food: Food is at the heart of nearly all holiday celebrations, and usually steaming mounds of not-so-healthy foods like sugary sweet potatoes. Desserts and sweet drinks are in abundance. For a person with a chronic disease, the variety of foods may be tempting or forbidden, or may just strike terror in our hearts or feelings of being bothered. If you’re staying in a hotel, you might be relegated to eating the in-house free breakfast that doesn’t accommodate your diet.

Traveling: Sitting in a car or on a plane for long periods of time can be the breeding ground for physical pain or, at minimum, provide ample time to worry about one’s disease. Traveling also means a change of routine and a lot of unpredictability and extra stress. For example, flying means I have to go through security at the airport, go through a pat-down while the rest of my family stands by waiting, and explain to multiple personnel what my disease is, what my devices do, and no, they cannot be removed from my body for inspection. Time zone and altitude changes can also be difficult.

Activity: Some holiday celebrations include activities which might be out of your typical routine: skiing, going from house-to-house visiting relatives, power-shopping with your mom on Black Friday. These activities can cause your disease to flare-up in undesirable ways, zapping your energy and bringing down your mood. [1]

For the caregiver who is constantly on call, the holidays just might seem like too much. If you know a caregiver the best thing to do this time of year is help. Perhaps offer to cook, shop, or just spend time with them. Many caregivers get burned out and need a break. Some suggestions for caregivers on how to avoid burnout this time of year are found in a great article by Empowher.com called “3 Steps to Avoiding Caregiver Burnout during the Holidays.”[2] The three biggest things to remember is know the signs of when you need a break, take care of yourself, and remember to ask for help. This is often easier said than done for many caregivers. Resources for help can be found at “The National Family Caregiver Association offers many tips and guides on how to take charge and effectively communicate with caregivers.  Log on to www.thefamilycaregiver.org or call them at 800-896-3650.”[3] The following great tips were found on Everydayhealth.com[4]:

*Eat healthy and try to exercise every day.

*Indulge in an enjoyable activity as often as you can – read a book, work on a hobby, or watch a movie.

*Pamper yourself with a massage or manicure.

*Keep a journal to record your thoughts and feelings.  This can be a good outlet for
frustrations.

* Be in touch with your own body and know when you are becoming ill or run down;
seek medical advice in a timely manner.

*If applicable seek support from your church or synagogue. Besides spiritual support, they often have programs to help caregivers.

*Remember that “laughter is the best medicine.”  Try to find some humor in daily situations.

*Join a support group.  If you can’t leave the house explore Internet options.

If you know a caregiver or chronically ill person, please remember that one of the best things you can offer this holiday season is love, support, time and help.

 

[1] http://www.huffingtonpost.com/rachel-garlinghouse/5-ways-the-holidays-are-hard-on-those-with-a-chronic-disease-and-10-ways-to-cope_b_8435494.html

[2] http://www.empowher.com/caregiving/content/3-steps-avoiding-caregiver-burnout-during-holidays

[3] http://www.everydayhealth.com/columns/lynda-shrager-the-organized-caregiver/how-to-avoid-caregiver-burnout-this-holiday-season/

[4] http://www.everydayhealth.com/columns/lynda-shrager-the-organized-caregiver/how-to-avoid-caregiver-burnout-this-holiday-season/

Finding Financial Assistance for ALS Patients

A diagnosis of ALS is devastating news for patients and their family. Dealing with the extensive costs associated with any chronic illness only adds additional burden and stress. Some care is covered by a patient’s health insurance but some costs are not considered customary or reasonable, or not approved by some carriers. In a recent study called the economic impact of amyotrophic lateral sclerosis: a systematic review by Matthew Gladman, and Lorne Zinman found that “costs associated with ALS were greater than other neurological diseases.”[1] Another abstract indicated that there are few published reports on the cost of ALS care in the United States, but wanted to so examine those costs and identified strategies to assist patients with these expenses. The study: Financial cost of amyotrophic lateral sclerosis: A case study March 2015 concluded that: Continue reading Finding Financial Assistance for ALS Patients

Preparing for Emergencies When You Have ALS

Emergencies can be frightening and dangerous for anyone. When you have a chronic illness like ALS, natural disasters pose additional risks for those who have limited mobility or are homebound.

Recently, the ALS Association posted a wonderful Emergency Preparedness Checklist for People with ALS. One of the most important things to do is to be proactive in case of emergency. The ALS breaks it down for you suggesting to take the time and work to prepare as you will then feel less vulnerable if and when an emergency arises. These disasters could include natural disasters, home fires, acts of terrorism, or accidental occurrences.
Continue reading Preparing for Emergencies When You Have ALS