Category Archives: Guest Blog

Managing Quality of Life for ALS Patients

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Winning the Fight is a mostly volunteer 501(c)3 non-profit organization that develops and studies nutritional therapies for ALS (Amyotrophic Lateral Sclerosis). They developed a metabolic program for ALS called the Deanna Protocol®  and scientific studies show that the program is indeed effective! Winning the Fight posted a very interesting article on their site and we wanted to share it with you.

Management Versus Cure
Scientists have been seeking a cure for ALS for over 130 years and none has been found. While scientists look for a cure for future ALS patients, thousands of patients currently suffering from ALS die as they wait for that cure to come. The life expectancy for those with ALS is so short that those living with the disease today most likely will not be alive to witness the discovery of a cure. Even if they would be alive when a cure is discovered, the chance of them remaining alive to see that cure gain FDA approval and become readily available to the public is slim.

As you can see, any cure that is found will benefit those diagnosed in the future, not those who have ALS now and are facing a life expectancy of two to five years. Who in the medical community is focusing them? Who is trying to keep them alive and well long enough for a cure to be found?

Winning the Fight, Inc. is the only organization that has bee focusing its research on prolonging the lives of those who have ALS now, improving their quality of life, and maintaining their physical function until a cure is found. This cause is just as worthy as the mission to find a cure, yet Winning the Fight’s research only received .009% of the total funding from last year’s Ice Bucket Challenge. (We received $10,000 and ALS Association received $110,000,000.) Those who are suffering and dying now deserve more than .009% of the nation’s financial commitment to ALS during this year’s ice bucket challenge. Wouldn’t you agree?

If you’d like to donate to organizations looking for a cure, great! You should. Please consider splitting your funds between Winning the Fight and those organizations. There are ALS patients who need you now. Please, give them more than .009%.

You Can Help Improve the Deanna Protocol® by Purchasing from Simplesa!

Simplesa will donate a portion of the proceeds of all sales of Deanna Protocol® products to Winning the Fight and Winning the Fight will use these donations to fund research to optimise the Deanna Protocol®.

About Winning the Fight, Inc. (WFND) 

Social Media: Facebook, Twitter, LinkedIn 

31 FACTS FOR ALS AWARENESS MONTH

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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.

PALS and Nutrition

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Guest Post by Sarah Martin

SarahMartinMy name is Sarah Martin. I am a junior neuroscience major at Drake University in Des Moines, Iowa. When I was 14 years old and a sophomore at the Illinois Mathematics
and Science Academy, my principal and close friend, Dr. Eric McLaren, was diagnosed with amyotrophic lateral sclerosis (ALS). ALS is a fatal neurodegenerative disease that
affects nerve cells in the brain and spinal cord. Since his diagnosis, I have been
passionate about fighting ALS. I conduct research at universities in the Midwest, attend support groups in the Chicagoland area to meet pALS and their families, blog about my journey to a cure for the disease, speak at schools about ALS and so much more! Dr.
McLaren passed away from ALS in June of 2014, but I have made it my life’s mission to
put an end to this disease. My future plans include earning a doctorate degree,
becoming an ALS researcher, and helping develop an effective treatment for ALS.
The most important part of my ALS work is the people with ALS (pALS). During my time
at ALS support groups, I have learned that because the disease is characterized by
muscle weakness and atrophy, there are a handful of challenges pALS may face in
regards to eating. Difficulties with upper body coordination may make it difficult to
prepare meals. Weakness of tongue and facial muscles may not only make it tough to
safely chew and swallow food, but can also prolong mealtimes. In addition, aspiration of
solids or liquids into the lungs can result in aspiration pneumonia. pALS may experience
a loss of appetite and fatigue which can make eating a difficult task. As ALS progresses
in a person, the amount of calories consumed typically decreases.
Proper nutrition is vital. The human body requires various nutrients to function. Due to
decreased food intake in ALS, it can be difficult to maintain nutritional needs, but there
are nutritionists, dietitians and other experts working to improve the nutritional status of
pALS. In order to maintain the nutritional needs of pALS, tips for safer chewing and
swallowing techniques can be utilized, such as taking smaller bites, eating slowly and
sitting in an upright position while eating. Healthcare professionals can also assist in
making decisions regarding alternate feeding options, such as a feeding tube.
Maintaining the nutritional needs of pALS is important as it can help slow down the
muscle breakdown process and prevent a decrease in weight loss (nutrition-related). It
can also help keep the immune system strong and improve the quality of life for those
with ALS!

For More Information about Sarah Martin contact:

Sarah’s Mission
A woman on a mission to end ALS/MND/Lou Gehrig’s disease
Follow my journey at www.sarahmartinals.com
missionsarahs@gmail.com

ALS research study on support for children and young people affected by ALS.

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Guest Blog by Oliver Clabburn

ALS is a disease that not only affects the person diagnosed, but also those that are around. For this reason, it is often called a ‘family disease’ as it impacts upon the whole household. This means that many children and young people will unknowingly fall into a caring role and will begin to help with duties that are not often associated with ‘normal childhood’.

 My family and ALS

I was 7 when my Dad was diagnosed with the disease and I remember being confused as to why things at home were changing. Initially things seemed great. Dad had to stop working because his speech became too slurred, but this meant he would be at home to help with homework when I got back from school each day!

 This didn’t last long though as the disease progressed and his physical body began to slowly deteriorate. Soon enough, the routine of how to pick him up became second nature as falls around the house became more and more frequent. Things gradually got worse and I had to start helping with things like feeding, medication and toileting. Yet, it all seemed normal to a ten-year old and I assumed that all kids do this, right?

 For the final period of his life, my Dad moved into a local hospice and received the most incredible care that he, and my family deserved. Yet with all of the best care in the world, ALS will always win and he eventually lost his battle in 2004. It was at this stage that things started to become ‘real’ to me and the challenges of dealing with bereavement kicked in.

Current Day

Fast forward to the current day and I’m carrying out a PhD in the UK. My area of research is children and young people who provide care for family members with ALS, and also, young people who are bereaved due to the disease.

 When I started my doctorate, I began to investigate different ways of supporting young people affected by the disease. I began to think about my experience and what I found supportive whilst I helped to care and later grieve. People often talk about the power of photographs when remembering people who have died. Unfortunately, my Dad was a keen photographer which meant that there were very few photos with him in them as he always took them! There was however, the answer-phone recording which I would listen to over and over when I was home alone. Sometimes I wouldn’t even listen to the words, and instead, I would hear the individual letters or the tone of his voice and try to imagine what he would sound like saying other things and ‘talking’ to me. Upon reflection, this was my way of reconnecting with him and gradually processing the idea that he had gone. More importantly, it was something I could do by myself and at my pace by pressing the play button on the answering-machine.

I wanted my PhD research to investigate ways of supporting young people who provide care or are bereaved due to ALS. I soon found myself reading up about ‘digital legacies’. A digital legacy is the various things that people create digitally or online which often remain in existence when someone has died. For example, a person’s email or Facebook account which is full of their photographs, messages and memories. This made me think of Dad’s answer phone message and how this was an early type of digital legacy with his voice being stored in a type of digital existence, and more importantly, how this helped and supported me when he had died.

It got me thinking that with the advances in technology, young carers or bereaved young people would not have to settle for a short answerphone message, and that there could be something better out there.

 My Study

My doctoral research is exploring purposefully recorded digital legacies as a means of support for children and young people affected by ALS. People with the disease record a series of videos about their life, memories, accomplishments and messages specifically for a child in their family. The videos are then exported to a DVD or cloud source which is given to the child to use whenever he/she wishes to reconnect and remember. I am going to focus particularly on people’s experiences of creating and using a digital legacy and I am now recruiting participants!

I am hoping to interview around 10 people from the following three groups from now until April 2017:

  1. People with ALS who are recording/have already recorded a digital legacy for a child or young person in their family.
  1. Young people (aged 11-24) who are currently caring for a family member with ALS and use a pre-recorded digital legacy as a means of support.
  1. Young people (aged 11-24) who are bereaved due to losing a family member who had ALS and are using a pre-recorded digital legacy to support them whilst they grieve.

The interview will take place either face-to-face or through Skype, depending on location and preference of those taking part. The interview will last about 30 minutes and will be audio recorded.

If you, or someone you know would like to find out more about my study, or, how to create a video based digital legacy, please visit my research page www.facebook.com/mndlegacy

Guest Blog by Jodi O’Donnell – Ames, founder of the charity Hope Loves Company (HLC).

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HLC is the only non-profit organization in the US dedicated to supporting children with a parent or grandparent with ALS. Jodi shared an excerpt from the charity’s upcoming book, “Someone I Love Has ALS, A Family Caregiver’s Guide” edited by Jodi O’Donnell-Ames.

The book will be available next month on Amazon.

Continue reading Guest Blog by Jodi O’Donnell – Ames, founder of the charity Hope Loves Company (HLC). →