Facts

Amyotrophic lateral sclerosis (ALS), also known as Lou Gehrig's disease, is a progressive and fatal neurodegenerative disease that initially weakens, and eventually destroys motor neurons.

Motor neurons are essential for the transmission of signals between the brain and skeletal muscles. As these pathways deteriorate so does a patients ability to control muscles.

In most cases, ALS does not affect cognitive abilities - the mind is often unaffected. New research shows that approximately one third of ALS patients will have some form of cognitive impairment, but this impairment does not affect survival.

Regardless of what part of the body is first affected by Amyotrophic Lateral Sclerosis (ALS), muscle weakness and atrophy always progresses. The speed of progression and severity of intial affects differs from individual to indvidual, but the affects are fatal (90% of patients die within 3-5 years of symptoms).

Individuals affected by ALS have increased problems with mobility, swallowing, speaking, and/or forming words.

As the disease progresses to the later stages individuals will have difficulty breathing (due to a weakened respiratory system). Ventilation support can reduce problems associated with breathing, and has in some cases prolonged survival, however, ventililators do not affect the progression of ALS.

ALS is difficult to diagnose because there is not one test which provides a definitive diagnosis. While the presence of upper and lower motor neuron degeneration is suggestive of ALS, a diagnosis cannot be based on this evidence alone. Instead, a doctor (neurologist) upon presentation of ALS symptoms must run a series of tests to eliminate other diseases with similar symptoms.

90% of people with ALS die from respiratory failure within three to five years from the onset of symptoms. Approximately 5% percent of individuals with ALS will survive for more than 10 years.

At the moment, there is no cure for ALS, diagnosis is difficult, and the causes of ALS are not completely understood.

Amyotrophic Lateral Sclerosis (ALS) Facts

  • Quebec and France, referred to as “Amytrophic la Sclérose Latérale

International ALS Facts

  • ALS was first recognized in 1869 by French neurologist Jean-Martin Charcot.
  • Between five and ten of every 100,000 people in the world will develop ALS.
  • 90% of ALS patients will die within three to five years of diagnosis.
  • Half of all people diagnosed with ALS die within 14 months.
  • 5-10% of ALS cases are familial (an inherited genetic defect).
  • 90-95% of ALS cases are sporadic (studies show cases of sporadic ALS are increasing internationally).
  • Every 90 seconds someone in the world is diagnosed with ALS.
  • Approximately 80% of reported cases of ALS/MND are individuals between the ages of 40 and 70.
  • The gene defect responsible for approximately 40% of familial forms of ALS has been identified (located on chromosome 21, the gene codes the enzyme named superoxide dismutase [SOD])

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United Kingdom ALS Facts

  • Approximtely 3 people are diagnosed with ALS every day.
  • Approximtely 3 people a day die of ALS in the United Kingdom.
  • Approximately 5,000 individuals in the UK live with motor neurone disease (MND).

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American ALS Facts

  • As many as 5,600 Americans are diagnosed with ALS every year.
  • As many as 30,000 Americans live with ALS.
  • More than 120,000 cases of ALS are diagnosed worldwide annually.

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Canadian ALS Facts

  • Eighty percent of people with ALS die within two to five years of diagnosis
  • Approximately 2,500 - 3,000 Canadians currently live with ALS.

Motor Neuron Disease (MND) Facts

  • United States and Canada, referred to as “Motor Neuron Disease”
  • United Kingdom, referred to as “Motor Neurone Disease
  • Quebec and France, referred to as “Maladie Neurodégénérative”

Comments

Anonymous's picture

hello good morning my name is Heather I have a family member who was just diagnosed with ALS and I was wondering how to become a better caregiver to fit her needs I already have my CNA GNA and also my CPR I have already searched the web for classes and couldn't get any answers please help me I want to be sure to give my aunt the best care she needs I would be forever thankful for any suggestions
Brewski's picture

It's wonderful that you would be willing to be the caregiver. Physical care is only half the battle, helping with their depression is the main problem. My personal experience is that laughter is the best medicine. There are great comedians on youtube who are VERY funny such as Bill Burr, Jim Gaffigan, Etc. Youtube pranks are also very funny. You get the idea.
blufftongal's picture

Does anyone recommend antidepressants, if so does it help.
art1959's picture

I find it hard to understand that the medical profession in the VA has yet to recognize PLS as a variant of ALS and according to some medical schools like John Hopkins stated PLS is the rear form of ALS even though it won't kill you it has the same affect as ALS with disability. I was told by my treating VA Neurologist that PLS was a better diagnoses and that it can convert to ALS at anytime! She also said that that since my EMG test didn't show fibrillations that it was more PLS than ALS and its not service connectable. Another VA Neurologist told my treating neuro that she believes I have ALS as well as my Pulminary Doctor who wrote in my VA medical records ( STRONG HX. OF SNORING ALONG WITH DX OF ALS). I now have 3 machines for 1) Sleep Apnea, 2) Lungs breathing and cough assist, 3) Excess Saliva suction. My Podiatrist also said my issues were because of ALS. When VA Doctors were requested by VA Psychologist and Paralyze Veterans of America to do a DBQ (Disability Benefits Questionnaire) for VA disability PLS/ALS they all refused to sign one. In September of 2016 the 1st week the VA regular Doctor though I had laryngitis and prescribed a week long medication for it. Well after taking it nothing changed! By the end of the first week of October 2016 I could no longer speak and pronounce words. Ent did test and my voice box is fine and Muscles around them okay and they believe that the MND in the brain is affecting my speech. I am frustrated over this and even the report on EMG stated ( There were fibrillation potentials in the gastrocnemius and T6 Paraspinal muscles) and left sensory amplitude was markedly low. However, given the findings of fasciculations and rare fibrillation potentials would recommend repeating study in six months. Nerve conduction studies of the left arm and leg demonstrated borderline low Tibial motor and peroneal motor amplitudes with borderline low tibial conduction velocity. I am no Doctor but to have gone from normal to were I'm at today in five months, I feel something is wrong yet I also feel my Doctors don't listen and my treating Neurologist is aggressive in the fact that her opinion is the only one that matters. I have heard there is a new MND name called PLS dominate ALS. I am not sure but found it when doing research. I wish I could get a answer to what is really going on. If anyone here has opinions or answers please let me know.