Als Quantitative Survey

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Goal: Develop a survey plan to discern aspects of the amyotrophic lateral sclerosis and motor neuron disease conditions in a longitudinal aspect over time. Mail Survey for ALS (Issues are general to specific): When were you first diagnosed? What were your first symptom or symptoms? When did you first see an MD for your symptoms? When were you first referred to a neurologist? What tests did the neurologist perform? What blood tests? What genetic tests? When was an EMG done? When was an EEG done? When were evoked responses measured, if at all? When did you notice muscular weakness? In which muscles did you notice them? Did you have difficulty with your speech or difficulty swallowing?? Any pain and where? Any tremors and when? Any fasciculations, trembling in the muscles? Where, in what muscles did you notice the fasciculations? Any difficulty controlling movements? In what muscles did you have problems controlling movements? What muscle groups? Upper arms, neck, spine, lower extremities, head, tongue, or larynx? What physician prescribed medications have you taken? How long have you been taking that medication? Do you take medication or supplements for ALS? Do you take vitamin E? Do you take vitamin D supplementation? Do you take a general daily multivitamin? Does it have Cardio or Lycopene in it? Is there Selenium in your vitamins? Do you consume a lot of servings of vegetables and/or fruits with large amounts of antioxidants in them? Do you take Riluzole for ALS? How long have you taken riluzole for? Do you eat cantaloupe? How much? Do you take Mega T tablets, consume Green Tea and consume citrus with it? How much Green Tea do you drink per day or per week time? Do you take B vitamins? If so, do you take them for your ALS? Do you take fish oil or omega 3 fatty acids? How much fish oil do you take per day. Do you take whey, whey protein, or amino acid supplements? Do you exercise? What forms of exercise do you participate in? Do you lift weights or do muscle resistance training? Did you do the resistance training before your ALS?

Transcript of Als Quantitative Survey

Page 1: Als Quantitative Survey

Goal: Develop a survey plan to discern aspects of the amyotrophic lateral sclerosis and motor neuron disease conditions in a longitudinal aspect over time. Mail Survey for ALS (Issues are general to specific): When were you first diagnosed? What were your first symptom or symptoms? When did you first see an MD for your symptoms? When were you first referred to a neurologist? What tests did the neurologist perform? What blood tests? What genetic tests? When was an EMG done? When was an EEG done? When were evoked responses measured, if at all? When did you notice muscular weakness? In which muscles did you notice them? Did you have difficulty with your speech or difficulty swallowing?? Any pain and where? Any tremors and when? Any fasciculations, trembling in the muscles? Where, in what muscles did you notice the fasciculations? Any difficulty controlling movements? In what muscles did you have problems controlling movements? What muscle groups? Upper arms, neck, spine, lower extremities, head, tongue, or larynx? What physician prescribed medications have you taken? How long have you been taking that medication? Do you take medication or supplements for ALS? Do you take vitamin E? Do you take vitamin D supplementation? Do you take a general daily multivitamin? Does it have Cardio or Lycopene in it? Is there Selenium in your vitamins? Do you consume a lot of servings of vegetables and/or fruits with large amounts of antioxidants in them? Do you take Riluzole for ALS? How long have you taken riluzole for? Do you eat cantaloupe? How much? Do you take Mega T tablets, consume Green Tea and consume citrus with it? How much Green Tea do you drink per day or per week time? Do you take B vitamins? If so, do you take them for your ALS? Do you take fish oil or omega 3 fatty acids? How much fish oil do you take per day. Do you take whey, whey protein, or amino acid supplements? Do you exercise? What forms of exercise do you participate in? Do you lift weights or do muscle resistance training? Did you do the resistance training before your ALS?

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Do you swim? How much do you swim per day or per week? Have you served in the US military? On active duty? How long did you serve on active duty for? Did you fight in Desert Storm in Iraq or in the 2003 Iraqi War? The advantages of my strategy for the survey is that a lot of causal, mechanistic, diagnosis, durations, treatment options can be gleaned. All the questions are appropriate for ALS research and all the questions have direct bearing on prognostic information and consequences. For example, amino acids and high potency antioxidants slow the progression of ALS when taken regularly. In some cases, high potency antioxidants can prevent ALS from occurring. The disadvantages of this approach is that it is historical data which is subject to recall bias and can sometimes be inaccurate. For 1000s of patients, it is very labor intensive and would take a very long time to analyze rather than just focusing upon a few of the key factors or key issues like vitamin E or riluzole. Babbie (2007) The Practice of Social Research 11th edition, Belmont, CA, Wadsworth Publishers, Inc. Eisen A, & C Krieger (1998) Amyotrophic Lateral Sclerosis : A Synthesis of Research and Clinical Practice, Cambridge, England, Cambridge University Press.