THE HEALERS Campaign ALS Scientific Research Study

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THE HEALERS Campaign ALS Scientific Research Study - ALS Health and Food Survey

Dr. Craig and The Healers organization’s mission is to expand medical research and wellness education beyond the limits of traditional practices. The Healers encourage and inspire people to take a leadership/healer role in their health/healing, even when utilizing various health professionals and healing resources.

Dr. Craig and The Healers are conducting a scientific research study about health and nutrition of people with ALS, aimed at the investigation of an innovative point of view. We cordially invite people with ALS to participate in this Internet-based research study, as their opinions and feedback are critical to the success of this research. The survey takes about 10 minutes to complete.

If you are a person with ALS, your participation would be really important for the research and for the improvement of the scientific knowledge.

At the end of the survey, you will have the option to insert your email, if you would like to be notified when the scientific research is published, and we will send you the results.

If you have further questions, you can contact us at
drcraigoster@comcast.net

We thank you in advance for your time and participation in completing this brief ALS survey to advance the scientific knowledge about people with ALS. We look forward to your participation!

Gratefully,
Dr. Craig Oster
Craig Oster, Ph.D.

What messages have you received from medical professionals in terms of dietary recommendations?

What messages have you received from the ALS Association and the Muscular Dystrophy Association organizations in terms of dietary recommendations?

What are your beliefs regarding the effects of a high sugar diet?

To what extent do you follow the ALS Association and the Muscular Dystrophy Association organizations dietary recommendations?

The ALS Association and the Muscular Dystrophy Association organizations dietary recommendations are known by nutritional science to be poor choices for the health of people, even though there are medical professionals who make the same recommendations for people with ALS. Could you make a comment to this sentence?

How often do you eat high sugar food, such as chocolate, ice creams, cookies, jams, candies, donuts, pastries, milkshakes, and so forth?

More than three times per day

Twice a day

Everyday

Three times a week

Once a week

Less than once a week

Clear selection

How often do you consume sugar-containing meal replacement formulas such as Ensure, Jevity, Pulmocare, and Boost?

More than three times per day

Twice a day

Everyday

Three times a week

Once a week

Less than once a week

Clear selection

To what extent do you follow the ALS organizations dietary recommendations, which includes suggestions of people with ALS adding calories to their diets with sugar, chocolate syrup, gravy, mayonnaise, and permitting almost anything that will add calories?

Are you able to swallow water without difficulty?

Yes

Other:

Clear selection

How many glasses of water do you estimate that you consume each day, on average?

Are you aware that research has suggested that 10% of people with ALS live 10 years or longer?

Yes

Other:

Clear selection

Are you aware that research has suggested that 5% of people with ALS live 20 years?

Yes

Other:

Clear selection

What month and year were you diagnosed with ALS?

Do you have hope that you could live 10 years or longer, regardless of whether an effective pharmaceutical treatment were to be discovered?

Yes

Other:

Clear selection

Is a limited money situation preventing you from practicing a healthier diet?

Yes

Other:

Clear selection

Do you believe that there is a relation between your dietary habits and the losses that you have experienced subsequent to ALS?

Yes

Other:

Clear selection

Are you aware that ALS researchers have found increasing evidence that inflammation accompanies the death of motor neurons in ALS?

Yes

Other:

Clear selection

Are you aware that research has demonstrated a relationship between sugar consumption and increased inflammation?

Yes

Other:

Clear selection

Do you believe that the health/strength of your immune system has a relationship with whether you develop a respiratory infection?

Yes

Other:

Clear selection

Do you believe that a strict nutrient-dense diet could enhance immune system functioning in people with ALS?

Yes

Other:

Clear selection

Are you aware of a research study linking consumption of sugar with weakened immune system functioning?

Yes

Other:

Clear selection

Do you believe that a high sugar consumption diet for people with ALS could contribute to fatigue and/or depression?

Yes

Other:

Clear selection

Do you believe that you are a heavier weight than is best for your health and wellness?

Yes

Other:

Clear selection

Does your medical professional believe that you are a heavier weight than is best for your health and wellness?

Yes

Other:

Clear selection

Do you choose to eat less healthy than you would like, because you are concerned about putting too much of a workload of the person(s) caring for you?

Yes

Other:

Clear selection

Which statement most accurately describes your current situation?

I don't have any difficulty eating enough calories to maintain my weight

I have some difficulty eating enough calories to maintain my weight

I have significant difficulty eating enough calories to maintain my weight

I have serious difficulty eating enough calories to maintain my weight

Other:

Clear selection

What statement most accurately reflects your current level of enjoyment/pleasure in eating?

Eating is a pleasurable activity for me

Eating is pleasurable for me, but some of the pleasure is taken away because of the effort involved

Eating is not pleasurable for me, although I do not have significant difficulty with eating

Eating is a frustrating experience for me and I view it as a task to be completed, without enough pleasure

Other:

Clear selection

Do you have difficulties with swallowing that prevent you from eating what you would really like?

Yes

Other:

Clear selection

Do you have difficulties with chewing that prevent you from eating what you would really like?

Yes

Other:

Clear selection

Do you blend/puree your food?

Yes

Other:

Clear selection

Do you use a feeding tube?

Yes (please ignore the next answer)

Other:

Clear selection

In case you do not use a feeding tube, would you be willing to use one, if your physician would come to suggest it in the future?

Yes

Other:

Clear selection

Do you believe that it is worthwhile to eat nutrient-dense calories with ALS in order to maintain weight?

Yes

Other:

Clear selection

Do you believe that there will be a cure for ALS in your lifetime?

Yes

Other:

Clear selection

Are you aware of the research that suggests maintaining weight is associated with greater longevity for people with ALS?

Yes

Other:

Clear selection

In a hypothetical situation: if research were to show that eating a strict diet without sugar and starches focused on nutrient-dense calories produced one year greater longevity in people with ALS, do you believe you would follow such a strict diet?

Yes

Other:

Clear selection

In a hypothetical situation: if research were to show that eating a strict diet without sugar and starches focused on nutrient-dense calories produced two or more years greater longevity in people with ALS, do you believe you would follow such a strict diet?

Yes

Other:

Clear selection

In a hypothetical situation: if research were to show that taking a newly discovered medication (with some uncomfortable side effects) produced one year greater longevity in people with als, do you believe that you would take the medication?

Yes

Other:

Clear selection

In a hypothetical situation: if research were to show that taking a newly discovered medication (with some uncomfortable side effects) produced two or more years greater longevity in people with ALS, do you believe that you would take the medication?

Yes

Other:

Clear selection

Are you currently taking the ALS prescription drug Riluzole?

Yes

Other:

Clear selection

Are you currently in, or have you ever been in, an ALS experimental drug trial?

Yes

Other:

Clear selection

If you have ever taken an ALS experimental drug: How long were you on the experimental drug?

If you have ever taken an ALS experimental drug: Did you improve on the drug?

If you have ever taken an ALS experimental drug: What are/were the side effects, if any?

What statement best describes the level of resentment that you feel about living with ALS?

I do not resent living with ALS

I mildly resent living with ALS

I moderately resent living with ALS

I strongly resent living with ALS

Clear selection

What statement do you guess best describes the level of resentment that your primary caregiver feels about living with ALS in their life?

They do not resent living with ALS in their life

They mildly resent living with ALS in their life

They moderately resent living with ALS in their life

They strongly resent living with ALS in their life

Clear selection

What statement most accurately describes your feelings in the last six months, regarding "hating" ALS?

I never feel hatred towards ALS

I occasionally feel hatred towards ALS

I often feel hatred towards ALS

I always feel hatred towards ALS

Other:

Clear selection

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