Umfrage - Bitte mitmachen !

[uheintz]

Für diejenigen, die des Englisch mächtig sind hätte ich hier einen Fragebogen von Jason, der normalerweise im ALS-TDI-forum aktiv ist.

Momentan ist er dabei ein neues "Regimen" zusammenzustellen, das Ernährungsempfehlungen, NE-mittel, Blutwerte und deren Korrektur etc. umfasst
und er wird dieses nach Fertigstellung auch der ALS-Gmeinde zur Verfügung stellen.

Um ihn dabei zu unterstützen bitte ich Euch sich etwas Zeit zu nehmen und ihm folgenden ausgefüllten Fragebogen, der anonym behandelt wird,
per Email zurückzuschicken:

Hello Everyone,

I have a really big favor to ask of you. Would please (as soon as possible) answer the following questions so I may get my protocol out to you all just as soon as possible?

You may copy the questions below, then paste them to a PM or email to me, (along with, of course, your answers following the questions).

Please be as detailed and accurate as possible. It is crucial in understanding my theory of ALS and my protocol which I have been working on for over a year now.

I need enough responses to confirm what I feel is going on before I will release it. So please, take the time to email ME ONLY (do not reply in the forum) your detailed answers after questions below (my email; jchexpress @ sbcglobal.net) - OHNE LEERZEICHEN !

Your answers (not that they contain any "too personal" questions anyway), will NOT be shared with ANYONE. They will only be used for research.

So, again, please be as detailed as possible when answering the questions.

Thank you;

1. How old were you when you received your ALS diagnosis?

2. Would you consider yourself a slow, average or fast progressing PALS?

3. Sporadic or Familial form or ALS?

4. What was your main occupation before diagnosis and was it mildly, moderately or highly stressful?

5. Was there a major stressful event anytime in the year before you were diagnosed with ALS?

6. Did you play sports while growing up and/or into adulthood? If so, what sports did you play?

7. Have you experienced any head injuries/concussions in your lifetime and if so, how many?

8. Have been clinically diagnosed with OCD, depression, anxiety, bipolar disorder and/or schizophrenia? Please list all that apply AND whether each was mild, moderate or severe.

9. BEFORE diagnosis, were you a smoker, drinker and/or drug user and if so, which ones and how much per day - please be honest - I myself suffer/suffered from anxiety, depression plus drug abuse in my early and later years.

10. BEFORE diagnosis, please list your top 5 favorite grocery store foods to eat (exclude fast foods and restaurant foods - but do include sweets if applicable). Think very hardly about this one as it is important to confirm a trend I am seeing with a particular food over the last year or so while researching and putting together my protocol.

11. BEFORE being diagnosed, how often did you eat fast food/restaurant food during a typical week?

12. Please think hard and list ALL your medical problems you were diagnosed with BEFORE your ALS diagnosis.

13. List ALL medications you were on BEFORE your ALS diagnosis?

14. Did you have a pet BEFORE your ALS diagnosis and if so what type, dog and/or cat?

15. Have you had any of the following BEFORE your ALS dx?
- shingles
- mono
- allergies
- gastrointestinal problems (please expand if you have suffered any gastro issues)

16. What's State did you live in growing up and at the time of diagnosis?

17. BEFORE your ALS diagnosis, were you normal weight, overweight or obese?

18. Were you married and did you have any children at the time of your ALS diagnosis?

19. Men, have you ever been diagnosed with low testosterone?

20. Were you an only child or do you have brother(s) and sister(s)?

21. Did you grow up in a home in which your mother and/or father smoked?

22. At the time of diagnosis, did you live in an apartment, condo, duplex or house? How old was the property (fairly new, average age, old age)?

23. BEFORE diagnosis, did you exercise and if so what did you do and for how long per day?

24. BEFORE diagnosis, did you have a lot of friends and family in your life, an average amount or hardly any at all?

25. Have you ever served in the military and if so, for how long?

26. Have you been around pesticides and chemicals much BEFORE diagnosis (ie... sprayed your own lawn, on the job, etc.)?

27. BEFORE diagnosis, had you ever been treated by a chiropractor for a length of time?

28. BEFORE diagnosis, what supplements (if any) did you take?

29. Please list your ALS regimen or all the supplements you are on as of today (including dosages per day).

30. Please list what your diet consists of now.


Thank you for taking the time to copy the above questions, paste them into an email to ME (Jason) ONLY, then answering after each question.

The data received from the above will be invaluable to not only support my theory and confirm my thoughts on my protocol, it will also be an excellent way to try and put pieces of this damn ALS puzzle together. I will try, if I have enough time, and share any trends I see emerge from the answers I receive from this survey (as Arthur suggested).

PLEASE take the time to respond to this questionnaire. Also, don't forget to copy and paste this questionnaire into ANY ALS related forum, blog, website, etc. (you can use my email address - just include the spaces to prevent spam - it will appear that way anyway if you copy and paste just the questionnaire).


VIELEN DANK !

Ich bin davon überzeugt, daß es uns allen zu Gute kommen wird - ich werde berichten.

Udo

[uheintz]

So, und hier sind die ersten Ergebnisse, leider auch nur auf Englisch:

Here is a summary of the questionnaires sent out to trial participants/PALS - DO NOT FORGET TO READ THE P.S.;


1. How long have you officially had ALS (go by what date you were officially diagnosed to calculate how long you've had it)?

Obviously, this answer varied from only a few months, up to seven years. There was one interesting trend with this question. 70% (or almost 70%) of participants stated the month of July or August as being a diagnosis month/date for their ALS.


2. Are you a SALS (sporadic) or FALS (family history)? Also, what type of ALS were you diagnosed with (limb, bulbar or other type - specify if other)?

I did have a couple FALS, but the majority (as usual) were SALS.

Most were limb onset, with the exception of a handful, who were bulbar onset (again standard).

3. Since diagnosis, do you feel your progression has been slow, average or fast (or a mixture - please explain if "a mixture" is your answer)?

I received more slows than anything else. Average followed. Then fast.

4. Please state your gender, race and age (optional, but very important for the trial if you're willing to share this info (which remains 100% confidential).

Almost all male, Caucasian, average age was 56 and a half.

5. Upon learning of your diagnosis, did you take any steps right away to try and combat the disease (ie... get blood tests done, research and start a supplement regimen, etc. - be specific please)?

Most started researching regimens before beginning one or they flat out started one (like Dave J's, etc.).

6. Are you currently on Riluzole? If so, would you be willing to stop the drug for this trial since the first objective will be to cleanse and heal our livers so they are ready for what we will be doing to try and boost Ceruloplasmin levels?

Most were NOT on Riluzole (although a few were on it).

7. Aside from Riluzole (if you are indeed on it), what other MEDICATION(S) are you on and for what reason (please put the reason next to the medication(s) you list keeping everything separated making it easy to read)?

INTERESTING TREND - Elavil (or amitriptyline) was the most prevalent medication PALS said they were on, but most said they took nothing in the form of medications.

8. What is you current SUPPLEMENT REGIMEN (please list each supplement you take, the dosage, when you take it and if you feel it has made an impact on your progression - please try to list each one separately so they don't run together making it hard to read)?

This one would be too hard too long to list. I can tell you that many ended up on Dave J's protocol, with the exception of a handful (they either were on nothing or their own made up cocktail of supplements).

9. Do you do anything else or have you ever done anything else other than what you have already listed to try and help slow or stop your ALS progression (please list each one separately - ie... sauna therapy, massage therapy, a specific exercise and how long, meditation, etc.)?

Most popular answers here were massage therapy, acupuncture, dietary changes, physical therapy, prayer and nothing.

10. Did you ever experience depression, anxiety, OCD, bipolar disorder and/or schizophrenia before you had ALS (please be specific as to which one(s) you had if you had one, two, three, four or all of the above)?

Almost all said no to this question (except for me and a few others), which surprised me a bit.

11. Have you had a lot of support from family and/or friends since your diagnosis of ALS?

The common answer here was a resounding yes.

12. Please list any other medical condition(s) you have ever had in the past or currently have along with your ALS (this information is completely confidential, is used for trial purposes only and will never be released/shared with anyone outside of me for this trial).


High Blood Pressure (most of any condition), Shingles, Psoriasis, High Cholesterol, Injury due to accident of some type, Epstein Barr Virus were all common answers.

13. Is there anything in particular, in which you can think of, that might have caused your ALS (ie... a stressful event prior to diagnosis, a certain drug or medication you may have been on, etc.)? If yes, please share everything you feel may have had a part in causing your ALS.

INTERESTING TREND - MOST PALS stated stress as the #1 thing they think triggered their ALS. Other answers were an accident of some type, previous drug use, fuel exposure (petroleum exposure) and Lyme Disease.

14a. Have you ever served in the military and if so what branch?

Only two served in the military (out of fifteen or so).

14b. What Country and State (or whatever the equivalent of "State" is where you are from) were you born in and what Country and State (same thing as before - whatever is equivalent to "State") do you currently reside in?

Only interesting trend here was that two participants were from Serbia (thought it odd out of fifteen or so that two were from Serbia - probably a coincidence).

15. Before diagnosis (or even now if you are still working), what was or is your primary profession/job? How long did you work in that industry? Do you feel your job was or is stressful?

MAJOR TREND - Out of 15, 3 were in IT and 2 were in construction (this does not seem like a lot, but remember, there were only 15 to start).

16. Are you married or have you ever been married? How many children do you currently have?

No trends. A good mix of married, married with children, and not married.

17. What type of diet would you classify yourself as having during the many years you DID NOT HAVE ALS (please be honest as lying won't help yourself or the trial)? The options are: Healthy (you ate healthy mostly), Average (you ate in moderation), Poor (you ate mostly junk food)?

There were many who said poor, but just as many who said healthy. So, who knows on this one.

18. Were you stressed about anything (job, loss of a loved one, any event, etc.) just before you got your initial symptoms and/or diagnosis of ALS? If yes, please elaborate on this question a bit.

Most popular answers; Work then Spouse/Relatives and Nothing.

19. Do you live in a house, condo or apartment?

No trends spotted here. A good mixture of houses, condos, townhouses and apartments.

20. When thinking of where you have lived the majority of your life (which particular house, condo or apartment), did that residence have any mold, radon, insects or other home related problems (please list each issue separately if so)?

None was the #1 answer followed by mold.

21. Have you had Shingles? If so, how far apart were they (in terms of time) from your ALS diagnosis?

Most stated they had never had Shingles.

22. What vaccines did you have PRIOR to being diagnosed with ALS (please list each separately if you can think of all of them)?


Every type you can imagine I saw listed. Polio, Pneumonia, Flu Shot, DPT, Hepatitis, etc.

23. Prior to diagnosis, did you practice religion/believe in a higher power or were you an atheist (one who doesn't believe in religion/a higher power)? This question, again, is optional but will help the trial when looking all the statistics of everyone in it with ALS. Your answer, as with all your answers, will remain confidential and will not be shared with anyone. Period.

No unusual trend spotted here. A mixture of the religious, agnostic and atheists.

24. Prior to diagnosis, did you exercise? If so, what type of exercise did you do, how much time did you spend each time you exercised, and how many times a week did you perform the exercise?

The ones who stated they did exercise, most stated it was high intensity. There were many who either walked their dog or just plain walked for exercise. Some did not exercise at all.

25. Have you ever been involved in an accident which involved an injury to the head? If so, how many times and how severe was each one?

Two PALS had two concussions each. One had a single concussion. The rest, none.

26. Did you play sports PRIOR to diagnosis and if so, which one(s) did you play? Did you ever suffer a concussion while playing any sport(s) you may have played? If so, how many concussions have you had (if you don't know then guesstimate)?

Basketball, Soccer, Tennis, Mountain Biking, Golf

Two PALS had two concussions each.

27. PRIOR to diagnosis, did your diet consist of a lot of (list each you consumed a lot of separately - please be 100% honest on this question):

MAJOR TREND - Lots of Junk! I didn't see many; "Apples, Oranges, Kale, Broccoli, Chicken, Fish and Distilled Water" answers.

28. Have you ever had any surgeries PRIOR to diagnosis? If yes, what were the surgeries for?

MAJOR TREND - As far as I could tell, everyone but one participant has had previous surgeries (usually multiple).

29. Do you suffer from allergies? Also, do you use HEPA approved air purifiers in your home?

[color=blue]The majority stated no here, surprisingly. Some had a few different allergies, but nothing that I could tell that stuck out.

Well, I am 12 minutes late. Sorry. I hope these will be of interest to everyone. They were to me while analyzing them all (especially the one about almost everyone having previous surgeries (multiple).

Jason