In order of relevance
Undertaking a Self-Conducted
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My original reason for formalising a study into the possible effects of antioxidants and other medications and supplements on the progress of ALS/MND was to enable it to be accepted by funded clinical researchers in order to (hopefully) provoke a full scale clinical study in to the effects of antioxidant and other readily available compounds on the progress of ALS/MND. Click here to see my personal Clinical Study.
If you wish to conduct a study to compare notes and present a more compelling case to researchers you will need to follow accepted scientific protocol. Put simply, you will need to keep a daily check list and gather the following information :
What is your physical condition BEFORE taking the supplements/medications you have selected and what is your physical condition AFTER taking the supplements/medications for one year?
You will need a "base level" physical assessment of your condition before taking the supplements of your choice. To satisfy scientific protocol you will need to obtain a complete physical assessment by your GP, a range of movement and overall assessment from a physiotherapist may be helpful (but is not strictly required) and an assessment of your condition by your neurologist, which includes an opinion as to the rate of progress of your ALS/MND.
Your neurologist may wish to conduct an EMG study if you have not had one for some time. All of these assessments should be scheduled to occur in the same week if possible. I would suggest that you make an appointment with your neurologist first as there is generally a waiting period involved. When you have an appointment date with you neurologist, make appointments in advance with a physiotherapist and your GP for the same week.
You will need to see the same Neurologist, GP and Physiotherapist after taking the supplements/medications for one year. Remember to make your neurologist appointment well before you finish your supply of supplements/medications! Ideally, you should have the same three assessments within a week of finishing your supplements/medications.
You will need a check list to assess how you are progressing from day to day. This check list will need to be completed for a full month BEFORE you start taking your supplements/medications. This month without supplements/medications will provide your base level condition prior to taking them for one year.
If you are already taking one or more supplements/medications you will need to stop taking it for this "base level" period - and preferably for a week or two before completing this first monthly checklist. (Do not discontinue prescription medications without first discussing it with your doctor. If you cannot discontinue certain medications they must become part of your "base level" calculations).
I also listed all the ways in which ALS/MND had effected me prior to my study, including Muscles Affected (listing all muscles effected at start of study and how badly they had deteriorated). Fasciculating (twitching) muscles - listing all muscles effected at start of study and how severe the fasciculations were in general.
You may need to write it in the form of a brief "diary" entry. It would be a good idea to make a similar entry at the end of each month from any notes you may have made from day to day. I date and jot down comments on the back of my checklist. If you are entering the info directly into a computer have a special page or space on every checklist page to allow for this. As long as the information is recorded accurately and daily you can choose the way that suits you best - just remember to be consistent. If you keep your records on a computer, make regular backups!
Designing Your Personal Daily Checklist
Individual checklists will vary according to how ALS/MND is affecting you. Your checklist may look significantly different to mine. For example, my primary symptoms included fasciculations and cramping in legs, arms, chest, shoulders and neck. I have no swallowing difficulties and would therefore not include swallowing difficulty, speech difficulty, breathing difficulty, etc. on my check list. What I would include are the following:
Fasciculation frequency (Rate from 1-10, never to always)
Fasciculation intensity (Rate from 1-10, nil to extreme)
Fasciculations new (Rate, name and date new muscles effected)
Muscle cramping (Rate from 1-10, nil to extreme)
Muscle cramping frequency (Rate from 1-10, never to always)
Muscle cramping new (Rate, name and date any new muscles effected)
And so on - according to YOUR symptoms.
I have included a check box each for depression (which can include anxiety and stress), general health (for when I'm "under the weather", etc. but not actually suffering from an illness) and Wellbeing. I believe mood, positivity and other mental attitudes can affect physical health. The monthly charts I have completed tend to bear this out. I definitely scored worse in most categories on days when my "depression/stress" and "wellbeing" scores were poor.
Make a simple chart with the symptoms listed in a left hand column and the day/date in a series of vertical columns to the right (as shown below).
In the boxes created on this chart you would merely enter a digit rating your personal one to ten assessment for that day and that symptom. Leave additional space at the bottom of each column and add up the numbers for each day. At the end of a month add up the totals below each column and you will have a numerical rating for that month.
Each person's monthly list may include symptoms you do not have, ratings for affected categories, frequency, intensity and progress. There should be space at the bottom, or on the back, of each page to note and date such things as changes of medication, other illnesses (eg. colds & flu), falls, traumas or events that could affect the way you feel on a particular day or for a particular period.
A word about 1 -10 assessment scores. Rather than use 0 - 9 I have used 1 - 10 because it's easier to quickly calculate percentages, etc. That means my minimum score of 1 means nil or good, nothing, not affected. The lower the score the better. A score of 10 means I am totally incapacitated and incapable of functioning without assistance. A score of 5 is neatly halfway along the 1-10 scale, which I prefer.
For example, some people with migraine headaches can sometimes cope and may rate the headache as 5 (painful but bearable) or 8 (barely able to function). At other times they are confined to bed, curtains drawn, unable to eat or move or even think normally - that would score a 10. Days with no headache at all would score 1 - indicating no headache, feeling good and zero/nil negative effects from headache that day. A good day. These are subjective scores so be as honest and consistent as possible.
With any luck, after a year you will find from month to month that there is a decrease or little change in the total numerical rating for the month. This would imply that your condition has stabilised. Noting illnesses, etc. may account for any anomalies (unusually high scores) in any given month and can be taken in to account at the end of the year.
Armed with your base level plus your 12 monthly check lists and your daily and monthly numerical ratings you should be able to assess whether you consider your condition has stabilised, improved or worsened.
As some months have 30 rather than 31 days I found it easier to work to a thirty day month (isn't February a nuisance?). This would mean that once you have established an "average day" for that month you would delete that daily score from a 31 day month.
Depending on when you start, February will need to be "adjusted" to thirty days by stealing a day from the end of January and a day from the beginning of March. This saves you from subtracting your "spare" day from January and March. There are other ways to calculate this and, if you have training in statistics or other disciplins, you may wish to use another method. It will not matter much as long as the method you use is consistent and suits your purpose.
Atypical or "trauma" days caused by accident, illness or extreme stress could significantly skew your monthly total and should be carefully noted. If the trauma only affects two or three days it should be acceptable to note the circumstance and substitute an "average day" score for those days. If the "trauma" extends over a longer period, using averages could be misleading and the best that can be achieved in that month would be to make a special and detailed explanation of the figures for that period.
The ALS Functional Rating Scale
The ALS Functional Rating Scale is an instrument for patients to use in self-assessment. You may wish to establish your base level status by initially using the assessment system below and add other personal symptoms as outlined above. Note that there are five separate ratings for each category. This means you will need to improvise to rate out of ten and use the above charting system. For example convert "SPEECH" below to: 1-2 Normal to nearly normal 3-4 Detectable to fairly obvious 4-5 Intelligible with some or frequent reapeating 6-8 Speech combined with non vocal communication 9-10 Loss of useful speech... and so on. The ALS Functional Rating Scale to measure disease status is included below for your convenience.
ALS FUNCTIONAL RATING SCALE (ALSFRS), developed by Dr. Benjamin Brooks and associates at the University of Wisconsin, Madison. This scale is statistically reliable and has been used in recent clinical trials (CNTF and BDNF). Individual patients may use it to track their status. It is also reported on the C.A.R.E. data collection effort.
SPEECH - 4 Normal speech processes. 3 Detectable speech disturbance. 2 Intelligible with repeating. 1 Speech combined with nonvocal communication. 0 Loss of useful speech
SALIVATION - 4 Normal. 3 Slight but definite excess of saliva in mouth, may have night time drooling. 2 Moderately excessive saliva; may have minimal drooling. 1 Marked excess of saliva with some drooling. 0 Marked drooling; requires constant tissue
SWALLOWING - 4 Normal. 3 Early eating problems--occasional choking. 2 Dietary consistency changes. 1 Needs supplementary tube feeding. 0 NPO (exclusively parenteral or enteral feeding)
HANDWRITING (with dominant hand prior to ALS) - 4 Normal. 3 Slow or sloppy; all words are legible. 2 Not all words are legible. 1 Able to grip pen but unable to write. 0 Unable to grip pen
CUTTING FOODHANDLING UTENSILS (w/o gastrostomy) - 4 Normal. 3 Somewhat slow and clumsy; no help needed. 2 Can cut most foods, slow and clumsy, some help needed. 1 Food must be cut by others, can still feed slowly. 0 Must be fed
CUTTING FOODHANDLING UTENSILS (with gastrostomy) - 4 Normal. 3 Clumsy but can perform all manipulations. 2 Can cut most foods, clumsy and slow, help needed. 1 Provides minimal assistance to caregiver. 0 Unable to perform any aspect of task
DRESSING & HYGIENE - 4 Normal function. 3 Independent and complete self-care with effort or decreased efficiency. 2 Intermittent assistance or substitute methods. 1 Needs attendant for self-care. 0 Total dependence
TURNING IN BED AND ADJUSTING BEDCLOTHES - 4 Normal. 3 Somewhat slow and clumsy; no help needed. 2 Can turn alone or adjust sheets, but with great difficulty. 1 Can initiate, but not turn or adjust sheets alone. 0 Helpless
WALKING - 4 Normal. 3 Early ambulation difficulties. 2 Walks with assistance (any device, including AFOs). 1 Nonambulatory functional movement only. 0 No purposeful leg movement
CLIMBING STAIRS - 4 Normal. 3 Slow. 2 Mild unsteadiness or fatigue. 1 Needs assistance (including handrail). O Cannot do
BREATHING - 4 Normal. 3 Shortness of breath with minimal exertion. 2 shortness of breath at rest. 1 Intermittent (e.g. ventilatory assistance). O Ventilator dependent.
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