Inclined Therapy Study Tracking. Help needed with Content

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Inclined Therapy Study Tracking. Help needed with Content

Postby AndrewKFletcher » Mon Feb 22, 2010 6:43 am

The example format is open for suggestions, edits and updates from those using Inclined Therapy.
Each person using Inclined Therapy (I.T.) should start a new topic beginning with the title:
(Your Name / Alias) Inclined Therapy Progress Tracking Journal.
Note: Comments can be discussed by replying to the original post and answered using the normal forum thread reply.

The purpose of this thread is to get an easy to follow overview of General health and well-being, mobility, function, sensory loss and fatigue levels before I.T. Therapy commenced, followed by dated experiences of people with multiple sclerosis (ms) that are using I.T.
Our aim is to consolidate accurate, concise and focused reports, neatly organized without interruptions so that all results can be statistically evaluated.
Your FSS, MSIS, and/or EDSS scores, will help for Subjective and Objective statistical analysis of any results as well as number and severity of relapses (if applicable) will be very helpful and important for ease of data analysis.
This thread is to have One Initial Editable Post Per Person, each of which will be updated when new changes are observed using the "Edit" feature, adding new progress reports at the bottom of the post together with any test results, original CCSVI testing results, side of major IJV stenosis
(if applicable), side of most lesions as well as symptoms, experiences with the treatment and post-treatment medications, and perhaps most importantly, MS / CCSVI symptoms pre and post treatment.

Finally, if you could post MRI, MRV and other images / photographs, that would be very helpful to provide solid before and after evidence. http://photobucket.com/ is a hassle-free site for uploading and hosting images anonymously.

Comments and discussion will follow in the forum reply function. This way, the original post will be unaffected and should make very interesting reading that is easy to follow.

=======================================================
Name:_______________ (Or familiar alias)
Male/Female: (M/F)
Age:
Date(s) & type of neurological diagnosis (RRMS, SPMS, PPMS, CIS, or other):
Lesion locations (most affected side, if known), number of lesions

[Please use date format MM/DD/YYYY]

MS HISTORY AND BENCHMARK PRIOR TO INCLINED THERAPY

List all of your ailments. "Try to list every ache, pain, loss of sensation, loss of function or discomfort which troubles you and at what time of day it becomes worse. Expand wherever possible.


MY HEALTH HISTORY AND CURRENT PROBLEMS :--
Provide as much detail as possible in your own words at the start, in order to quantify any changes, which may occur during the study period.

Please copy and paste information from previous posts on http://www.thisisms.com/ftopict-8535.html or other forums and websites that you feel may provide us with your ms history.

Please include any of the following that relate to your particular circumstances and delete those which do not:
Pain, aches, lethargy, spasm, tremor, vision, feeling cold in bed, blood pressure, cold feet or hands, dreaming, morning paralysis, swollen limbs, blocked sinuses, Irritability, fidgety limbs in bed, ability to maintain body temperature, poor circulation, lethargy, depression, loss of movement in limbs, snoring, poor sleep, sleeping disorders, breathing difficulties,
poor quality, finger/toe nails, absence of half moons on nails, hair condition, varicose veins, leg ulcers, loss of skin sensitivity, taste, smell, problems with balance. liver spots, old scar tissue, sensory loss, headaches, pins and needles, night sweats, cramp, bladder control.
Night time bladder urgency, Urine infections, bowel function, spasm, memory loss, backache, mouth infections, ulcers, scoliosis, psoriasis, exzema any other not listed-----------

It would be very helpful if you could film a video diary, or take photographs of any leg ulcers, scars, finger/toe nails, swollen limbs, skin, hair conditions or varicose veins, as these conditions have already shown remarkable improvements in several participants. Video and Photographs
add weight to reports, giving credence and support to your journal

Saving nail clippings and hair samples, dated for later comparisons is a useful analysis tool. Saving urine samples prior to tilting the bed for comparison after I.T. in first week will prove useful for you to make a comparison and comment.

GENERAL GEOGRAPHICAL LOCATION:
It would be very useful if you could tell us about your everyday problems, how they affect your life and how and when they first started. I would also like to know where you lived, (Not the address)
a general area description from the time you first noticed your problems will suffice.
For example: River valley or low-lying coastal area, elevated hillside(height above sea level if known)
If you moved what type of area you moved to and if your condition improved or worsened.
What weather conditions aggravate or improve your problems? What is/was your job, did you work in a damp/humid environment, perhaps near a river or in a steamy kitchen, or on a ship or boat.
All of this information is vital.

Altitude:
Have you experienced any changes in your condition due to altitude, Perhaps during a trip to the top of a mountain or to the bottom of a ravine or valley?

MS treatments and results: Number of relapses in the first and second year before I.T. intervention:

EDSS before I.T. intervention (self-assessed or physician-assessed?):

To review EDSS rating, click the following link
http://www.mult-sclerosis.org/expandedd … scale.html
FSS before I.T. intervention:
To calculate FSS rating, click the following link:
http://www.mult-sclerosis.org/fatigueseverityscale.html
MSIS before I.T. intervention:
To calculate MSIS rating , click the following link: http://healingpowernow.com/msis.htm
Number of relapses since starting Inclined Therapy intervention:
Impact on your MS symptoms in words (include date in brackets if there have been multiple updates):
EDSS as of this update (self-assessed or physician-assessed?)
FSS as of this update:
MSIS as of this update:

Have you had testing for CCSVI blockage yet: (Y/N)
Have you undergone a stenosis procedure (Y/N)
If Applicable:
STENOSIS PROCEDURE HISTORY:
Date/location of testing/procedure:
Type of venographic study: (MRV, Doppler)
Diagnosis:
Type of procedures:
Procedures/drug related symptoms:
[Repeat this section if there have been more than one procedure]
Number of relapses since first CCSVI intervention:

Progress reporting:

At some point, ‘preferably after Four months’, during the study you may wish to revert back to horizontal rest in order to determine the differences.

Please record any comparisons that are observed.
REVERTING BACK TO FLAT JOURNAL TEXT

SLEPT FLAT ON (DD/MM/YYYY)-------UNTIL (DD/MM/YYYY)--------
AND FOUND THE FOLLWING DIFFERENCES:--
(Repeat Entry each time you revert back to flat)

*********************************************************************************
IMPORTANT: WHEN UPDATING PLEASE POST ONLY THE RELEVANT INFORMATION.
*********************************************************************************
PROGRESS REPORTING:

REMEMBER TO SAVE THIS FORM ON YOUR HARD DRIVE AS YOU EDIT IT EACH TIME AS THIS WILL BECOME YOUR OWN DIARY AND AN EXACT COPY OF THE INFORMATION YOU HAVE REPORTED: This way if the data is lost at either end, one of us will have a copy. "Computers and web forums do crash".

1st 7 day notes I.T. Tracking date:_ DD/MM/YYYY

Delete Example text:
28/12/2009: I am Sleeping Less Comfortably, I am feeling colder in bed, I have to get up more times during the night to visit the bathroom. I am experiencing ballance problems in the morning when I get out of bed.

31/12/2009: I am sleeping more comfortably, I am Feeling warmer in bed, I have not been getting out of bed so much in the night to visit the bathroom.






Update (2nd WEEK) I.T. Tracking date:_ DD/MM/YYYY








Update (Following 2 WEEKS) I.T. Tracking date:_ DD/MM/YYYY








Update (2 WEEKS) I.T. Tracking date:_ DD/MM/YYYY








Update (2 WEEKS) I.T. Tracking date:_ DD/MM/YYYY







Monthly Update (4 WEEKS) I.T. Tracking date:_ DD/MM/YYYY






Monthly Update (4 WEEKS) I.T. Tracking date:_ DD/MM/YYYY






Monthly Update (4 WEEKS) I.T. Tracking date:_ DD/MM/YYYY



Continue reporting using the same format, preferably once every month so that we can compare progress with other people sleeping Inclined.
Last edited by AndrewKFletcher on Mon Mar 01, 2010 4:38 am, edited 7 times in total.
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Working from the older form used in second pilot study

Postby AndrewKFletcher » Mon Feb 22, 2010 6:44 am

---------------------------------------------------------
ALL GOOD SCIENCE IS REPEATABLE
---------------------------------------------------------

2 successful pilot studies for people with ms have already been conducted. The first U.K. based study was independently assessed and a report was compiled, independently by John Simkins of the MSRC, (Multiple Sclerosis Resource Centre) MSRC, in Essex, UK. Titled Raised Bed Survey and can be found here:
http://s209.photobucket.com/albums/bb31 ... /?start=20

It would be very easy to dismiss this simple intervention.
Before you do, let me ask you one question.

Who told you that we should sleep on a flat bed and where is the science that supports flat bedrest as a healthy alternative to Inclined Therapy?

------------------------------------------------
The Study
------------------------------------------------

1. Please return regular updates of your observations, irrespective of whether you feel your report is relevant, or not.

2. We will be looking for patterns in atmospheric weather conditions.
Please add the weather conditions at the times you notice any significant changes. A brief note saying something like:( Sunny and dry, Sunny and wet, Humid, Very Humid, Misty, Foggy, Damp and cold, Warm and dry), will suffice.

3. Your experience using I.T. will be invaluable in helping to reach others. It would be very helpful if you would consider assiting me with my publicity campaign when you are convinced that this therapy works.

4. If you are taking part in other studies such as a CCSV surgical intervention, clinical drug trial, please make this known to me and to the people running the drug trial. Reason: The inclined bed and improved sitting posture could cause your data on such a trial to become scewed and invalid. However if you are taking drugs you are still able to join our study as most people inevitably take some form of medication.

------------------------------------------------------
HOW THIS THERAPY WORKS
------------------------------------------------------

Imagine pushing a car uphill on your own. When you stop, if there is no one there to help, the car begins to roll back down the hill. If someone is
there to put something under the wheel for you, then your efforts have not been wasted.

I believe that this therapy is that person with the wedge and that your
medical condition represents the car on the hill.

When you begin to feel some changes, no matter how small, you must use these changes to alter your life-style. Exercise these improvements by capitalising on them. Don’t lay down if you can sit, don’t sit if you can
stand, and don’t stand if you can walk. ”Use it or Lose it”.

But take it steady, a little and often is far more beneficial than overtaxing yourself. Remember that old saying, which someone quotes when you have fallen over in one of life’s trying playgrounds, “you should never run before you are can walk!”.
***************************************************************************

Thank you for agreeing to keep this record of any changes you may encounter while altering your sleeping and sitting posture. The information you collect will prove very important in my ongoing research. It will, I am sure, enable many people to follow in your footsteps. The information I have already collected has led me to include research into some very serious medical conditions, many of which are currently thought to be incurable.

polite note; “If you have difficulty typing please ask a friend to record your observations on the forum.” And please keep your diary record on your or their hard drive just incase the website is hacked. (Not uncommon)

Adapt your own bed

Inclined Therapy is achieved by raising the head end of the bed. Placing the head end on two 15cm or six inch blocks, Hooking the casters or legs over the blocks helps to stabilise the bed. If your bed is the type that joins in the centre you will need to support the join with two 3inch or 7.5 cm blocks. The casters at the foot end of the bed should be removed to give the correct slope and added stability. Check the height by measuring from the floor to the top of the mattress. If your bed is longer than a standard bed then you must adjust the height of the blocks accordingly. I have used free wooden off cuts from a timber yard or building site, Plastic Furniture Risers (Cone shaped) are useful for tilting beds away from home.

A ¾” plywood wedge placed under the mattress using 6 inch timber at top and 3 inch in the middle, or even folded blankets under the mattress will do the job, but be sure to recheck the angle as the blankets often compress and more should be added to make up the difference. Blocks should not be used to raise bunk beds, The plywood wedge method is best, as they become unstable using blocks or risers. Another method for beds with legs is to have strong plastic soil pipe from a builders merchants cut to the desired lengths.

Be patient and expect a little discomfort while gravity adjusts your body to the new posture. You may feel some discomfort in the spine and neck, this appears to be a threshold which has to be passed and is probably due to us developing a more upright posture. If you would like to help me in my ongoing research, or would simply like to monitor your own progress, see the (enclosed) diary entry form to record any changes in your health,


Image
15cm (6ins) block------------------------- 7.5cm (3ins) block----------------- Castors off bottom

SITTING PROPERLY

”Bottoms up”, is the title given to the correct sitting posture, by John
Simkins of the MSRC.
The ideal position ironically is that horrible slouching position which we
all find so comfortable, despite being advised that it is not correct by our
parents etc. Your bottom must be higher than your knees when viewed from the side. Adding extra pillows to your existing chair might be all that is required.

The worst kind of seating is a bucket type position. Ironically this
position is the best for keeping someone in their seat, (“In more ways than one”). It becomes enlightening to reason that the lousy sitting posture of the wheelchair might, according to my research, actually prevent someone from walking again.

Another enlightening observation occurred when spending long hours at the computer. As I don’t suffer from any kind of illness, I found it fascinating to develop numbness and pins and needles in my fingers, which on a couple of occasions lasted for two days. I realised what the problem was immediately, but continued to use the computer as before in order to study the effects. The remedy was simple. I raised my chair high enough to allow my hands and arms to slope downwards rather than up or even level. This has eliminated the problem.

Gravity causes circulation!. If allowed to run in an uninterrupted circuit
through the long head-to-toe tubes of the body, the circulation is assisted
by gravity It makes no difference if your limbs are not straight, so long as there is a drop from head to toe. It is my belief that if a persons body is aligned incorrectly, a pooling of concentrated liquids occurs.
E.g If a person is in a bucket type seat with knees above bottom,
concentrated liquids pool around the abdomen and bottom. This acts as a
brake on the circulation, which could result in tiredness.

Sitting posture adapted by any methods is entirely your own responsibility. Altering your posture while in a wheelchair could cause you problems. A safety belt or harness should be worn to prevent you from falling out.

We cannot and do not accept responsibility for any loss either by damage to property or injury, which you may feel, is due to altering your sitting posture.

*****************************************************************************

NAME:


Start of therapy: Date 00/00/2009


HEIGHT:

WEIGHT:

AGE:


*********************************************************************
List of known medical conditions. (If you have no objection, please upload or forward scans of old and recent medical or opticians reports, as these make sound evidence for any improvements in sight or other conditions.) Ask your Optician/Consultant to write to me. (OPTIONAL):
*****************************************************************************
MY MEDICAL CONDITIONS ARE LISTED AS FOLLOWS:--






*********************************************************************
MY CURRENT PROBLEMS ARE LISTED AS FOLLOWS:--




*********************************************************************
It would be very useful if you could tell me about your everyday problems, how they affect your life and how and when they first started. We would like to know where you lived (Genral Location, not address) at the time you first noticed your problems for example River valley or low-lying coastal area. And what type of area you moved to if your condition improved or worsened. What weather conditions aggravate or improve your problems? What is/was your job, did you work in a damp/humid environment, perhaps near a river or in a steamy kitchen, or on a ship or boat. All of this information is vital. Have you experienced any changes in your condition due to altitude, Perhaps during a trip to the top of a mountain or to the bottom of a ravine or valley?

The idea is to note down as much detail as possible at the start, in order to observe any changes which may occur during the study period. It would be very helpful if you could also keep a video diary or take photographs of any leg ulcers, scars, finger/toe nails, swollen limbs, skin, hair conditions or varicose veins, as these conditions have already shown remarkable improvements in several participants.


*********************************************************************
MY PARTICULAR CIRCUMSTANCES PRIOR TO INCLINED THERAPY ARE AS FOLLOWS:--





END OF STUDY FORM PART1
*********************************************************************
*********************************************************************


At some point, ‘preferably after Four months’, during the study you may wish to revert back to horizontal rest in order to determine the differences.

Please record any comparisons that are observed. Even if you record adverse reactions I would still like to here from you.
PLEASE INCLUDE THE FOLLOWING LINE IN YOUR EMAIL TEXT
*********************************************************************


SLEPT FLAT ON (DD/MM/YYYY)-------UNTIL (DD/MM/YYYY)--------
AND FOUND THE FOLLWING DIFFERENCES:--
(Repeat Entry each time you revert back to flat)





*********************************************************************
IMPORTANT: WHEN YOU SEND IN YOUR REGULAR UPDATES PLEASE SEND ONLY THE RELEVANT INFORMATION.
*********************************************************************
REPORTING EXAMPLE:

PART1

1st week notes diary entry dates:_

28/12/2009: I am Sleeping Less Comfortably, I am feeling colder in bed, I have to get up more times during the night to visit the bathroom. I am experiencing ballance problems in the morning when I get out of bed.

31/12/2009: I am sleeping more comfortably, I am Feeling warmer in bed, I have not been getting out of bed so much in the night to visit the bathroom.

*********************************************************************

REMEMBER TO SAVE THIS FORM ON YOUR HARD DRIVE AS YOU EDIT IT EACH TIME AS THIS WILL BECOME YOUR OWN DIARY AND AN EXACT COPY OF THE INFORMATION YOU HAVE REPORTED: This way if the data is lost at either end, one of us will have a copy. "Computers and web forums do crash".

1st 7 day notes I.T. Tracking date:_ DD/MM/YYYY








Update (2nd WEEK) I.T. Tracking date:_ DD/MM/YYYY








Update (Following 2 WEEKS) I.T. Tracking date:_ DD/MM/YYYY








Update (2 WEEKS) I.T. Tracking date:_ DD/MM/YYYY








Update (2 WEEKS) I.T. Tracking date:_ DD/MM/YYYY







Monthly Update (4 WEEKS) I.T. Tracking date:_ DD/MM/YYYY






Monthly Update (4 WEEKS) I.T. Tracking date:_ DD/MM/YYYY






Monthly Update (4 WEEKS) I.T. Tracking date:_ DD/MM/YYYY

So we can relate to what everyone has been saying about the dreaming being more frequent and lucid on I.T. and my wife and I have had many such amazing dreams.
A long time ago my wife said she was able to direct her dreams and take part in them.

Disclaimer

Please consult your doctor if you are at all concerned about trying this therapy Please feel free to discontinue as we cannot and do not accept responsibility for any loss either by damage to property or injury, which you may feel is due to sleeping with your bed raised. The responsibility for which rests entirely with you.

Please consult your doctor about taking part in this study. Please feel free to discontinue as we cannot and do not accept responsibility for any loss, resulting from this study. The responsibility for which rests entirely with you!
We are not, nor may we be, held responsible for the way that you choose to elevate your bed or change your sitting posture.
Whatever methods you choose, you and only you are entirely responsible.

The drawings are shown as a guideline only. Your bed may not be able to withstand being on an angle and could collapse.
Last edited by AndrewKFletcher on Wed Feb 24, 2010 9:58 am, edited 5 times in total.
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Comments / suggestions on these posts?

Postby AndrewKFletcher » Tue Feb 23, 2010 6:58 am

Did someone tidy up the reply post? I ask because last night it was driving me nuts trying to sort out the text.

Andrew
Find us on Facebook.com/InclinedBedTherapy
IBT website: http://inclinedbedtherapy.com
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Posts: 770
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Location: Paignton, Devon, UK


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