A Postural Connection With MS? Please Answer Poll Questions

A forum to discuss Chronic Cerebrospinal Venous Insufficiency and its relationship to Multiple Sclerosis.

When are you most likely to notice a significant relapse /new symptom (RRms) or general deterioration / worsening of symptoms /new symptom (PPms)

Morning after sitting too long (Sitting)
16
15%
During or After using a wheelchair (Sitting)
6
6%
During the night while sleeping / trying to sleep (Horizontal)
6
6%
During or after standing (Upright)
5
5%
At night while trying to get out of bed (Horizontal)
1
1%
After or during Walking (Upright)
11
10%
Following a journey while sitting (Sitting)
12
11%
In the morning on waking (Horizontal)
23
22%
In the evening while resting (Sitting)
8
8%
Rising from bed in the morning (Horizontal)
18
17%
 
Total votes : 106

50 Votes and we need 500 votes. Help Reach our target.

Postby AndrewKFletcher » Wed Feb 03, 2010 10:34 am

Rather a poor return for such an interesting poll?

So come on everyone please add your vote and help us reach our goal of 500 votes.

Already we can see some interesting stats developing.


We need your vote!

Andrew
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Urgent: More votes required people.

Postby AndrewKFletcher » Tue Feb 09, 2010 2:20 am

Bump

This is a serious poll intended to show how posture relates to both ms and CCSVI.

More votes required people.

I have been approached by the Multiple Sclerosis Resource Centre MSRC: and asked to write an article about posture ms, CCSVI and CVI or varicose veins. The connections are undeniable.

Judy Graham, the Editor of New Pathways is very interested in understanding this connection.

This poll should add considerable weight to the argument but we need those 500 votes.

So please if you can post a link to this thread on any ms forum you ar contributing to and ask for a vote from each of their members.

There are enough people here on Tims to get us very close to our goal of 500 votes.

The poll is conducted to help people understand how circulation works and how posture alters pressures inside the veins and arteries.

If you could add a few words about your reasoning behind your vote it would be helpful, but not a requirement.

Sincerely yours

Andrew
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Postby Algis » Tue Feb 09, 2010 3:07 am

Reason behind is that any relapse I got has been at the end of the day.
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Postby kc » Tue Feb 09, 2010 7:44 am

Keep Andrew and his inclined bed therapy on the CCSVI forum. If it was not on this forum, I woulI d have never heard about it. It is helping me.

I believe it has everything to do with CCSVI. It is something we can do while waiting for the Liberation Procedure.


I never in my life thought I would be able to sleep thru an entire night again, but have done so for many nights in a row after doing the inclined bed therapy for 2 months now.

Thank you Andrew for your tireless dedication to this subject.

kc :P
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Re: Bias in Survey

Postby berriesarenice » Tue Feb 09, 2010 8:45 am

Cece wrote:
MarkW wrote:Inclined bed theory should be a different topic from CCSVI on thisisMS.


Maybe a poll could be set up asking if Inclined Bed Therapy should stay in this forum or be elsewhere, as was done for chelation recently?

Cece


I am not against inclined beds (I have my own propped up w/ blocks), but I'm here to read about CCSVI really. One IBT thread seems like enough to navigate past.
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Postby JoyIsMyStrength » Thu Feb 11, 2010 4:33 pm

Andrew I chose "after walking" but upon rising in the morning or after prolonged sitting and fighting miserable spasticity -- these are close second and third place winners. I am trying IBT, nothing to report yet but it's still early days.

Pam
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67 votes need 500 for MS Posture Poll

Postby AndrewKFletcher » Fri Feb 12, 2010 1:58 am

JoyIsMyStrength wrote:Andrew I chose "after walking" but upon rising in the morning or after prolonged sitting and fighting miserable spasticity -- these are close second and third place winners. I am trying IBT, nothing to report yet but it's still early days.

Pam


Pam, thanks for adding a comment, it helps to keep the poll momentum going so we can stimulate more votes. Your explanaton is helpful too and shows people are voting after careful consideration.

Andrew
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Postby Salvatore24 » Sat Feb 13, 2010 4:18 am

I find my symptoms worse after waking, and they worsen if I am sitting for a long period of time. When i'm standing & on my feet all day, I have less symptoms, but my feet are tired by days end.
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Postby AndrewKFletcher » Sat Feb 13, 2010 12:55 pm

Salvatore24

Thanks for voting and thanks a lot for adding your thoughts to your vote.

Andrew
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Postby zinamaria » Mon Feb 15, 2010 11:55 am

Hi Andrew,

Haven't been able to read all that is on this thread yet, but am making my way through it as I find this all so fascinating!

I voted and then it occurred to me. can't believe it hit me so late, but I thought this might interest you. Last year I experienced the worst relapse yet in my 12 plus years with RR. Early in the year I had been painting using oils and so used turpentine, which is a nasty solvent. I did not have proper ventilation, I think I poisoned myself, and had a relapse, not so mild but not so strong and in a month or so after I stopped painting for awhile started to recover. During that time I either stood or sat in front of my easel, about 50/50, but when painting not really paying attention to HOW I was sitting or standing. So I have assumed the turpentine inhalation played a large role in the relapse.

But I was preparing for an exhibit in July so I had to keep working, although I quit with the turpentine. Anyhow I ended up sitting a lot on the floor instead of a chair for I abandoned the easel in favor of the floor. The weather was getting warmer so I worked outside on the pavement on our balcony, always in some cramped, either cross-legged or strange sitting position while I worked, on my knees etc. My husband several times mentioned my posture and asked me if I wouldn't be more comfortable in a chair, but I said no, because painting is a very physical act for me, sort of getting my whole body into it.

I worked intensely like this for at least two to three months, and just kept stretching when I was done working. It was stupid to work this way but I was in the grip of something larger than me and ignored how sore I would get because I always just thought, well, I'll just stretch.
After my show at the end of July, in August I started to symptomize again, and then there was an increase of symptoms in to a full blown attack that lasted about 4 months and I am still recovering, although doing much better. But it was sever: impaired walking, talking, and seeing.

When I saw this link on posture I put this together, not ever having considered posture as related to CCSVI, although I have a strong yoga practice and am always working on alignment, because I have had bad posture my entire life....was a waitress for many years which really killed me in the shoulders and neck, all the way until 1998-2002 when I owned a restaurant and so was always on my feet, same bad posture, lots of standing etc.

But I am more sore and have difficulty after sitting for long periods of time and so end up on the floor every day on my yoga mat stretching and breathing deeply and working on alignment.

I thought this testimonial might be helpful to you in some way, and perhaps you could give me some insight on this.

By the way, I have been sleeping on an inclined bed now for three months and get very solid sleep. My husband loves the incline as well, even though he does not have MS, he swears he gets better rest. He has always been an insomniac, where I am a 'good' sleeper as they say, I can sleep almost anywhere, anytime. But I think I get deeper sleep with the inclined bed.

Thank you for all the hard work you do. This is so helpful! reading about the importance of posture, which my husband has been helping me with for many years. But old habits are hard to break.

peace,
zina
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Posture connection with multiple sclerosis

Postby AndrewKFletcher » Mon Feb 15, 2010 1:24 pm

Hi Zina

Guess you worked it out for yourself that the turpentine probably had little if anything to do with your relapse and that posture was the key to the downturn in your condition. Sitting for too long can prove disastrous and only recently has there begun to be some focused publications on this subject, some of which I posted in the thread.

The main thing to remember is to avoid sitting for too long and make a concerted effort to move around whenever possible.

If we have to sit, then adapt the inclined sitting posture, raising the seat above the knees, so we have the body aligned much the same as the inclined bed.

If we have to stand in one position, make a conscious promise to yourself to keep shifting the weight from one foot to the other, this can be done without drawing any attention to yourself. Guards practice this method to avoid feinting.

You are reaching the 4 months milestone for recovery using I.T. of Inclined Therapy soon. This is an important period of I.T. in both ms and spinal cord injury.

You are very welcome and wish I could do more.

Andrew
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Postby zinamaria » Mon Feb 15, 2010 4:31 pm

Dear Andrew,

First, thanks for your terrific work. I am Zina's husband, Zarr, and I have a couple of questions for you. I teach and practice yoga, or what I have codified as MOGA, which is a combination of yoga and qigong. There are many inversions in yoga, as you surly know. What do you think the effect is of inversions on CCSVI? The theory in yoga, at least regarding "healthy" people--a relative term, of course--is that after an inversion more blood is shunted into the area. But if inclining the bed up at the head helps circulation, wouldn't an inversion in the opposite direction disrupt circulation? That's the first question. The next question has to do with sitting for long periods of time in a cross-legged or even in full or half-lotus positions. I write for long periods of time at my computer and find that my back is most straight when I am in a cross-legged position. But my knees are not below my waist in that position. My hips are fairly wide open, so the knees are not so high, nevertheless the position does not fit the criteria for your sloped sitting position. What is your opinion on a cross-legged sitting position? Last question. There is a breathing technique in yoga called Ujaii. It means power-breath or forced-breath, depending on how one twists the Sanskrit. But it is somewhat loud, somewhat vibrational in the glottis, and deep and extended. Do you think that this kind of breathing, which is recommended continuously during yoga practice, could have a beneficial effect on CCSVI.

I am grateful for your time, and grateful for your work. I am watching Zina closely, and it may be that the inclined bed is helping. I shall keep you posted. In the meantime I await eagerly your response.

Zarr
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Questions about posture

Postby AndrewKFletcher » Tue Feb 16, 2010 9:07 am

Hello Zarr

Yoga and the Alexander Technique have their own merits and it is not for me to say they may be in need of some refinements now that we understand circulation a little better.

Your point about shifting blood due to posture is incorrect, yet is often suggested by doctors and nurses who should know better.

I have said it before, circulation is called circulation because it is circular, so we can either make it go faster or slow it down and in unfortunate circumstances it stops altogether. Blood does not rush to your feet or indeed your head, but we do experience pressure changes as a result of changing posture.

When blood is said to pool around the ankles, what they really mean is that the pressure changes inside the veins increasing to the point where fluid passes from the veins into the surrounding tissue. Varicose veins bulge and again this is said to be pooling of the blood, but really it is an increased pressure that changes the diameter of the vessels. Blood does not pool it circulates. In injuries there is an obvious swelling from damaged blood vessels but again this is because the circulation has been compromised by an impact to the muscle and skin.

Inversion again does not shift blood to the brain, it changes the circulation. Gravity can still act upon density differences in fluids in the inverted position but in this case it would cause a reflux in the opposite direction. Experiments with clear plastic tubing can demonstrate this easily using a little food colouring an salt. We can see two directional flow using this experiment and indeed have done so on many occasions.

The heart obviously plays a major roll in blood circulation, but postural changes can be observed to alter the pressure inside the vessels and I believe that the location of tiny pulses of concentrated salts in the fluids plays a very important roll in maintaining the circulation and when posture is correctly aligned with the direction of gravity (inclined therapy) these salts migrate to the kidneys more effectively.

Inversion head down feet raised 6 inches cause my wife and I to develop diarrhoea, rapid weight loss, head aches, dizzy spells, feeling cold in bed, and most of all we produced near water density urine, almost colourless, which means those salts that should have been pulled from the body into the urine were still in the body.

The breathing exercise would prove very useful on an inclined bed. This power breathing (exhaling forcefully?) is something boxers and martial arts use to increase the power of punches and kicks. I believe this generates a greater release of solutes into the arterial flow on exhaling and would increase the hydraulic pressure in the blood affording a burst of increased power. The same applies with using the back of the hand as a whip, clenching the fist at the point of impact, this would also influence the solute pressure adding a much greater impact than a normal punch. I tried this at home as a teenager on an imitation leather look settee. To my horror and mum n dads, resulting in me getting thrown out for 6 months, the soft plastic fabric on the back of the settee shattered. This was odd because my brother and I could punch the same settee until exhausted without so much as a mark left. This hole was around 12 inches in diameter and the material snapped rather than tore. I mention this because you have an interest in martial arts.

What this will do for CCSVI we can only guess. I do not have facilities to investigate this further

Sitting cross legged (lotus position) according to the published papers on first page of this thread could interrupt the circulation. Not sure that this is a wise move and have tried it myself, finding it very uncomfortable. Better to keep mobile and never lay down or sit down when we can stand and walk and if we do sit make sure our seat is higher than our knees. Putting our feet up as advised by the medical profession is without scientific reason or validation.

Andrew
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81 votes need 500 for MS Posture Poll

Postby AndrewKFletcher » Sat Feb 27, 2010 3:11 pm

Come on people we need more votes on the posture poll

We are a long way off the 500 we need and every one of your votes is important!
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Removing Pillows Speeds Up Deaths Of Terminally Ill Patients

Postby AndrewKFletcher » Tue Mar 02, 2010 10:38 am

The practice of laying a person flat to speed up their death is an unwritten practice that goes on in hospitals and at the homes of people who are terminally ill.
I have observed this practice while at the bedside of a lady suffering with advanced stage cancer.

Jewish Ethical and Legal Sources on the Treatment of Terminally Ill Patients; and, Jewish Medical Ethics: An Outline of Principles
Source: http://www.aishdas.org/rygb/medical.htm

Rabbi Yehoshua Boaz (16th century)6 records a disagreement he had with his teachers as to the extent to which one may change circumstances that impede the demise of a dying patient. The conclusions of this discussion are codified by his contemporary, Rabbi Moshe Isserles, in his glosses on Rabbi Yosef Karo's definitive code, Shulchan Aruch7: "It is forbidden to cause a dying person to expire more hastily, i.e., if one is dying slowly, it is forbidden to remove pillows and mattresses from underneath him.

or grains of salt placed on the dying man's tongue... may be removed. This removal is not active hastening of death, but rather the removal of an impediment."
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