Inclined Bed Therapy

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

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Postby AndrewKFletcher » Fri Dec 11, 2009 1:18 am

happy_canuck wrote:We have been on the incline 10 days now.

Blood pressure (day 5) 107/71
Blood pressure (day 8) 108/74

I take Avapro nightly for high blood pressure. These readings are lower than I remember from my pre-incline levels.

Like Erika, my back has been worse upon waking the past 3 days. I fractured my back (at T12) 3 years ago and the pain in my back is in the same area. I have increased vit D to 5,000 to see if it helps my back.

I have also had quite a few long stretches of wakefulness after falling asleep for the past few days. Falling asleep is not a problem, but it certainly was in my pre-incline days.

Last night I tried to keep my arms down and was mostly successful. No differences in sensation today.

Interesting research we are all doing!

~ Sandra


Thanks Sandra

Do you have BP measurements frombefore the bed was tilted? There may be some in the monitors memory?

Back / spinal injuries is where this therapy cannot be refuted, there is no relapsing remitting stage in a sci.

Neuropathic pain, including ms pain over time will respond to I.T. Many people reported that whereas before they tilted their bed their pain would increase at night as they lay down flat, causing a very uncomfortable night sleep.

Yet when the bed was tilted they reported the opposite and as you know MS pain does not respond to drugs well.

Glad you find the research interesting, I have found it truly fascinating and given my time over again would have done exactly the same, though at times it has been like a curse trying to convince the medical profession scientists government, NHS, and fighting the charities.

But it is a learning curve. Pitty I had not realised earlier that it only matters to the people who need it, not the people who would rather maintain their high earning jobs at all cost.

But then the Internet was not anything like it is today.

Viva La Internet.
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Postby markofc » Fri Dec 11, 2009 2:00 am

Sleep on back or sleep on flank is better?

/thank for answer

~markofc
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Postby AndrewKFletcher » Fri Dec 11, 2009 2:08 am

markofc wrote:Sleep on back or sleep on flank is better?

/thank for answer

~markofc


Better to alternate between each side and back but it is the angle that is important.

Andrew
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Postby markofc » Fri Dec 11, 2009 2:31 am

thanks Andrew

I know the angle be so important

Has to be pillow under my head or flatly??


/markofc
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Pillow or no Pillow using Inclined Bed Therapy

Postby AndrewKFletcher » Fri Dec 11, 2009 2:49 am

Either will do just fine. Pillow may help prevent neck ache which is to be expected along with a stiff neck developing for a few weeks.

But a pillow will help with this problem when sleeping on the side as it will keep the head alined with the spinal column.
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Postby crocky » Fri Dec 11, 2009 2:35 pm

Hi Andrew
I'm a newbie on this site who has been lurking in the background.
I'm very interested in your research, so much so that we inclined our bed by 6 inches last night - no discomfort, no change yet, but 1 night is probably a tad early to expect anything!
I am rrms - worst symptom, severe fatigue - I am hoping to see dr Simka sometime next year, but in the meantime am very happy to try out the inclined bed therapy.
I can only thank you for your imput on this theory - will be more vocal on changes/lack or them etc over the coming weeks.
Stay well as possible - all the best, Suzanne
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Me too!

Postby judipom » Fri Dec 11, 2009 5:45 pm

:lol: Hi Andrew--I am also new to this site. I (thank god) was able to get a friend to elevate my bed 6 inches yesterday. I've been in a significant relapse since Thanksgiving which seemed to peak on Saturday with severe vertigo, leaden legs, facial and hand numbness--which kept me bedridden for 5 days. Luckily, I had found this site and been reading about CCSVI and the vein connection (which made sense to me). Yesterday I saw an acupuncturist who worked on opening my neck veins, and I had my bed inclined. I am doing remarkably better today--my legs aren't heavy, vertigo gone, numbness vague. I also need to add that my symptoms come and go with the weather particularly the barometric pressure. We have been in a low pressure system quite some time peaking on Saturday with heavy clouds and drizzle. On Tuesday evening I woke in the middle of the night to a violent rain and thunder storm--I sat up in bed, noticed my head was clear and thought "I'm going to be all right." At the acupunturist's I also got a treatment for barometric pressure.

Because I have used many modalities at once--I can't definitely attribute my recovery to one thing--I do know that last night, my first on the inclined bed, my legs didn't throb with pain as they have been (since I was laid up lying flat for almost a week). I am so thankful for your work. Now, lying flat seems ridiculous to me. Judi
ps. I do have a brother who is paralyzed at T12 so I am interested in your work with spinal chord injury.
RRMS Diagnosed 1997
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Postby Johnson » Sat Dec 12, 2009 1:38 am

Judi, I am so sorry about your brother. It just reminds me of how lucky I really am... Sure there is a third of my life lost to "MS", but I have always had a lot of hope, and now, we all have so much more.

Here is hoping that "they" can work something out for your brother and his cohort, with stem cell therapy, or nano-technology, or such.
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Spinal cord Injury using Inclined Therapy

Postby AndrewKFletcher » Sat Dec 12, 2009 4:08 am

To Judipom

Reports from the first people with spinal cord injury to try Inclined Therapy.

More can be found on the Carecure forum:


Spinal Cord Injury

On Saturday April 15th 2000, John obtained the timber for parallel bars to be erected at his home in Cornwall, On Sunday I went to John's home and completed the job, for tomorrow was to be a momentous occasion indeed.

John was left paralysed, in 1990, when surgery to his spine went wrong. He was told that after two years any chance of further recovery would be highly unlikely and for the next six years he experienced little if any change in his condition.

Monday morning I am on my way to John's home in Cornwall, to meet with Tim Iredale, who is a news reporter for Carlton Television Southwest. We intended to witness something truly magical. But could not have imagined what was in store for us.

John was about walk in front of a television camera and crew for the first time in close to ten years. John had told me that he had regained the ability to move his legs, but I had grossly underestimated how much function John had regained.

During the interview, John was asked to show how he manages to get out of bed now and he transferred with ease both in and out of bed, leaning back and lifting his legs. He was then asked to raise his legs while lying on the bed and he obliged with ease. When asked if he could feel when touched on his legs, he replied my legs feel like normal legs instead of heavy weights. John then went on to explain how much of the swelling in his legs had gone-and that this flies in the face of the current act of elevating the legs above the heart. Advise from the medical profession, which John duly ignored in favour of sleeping with his legs down.

Fortunately for John this meant that he could now wear ankle braces and special shoes, which would, provided support for his substantially weakened and as yet unresponsive ankles.

John approached the parallel bars in his wheel chair and applied the brakes when he was in position. He grasped the two ends of the parallel bars and using his legs he pushed himself into a vertical position. Towering some six feet four inches, John moved one leg in front of the other, bending the knees as he lifted each leg to walk 12 feet to the end of the bars. I turned and looked at Tim and saw disbelief and astonishment flash across his face, I bet my face was a sight to behold too. John then turned his powerful 19 stone body around and walked, yes walked back to his chair. Struggling and somewhat weakened by the experience, he lowered his body into the chair and his face had the expression of a boxer who had just knocked down his opponent. He said casually: 'Was that alright'? John had indeed delivered a powerful blow to his opponent.
Fortunately heavy rain prevented us from doing a retake and the rest of the interview took place in John's bedroom.

When the story was finished and everyone was ready to leave, I turned and thanked the camera man and Tim Iredale, who turned and said that this is one of those days that you will always remember, one of those days when you know exactly what you were doing.

The cameraman said while shaking my hand that: ' it has been a privilege to work with me and witness the results from such a simple application'.

I drove home the richest man alive that day and will remember it for the rest of my days.

On Monday the 17th April 2000 I waited for the local news on Carlton TV and saw the opening news which pictured me looking down my Naturesway Sleep System, a simple bed designed for to take us into the new millennium. After the interlude the fun really started. John was walking for everyone in the South West of England to see, at least. The news stayed focused on the remarkable effects of two eight-inch blocks tucked under the head end of John's bed. No $billion research, no waiting for the next ten years to see if it works and no room for any refutation of the results, which were plain for everyone to see on Carlton Television, News, Language Science Park, Plympton, Plymouth, Devon, UK. But John is not the only person with a spinal cord injury, who is benefiting from the effects of gravity, in fact there are two more people in the Torbay Area of Devon who are making steady progress.

Sunday Independent April 16th,2000 page 4 Burrington Way, Plymouth PL5 3LN UK

Heading: RAISING HIS BED TOWARDS THE SKIES, BY ANTHONY ABBOTT.

WHEELCHAIR-BOUND Julian Boustead is taking to the skies for a parachute jump to raise awareness about a simple bed treatment that's given him a new lease of life.
The 37 year old - who was left paralysed after breaking his neck during a charity assault course run. Struggling to get out of bed in the morning and always felt the cold until he took the simple step of raising the head of his bed on blocks of wood by a matter of inches. Julian, who lives near Torquay, has urged everyone to try the Naturesway Sleep System, Pioneered by West-Country Inventor Andrew Fletcher, and first revealed in the Sunday Independent nearly three years ago.
He said; 'I used to feel dizzy when I got up and I couldn't stay outdoors for long because I always felt the cold. 'After the first night, I got out of bed straight away with the help of the nurses and I did not feel faint, My circulation has also improved. I would never put the bed back again and all my family are sleeping on raised beds.'
Now Julian, a former professional boxer and equestrian expert who still teaches youngsters riding, has premised Andrew Fletcher he will do a parachute jump this summer to show other sufferers the benefit of the bed treatment.

Julian Colour Picture: Sub heading: Wheelchair-bound Julian Boustead will jump from the skies this summer. Picture Steve Porter

It was former engineer Andrew who contacted Julian two years ago after learning of his plight and suggested he tried the bed method.

Gravity

Andrew was fascinated by the way water moved up trees through roots and wandered how the gravity and the flow of water would effect the human body.
He put some bricks under the head of his own bed and within four weeks, his wife's varicose veins had disappeared. Since then he has discovered his treatment has helped MS sufferers get some feeling back in their legs and arthritis sufferers.






John's story

In 1990 I had two slipped discs, and had a lamenectomy which ended up with
me being unable to walk. It is thought that a delay of 39 hours for surgery to what was found to be a compression of the spinal cord was responsible for my paralysis.
I was lucky enough to get a bed at ROOKWOOD Hospital, a place that I cannot
thank or speak highly enough of, they gave me back the will to live.

After two years all the slow progress stopped as I had been informed to expect. I
had no feeling from the hips down and no movement of the legs at all. Luckily my
arms were o.k so transfers to the wheelchair were more of a throw which usually
ended with my coccyx hitting the wheel, but as there was no feeling, so it didn't
bother me too much. After a few months came the most horrendous phantom pains
like a knife attached to the mains that struck anywhere in the legs or feet, for
this I was on strong painkillers or if it was too bad injections.
When driving my car around a corner, I had to wedge my head against the roof of the car to stop my body from falling over. This was due to damage to the nerves, which used to control the nerves which held my upper body erect, something I used to take for granted as everyone else does.
Getting into bed would involve tremendous effort. I would throw my rear onto the bed and then with my right hand holding the wheel, I would pull my left leg up, with my left hand, holding my trouser leg. Then holding the bedding with my left hand, I would pull my right leg up with my right hand. At one stage I had even asked for my legs to be amputated, as they were useless and hung heavily. In addition my toenails would fall out on a regular basis, predominantly the big toe nails, often coming away when I removed my socks.

I often bumped my coccyx while transferring from my wheelchair, though I could not tell if I had injured myself, due to the absence of pain.

About two years ago a cutting from a paper was sent to me, it was about Andrew
Fletcher's raised bed. I rang Andrew and he explained his theory and told me how
to raise the bed. The bed was raised eight inches that day, when I saw the bed
it looked impossible not to end up on the floor at the foot. However that night
was wonderful, the phantom pains stopped and I had a full nights sleep. Slowly
things started to improve, improvements such as instead of having to grab my sock
or trouser leg to lift my legs onto the bed I could lean back and swing them up, muscles in
my thighs started to twitch, turning over in bed became possible without having to
grab the side of the bed and pull myself over, not having to pull my legs over
by hand.
I have experienced so many improvements that creep up and are not noticed until days
later.

Pains started again and I thought here we go again, but it soon became obvious
to me that it was nerve regeneration pains that I was experiencing. Although they felt like
previous pains, these stayed in the same place anything from six to twenty four hours.
The next time the pains moved further down the leg, now I am glad to say those
pains have gone the last ones were in my toes. The present pains are in the
feet again but generated from the nerve that runs under the buttocks, now the
feeling has come back to that area it makes sitting in the wheelchair most
uncomfortable, but that is the next problem to get over, but I will, in the knowledge
that something else will improve when the new pains subside.


Now, what I would like to say to everyone who reads this is; if you have any medical problem try it, and more importantly "stick with it"!
Most of all have faith in the healing power of gravity, it has worked for me, AND WHEN I WALK AGAIN!
I will first thank Andrew, and secondly I will let everyone that reads this web page know about it.

John Cann




***********


SCI's and the Importance of Gravity Dependence in Nerve Regeneration.

Case1:

On the 7th of June 1997, I met John at his home, we discussed his improvements and he assessed them at 60 per cent. It is now almost 14 months since we started. John now lives in a flat and has become fully independent.

Pre intervention.

For two years following his accident John had observed considerable deterioration and had recovered no sensitivity or function. John fell from a two-storey building and sustained a complete spinal cord injury at T9 and T10 resulting in two severely damaged vertebrae's. So severe was John's injury that his daughter was told by his consultant that it was not possible to operate as his spine was smashed to smithereens.
She was also told that he would always be dependent on others.

He also suffered a stroke, which caused him to lose most of the use in his left arm and hand. The stroke also affected the left side of his face (slightly causing him to dribble). His left shoulder causes him some considerable pain, which John says is unbearable. When he tries to raise his left arm a loud clicking noise is heard. He is unable to rotate the left arm or raise it above shoulder height and is unable to push with any degree of force.
The main vein in his arm had collapsed and he was told that blood could not be taken from his arm because of it.

Because of the problem he has with his left arm, hand and shoulder it was decided, at the spinal unit he attended, that he could not use a manual wheelchair and should therefore use a motorised chair.

John has lost all sensitivity and voluntary movement below the injury. He is unable to maintain his body temperature, feeling cold continuously. He has no control over bowel or bladder function, and suffers severe oedema in his legs and feet. He also has a large burn on his left leg, caused by a gas fire and his absence of sensitivity to heat.
Legs are firm to touch with the skin taught and not resembling living limbs.

John is unable to maintain an upright posture as abdominal muscles and upper body strength is very weak and lacks control. His posture leans heavily towards his left side. The extent of muscle wastage throughout John's body was obvious to me as I had known john prior to his accident.

Additional problems

Muscle spasms during rest, aches and pains, poor circulation, lethargy, feeling cold in bed, irritability, fidgety limbs in bed, loss of sensation and loss of mobility due to the accident. Night sweats are a constant problem, eyesight poor, continuous urine infection, which flares up around once a week and does not appear to respond well to antibiotics. John feels the urine infection makes him shiver all of the time, causing him to become lethargic, followed by a high temperature and loss of appetite.

He wears a thick overcoat all of the time, even in the summer.

John suffers from fits, which causes his head to shake violently from side to side and his left arm spasms outward.

Intervention: To avoid horizontal bed-rest and poor sitting posture by sleeping on an inclined bed in excess of five degrees.
The idea is allow gravity to continue acting upon the fluids within the nervous system in one direction, that being downward from head to toe.





Pilot Study Notes:

25-4-1996 Week 1 Muscles started to soften, leg tissue softer and upper thigh feels different, "Like they are there now". Back aching (moving up and down the spine), Felt lethargic and had lighter sleep.

2-5 Toe and fingernails improving muscle and skin on legs, more supple, urine, clear but smelly or stronger. Felt warmer in bed. Night sweats stopped.

9-5 Burning up. Urine still improving. Sensation of inner warmth at the top of legs. Muscle spasms improved. Thighs feel strange. Replaced catheter had no infection

16-5 Reported progress to physiotherapist at Torbay hospital. More even body temperature. Strength improving. Felt tightness in pelvic area. Had more muscle spasms, which lasted 4 days. Sensation of warmth moved to calves. Floating pain in spine. Felt stronger and better in myself. Finger and toenails still improving.
Noticed sensation when pinched, in left side abdominal area is now three inches lower than the right side. Hair seems to be improving.

29/5 Easier to transfer etc. Using left arm and hand more, (more control). Developed half moons on nails. Warmth in calf muscles.
Noticed increased sensitivity 3 inches lower than right side on abdomen. Funny feeling in thighs now gone. Muscles in arms aching. Stiff neck, warmth in feet and swelling on left leg has gone down.
Feel pressure of pillow between legs at 4pm and at 5pm feeling a lot stronger from knee to ankle.
29th-5th increased warmth in lower legs. Now have warm sensation in tummy.

21-6 Noticed indication of nerve connection in toes? Now able to hold and maintain an upright posture. Oedema in legs very much improved.

26-6 When lowering legs from the bed to the floor, Penny and I noticed that there was some evidence of self support as my legs did not drop to the floor as they had done previously

1-7 Lime-scale in urine increased.

16-7 Following pins and needles sensation in his legs, John is now able to feel a pillow placed between his calf muscles.

3-8 Toes responded to movement after massage and left leg had normal reflexes when tapped on the knee. Right leg still has no reflex. No spasms when standing in the frame.

12-8 John has now moved from the guest house to a flat. This is a big step for John and means that he is no longer dependent. He could not have made this move when we first met.

6-8 Legs feel as if they want to itch? When in the standing frame, no more spasms. Note: Some days John's link to his toes is less obvious and shows little signs of control. Adapted to new environment OK.

13-9-96 John visited Odstock, Salisbury's spinal unit for an examination. During his visit he was accused of weight training, because of his now huge muscle bulk. He has now sustained a broken knee on his right leg, caused by levering his leg against the joint while trying to move from his chair.
Xrays revealed bone formation 2 inches below the damaged area of the knee.

17-9-96 Visited John who reported that now, when he sits down he actually feels like he is sitting down. He is now able to feel the pressure from his catheter strap. He can also feel a pillow when it is placed between his feet, while resting. Left hand has improved vastly.
When I pressed his toe firmly, he could feel the pressure. His right toes have been responding by moving when trying to move them. The left toes are also responding but not as much.
No urine infections. John is unable to use the standing frame because of his knee injury.



25-10 John told me that his catheter leaked, but this time he could feel that his foot was wet.
I tested this in front of Mrs Penny Meredith, by placing an ice cube in his sock. After a minute he could feel both the cold and wetness. Also dramatic changes in muscle spasms, now only evident in toes.

2-11 John confirmed that he had had an erection, he also confirmed that his bowels are functioning properly and can now push his stools out by muscular control. Penny Meredith (Nurse), was first to point this out and said that his stools now had shape and looked normal, which indicated that muscular control had returned to his bowels.

8-11-96 Sensation on left side now moved down to pubic area. "And it's pretty strong". Burn mark on leg appears to be getting smaller.

28-3-97 Met John, who is now convinced that his legs will be moving within 4 months, so strong is the feeling in his legs that on occasions he has kicked out while trying to do so. It is not like a spasm, which he used to get, this was completely different. He also feels he may be able to hold his urine back and he is intending to try a normal catheter. His eyesight has improved to the point where he is now able to view the television properly.

15-5-97 John told me today that when he uses a bladder-wash (consists of a small clear bag of fluid, which he attaches to his catheter. He is now able to physically push urine and the liquid used in the wash bag from his bladder, up the tube and into the bag, whilst holding it above his abdomen.
He is achieving this by consciously using his muscles, which indicates bladder control may also be returning.

7-6-97 Met john at his flat. His bowels are functioning OK now. He still feels like his legs want to itch, but they don't. Over the last two months he has had pains in his kidney area, which caused a severe ache. John feels that because of his right knee injury, (which has not yet been operated on?), he is unable to use the standing frame any more.
He has developed very large muscles in his upper body. Still able to push bladder wash back into the bag, by controlling his bladder. Increased vitamin C to 1000 mg per day and urine is still clear. Furthermore, he has not had a urine infection since he began sleeping on an incline.
The development of inner warmth in both legs and is more intense and now feels like he has used a deep heat type of treatment. This sensation is always in his thighs and calves and on occasions runs right through to his toes.
Over the last two weeks John has begun to feel pressure on his bottom when lying on the bed. Before he could feel pressure only when sitting in his motorised chair. Hips very tight and getting a lot of headaches recently.
When asked how far he thought he had improved since we began this therapy, he answered sixty per cent. I then asked john if he still had problems with his left shoulder. He is now able to fully rotate the arm and can push with it. The strength has increased by up to seventy per cent and he has no pain from it at all. I then asked john if he thought he would be able to use a manual wheelchair and he replied "Yes". This is a significant turning point for John, as he would obviously benefit from additional exercise.
When asked about his fits, John told me that he no longer has any problems, other than an occasional slight spasm in his left arm, which he is now able to suppress.

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

SCI's and the Importance of Gravity Dependence in Nerve Regeneration.

Case2:

Julian: Complete Spinal cord injury at C6 and C7.

Julian's injury was caused by a diving accident.

Pre intervention

He has no feeling in his legs and suffers from a constant urine infection, which appears to flare up once a week and does not respond well to antibiotics. This urinary problem causes influenza-like symptoms and makes him feel very cold. He has had pneumonia 3 times since his accident. He is unable to use of feel his hands, which are locked up in very tight fists.
He has no normal reflex action in his legs. Curiously, his leg appeared to go back when his knee was struck. When I tried to cross his legs over to test his reflexes, they were extremely tight. So tight that I was worried about breaking his leg and decided to support his legs under the knee joint.
His legs are devoid of sensation and voluntary movement.
Each time he uses his standing frame he blacks out.

At one point Julian was told that he should have an operation on the tendons in his wrists in order to release them. Julian refused to have the operation at Salisbury, (Odstock), Spinal Unit. He also refused to have his bladder sphincter surgically cut.

He is devoid of sensation below the armpit level and has little control over his upper or lower body.
While in bed Julian suffers from feeling very cold. He lacks the ability to control or maintain his body temperature during the day or night. "I also suffer with headaches regularly.
Throughout the night, Julian requires turning several times, in order to avoid pressure sores.
He is unable to fight his children off when they play fight with him, while he rests in bed.

Two years prior to his spinal cord injury he broke and dislocated his right shoulder. Tjis caused him considerable pain and he was told that he would always have problems with it. One year later he broke and dislocated his left shoulder and the prognosis for ongoing problems was the same as the previous one.
Following Julian's Spinal Cord Injury he still has problems (as predicted) from the damage he sustained to his shoulders. Two years from the time of his spinal cord injury and four years since his first shoulder injury, Julian has made little progress in this area. He still suffers from the pain.


Pilot Study Notes:

21-8-96 Body temperature has gone up, feet are warm now, muscle spasms have improved, legs feel less tight, hands feel warm, hands feel a if they want to move. Abdominal muscles more supple and bowels working better.

25-8 Upper body strength has noticeably increased. When using calliper, I noticed my legs were swollen as they normally would have been, however after one nights rest they returned to normal.
No lethargy. Aches and pains feel different now. Am able to do more physiotherapy.

31-8 Had my first tummy ache since the accident. Urine is clear now. Standing in the standing frame longer. Feet have been moving? Hands softer, urine leaking during the night. Feeling tired.

7-9 Change of sensation in toes. I feel well in myself. Have now developed tingling sensation in my knees, I feel like they want to move. When trying to raise my toes they go down? This is a very interesting observation, because when I tested his reflexes at the start his legs went backwards slightly? Upper body strength still improving.

9-9 Spent two nights lying flat to determine whether it was the bed which was improving my condition. I felt irritable and my muscle spasms increased. I also noticed a sweat odour.

14-9 Noticed twinges in my legs and now able to cross my legs with a little help. Which means that my muscles are more relaxed. Developed pins and needles feeling in my legs and I now have backache.

19-9 All sensation of pressing pressures now responding and I am able to feel pressure on any part of my body. Have not had any urine infections since raising my bed. Not drinking so much.
Calf stretching exercises now cause me to ache normally. I spent 2 hours upright in my full body calliper and I was OK the next day. I am ok in the mornings now and I feel like I can get up and walk. I now feel an uncomfortable pinching sensation when I am in bed. I am always as warm as toast now and my hands do feel warm.

5-10-96 80 over 40 blood pressure and my heart rate is 40 beats per minute, which incidentally was the same as my fighting fitness rates. (former boxer). I haven't had bronchitis since I raised my bed, this is impressive because I have suffered pneumonia 3 times in the past since I had my accident.
Had a urine infection.
20-10-96 Received advice from Tromans at Odstock Spinal Unit, though did not have any use for it.
Headaches now gone.
Shins burning up and very sensitive to touch, sensitivity in my legs has now fully returned. Toes are now working correctly and like the rest of my body are more sensitive. I feel that I am able to do more sit-ups 3 lots of 40.

5-11-96 Hands now staying open, tingling has improved in hands and lower legs, sensitivity improving all the time.
On Sunday I stood for seven hours and didn't go giddy at all. My legs were swollen though. Feet still a little swollen now. Toe nails growing faster, I cut them every five weeks.
My catheter is suffering every seven weeks now instead of every five weeks.

6-12-96 so much warmer now, both in and out of bed. Sat outside with just a T shirt on. Sat in my chair today, I am now able to take the weight of the brown board from under the bed.

3-1-1997 Hands more relaxed and warmer. I am able to stay warm despite the freezing weather. I am now able to throw the kids off me when they attack. Had no urine infections since October, I used to get problems once a week.
Bowels working better and I did not get ill this Winter. I would normally become very ill. "Everyone else has been ill though".

19-2-97 Bladder infection, swelling is bad and have been sick for six days.

30-3-97 Everything OK. Had examination at Salisbury, (Odstock) All my internal organs are working fine/ Ankles aching, sensitivity OK all over, I can feel a creased sheet on any part of my body.

9-5-97 While out for the day in a T shirt, I suffered a severe bout of hypothermia and was determined not to end up in hospital, I felt very ill. I finally arrived home and within 3 hours of inclined bed-rest I was completely back to normal.

9-6-97 When asked to assess his improvements on a percentage basis, Julian insisted that he is a 100 % better than before he raised his bed. Julian travelled several miles the other day in his wheelchair and while going down hill he tipped it over. He waited twenty minutes for a passer by to help him back into his chair and then continued on his way.












DICTAPHONE RECORDED THIS CONVERSATION.
Andrew K Fletcher holds the master tape.

17-8-1997

The Conversation

Today's date is Sunday August 17th 1997 and I am at the home of Julian Boustead, Sitting down, watching Julian writing with a felt tipped pen, on A4 sheets of paper. Julian appears to have control, he appears to have grip in his hands and he can feel the felt tipped pen, which is held in his fingertips. And Julian is forming letters and words in front of my eyes. Julian assures me that he couldn't do this before raising his bed, which has been about 11 months ago.

I have left the tape on record now in order to monitor what is said during this exercise.

Recorded

So, just trying to get my head around what's happening. When we started, before we raised your bed, your hands were locked up solid? Julian: "Yes". You had no sensitivity in your fingers? "No, none at all, just numbness on the left,-well both sides really, exactly the same really and just cold on the arms.

How would you push yourself along in your wheelchair before? "With the palm of my hands". And the hands were in the shape of a fist? "Basically yes". They were forming a fist because they were too tight? "Yes, mainly spasm". So they were locked up! How are your hands different now? "Nice and soft, lovely and warm and more relaxed and better sensitivity and feeling in both hands".

So you can feel the pen that is in your hand now? "I can now, yes, well the only ones I can't feel is my little fingers, that's all really, you can tell" Julian points to skin damage to little finger.

I told Julian that this was similar to the way people with leprosy damage their fingers and toes, due to loss of sensitivity.

Could you just write your name and address and telephone number for me, I know that we have done it once before, but I'd like to see it once again? So Julian has started to write his name and address and the hand writing is readable. Julian has written his name. He is writing with his right hand. Interestingly his second attempt at writing appears to have improved by around 40%. Could you write the date down? "17th"? Yes, and its Sunday. "I know that". August 97. Could you sign your name? Excellent!
Taking a new sheet of paper could we try again now using the left hand? Julian added, "I have never been able to write with my left hand".
Julian is now holding the pen as he did with the right hand previously. Can you feel the pen in that hand? "Yes I can feel the same feeling in both hands really". How are you gripping the pen? "I thought it was balance. I don't know, I am holding it between my thumb and forefinger, it feels like." You say it feels like, you can feel yourself gripping? "I can feel it but". There's no strength? "No strength, well I suppose there must be a little bit to hold the pen". I see that from time to time the thumb is moving up and down. "Well to be honest with you, I suppose subconsciously your trying so therefore its trying, its sort of spasmodic movement through. Well it does move up and down slightly don't it"? It does move up and down! Now, move the thumb up and down. The thumb is moving up and down, would you agree with that? "I would really". Well we are not imagining what we are seeing here are we? "No, I suppose it is on the ends, definitely some improvement then, I'll just carry on writing, I'll never be able to write my name else. Its doing the letters back to front you see". I can read Newton Abbot and Julian is writing his telephone number and I am able to read it. That's amazing and Julian has just signed his name. "It looks like John".

Amazing, Pretty damn excellent. "Well that's the first writing I've done since I've been home!" Why couldn't you have written before? "I couldn't put enough pressure on the pen to make enough mark".
Could I just shake your hand? "Ain't making no deals." No leverage and no trickery, how does that feel? "It feels normal." Does it feel like you would expect it to feel if someone was shaking your hand?
Can you try to move the other thumb and again don't try to lever. I can see the thumb moving can you keep the hand still. "The thumb is moving." It is, It is, it appears to be trying to work doesn't it, though there is only a small amount of movement, just a twitching of the thumb. "Yes but that's controlled spasms, it's just trying to get there."

So if I shake you're other hand, again no trickery. How does that feel? "It feels normal again., apart from the little finger, that's all." Now the thumb is definitely moving on this hand. There is a lot of effort going into that and I can actually see the thumb moving, its lifting up, are you trying to lift the thumb up? "Yes the thumb-I am, and that's the hardest one to do, the left one is worse." Try to push down on the thumb. The thumb is going down. Now try to lift the thumb. The thumb is going up, can you see that? "Yes, its doing very well." That's amazing! "Just something I just don't take much notice of."
You usually help with drawings now and you couldn't do drawings before? "No a few months ago I couldn't even hold a pen." How long have you been able to hold a pen? "About 2 months. "You know that's about the best I've done, normally the pen slips out of my fingers". That pen's not going to slip out! "No". I saw you earlier grip a piece of paper, could you explain how you are able to achieve this? "Yeah you just put your hands around it -I don't know really I just get my wrist and tend to flick it, and its there, it's -I don't know really." Looking at you holding the paper it looks normal. "No I just take it for granted really.
You mention that your hands would be cold normally prior to raising your bed? "Yes but they are lovely, lovely and warm all of the time now, like normal body temperature." You can determine this without touching your hands? "Yes, I know if they are warm or cold, they feel lovely!" That's a definite link back to the brain! "Yes they do feel nice, whereas before they did feel cold and they were cold too! A sort of numbness feeling but all that's gone, pins and needles, static, all that. The only thing that feels tight are my little fingers." You said at one time that they felt like a fat lip? "Yes they still feel like that, funny enough, but not all of the finger now actually. All of the hands felt like it before though."
"I have noticed that if I get pins and needles in my hands it usually affects the little finger more. Yes its like you have laid on it and it's gone to sleep." Previously I used to get a feeling that my hands and forearms were dead. It's not half as bad now and only evident on my little fingers.

How is the sensitivity around the rest of your body? "The only bad sensitivity I have got is from the shins down." When you say bad, do you mean that you can't feel sensitivity below the shins? "I can feel all over, but it's a bad tickling feeling and pins and needles from the shins down, whereas before it was from the armpits down." "The rest feels quite normal internally and externally, apart from sharpened things and hot and cold objects really. But internally I feel lovely and warm, I feel normal, which is frustrating isn't it."
What about your upper body strength, are there any changes in that area? I know we have discussed this before. "I'm definitely stronger because we are talking about going on to heavier weights. "Upper body strength, well, I had a wrestle the other week, funny enough the week before last with the children, I was right as rain with them, so it's a lot better for me because, before I could do nothing!"

I have seen you in your standing frame, you let your body go back and then pull yourself up. How do you achieve this, what are the mechanisms you are using? "If I can spasm the muscle, basically I can spasm it, -of I don't know really, but I can feel it tensing, so I can make it work." You can feel the muscles contract, is that what you mean? "Yes, I can make myself free stand, obviously from the waste up for about thirty seconds, by controlling the spasm as such, which normally is done subconsciously, whereas I am more aware of it. Sitting on the bed is so much better as well, I can feel the tightness in my back, whereas before it was so loose. So it's nice in that area, which is improving vastly and goes from strength to strength. But I do feel my body gets tired though, that's the trouble." Would you attribute that to doing more? "Just doing more exercise, yes and for longer periods, although it is only ten or fifteen seconds longer on each exercise, my body just seems to find it a little more taxing really."

What kind of exercises do you do in your workout? "Just stretch ones using the body in itself. Then free sitting on the side. Whereas it was usually for about ten seconds, My father in-law Vince helps me to do it for about thirty seconds now and that's four different exercises and over that period it's a much longer time." What about sit-ups, you mentioned them, is that unaided? No Vince sits in front of me sort of aiding me, but I still have to pull up for myself. So I still try to spasm the stomach to help ease up as well, because if the muscles are tight there is additional friction.

What about your abdominal muscles, are they more supple or more tense? "Supple I'd say."

When we first met your legs were really tight. "They're very tight now actually, I can feel that they are tight now." When I first met you they were like rigor-mortise had set in. "Yes, but they are quite natural now." I was worried about breaking your lags, when I tried to test your reflexes. "They go tight at the moment but they need a good stretch to make them go alright again.

Do you think they are affected by sitting in your chair? "I think they are actually, it depends on the chair I'm in. It acts up behind the knee, its that sit down posture, I think." "They just tend to tighten up during the daytime."
I advised Julian to raise the bottom of his chair. Julian said that he would put an extra cushion under his seat. He commented that his wheelchair was like a bucket, but added that this posture was useful outdoors.
"This does make me feel worse than sitting in the other one, in this position, which says something's not right with it. "No it feels its not right too."
How does this alter when you get on your inclined bed? "Just a few strong spasms really, until I stretch out again and then I'm alright and quite happy, but this is uncomfortable all day long."
What about waking in the mornings, is that improving? "Waking, No just normal! I get up normal every day. Don't get that horrible giddiness either. So you used to feel giddy in the mornings? "Terrible, funny enough I felt giddy on the way back from when I met you, (down by the horses and in his motorised chair.) "My tube was blocked because of the way I'm sitting you see. I had to go for a pit stop and have an alteration because the tube was kinked and it was not flowing the way is should be." But again it's this bloody position!"

PAUSE

Would you like to repeat that? "I think the feelings in my feet have recently changed, they feel like a burning sensation whereas before it was like pins and needles." If you touch your feet are they hot? "I don't know really, Vince could tell you that, he never complains that they are cold now, because before they used to be freezing." But now when the nurses come in the mornings they say my feet are like pieces of toast." "But that's the way they feel, they feel they are on fire, they really do they feel red-hot."
Do you get spasms in your legs now? "I do get spasms in the legs. Funny, I had a bad night last night, well I say bad, it was just that I was really close to the edge of the bed. My leg spasm'd and just dropped down the side of the bed, whereas normally I would be able to control it and keep my legs straight. But normally with regard to spasms, I wouldn't really have any problems at all. In fact I get my legs into position and they stay there all night and don't move at all and I have a comfy night." How were they before we put the bed up? "They were quite tight before and if I moved they would spasm more. And they would be jumping around all night, whereas they don't do that any more. "They do spasm at times but very rarely.

First time I called my Wife down stairs in may weeks, whereas before she was down all of the time, you know, repositioning me. But last night was the first time in weeks, so its minimum really, wouldn't say I don't get any because I would be telling a lie."
"But then again on no pills so its even better again isn't it." You say you have reduced your medication? "Yes, I've dropped it down again now, especially the muscle relaxants, I just don't feel no need for it, You know its doing the job on its own and that's another bonus."

Your sitting I a chair now, do you actually feel like you are sitting down? "I feel like I'm sitting down and its as uncomfortable as hell, like I want to get up and move." Again relating this back to how you were? No then I was just glad to sit and didn't mind what position I was in." Could you determine what position you were in then? Very vaguely and only visually because you knew you wasn't square."
"But now you feel uncomfortable. If my hips are under too far, I know because its pinching, my internal muscles feel like they are pinching as well. You feel like you are sat on them. You just move the hip out and then you feel more comfortable. So there is obviously some sensory improvement there"

What about bladder control? "Well no my bladder control is really iffy. I think just paralysed as it is but no infection so again that's another bonus. "The last infection was months ago, whereas normally it was once a week or once a fortnight on a good period."


One year before Julian's accident, He broke and dislocated his left shoulder and was left in considerable pain. Julian has just realised that the pain has now gone and this is despite the fact that he was told that he would always suffer from this injury. Furthermore the year before that he broke his right shoulder and was given the same prognosis from his consultant.

Julian no longer experiences any pain from the two shoulder injuries, despite the fact that he still suffered from these injuries, up to the point we met and two years after his spinal cord injury.

I met Julian on the 13-3-1999 and found that although he has not made much more progress he has not deteriorated.

An interesting observation occurred around six weeks previously when he developed a pressure sore. This developed during one night's stay in hospital while sleeping on a flat bed and not being rotated.
He was told that it would be around six months before he could expect to see some improvement. Despite this the sore had greatly improved in a couple of weeks, following his return to inclined bed-rest.

In order for Julian to progress further, he needs to alter his sitting posture, and to stand for longer periods. He also need to exercise more and informs me that he has become lazy over the winter months. He has also gained about 20 lbs. and needs to alter his diet accordingly.
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Postby Algis » Sat Dec 12, 2009 9:12 am

Thank you Andrew; for all the efforts and time you put on that :)

Cheers!

Algis
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Re: Spinal cord Injury using Inclined Therapy

Postby ForeverSpring » Sat Dec 12, 2009 9:36 am

These cases are so wonderfully encouraging!

AndrewKFletcher wrote:
Intervention: To avoid horizontal bed-rest and poor sitting posture by sleeping on an inclined bed in excess of five degrees.

Andrew,

In your work with John Cann, you noted that his bed was inclined in excess of five degrees. Was that because of the severity of his injuries?

You previously stated somewhere that the five-degree angle is a compromise for comfort, i.e., to help people to not slide down the bed so easily. If the comfort factor is not considered, what is the best angle for healing? :?:

I wonder about this, because I sleep quite soundly and apparently move very little during the night, thus not sliding downhill. There are two cement blocks under the head of my bed, and two wood blocks (about 3.5 cm. thick) under the foot. I could easily remove those wood blocks and yet still sleep comfortably, if an angle in excess of five degrees would be more beneficial.

Should our goal be to sleep at an angle of five degrees or more -- at as high an angle as possible, without sliding out of bed? :?: :lol:

ForeverSpring
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Postby AndrewKFletcher » Sat Dec 12, 2009 12:00 pm

Foreverspring.

The higher angle was used to accelerate the repairs to the damaged nerves. brought about by people experimenting at different angles. Remember an impact damaged nervous system is different to plaques in ms. There are no relapsing remitting stages for a person with a spinal cord injury, in fact the chances of any recovery following 2 years post injury are rare, yet John Mason Julian Boustead and John Cann the very first 3 people to test this showed substantial improvements.

A great deal of time was invested in following their progress, but I found it fascinating to be able to hear from themselves and family and friends around them how much they function and sensitivity to pressure, heat cold and touch had returned over the months and years that they remained sleeping on an angle.

If a person with ms was not responding at all to tilting the bed (unlikely) I would suggest using a dehumidifier in the home to accelerate the effect of the bed.
People with ms respond well at the five degree angle, it may prove under more controlled conditions that a higher degree angle could assist a person with ms more, but it is difficult to imagine how we could achieve this with the limited input we have on a forum.

As stated before a lady living in Paignton experimented with using a dehumidifier together with the inclined bed found that her dropped foot problem resolved only on mornings where she used the dehumidifier and although much better using the sloping bed, the humidity factor was proven by her on many occasions.

So it not surprising to read on this forum peoples accounts of relapsing during periods of damp and high humidity, attributing it to barometric pressure when according to Pauline’s use of the dehumidifier (which does not alter the barometric pressure) confirms this point.

I have a friend with psoriatic arthritis who sleeps on a more acute angle and swears by it having experimented herself since 1995. Her skin is clear and has been for many years, except for the occasional eruption on elbows, and the small of her back. But again skin plaques are different to myelin damage.

By all means test the increased angle, without people experimenting we will never learn anything.

Thanks for your posts

Andrew
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Postby AndrewKFletcher » Sat Dec 12, 2009 12:03 pm

Crocky

Thank you for putting this to the test and please do be vocal good or bad we need to know.

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Postby ForeverSpring » Sat Dec 12, 2009 1:46 pm

Andrew,

Although the causes and process of MS and SCI may differ, it would seem that, in the nervous system, a scar is a scar? I realize that would need to be confirmed by careful analysis.

However, if the higher angle benefits healing of presumed permanent damage in spinal cord injury, it seems logical that the higher angle would also benefit healing of lesion scar damage in multiple sclerosis? Just my guess.

Lesions are seen to appear and disappear on brain MRIs of MS patients, although -- as noted elsewhere, even on this forum -- lesions do not necessarily correlate with disability. Despite that, the healing of scars in the nervous system can only be a good thing. I would rather have a brain and nerves with no scars on them! :)

Anyway . . . I just removed the two wood blocks from under the foot of my bed. I lay on the bed before and after the alteration, and barely noticed the change in angle. It has been years since I last looked in a trigonometry book, but I will try to find the information I need to calculate the angle!

ForeverSpring
==========================
Edited to add: This little experiment quickly gave me some unexpected and unpleasant results! 8O

I changed the elevation of the head of my bed from 6 inches to 8.5 inches, which changed the angle of inclination from 5 degrees to about 6.5 degrees. This was a small change, really, and I thought it would be insignificant. Not so!

If you are also considering this, please first read what happened to me:

http://www.thisisms.com/ftopic-6755-150.html

I will be content to stay at the 5-degree angle with the 6-inch elevation! :D
Last edited by ForeverSpring on Mon Dec 14, 2009 12:26 pm, edited 2 times in total.
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Postby crocky » Sat Dec 12, 2009 2:01 pm

Hi
Thanks for your reply, having only spent 2 nights inclined so far, I can't say I've felt much of a difference in my ms symptoms - worst one being chronic fatigue which has been without a break for the last 3 years - however its very early days so far, I find the raised bed very comfortable, and so am ready to continue with this experiment for the forseeable future.
Many thanks for all the work you are putting in on this theory.
Suzanne
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