We are very encouraged with the results so far. The pain is tolerable. Overall, I am sleeping much better at night.
We received the results of using the Pulse Oximeter and they seemed to be getting better but not enough to stop using the Bi-pap at this time. We will try again in a month or so.
We don't have any previous respirations and only limited pulse records. After checking our most recent BP records, the systolic pressure was mainly 50's and 60's. Now, since starting the study, the systolic
pressure is definitely averaging higher numbers. The diastolic pressure is not dropping to the extremes lows as it did prior to raising the bed.
Thanks for everything,
Date: Tue, 10 Jun 2003 02:45:00 EDT
Subject: Re: Week #2
Sorry about the pain in your hips, did expect you to have some discomfort in the hips as a result of the dislocations you mentioned earlier. There is a chance that the ligaments in the hips might tighten up given time, though this is purely a guess, as never had anyone try this with your hip problem as far as I am aware. Urine sediment, was recorded as an increase initially with John Mason, followed by a decrease. We concluded that this could be the result of improved renal function, giving rise to an initial detox of the system prior to eventual normal urine production. Particularly relevant in people with water retention problems.
How do you feel about the results and discomfort so far John?
You are a lucky find, having the equipment to monitor your body functions is a great plus. But having an enquiring mind which you obviously have makes it a double plus. BP is looking very good, heart rate and respiration rate fairly regular also. Do you have any records of heart and respiration rate prior to this study? Check you bowel movements for firmer stools in the next few weeks, as this may be some of the stomach upset your are referring to.
Way to go John and family
Start of therapy: 5-26-03
MY MEDICAL CONDITIONS ARE LISTED AS FOLLOWS: C3-C4 Quadriplegic
(incomplete) since 05/22/77
MY CURRENT PROBLEMS ARE LISTED AS FOLLOWS: Fluctuating Blood Pressure
(high, 232/116 and low, 39/26) Muscle Spasms (legs, back, abdomen, arms)
Headaches (associated with spasms)
Ringing in ears
Both hips dislocated
Pain in the hips (pain extends across the pelvis), back, abdomen, right
side (between hips and ribs)
Poor Circulation in legs (absence of hair from mid to lower legs) No
Half Moons on nails
Pins and Needles feeling in hands and fingers Normal sensitivity stops
at 3 1/2" above the nipple Abnormal sensations: small area on right
forearm, above elbows (tricep area), splotchy area around the right
knee, chin on right leg. Sleeping with a Bi-pap
Frequent morning congestion
No Bowel or Bladder control
MY PARTICULAR CIRCUMSTANCES ARE AS FOLLOWS: Scars: Neck (front and
back), Hips, Kidney areas, lower abdomen, buttocks, back of each thigh,
front top right thigh, right ankle, both heels amputated.
CASE STUDY: JOHN MCKINZIE after 27 years of paralysis and night time use of bipap ventilator
6-3-03 Slept good. Some dizziness throughout the day. Urine seems to
have a stronger odor. Decided to start measuring input/output of fluids.
Legs are staying warmer. Having pain in hips (pain level 3.5). BP low in
afternoon and evening hours.
6-4-03 Restless night. Pain in hips (pain level 4-5). Morning hours pain
increased (pain level 7-8).
NOTE: Legs appear to have more muscle tone.
Overall had a good day.
6-5-03 Had a very good night. BP stable throughout the night and morning
hours. Hip pain minimal. BP still relatively stable throughout the rest
of the day.
6-6-03 Did not use Bi-pap overnight. Used a Pulse Oximeter to monitor
oxygen levels (will not know the results until the doctor calls with
them). Did not sleep well. BP still remains fairly stable throughout
morning hours. Hip pain increasing in early afternoon hours (pain level
8). Hip pain in evening hours (pain level 8.5+).
6-7-03 Did not sleep well. Tired throughout the day but felt good.
Minimal pain today. No other changes.
6-8-03 Had a good night, slept well. Minimal pain. Some dizziness in
morning hours. Some dizziness along with stomach upset this afternoon
and evening hours.
6-9-03 Had another good night. Still having stomach upset this morning.
Hip pain increasing. Early afternoon pain level 8. Some light-headedness.
Evening pain level 6. Still do not seem to have any swelling.
NOTE: Sediment in urine is usually at a high level but noticed decrease
in sediment today.
6-10-03 Slept well. Blood pressure fairly stable all day. Pain level
increased as day progressed (6-8). Continued decrease in urine sediment.
Low grade fever in the afternoon and evening hours.
6-11 Slept well again. Temp back to normal this morning. Some stomach
upset during afternoon hours. Hip pain in evening (pain level: 7.5).
6-12 Slept fairly well but woke up early (4:00 am). Some dizziness in
afternoon. Pain level about 6 in late afternoon. Evening hours pain
level increased to 8.
Low grade temp and elevated pulse.
6-13 Some restlessness throughout the night. Dizziness and low BP in
late morning hours. Some nausea in afternoon and evening hours. Pain
6-14 Did not sleep well. BP low throughout night. Had a few waves of
nausea today. Pain level: same as yesterday.
6-15 Slept better. Hip pain increased in evening hours (pain level:
7-8). Low grade temp in evening hours.
6-16 Miserable night. Did not sleep well. BP low. Experienced nausea
throughout the night. Hip pain (6-7) in morning hours. Still having a
lot of stomach upset.
6-17 Slept fairly well. Nausea has subsided. Otherwise no changes.
However, pain level increased in evening hours.
6-18 Had a very good night. Slept well! Hip pain level 7-8. Afternoon
and evening pain level increased to 8.5+. Low grade temp. Some nausea.
6-19 Slept fairly well. Minimal pain throughout the day. Pain level
increased in evening hours, otherwise no changes.
6-20 Slept good. Minimal pain. No other changes.
6-21 Did not sleep as well. Woke up often. Minimal pain today. No other
6-22 Slept well but not long. Minimal pain most of the day. Pain level
increased slightly by evening. No other changes.
6-23 Had a great night. Felt good most of he day. No other changes.
Note: On average, since starting the study, I have had better nights.
Week 7 & 8
7-8-03 Had a very restless night. Minimal pain today.
7-9 Slept great. Hip pain level: 7-8.
7-10 Slept good. Abdominal discomfort in afternoon and evening hours.
Hip pain level: 8.
7-11 Slept good until about 3 am. Hip pain increasing in afternoon
hours. Pain level: 8+.
7-12 Slept good. Hip pain level: 8+ throughout the day.
7-13 Restless night. Fairly good day. Hip pain increased in evening
hours. Pain level: 8.
7-14 Slept great. Hip pain reaching level: 8+.
7-15 Had a restful night. Hip pain still 8+.
7-16 Slept good. Pain level remained high throughout the day. NOTE: some
splotchy red spots on right leg.
7-17 Had a painful, restless night. Pain level: 8 Pain continued
throughout the day.
7-18 Slept good. Pain level down to about 5 this morning. Hip pain
increased in afternoon and evening hours. Pain level: 8+.
7-19 Did not sleep well. Hip pain seems to be more continuous.
7-20 Slept fairly well. Hip pain eased up today. Pain level: 5-6.
7-21 Slept good. Pain increased throughout the day reaching 8+.
Subj: Week 9 & 10
Date: 05/08/03 00:13:19 GMT Daylight Time
Week 9 & 10
7-22-03 Slept good. Pain level: 7.
7-23 Slept good. Pain level increased toward evening (pain level: 8).
Low grade temp in the evening hours.
7-24 Had restless night. Some dizziness in morning hours. Pain level
still elevated. Increased sensitivity in both biceps in approximately a
3" to 4" area.
7-25 Slept fair. Pain level dropped to about a 4 in morning hours. Hip
pain increased in afternoon and evening hours (pain level: 8+).
7-26 Slept great. Pain level has remained high (8+). NOTE: Examined
bicep areas with ice and felt cold (First time since the accident in
1977). There was no response to heat.
7-27 Slept fair. Pain still elevated today. NOTE: Did another test on
biceps using dull and sharp, could tell the difference.
7-28 Sleep was fair. Pain level reached 9 in the afternoon hours. Had a
low grade fever in afternoon and evening hours.
7-29 Slept good. Felt cold all day. Pain level: 5. No other changes.
7-30 Slept great. Still felt cold throughout the day. Pain level 7 in
7-31 Slept fair. Felt warmer today. Pain level: 6.
8-1 Slept good. Felt cool again. More muscle spasms than usual today.
Pain level: 7-8.
8-2 Slept good. Still feeling cold. Pain level remains 7-8.
8-3 Slept good. Felt warmer today. pain level dropped in morning hours
but returned to an 8 in the evening.
8-4 Slept good. Experienced some dizziness in morning hours. Pain level
Vital signs are staying relatively the same as previously recorded. Do
you want us to continue sending them?
Week 11 & 12
8-5-03 Slept good. Some swelling in left foot. Hip pain level: 8+.
8-6 Slept great. Felt cold in morning hours. Pain level reached 8+
today. Low grade temp in afternoon and evening hours. NOTE: Swelling is
8-7 Slept great. Hip pain level 8 in evening hours. Low grade temp.
NOTE: Surface sensitivity in right bicep area is now connected to
shoulder area. It is no longer a 3-4 inch patch. The connecting area is
not as sensitive as the the shoulder or bicep but has a numb tingly
8-8 Slept fair. Pain level high this morning (pain level: 9). Continued
to be high throughout the day. Muscles in legs are very spastic today.
Running a low grade temp.
8-9 Slept good. Pain level 4 this morning. Pain level increased toward
evening to 7+. Low grade temp in evening. NOTE: Having some trouble with
the skin festering up behind both ears.
8-10 Did not sleep well. Feeling light headed this morning. Pain level:
7-8. Increase in spasms today. Not feeling well.
8-11 Restless night. Pain level remains elevated.
8-12 Slept good. Pain level averaged 8 throughout the day. Skin behind
ears still infected but looking somewhat better. Low grade temp.
8-13 Slept good. Pain level minimal throughout the day though it
increased in evening hours.
8-14 Slept fair. Had a headache all day. Pain level: 7-8. Increased
spasm activity in evening hours. Low grade temp. NOTE: Can now feel
pressure in a small area in the middle of the back (this is a new
8-15 Slept good. Felt light headed throughout the day. Low grade temp in
the evening hours.
8-16 Slept fair. NOTE: Can now feel pressure all the way to the nipple
line. Hip pain level: 7-8.
8-17 Slept fair. Pain level increased to 8+ by evening. Increase in
muscle spasms in evening hours.
8-18 Slept good. Pain level increased in evening hours. BP running low
in evening hours. Some dizziness.
NOTE: Over the last 2 weeks noticed an increased in body hair (thighs,
arms, groin and torso areas).
BP daily high and lows - Pulse & Respiration daily range
232/116 39/26 Benchmark for BP
6-3 128/76 65/37 70-92 16-20
6-4 140/96 70/43 62-76 14-20
6-5 141/90 70/41 66-92 14-24
6-6 134/90 75/53 63-88 16-22
6-7 145/81 80/40 60-95 16-20
6-8 156/104 68/40 74-95 16-22
6-9 112/80 68/47 60-72 16-20
6-10 149/82 89/54 60-95 16-24
6-11 144/95 64/44 64-87 16-20
6-12 147/98 76/48 60-104 16-24
6-13 133/82 67/38 73-98 16-22
6-14 109/77 62/45 62-78 14-22
6-15 146/95 68/39 70-100 16-24
6-16 108/80 56/37 62-88 14-20
6-17 128/88 83/53 59-88 16-20
6-18 136/85 108/78 60-103 12-22
6-19 105/72 60/38 63-75 16-20
6-20 143/89 87/52 60-100 12-24
6-21 123/80 73/45 68-82 16-20
6-22 128/93 81/57 60-99 16-24
6-23 136/86 76/43 64-96 16-20
6-24 128/60 77/52 64-98 16-20
6-25 108/76 82/40 67-104 18-22
6-26 140/84 83/45 79-98 18-22
6-27 112/73 70/45 70-77 16-20
6-28 141/88 84/41 60-100 16-20
6-29 143/85 80/49 71-95 16-22
6-30 112/79 77/44 62-72 16-18
7-1 140/95 79/48 64-94 14-22
7-2 136/80 76/47 70-91 14-22
7-3 112/74 67/42 66-76 16-22
7-4 116/92 89/57 56-94 14-20
7-5 116/85 68/48 71/92 16-20
7-6 143/100 88/38 71-95 16-20
7-7 136/83 56/36 64-92 16-20
7-8 130/78 62/40 60-74 14-20
7-9 116/81 84/52 63-88 16-20
7-10 146/79 67/39 68-103 16-20
7-11 132/90 61/39 62-79 14-22
7-12 136/89 68/39 56-88 16-20
7-13 112/71 76/46 68-85 16-22
7-14 139/86 76/49 60-91 14-20
7-15 131/85 68/40 79-91 16-20
7-16 114/72 64/46 63-76 16-20
7-17 129/80 77/40 50-93 16-20
7-18 131/89 60/46 78-93 14-20
7-19 140/93 75/48 67-85 16-20
7-20 128/71 81/56 60-93 16-20
7-21 126/82 69/45 59-90 14-20
6-5 2610/2525 CCs
6-24 ...not available
Blood pressure readings
BPs daily highs and lows - Pulse/res. daily range
8-5 126/92 110/86 60-84 14-20
8-6 138/68 72/46 68-96 18-22
8-7 116/80 68/46 74-82 18-20
8-8 124/72 70/58 62-86 18-20
8-9 128/74 72/52 72-98 18-22
8-10 126/90 68/48 60-74 18-20
8-11 126/94 50/36 72/86 14-18
8-12 120/74 64/42 78/96 18-20
8-13 118/96 80/58 64/78 18-20
8-14 134/92 90/50 70/100 14-22
8-15 118/80 64/46 64/88 16-20
8-16 120/78 92/55 63/92 16-18
8-17 122/88 98/64 66/89 18-22
8-18 134/89 44/33 84/104 18-20
Week 13 & 14
Case study: John McKinzie
8-19-03 Slept good. BP still on the low side this morning.
8-20 Had a restless night. Pain level between 7-8 throughout the day.
Felt cold in the morning and afternoon hours. Low grade temp in the
8-21 Slept fair. Light headed most of the day. Pain level 8.
8-22 Restless night. Pain level still elevated today, reaching 8+. NOTE:
Still having trouble with skin behind ears. Also, having a lot of skin
8-23 Slept fair. Pain level high today.
8-24 Slept fair. Pain level remains high.
8-25 Slept good. Pain level down in morning hours. Pain level: 2. Pain
increased to between 7-8 in evening hours.
8-26 Slept good. Pain increased as the day went on.
8-27 Slept good. Went to the hospital due to skin problems. NOTE: Doctor
was very intrigued by the changes he saw. He seems to think that the
skin breaking out is due to a chemical change occurring.
8-28 Slept good. Pain level averaged an 8 today.
8-29 Slept good. Experimented with blowing up a balloon and was able to
blow it up to the size of a grapefruit. Pain level: 7-8. Low grade temp.
8-30 Had a very restless night. NOTE: Bed accidentally slid off of the
incline today. Will be back on the incline as soon as possible.
8-31 Did not sleep well at all. NOTE: Was able to get back on the
incline today. Pain level: 7-8.
9-1 Slept fair. No other changes.
BP's daily highs and lows - pulse/res. daily range
8-19 105/74 60/40 61-76 16-18
8-20 139/94 103/63 63-103 16-20
8-21 127/80 73/40 46-93 20-22
8-22 128/98 84/55 68-80 18-20
8-23 133/81 71/45 60-100 16-22
8-24 110/60 72/45 65-94 20-22
8-25 118/82 82/58 69-76 18-20
8-26 128/87 97/72 68-92 14-22
8-27 117/82 104/60 70-95 16-18
8-28 127/81 86/58 69-81 16-20
8-29 123/80 66/44 72-93 14-18
8-30 111/68 76/52 72-82 16-20
8-31 115/90 82/36 68-86 18-20
9-01 116/82 82/50 77-97 18-20
Some of the notes were unfortunately lost
I am very sorry that I haven't replied to you sooner. My computer blew up on me and I was without one for almost one month also I haven't been feeling well I've had an ongoing battle with bladder infections etc. However I'm going to see a specialist on May 13th regarding bladder and kidneys hopefully something might be done about these infection
As I explained in my first email to you I am a male sixty year old C-4 quadriplegic 17 years post injury. I also have Sleep Apnea which requires me to be on a Bi-Pap machine at night to assist with my inhalation and exhalation. I'm on a maintenance dose of antibiotics for my ongoing bladder infections. Septa tablets times 2 daily. I have had continual problems with my bowels ever since my accident and bowel routines take up to four hours every third day.
I take a daily dose of stool softeners 2 tablespoons of Lactulose 2 Colace capsules daily and two teaspoons of Prodium. I have high blood pressure and I'm on Cozaar 50mg daily. I have tried many natural remedies over the years trying to find some relief from these symptoms some have seemed to help some didn't. I take vitamins and colloidal minerals daily which seem to help some. I also take garlic capsules and ceyenne capsules which also seem to help.
I have Care Givers on a 24/7 basis and I no longer use suppositories for my bowel routines instead I use a water flushing system I started sleeping in the inclined position on March 1st 1999. My bed has a trend and reverse trend mode on it and I just have my Care Giver set it at six degrees which is approximately six in off the floor. To date I have noticed very little difference.
The first week I had sore shoulders and neck but after that they quit bothering me. I have noticed that I seem to have a little more sensation in my lower extremities Also I definitely have a little more feeling on the inside of my arms from the arm pits down to the inside of my elbows.
In the second month I thought my blood pressure had gone down but if it did it was only temporary as it is now back up to where it was when I started.
I do believe that I have noticed a slow but progressively better and faster result in my bowel routines and I do think that my body thermostat seems to be closer to normal than it has ever been since my accident I apologize for not contacting you sooner and not using the form you sent me for reporting (I lost it when my computer crashed) so if you send me a new one I will use it from now on and also I will try to report on a more regular basis health permitting I fully intend to keep on sleeping with my bed in the inclined position even if I think it isn't helping as I'm finding it a more comfortable way to sleep. Yours truly Gale.Add a comment
Start of therapy: Date__April 16___________1999__
HEIGHT: 6' 1" WEIGHT: 150 lbs DATE OF BIRTH: /59 AGE: 39
MY MEDICAL CONDITIONS ARE LISTED AS FOLLOWS:--
I am paralyzed from the waist down, after long periods in the wheelchair my feet become swollen,
MY CURRENT PROBLEMS ARE LISTED AS FOLLOWS:-- the main problem is having to wear a plastic body cast when i am out of bed and slight pain in my lower back where the injury is
MY PARTICULAR CIRCUMSTANCES ARE AS FOLLOWS:--
I broke my back at t-10 to t-12 and was operated on january 28th, 1999. harrington rods were inserted in my back-the spinal cord was completely severed On April 18th I had the bed elevated 6 degrees from the horizontal. Below are the First diary entries.
1st week notes diary entry dates:_April 19 to April 25
the temperature in my legs is higher now and i sweat a lot while sleeping. the spasms in my legs have also increased by about 30%. i have no discomfort and did not have any problem adapting to the new sleep angle. i actually believe I am sleeping more soundly.
2nd week notes diary entry dates: April 25 to May 2
the temperature in my legs has remained the same and the spasm levels in my legs is also the same. Now I am experiencing spasms in my lower torso that
cause me to almost double over. The pain level has not increased. I still sleep very soundly.
fortnightly reviews (2 WEEKS) diary entry dates:_May 3 to May 17
My legs stay warm all the time now. I also have more feeling internally, I can feel the movement in my hip joints when I move my legs. I also have a tingling feeling in my legs that wasn’t there before. I am able to urinate more often without using a catheter. I am also able to contract my lower back muscles.
fortnightly reviews diary entry dates: May 18 to June 1
I am beginning to have some feeling on my buttocks and my legs sweat a lot when I am sleeping. I also am experiencing some tingling in my feet
when I go to bed. My bowel movements have become much easier and more regular. I also have a lot more pain in my lower back than I used to.
fortnightly reviews diary entry dates: June 2 to June 16
i'm sleeping much better than ever and the spasms in my legs have become stronger and more intense but shorter in length. the pain in my lower
back has leveled off. the area of sensation is about an inch lower than it was a month ago.
fortnightly reviews diary entry dates:
June 17 to July 1
i have much more feeling internally as far as my bladder and hip joints. the pain in my lower back has decreased somewhat and i'm not taking as many pain killers as in the past. i have much more of an appetite now.
fortnightly reviews diary entry dates: July 2 to July 16
I have fewer spasms in my legs now but they're more intense than ever with my legs straightening out all the way and my toes spreading. the pain in my back is still decreasing. the area of sensation is now at my belly button. at the time of the accident is was about 2 inches above it.
fortnightly reviews diary entry dates: July 17 to July 31
the pain in my lower back is hardly there at all and i only use pain killers at night to help me sleep. i can now feel my bladder when it's full and have much more consistent levels of urine when i use the bathroom. bowel movements have become much easier and i am getting more sensation internally. the area of sensation has moved to about 1/2 inch
below my belly button.
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.
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.Add a comment
Julian suffered a complete spinal cord injury at C6&C7 Julian broke his neck in a diving accident, and like John made little progress in the two years after his accident. When I met Julian his hands were locked in a fist and his legs were so rigid that I could not cross either leg over the other to test his reflexes. Julian suffered a constant urine infection and was unable to maintain his own body temperature. He had pneumonia three times since his accident.
Before joining the bed trial in August 1996 Julian had no feeling below his armpits but has, since starting this therapy made unprecedented progress, and has regained his ability to feel when touched on any part of his body.
His hands have become open and relaxed and he is able to grip and feel a pen in either hand, now that he has started to write again.
His muscle spasms have improved and are no longer a problem while resting on the bed. Urine infections are extremely rare and he is able to maintain his own body temperature.
Upper body strength has improved immensely and his toes have started to move on occasions. He used to pass out when standing in a frame, but no longer suffers from this problem and is able to stand vertically for up to seven hours. His upper body strength is so strong now that he is able to do sit-ups. There is well-documented evidence of other improvements and Julian like John continues to grow stronger as each day passes.
Andrew Fletcher November 1997
Julian: Complete Spinal cord injury at C6 and C7.
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.
Andrew K Fletcher holds the master tape.
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.
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!"
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.Add a comment