Osteogenesis Imperfecta Support Group
Osteogenesis imperfecta is a group of genetic bone disorders. It is one of the brittle bone diseases. People with OI either have less collagen than normal or the quality is poorer than normal. As collagen is an important protein in bone structure this impairment causes those with the condition to have weak or fragile bones.
I was born in '57. I was diagnosed in '59(2 breaks too close). I got type l. When I was diagnosed there were only 4 types known to medical science. I studied & learned all I could about types l-lV. There are said to be 8 types now. However They may have discovered the version or "knock-off" of the TYPE but have yet discovered the gene that causes them. I gotta tell ya, all I am concerned with is type l.
'Osteogenesis Imperfecta' as it's known in Greek (imperfect bone formation). If you were to look, or research you would be(as I was)taken aback by the anomalies
in skeletal mutation. Their is a disease that causes your joint material,tendons & cartilege literally turn to bone.
I have had over 100 fractures in my lifetime. Of-course the high number only means that I fractured the same bones numerous times each. For example I have broken My right leg 13 times including my last which was shattered patellar fractures, tendon ruptures. torn loose from their attachment positions. Tendons don't work well when they are unattached! I am on My third attempt at SSI benefits. I worked as a n auto technician for thirty years. I began noticing what My OI Doc (Dr. Morgan Colbert-deceased)had taught me. "Once I got into my 40's if not earlier I would begin having serious joint problems. Primarily Chronic to acute pain(osteoarthritis).My eyesight would become a problem. I would be open to the possibility of Glaucoma. I would develope back problems. Including scoliosis(curvature of the spine. I would more likely than not have osteoporosis by the time I was 50. I have it all over. You cain't describe your pain, your anguish, your depression because the farther I get along the more f#@%&$g diseases i got.
'Osteogenesis Imperfecta' as it's known in Greek (imperfect bone formation). If you were to look, or research you would be(as I was)taken aback by the anomalies
in skeletal mutation. Their is a disease that causes your joint material,tendons & cartilege literally turn to bone.
I have had over 100 fractures in my lifetime. Of-course the high number only means that I fractured the same bones numerous times each. For example I have broken My right leg 13 times including my last which was shattered patellar fractures, tendon ruptures. torn loose from their attachment positions. Tendons don't work well when they are unattached! I am on My third attempt at SSI benefits. I worked as a n auto technician for thirty years. I began noticing what My OI Doc (Dr. Morgan Colbert-deceased)had taught me. "Once I got into my 40's if not earlier I would begin having serious joint problems. Primarily Chronic to acute pain(osteoarthritis).My eyesight would become a problem. I would be open to the possibility of Glaucoma. I would develope back problems. Including scoliosis(curvature of the spine. I would more likely than not have osteoporosis by the time I was 50. I have it all over. You cain't describe your pain, your anguish, your depression because the farther I get along the more f#@%&$g diseases i got.
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My 6mo twin DD's are EBF and just started rice cereal on the first. Everything has been going fine except this morning one of them had a diaper rash (lots of redness around her anus). I read this as one of the signs of an allergy. BUT I did just buy a different brand diaper yesterday (which they have used randomly before w/no issues). Do you think its the cereal or the diaper? Im ready to start...
My rationale today is that biochemical processes that occur in health people occur in the bodies of people like us. What does this mean. There are two American who believe in extreme exercise and doing extreme things. I don't recall their names. I saw them on a History Channel documentary. They were 40 years old when making the documentary. Because of bashing bricks with their hands and arms, lifting hundreds of pounds weights, and breaking bricks with their heads, the end result was bones four times the density and eight times the strength of the average person's bones. I reason that if I exercise extremely relative to my tiny 3 foot 10 inc body, that it would seem that similar processes would occur in my body as has occurred in these two men. I was right.
Nine years ago my spine was bending to the left in the lower spine to such a degree that my head, in a few years, would be down around my left hip. I am responsible for the care of my wife who had severe bipolar disorder and the prognosis was that the severity of her psychotic events would ultimately land her in anursing home where she would drift in an out of awareness of her world around her.
I was a researcher for 35 years and I researched her condition and when her diagnosis was made eleven years ago, I started a journal in which I recorded everything I could think of about my wife's illness. In brief, she has not experienced psychosis in four years. She is thriving and is a marriage celebrant and marries a dozen people each month. I have managed her care and am paid by the government to care for her. Most days it's hard to believe she has a mental illness.
I mention my wife because nine years ago I knew how much she was depending on me. She could do no household chores and attempted suicide a dozen times. You might say she was as mad as a hatter, but I didn't see it that way. She became extremely intolerant to abrasive experiences. I treated her as if she were the healthiest person on earth while accepting full responsibility for our lawn care, household duties, everything.
What this also meant is I couldn't be having my head on the cushion beside my hip. So I designed and constructed a stretching board, bought a set of weights and essentially, started pulling myself apart. I strapped my hips to the board with a weight belt anchored to the board under a cardboard tube. My tailbone touched the middle of my spine the curving was so extreme.
It's been nine, nearly ten years since starting to use this board. My hips dislocated when I started, they are now tight. My calves were five inches around whereas now they are eight inches around. Nine years ago my tivias fractured on titanium rods when my heel rested against the mattress. Today I carry ten pounds of rubbish on my lower legs while wheeling them back to the trash bin and i rarely feel pain in my tibias. The titanium rods were sliding out of the bones (1 tenth of a milimeter each year). Since then, a bone callus has formed around the rod and it no longer moves.
I'm stronger now than I have ever been. I had severe Osteogenesis Imperfecta though the numbers still throw me because they don't run in ascending or descending order.
My specialists advised me to avoid fractures. They suggested that extreme exercising would exacerbate my condition. This hasn't been the case until, that is, last November.
Last November my wife was having depression episodes and needed desperately for the walls of our two bedrooms to be painted as well as the hall and ceiling. I can't work. I care for my wife and so we live on pensions. To hire painters would cost us $3,000. But if the rooms weren't painted, she could go backwards. Her children were planning on Visiting on Christmas and though our house is worth over a quarter of a million dollars, it is a small three bedroom home built in the 1950s. Its value is from where it is not for what it is. If we tore down the house, the lot would still be worth $300,000. But she was ashamed of our house.
I got on the floor and devised ways of moving huge cabinets one bedroom to paint the other and used poles with brushes and rollers on their ends to do the job.
Five weeks later, job done. The rooms feel like we are at a posh hotel. But I tore six tendons in my shoulders and though I followed the rules established by my doctor, my body has declined in strength and flexibility since he said, "No more exercising."
I started this group at this time because I am alone in what ever I do. If we have financial problems, I keep them to myself and find a way out without talking about it with my wife. She is perfectly healthy and sane but i know the illness is lurking behind our lives waiting to pounce. I will not allow her or I to experience her illness again as it was 9 to 4 years ago.
Three days ago I returned to my old extreme exercising ways. I studied the physiology associated with repetitive motion syndrome and worked out an exercise program that will use the same injured tendons but in different ways. One of those ways is the wheel at first short distances (one mile each day) and push as hard as I am able to tolerate the pain. The pain is intense, so intense that I can't stop moaning wheeling in the middle of the road. With each push, my shoulders behind the arm pits (teres Minor), the deltoids tendons, and the trapesius. On arriving home it took 20 pushes to wheel up a 12 foot ramp. Six months ago it took five pushes.
The question is it old age (I'm 67), OI, or is it a poorly managed injury by doctors biased toward people with OL, or biased toward me with OI? I suspect it's poor management. At least I'm putting all my chips on this bet. In the mean time, I'm looking for support as I do this horribly painful series of exercises the first of which is wheeling a mile a day as hard as I am able.
I stopped stretching my spine on my board with pulleys because this is what my doctor advised. I can't believe I have started listenting to doctors again. My mother was told I'd be dead by two, then five, then eight. Promises, promises is what my mother must have thought. The son-of-a-bitch couldn't stop the fractures but he could give my mother hope.
I was terrified when I heard the doctor console my mother when I was four years old, as if I weren't in the room and spoke no English. Now different doctors are trying to console me which makes me terrified once again. What they cannot cure they manage in a most erratic way.
Well, I'm back in the saddle again.
So my advice to you is to exercise, take magnesium, fish oil, calcium, and vitamin D until it comes out your wazoo and it will. I'm having to start out like a baby again. My shoulders are all screwed up acccording to the ultrasound. But the cure is painful and requires sensitive coordination and a quick awareness so the tendons do not tear.
I wheeled the mile for the first time two days ago when I could only do a half mile. I waited a day and today I did the full mile and groaned and grunted all the way home like a baby. And though my back muscles hurt, my tendons do not. They will hurt like blue blazes tomorrow.
Actually, I can't advise anyone to do anything. it might just be me, though I doubt it. It took six years for my hips to stop dislocating but i persisted. It sometimes took five minutes to sit up as the hips slowly moved into their sockets. But all the research indicated that I was right.
There is one unique talent I have. I am extremely coordinated. I have a strong sense of position and self. For example, when I wheel with a full cup of coffee in my hand on my way to my office in the house and in the dark, I don't spill a drop though my floor is uneven. I recently trimmed photographs I printed for a relative and there was no darkness from the photo...no color on the white and no white on the colored photo. My hand eye coordination is beyond my understanding. I learned to play the piano in ten years after the age of 55. This advantage may enable me to isolate muscle movements so I may wheel the chair as if there is no tomorrow and don't tear injured tendons. So I take that back about exercising. this is my story and what I'm up against and I need to share it with someone and since I live in isolation with my wife on an Island near Australia, the responsibility for listening is given to you by me. I'm terrified that I may be making the biggest mistake of my life. If the tendons tear, I won't be able to continue caring for my wife. At the same time, if I don't exercise my body will return to a dilapidated state to where it was nine years ago and sooner rather than later. I go with the exercise bit because in that there is a chance to give my wife another ten or fifteen years of wonder and dreams.
recently i had a huge operation to remove several teeth from my mouth. due to my small statue all my teeth did not come out so they were growing into my jaw and sinus. due to my condition i had many risks to face..... luckily operation was a success.
another issue i struggle with is people judging me because i appear normal so they assume i am normal.a perfect example is when i am in a crowded bus and seated an adult lady expect m e to give up my seat for her, but if i dnt i am labeled as not having manners. when infact i cnt give up my seat as i cnt stand for long periods of time and fear of falling and because i dislocated my knee twice in a bus jus by it moving (ITS TRUE!!). OI can b deceiving
but i am thankful that i didnot have alot of breaks. i live a healthy lifestyle (try too). i cnt play any sport but go swimming. as i am a student i go dancing with my friends and it helps to strengthen my muscles. i am totally horrible with balancing, i cnt wear heels as my balance is still not correct but have started walking on wedges which helped me with my balancing problems. i take care of my weight, i never go above 50 kgs nor below 46 kgs. i take no medication although during winters joint pain become a huge problem