Device Helps MS Patient Float Like A Butterfly

ATLANTA -- Two years after her multiple sclerosis make walking exhausting for her, Tiffany Vinson has found something that has given her back her mobility.
Vinson didn't know what to think two years ago when she began to need help walking the stairs. She learned she had multiple sclerosis, a disease of the nervous system that, in Tiffany's case, made walking a struggle.
Today, Tiffany Vinson is moving forward, and anxious to show the way to others. This is the story of a lady, and her family, and a new device, and a tattoo.
Even after Tiffany Vinson was told she had multiple sclerosis she was all about moving forward.
"What's the next step?" Tiffany wondered. "I didn't have a moment where I was depressed or anything of that nature. It's just like, 'Okay, how do I live? How do I get it moving, so that I can provide for my two boys and my husband?' "
She investigated a device made by Hanger Prosthetics and Orthotics called the Walk Aide.
"For a person with MS, say," said Roger Feldman of Hanger Prosthetics. "The brain is not sending the correct signal to the muscle and nerve to function correctly. And this device takes the place of the brain."
The device helps people who've had strokes, spinal cord injury, traumatic brain injury, cerebral palsy and multiple sclerosis. It's being used by Iraq and Afghanistan war veterans -- but it is not covered by insurance.
Tiffany's MS had partially paralyzed her left foot. With this device, she could walk normally.
To make sure the Walk Aide works best for the individual patient, first that patient takes a test walk and his or her gait is recorded on the device. It's then uploaded to a computer where clinicians tweak it and send it back to that device so that it'll work the most efficiently for that individual patient.
Tiffany is moving forward.
"It's been amazing" she said. "It's been God's greatest gift to me. I have been able to walk and even make a turn sometimes."
Now about the tattoo. Tiffany put it there to cover a bad burn she got as a child. The butterfly has two dots -- exactly where the Walk Aide is supposed to be attached.

The Gift of Cerebral Palsy

A big thank you to Susie for allowing me to have this blog on her site, you guys will see more of me so i will start by telling you a little aout me.
I am 31. I have Diplegic Cerebral Palsy (this is my official diagnosos but i'm afraid that i disagree as both arms and legs are affected). My Mum had a placental abruption with 6 weeks to go and the hospital delayed delivery for some hours. Apparently i "died" for 5 minutes - well needless to say the good Lord was not ready for me just yet! I like to think that, if i haven't achieved it yet, there is a good reason why i have to stay here and do stuff, either that or pass on some good attitude towards having CP, maybe being able to inspire others.
I have had numerous surgeries (as im sure most of us have) most at Oswestry Orthpaedic Hospital, under a Cosultant called Mr. John Patrick (any of you recognise thise PLEASE let me know!) Most of them were very well done and recovery was good. However in 1988 it all went horribly wrong - i will put that in my next blog.
I am married to John, for 7 years and we are still madly in love, he is a very special man and a very very wonderful husband. He cares for me and dotes on me like ive never known anyone to do with anyone before. He reads me so well and knows just what to do to help. I didnt know such depth of love was possible - he is my entire life.

Upon Reflection

Well what an interesting week I have had and a busy one at that, Town Centre Management is always busy no matter what time of year it is, although this year it seems particularly busy not only because of The Stockton International Riverside Festival starting next week, but the mad preparations for our Christmas festival. Now I know some of you might be thinking organising Christmas in July but you would be surprised how soon we have to start this. In fact no sooner does it finish at Christmas we start planning the next one, and we always aim to be bigger and better than the last. We also have our Farmers market again this month and I am hoping the weather we are having at the moment stays for next week, as I know it has been very popular.
I know I was talking to my manager and we were discussing how busy we were and she was saying that recently she was getting hope and thinking wow how do we manage to cope with being so busy, and I said, I am not sure, but some how we do manage it, then she said that she was thinking of me one particular night and thinking why am I moaning just look at Susie she does it, she copes so if she can cope then the rest of us should, “you are an example to us all” I was quite touched by this and at first I didn’t really think about it, but then during one of my reflective moments, I thought ah I have actually achieved one of my life goals in that one moment, what I mean is if I have moved and inspired someone to take a step back from life and see that no matter how hard it becomes there is always a light at the end of the tunnel, it proves that I have inspired someone to see that in life above all adversity, that you can take stock and carry on and find the solution to what’s facing you, you just have to step back everyone and then and re group.

That is a major thing that I have learnt in my life, that ok when you have the confidence you motor like a train and run with it, but in actual fact when you run with it, do you start to loose what you are aiming for. Here is an example of what I mean, this week I have had a break from my Bowen therapy and I have had an intense session with my own Physio, to see how I was progressing. I am glad I had this session because I seem to of had a lot of changes happen to my whole body alignment and gait pattern, and therefore we had to assess the changes and make some changes to things. Anyway I have got some work to do with my gait and positioning as I have some rotation, it seems that I am rotating when walking from my trunk, which needs correcting.

During the session going back to my confidence when I really think about what I am doing I have a really strong control and can virtually stop the rotation but once I get confidence and start running off with it I go back to my old ways and loose the control a little, when we did some work in the bars I had 2 Physio’s with me and that was because my Physio wanted to get me to understand the difference in position because with me I have to actually be moved into that position and then passively moved through it for me to understand it. Now when I talk about understanding I don’t mean when someone asks me to do something or asks a question and then says have I understood it, I mean for my brain to understand what is being asked to do eg is the brain allowing the movement signal to connect. Once this has happened you can physically see that my brain has connected it is quite an amazing thing to see, because I have gone from moving like I always have done, to moving in completely in a different way. This is why I have to regroup all the time so to speak so that I get the correct messages to allow me to move in a normal way, and allow me to achieve my fully potential.

Hands-free wheelchair lets Murderball athletes focus on hitting each other

Anyone who's seen Murderball knows how serious wheelchair athletics can be, but it's always struck me as more than a little inefficient that the athletes need to use their hands to both play ball and steer their wheelchairs. Short of giving them extra arms, is there anything that can be done about this? A group of designers thinks so, creating this Balance Sport Wheelchair that turns according to which way the person leans, sort of like a Segway. Users presumably still have to push to get their speed up, but the steering's all done by shifting weight. And to stop, just lean back.

Ricky Biddle, Eric Larson and Ben Shao conceived the design, which can be customized to its owner, since paraplegics vary greatly in their mobility. Someone with very limited movement might adjust the brake and turning response so they're activated by even slight leans, while those with more mobility would probably prefer a greater range. Looks like a great idea to us, but if there are any disabled readers out there, we'd love to know your thoughts.

My second scan

A second scan was scheduled in four weeks time. By this time I was presumed to be nearly 8 or 9 weeks pregnant. On arrival at the hospital, I was a bit excited to find out how the twins where doing, as by this time I was getting used to the idea of being pregnant, even looking at baby clothes in shops, friends and people who knew, wished me well. My mind was going over and over the prospect of having twins. And I hoped my disability would not interfere to much with my pregnancy.

As my second ultrasound scan got underway, I noticed my obstetrician was really concentrating on the images showing on a monitor. She was moving the scan probe all over my tummy with a curious expression on her face. I begun to feel nervous and uneasy, thinking something terrible was wrong. When I am nervous, I begin to have a lot of involuntary shaky movements. I asked if anything was wrong, and was finally told that I was expecting Triplets. One Embryo had been hiding behind the other two. This was yet another bombshell which shocked me to the core. My obstetrician now voiced major concerns about me carrying triplets. She informed me I would need to be referred to a Professor of Foetal Medicine, for examination to see what his medical opinion was. She discussed with me, that he may advise me to reduce the pregnancy by removing an embryo, leaving two remaining. Taking in all this new information was almost impossible. Physically I was experiencing an increase in shaky movements, the more I tried to relax, the more tense I became in every muscle. Mentally, I was fearing my tension spasms would harm my babies, and for the first time, began to have feelings of not being quite in control with what was happening to me.

My appointment to see the professor was arranged very quickly, the very next day in fact. Upon meeting him for the first time, he came across very friendly and down to earth. But I felt very nervous and worried. The Professor was well known in his profession, as he was involved in the pioneering of operating on a foetus while still in the womb. I was examined by the Professor and a couple of his colleagues. They spent some time studying ultrasound images. I was becoming increasingly anxious. The Professor, approached the bed where I was laying, with a serious look on his face. He spoke in a matter-of-fact manner, telling me I would not be able to carry three babies. He said, the space between my pelvis and breast bone was very small, and if I carried all three babies, they would be born dead or disabled, and my heart and lungs could be pushed out of place as the pregnancy progressed. At this point I was feeling devastated, and crying uncontrollably. My involuntary movements went from moderate to severe. The Professor's face, took on an expression of contempt an disdain. With me feeling and looking wretched, he announced it may be best to terminate the entire triplet pregnancy altogether. Hearing this, I voiced that I must try to at least carry one baby. He then asked each person in the room their opinion. Everyone present adhered to the Professor's evaluation of the situation, except my obstetrician. My obstetrician, god bless her, said 'woman with Cerebral Palsy are known to have babies'. It was then decided I would undergo an embryo reduction procedure to reduce the pregnancy from three to one.

The terminations would be carried out early the next morning. On the way home in the car, I felt very alone and isolated, as on top of everything, my relationship with my boyfriend had broken down. No-one had asked me, what I thought about the terminations, how I was feeling or anything. As soon as I got home, I felt terrible, trapped in something out of my control. The discussion at hospital had been in the context, here is a woman with CP presenting a triplet pregnancy, deal with it quickly. No debate on any other course of action. There was also never any mention of how I was feeling emotionally or otherwise. I had always been against abortion, yet here was I, bereaved at the thought of having two babies killed. In utter desperation, I telephoned the College of obstetricians and asked if there was an obstetrician anywhere in the UK who specialised in pregnancy and disabled woman. I was urgently seeking a second opinion. There is not one Obstetrician in the UK who has extensive knowledge on disability and pregnancy.

Embryo reduction, is a procedure first used when IVF treatment produces multiple pregnancies. The procedure is performed by holding an ultrasound transducer on the patients belly; injecting a needle and manoeuvring it into a position near the fatal heart; and drawing out the metal rod at the core of the needle and replacing it with the vial of potassium chloride that stops the fatal heart. The dead foetuses gradually dissolve and reabsorb into the bloodstream over a three month or so period.

The next morning I felt completely empty and saddened by what was going to happen. On arrival at the hospital I was shown into a medical room where nurses were busy making preparations. As I was helped onto the bed, my legs felt like jelly. Not much was said either. The Professor entered the room with an air of arrogance. During the procedure I felt pain. I was also shaking quite a bit, which the Professor frowned upon and almost lost his patience with me. I caught a glimpse of the monitor and saw the needle inject the babies hearts causing them to stop beating. My heart sank further. When it was all over, the Professor stood up, and said 'two dead, one alive', and left the room. Another sad car journey home, two babies less and the remaining one under threatened miscarriage.

The remaining embryo was the largest of the triplets, so had a good chance of survival. A couple of weeks after the two terminations, I began to feel a bit calmer about the baby I was carrying. Reaching the first trimester (3 month period), was a milestone for me. I was now three months pregnant, and felt quite well. I looked forward to my ante-natal appointments, to see how the baby was progressing. My obstetrician always assured me everything was going well. I was scanned more frequently than usual, as they had to check the other two embryos were dissolving. It was so comforting seeing the baby growing inside me. During scans, measurements were taken, which showed my baby was developing normally.


My growing bump

As the weeks passed I noticed my tummy expanding. I started to rub moisturiser on my tummy each day to avoid stretch marks. At the time I became pregnant, I had been studying a diploma course on counselling. To study, I would sit at my desk most of they day typing. At around 6 months pregnant, I begun to feel very uncomfortable sitting so upright in my wheelchair all the time. I begun to get some pain in the pit of stomach, and the only way to relieve the discomfort was to lay down on my bed. One day I was in more pain than usual and went to the hospital. After a scan, I was told everything was fine, and the pain was probably due to ligaments stretching. I eventually had to pack up studying, as I spent most of the time laying down to feel comfortable. When laying down watching television, I loved feeling the baby move inside me. I used to rest the television remote control on my tummy, when I would feel a fluttery feeling across my bump, and suddenly the remote control was tossed off my tummy where the baby had kicked.

One morning I discovered a slight spotting of blood on my underwear. Panic ran through me, and we immediately made our way to the hospital. I was seen as soon as we arrived. The results of a scan showed everything was OK, but as I was by now 27 weeks pregnant there was a real concern I may go into premature labour and deliver the baby to early. I was placed in a labour ward for a few anxious hours. All this lead to an increase in spasms and involuntary movements. The tension in my muscles was so bad I became unable to pass urine which was very painful. In the end a catheter had to be inserted to empty my full bladder. Having not gone into labour I was placed on a maternity ward to be closely monitored. After a week in hospital the bleeding stopped and I was allowed home. A few weeks later at an ante Natal appointment, I was in pain again. This time, my consultant obstetrician took no chances and admitted me into hospital. At 35 weeks pregnant I was to stay in hospital until I had the baby. During the next two and half weeks, I was closely monitored. Then on the 5Th October 1994, at 11.05am, I had a Cesarean section to deliver my beautiful daughter Laura.

My first scan

A few days after doing pregnancy test, I telephoned a good friend of mine. After some discussion, we decided to get the pregnancy confirmed at a Family Planning Clinic attached to a local hospital. We went along one evening with a urine sample, and sure enough I was pregnant. I was then referred to an Obstetrician at the attached hospital. My first appointment was to meet the Obstetrician, and have my first scan. The Obstetrician scanned my tummy for a few minutes, then announced I was expecting twins. To say I was shocked, is an understatement, I was absolutely speechless. For a first spontaneous pregnancy to be twins, is unbelievable when your first told. The Obstetrician was astonished herself, but to my surprise was open minded about the situation. She mentioned in order for me to carry twins, I would probably spend most of the pregnancy in hospital for close monitoring. I was fully prepared to do what was best.

My own personal experience of pregnancy

In January 1994, I suspected I may be pregnant. My menstrual cycle had always been very regular, so when my expected period failed to start after a few days, I knew something major was going on. I decided to purchase a home pregnancy kit to confirm my suspicions. After reading the home kit instructions, I did the test. It instructed to wait 60 seconds before checking test results, I waited 30 seconds, as the suspense was overwhelming. A clear blue line was visible. I was certainly pregnant.

The thought of being pregnant sent my head spinning. I had a joyous rosy image of myself, being the proud mum of a beautiful bouncing baby, looking very happy without a care in the world. Then it suddenly dawned on me, I was pregnant, I was disabled with Cerebral Palsy, I couldn’t walk, I can be unsteady, I was in a wheelchair. Before finding out I was pregnant, I had always managed to do most things in my own way, despite my disability. Nothing bothered me, I just carried out tasks without thinking. But, a tiny Baby! Reliant on me to provide it’s every need. This was most certainly unknown territory to me,where my disability was concerned. My mind kept on going from immense elation to a feeling of despair, and visa versa.

I had disabled friends who had children, but their disability was different to mine. Even those I knew with CP, the level of how their CP affected them was not the same as mine. At the back of mind I imagined myself handling a baby pretty well, in a manner that suited me in my own home. But, at the forefront of my mind was a daunting road ahead. I had to get through the next nine months of pregnancy first.

Cerebral Palsy and Pregnancy

Because Cerebral Palsy is congenital, it is not a disease, and never contagious so can not be passed on. There is no evidence to suggest that Cerebral Palsy affects fertility. Therefore, there should be no reason why women with Cerebral Palsy should not consider having children, apart from individual concerns. Some pregnant women, with CP experience temporary changes to their disability during pregnancy, such as an increase in their spasms. If carrying to full term becomes difficult, an orthopedic specialist may be worth consulting.


Ante-natal care

Whether your routine ante-natal care takes place at a hospital or doctor's surgery, to accommodate any physical needs regarding your Cerebral Palsy, you may have to check access and if the examination bed is height adjustable. A community midwife may also be able to visit you at home. If your physically impairments make examinations feel uncomfortable, discuss using a different positions which may make medical procedures easier.


During Pregnancy

Every woman’s experience of pregnancy is different. There are so many changes going on inside the body while carrying a baby. From morning sickness and constipation, to the stretching of ligaments, which can be painful. You may find you need to enlist a support person when pregnant, if morning sickness is severe, or tiredness occurs in late pregnancy, making normal tasks more strenuous. In late pregnancy, if there is a need to rest more and more, a recliner may seem most comfortable, rather than a bed.

Caution must given if you take drugs for Cerebral Palsy, or Epilepsy, as certain medications may effect foetal development, and should always be discussed with an obstetrician or your GP.



Preparing for the Birth

Preparing for the birth is inevitable, and will need as much detail as possible. As with the majority of births, the order of things can go into disarray. Keep an open mind, as the best laid plans may have to be abandoned due to unexpected changes. Mum, knows best, and with plenty of discussion and support, things should go smoothly. We would all like to be able to give birth naturally, but it may not always be possible. A Cesarean section can be performed for many reasons, and is an assured option of a safe delivery.



Useful Links

Disability, Pregnancy & Parenthood international




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What Does it Feel Like?

After Living a life with a physical disability of Cerebral Palsy, and a learning disability, dyslexia I realize many things. First I realize how I have gone the extra mile in everything I have done and accomplished in my life. Secondly, I've learned about being labelled, fighting the system, and coming out a winner with more self-worth, self confidence, and dignity to keep on keeping on

I have had people show me their BIOS and prejudice; attitudes, and I have reasoned and maneuvered around, about, and above all the insensitivity's of human nature. I did not let people, places or things put there mark or classification on me! I left them with a mark! I left them with the teaching and knowledge: that I am like everyone else in this world. I may have C.P. and a slight inconvenience, but I am just like you! I have also instructed and imparted, by my deeds and words to be treated with dignity and respect. I have taught and educated by the path that I have taken. I have not only been assertive, but through my own tolerance, love, sincerity, kindness, and determination to light up and wake up this world. Through my actions, I have climbed the highest mountain. And I will continue to climb! I will not sit back and lethargically let people step over me any time they wish. I will teach by being me, compassion for all!

Why Can't People Understand

Today was another power punching day of more realization and lesson learning. I wanted to write to make time to release and let go of all the things that took place in my day. I ponder my soul in wonderment of why people cannot understand what those who have learning disabilities or physical disabilities go through to try and fit in to life and society.

We work 10 times harder to fit in, in order to make some kind of normalcy of our life. We do this for ourselves, just to be included in the community of our world just to be and feel like normal people who fit in If man-kind only knew!

If they only new the effort we put forth! If only they knew inwardly what we go through daily, if they could feel what we feel what we feel every day of our lives.

If they had to cope and deal with the challenges we have before us, with our disabilities, and tried to put forth the effort we do, on a daily basis physically, emotionally, and spiritually, I don't think they could handle it!I don't think they could or would be able to keep up the brave front.  I don't think they could constantly keep smiling. I don't think they could handle the inner emotions we go through I really personally don't think they could last very long!

What do you think I pose this question to all of you reading this entry.

A Growing Day

Today was a day full of challenges.  A day full of speaking up for myself, and a day trying to get my thoughts and feeling across to others.   It was a day packed with punch; as I dealt with difficult personalities while explaining my perception and situations as they occured.

Even though it was very stressful, I was able to give to others in a kind and gentle way. I was able to give hope, and I was able to share from my heart that they are not alone in there feelings. I was able to come through this day feeling grateful, and thankful.  I was also very grateful I had someone special to listen to me and my feelings so I could let them go.

You know, at times it's not easy trying to speak up for yourself, being heard, respected, or treated equally. One has to learn to accept others and be willing to agree to diagree and let be what needs to be.  Especially when you act, and do things just like any other person in this world, but your physical body looks different than the norm- because you have C. P. since 5 months old, and an invisable learning disability, that as much as you try to educate and explain to others, they just don't ever get

Exercise pays back the effort

Hillwalking with a body hardwired for spasticity and rigidity is tough, but the mental and physical payback make it more than worthwhile, says cerebral palsy sufferer Christy Keeley. This is his story as told to Fiona Tyrrell

GROWING UP on an able-bodied street and going to an able-bodied school with cerebral palsy (CP), one of the biggest frustrations was not being able to participate in competitive sports. That said, my health story is a positive one and physical activity plays a major role in my life.

I was born with a moderate form of cerebral palsy known as diplegia. I live with tight muscles, exaggerated reflexes, rigidity, slowness, awkward movements and poor balance.

In order to move about and stay standing without falling over, my mind must be fully alert. I like to think of the mind as a sentry guarding the castle gates telling my body to "lift the foot, bend the knee, heel down, straighten out. . .". I describe it as "walking with my head".

A lapse in concentration or a tired mind means that I am liable to fall down like Humpty Dumpty. There are times when I think I could do with the help of a crane to pick me up, and a frame to straighten me out.

Exercise has been a part of my life for as long as I can remember. I had a three-wheeled bike as a child. I learned early in life about the need to do exercise and keep the limbs supple.

Now I cycle, swim and hillwalk. My bike is my prized possession. It has helped me overcome many of the restrictions the condition imposes on my body. I have cycled from Sligo to Dublin via Kerry and Wexford, as well as a tour in the south of France.

Hillwalking became a big part of my life as an adult. I have climbed Croagh Patrick, Carrauntuohill, Mount Brandon as well as Snowdon in Wales. Hillwalking, cycling and swimming are tough with a body that is hardwired for spasticity, rigidity, dodgy balance and slowness, but the payback of a positive sense of mental and physical wellbeing makes it more than worthwhile. Going to the pool and doing lanes for half an hour or, if time allows, heading for the hills and stamping over a mountain or two, are great ways of overcoming negative energy.

When people see me walking in the city they wonder how I can hillwalk. I can't explain it, but it is almost as if I switch into a different mode and walk in a different way when I put on my boots and get my Nordic sticks out.

I do my hillwalking with a great group of friends. I've climbed Carrauntuohill three times. I have to warn people not to walk behind me because there is a lot more lose scree behind me than normal.

Yes, I feel tired on the way home, but it is the kind of tiredness that has you glowing inside, glowing with an energy and zest for life that makes the effort so worthwhile. The mental and physical payback makes it worth it.

It takes me a couple of days to recover from a hill walk. I have to be sensible.

Going forward I am somewhat fearful of the frequency of rigor mortis-type attacks that affect my limbs, and bouts of fatigue, but I try not to think about this too often.

The type of wellbeing I experience is available to most people, even people with disabilities. It does take effort and discipline, but I would encourage anyone who can to do it. I think that at times people give up too quickly.

There is so much negative comment about the health system, but I've been blessed with a positive experience.

Two groups keep me going - the physiotherapists in the Central Remedial Centre and the orthotic and prosthetic department in Cappagh Hospital. That said, aside from the CP I'm a regular ordinary healthy guy.

As a kid I wanted to be as good as my peers, to keep up and be part of the gang. My parents sent me to the local national school in Rialto, which was very unusual at the time. It was only in later years that I realise what a major decision that was.

There have been challenges and difficult times, but I have had the good fortune to be able to ride the storm quite well.

Yes, CP is a physical challenge, but for me, particularly as I get older, the mental health aspect is more challenging.

One of the lifelong challenges that I face is overcoming the frustrations I feel at not being able to do all I want. My mind tells me that I should be able to compete with others on an equal footing but my body says differently.

I want to be able to climb the world's highest mountains, sail the world's roughest seas, run fast-paced marathons, swim like Mark Spitz, ride a 1200cc Kawasaki motorbike, join a feisty hillwalkers group and stay the pace, but it is not going to happen.

These lifelong frustrations seem always to be there, and while I do cope reasonably well with them I continue to struggle with my condition, and perhaps I always will.

There is so much focus on physical health and not enough on mental health. My sense is that the mental health issue is one that people tend to stay away from.

It is as if people think you can separate the two, but you can't. They are just different sides of the one coin.

For me, physical activity keeps the demons behind bars. It could be said that it is an addiction, but it is an addiction that harms no one.

Cerebral palsy: the facts

Cerebral palsy is a physical condition which affects the part of the brain that controls movement and posture. People with cerebral palsy have difficulty controlling their muscles and may move jerkily or hold themselves awkwardly.

Cerebral palsy can be caused by a number of things, such as an illness during pregnancy, a lack of oxygen as a result of complications during birth, or as a result of a serious accident or illness after birth.

The degree of severity ranges widely.

Some people are only mildly affected, taking only a little longer than others to sit up and walk. People with a moderate degree of cerebral palsy may require a wheelchair or walking aid for mobility. Some people are affected very severely, and can do very little for themselves physically.

Therapy and special aids can help people with the condition to control the movement of their muscles and maximise their ability to move.

More important than therapy however, according to Enable Ireland, is empowering people with cerebral palsy to lead independent lives.

For more information contact Enable Ireland on 01-8727155 or see www.enableireland.ie

A Bracing Study on Scoliosis

Spine specialists across the country are conducting a breakthrough trial on scoliosis or curvature of the spine.

They are studying boys and girls ages ten and older to find out if back bracing treats scoliosis and/or prevents surgery.

Dr. Charles Mehlman is one of the lead investigators in this study, the largest pediatric orthopedic clinical trial ever funded by the National Institutes of Health.

Some spines don't straighten even after years of bracing, which delays surgery to insert instruments that will do the trick.

Researchers hope to do in this trial is find out more, and it could make a big difference in helping those with this condition get the right treatment and early intervention --earlier than ever before.

“We want to find out if we have been using bracing enough or not enough,” Mehlham said.

The trial randomly assigns patients to a brace or no-brace group.

That answer is expected to come through close follow up of these patients for the next couple of years.

If back bracing doesn't appear to be enough, surgery may be suggested at younger ages to correct the condition.

The Quest to Help All

I have been doing a lot of research in the last couple of weeks on Learning Disabilities, and exercise programs for the disabled. To my regret all I have found were mostly regular Yoga programs. Sadly, I have found nothing substantial in my search. I must tell you, that I am truly appalled after all these years. The fact that there is little to no information, or programs out there geared especially for us with physical challenges shows how little we have expanded our way of thinking. There is barely any information, let alone programs for individuals with physical limitation in some way or another. Yes I found a few programs, on Yoga, but not enough to make a true difference in our society.

I ask you- when are we all going to work together for this vital cause? Am I the only person out here that does such a thing? Where did everybody else go? I ask What have you found out there in this big expansive place we call the world? I'd be interested in hearing your response.

I am very happy to announce that my chair aerobics video is now available for viewing on my web site.

In a Days Work

A few days ago, I went back to my old high school to be a guest speaker. I spoke about where I came from, and where I am today. It has been 38 years since I walked those halls. And in the process, I was deeply touched. Touched beyond words. Touched because of the person I've become, and touched because of all the strength I have had to keep moving forward. Touched, because I can see the many accomplished I have attained to give to others so freely- Nothing, Nothing my dear friends, is like giving unconditionally to other's and seeing a smile of happiness, joy, and empowerment, on their faces, or the applause they give you in return. Nothing, no money, no competition, no greed, no nothing can give you that kind of warmth, fulfillment, love, devotion, or that inner peace, happiness, and satisfaction you receives when you have given of yourself completely, and from your heart

'Revolutionary' plans for welfare

Welfare reforms due to be unveiled - including abolition of the incapacity benefit system - will "transform lives", says minister James Purnell.

The work and pensions secretary said they would offer more help to return to work, but responsibility was "vital".

There are also plans to force long-term unemployed people to work for benefits, according to a draft leaked on Friday.

Tory leader David Cameron said it was "great" the government had taken up ideas recently proposed by his party.

He promised the government the support of Conservative MPs to get the measures in the Welfare Green Paper through Parliament if they faced a rebellion by Labour backbenchers.

Speaking on the BBC's Andrew Marr show Mr Purnell said the proposals for England and Wales were "revolutionary" and would put responsibility "right at the heart of the welfare state". The worst thing about the old system was, people were given no help at all... to improve their health, to get back to work, to improve their confidence

James Purnell

The draft paper - to be published on Monday - said there could be "no right to a life on benefits" for anyone capable of working.

Mr Purnell said he welcomed Tory support because it meant doing "the right thing for the country", but said the Conservatives were placing the emphasis on responsibility without providing any support.

On incapacity benefit he said the old payments would be scrapped, claimants reassessed and a "completely different benefit" introduced.

"The worst thing about the old system was, people were given no help at all. They weren't given help to improve their health, to get back to work, to improve their confidence.

"We will make sure for the first time that everybody gets that help. And one of the revolutionary things that happen is that we will be using the benefits that we would have spent if people had stayed on the benefit... to get them back into health and back into work."

He said the government wanted to get one million people off incapacity benefit by 2015.

In February government welfare adviser David Freud suggested less than a third of the 2.7m people claiming the benefit were doing so legitimately.

'Tough choices'

Friday's leaked report said ministers were also proposing a "work for dole" scheme, requiring people to do "full-time activities" to benefit themselves and their community.

It said everyone other than severely disabled people, carers and parents of young children should be expected to look and train for work.

People who do not take up the offer of support would lose benefits, said Mr Purnell.

Giving his response to the Green Paper, Mr Cameron said: "Great - the government has taken up our ideas. I am absolutely thrilled at that.

"What (Mr Purnell) has done is very much taken the ideas we came up with in January, that are very clearly thought through and involve tough choices."

Mr Purnell said he "completely disagreed" that the proposals would be unpopular with some Labour colleagues.

"I think that people who see the way incapacity benefit or drug addiction or deep unemployment can scar communities are desperate to turn that round and when I speak to my colleagues they want a system that provides support for people, but also responsibility."

The government had already announced plans to make young people who have been out of school, training or a job for six months to do at least four weeks' "work-related activity".

The document suggests extending that to the long-term unemployed and says while it has yet to consult on how the schemes would work, they would involve "individuals engaging in a variety of full-time activities of value to themselves, their community and prospective employers."

Government cash is communication breakthrough

The government has announced a package worth over £50 million in an effort to improve services for children with communication needs.


It came as the Conservative MP John Bercow published a report into his review of the existing services for children and young people with communication needs. The review was commissioned by the government.


His report puts forward 40 recommendations aimed at ensuring that children with communication needs are identified at an early stage and that they receive better support.


Key recommendations include a “communication champion” to drive delivery of reforms and improve local performance; better training for professionals; and research into improving the life chances of children with communication needs.


Katie Caryer, a campaigner for people with communication impairments, welcomed the new funding and said: “This is an important move for children with all sorts of communication needs.


“I think we can be very happy about these developments. What I hope for is a move like this involving adults soon.”


Jon Sparkes, chief executive of the disability charity Scope, also welcomed the government's announcement and said: "Currently, thousands of children and young people who need equipment to communicate are denied their right to express themselves freely.


“The review’s recommendations will be instrumental in ensuring that disabled children and their families are no longer denied the equipment and ongoing support they need or sent from pillar to post to get it."


Children, schools and families secretary Ed Balls said: "I want to ensure that all children are supported to communicate whether they are severely impaired or because they simply need help to expand their vocabulary.


“This review will make a real difference to all children who need support at both ends of the spectrum."


The government has accepted Mr Bercow's recommendations. It will address them in an implementation plan in the autumn.

Pictured: Natalie Sides, a communication aid-user who has been involved in Scope and BT’s No Voice, No Choice campaign that helps people with communication impairments receive the equipment and support they need

Sophie walks tall after serious spinal surgery

A TEENAGE girl recovering from surgery is trying to raise awareness over a debilitating spinal condition.

Sophie Equi (16), whose father David is the managing director of the Hamilton-based restaurant Equi’s, was diagnosed with scoliosis, or curvature of the spine at the age of 14.

But she was told by a doctor that while one of her hips was more pronounced than the other, the condition was normal.

After a growth spurt a year later, however, she experienced aching pains in her lower back and the condition got worse.

She now lives in Perth and was referred to the Royal Infirmary in the city for further investigation.

X-rays showed the extent of the scoliosis and the orthopedic surgeon there did not specialise in the condition and he referred Sophie to specialists in Edinburgh.

The former St Mary’s Primary and Holy Cross pupil said this week: “During the consultation the surgeon said that the only option was to have surgery otherwise I would become permanently demobilised and in constant pain.

“That was the worst day of my life. There was also a possibility of paralysis if, during the operation, my spinal chord became damaged.”

In February, Sophie went through an eight-hour operation involving 11 specialists.

She explained: “I was sliced open from the nape of my neck to the base of my spine.

“Two long titanium rods were screwed to my spine to straighten the curves and a bone graft taken from my pelvis used to fuse my spinal vertebrae.”

The operation was a success, but she lost her appetite for weeks and the morphine prescribed for the pain caused hallucinations and side effects.

Her muscles were pulled in awkward directions during physiotherapy and she found it unpleasant, but it helped her regain the confidence to walk on her own.

Dad David said: “She has shown tremendous spirit in overcoming this problem, her recovery was remarkable and she is an inspiration to anyone having major surgery.”

Sophie added: “I had to have the operation, I couldn’t spend the rest of my life restrained by scoliosis.”

“I believe that if everyone, including GPs, parents, teachers, children and MPs had access to knowledge of scoliosis it would help tackle the problem.

“It’s not something I can turn away from, and I will be contacting a charity ‘The Scoliosis Association’ that raises money for research and raising awareness.”

Visit: http://www.sauk.org.uk

Here is a note from Dr. Loewenstein

Support the expansion of Susan Bennett’s Living With Cerebral Palsy Website and receive a free signed copy of “For the Love of Rachel: A Father’s Story”, winner of Reader Views 2007 Inspirational as well as Non-Fiction Book of the Year by David Loewenstein PhD, Professor of Psychiatry and Behavioral Sciences at the University of Miami School of Medicine. No amount is too small, but the first 5 people who contribute an amount 50 Euros The XE.com Universal Currency Converter will receive a free inscribed copy by both the author and his daughter Rachel!

Here is a note from Dr. Loewenstein:
Several months ago, I had the pleasure of meeting Susan Bennett who runs the website Living with Cerebral Palsy. Susie, who was born with Cerebral Palsy and later diagnosed with scoliosis in her 20s developed a wonderful website to provide information and support to individuals with cerebral palsy and other disabilities. Having a daughter with cerebral palsy as well as visual and hearing loss, I was intrigued with all of the useful information provided. In my subsequent conversations with Susie, I learned how committed she is to providing valuable information about CP and expanding the site to include information and support for so many other people with disabilities around the world. People like Susie help to build bridges that connect people and I am proud to contribute to building and upgrading the website that Susie has maintained for years with her modest funds. I encourage all of Susie’s readers to s upport her effort in maintaining and expanding her wonderful site. No donation is too small and all funds go to helping to expand and enhance this valuable website and the positive impact that it can make for people with disabilities and their families. We all have to stick together, so I hope that you will consider making a donation today. Wishing you many precious moments of happiness and success.

- David Loewenstein, PhD, Board Certified in Clinical Neuropsychology
Author: For the Love of Rachel: A Father’s Story www.enalan.com

Paralympian Stephen Miller publishes book

STILL only 28, disabled athlete Stephen Miller has crammed a lifetime into the last three decades.

Born with cerebral palsy, he has overcome prejudices, physical limitations and the death of a close friend to become a record-breaking gold medallist and an inspiration for hundreds of disabled athletes.

“My friends say I’m way too young to have an autobiography yet,” laughs Stephen, as he sits on the sofa at the home he shares with his parents Ros and John.

“It’s been really hard work and it’s taken me two years but I’m glad I did it.”

The front room in the semi-detached house in Cramlington is a showcase of Stephen’s triumphant sports career.

There are two glass cabinets crammed with medals, including his three gold Paralympic gongs, the wal