Videos of TM patients

Here are a couple of videos of people’s TM stories. The first one is of a five year old boy. The video is on My Space, and WordPress.com won’t support the video itself, but here is the link:

http://myspacetv.com/index.cfm?fuseaction=vids.individual&videoid=19101563

This one is from a man named Kevin. You’ll see some similarities but some differences. The differences are due to where exactly along the spine TM hits.

My case has similarities to both, but mine is not as bad as either of these. But hopefully seeing this will raise awareness and be helpful to those who prefer seeing rather than reading about it.

Many more YouTube videos of TM patients are here.

I am updating this to add new videos from a friend from the TMIC, Grace, whose story was on Mystery ER. Her story is in three parts.

Part 1:

Part 2:

Part 3:

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2 thoughts on “Videos of TM patients

  1. My story is different from Kevins. In 1992 I was a serving police officer in Sheffield, England, although I worked in the Force Communications I was pretty active cycling everywhere, that was until one evening in April 1992. I’d cycled into town to meet my wife and 7 year old granddaughter at the local McDonalds. While I was waiting for them to arrive I started out with pains in my left hand which worked their way up my arm into my shoulder. Because of my first aid training my first thoughts were “heart attack” but when it went across my chest and down my right arm in a continuous arc of pain I felt that it wasn’t. I felt really rough, so much so that I was on the verge of getting the staff in McDonalds to call 999 for an ambulance, don’t forget this was before the days of cell phones, but after twenty minutes the pain started to ease off so I decided not to bother. I felt reasonably OK, just a bit groggy. After we’d had our meal, while Wendy took Lauren back to her mothers I cycled home again, little realising that it would be the last time I would ever ride my bike. That evening I told my wife what had happened and she called out our doctor. After he’d heard my story and my medical history and that of my father, who had suffered from angina he diagnosed a severe angina attack, and arranged for me to visit his surgery the following morning. I never got there, The following morning as my wife was downstairs getting ready to go to work I felt reasonably well but as I got off the bed I took two paces and my legs buckled underneath me. I managed to stand up again and promptly collapsed again. My wife immediately phoned the doctor. His surgery was on the other side of the road to my house so he was there in minutes. His first words were “I don’t think this is angina”. To cut a long story short he got me admitted to the Neurology Ward of the Royal Hallamshire Hospital in Sheffield.

    The first symptoms started at 6pm on the Sunday evening, by 10pm on the Monday I was in the Intensive Care Unit, paralysed from the neck down. I was like that for four days before I started to regain movement in my fingers, and gradually improved over the next few days until I’d regained almost full movements in my hands arms and shoulders. However, sensations were a different matter and still are, with mixed sensations from the chest down which can be quite hazardous as far as putting me at risk of pressure sores and other injuries. I am fortunate that apart from the initial symptoms I have never suffered any pains.

    The initial diagnosis was “Guillaume Barre Syndrome” for which I was treated by plasma transfers, but after further tests the diagnosis was changed to TM, for which at that time there was no treatment of any kind, and in my case, the damage to the myelin sheath was located at C5 (incomplete), which meant that I am classified as a tetraplegic/quadraplegic, with no use of my legs and some limited use of my arms, although I am lucky to be quite strong in that area. After three weeks I was transferred to the local Spinal Injury Unit in Sheffield where I spent the following six months undergoing rehabilitation and getting used to my new situation, I have to say that during my time there I had the most wonderful support and care which has continued right up until the time of my writing this (March 2016) As well as the support I received from my family, I received a tremendous amount of support from South Yorkshire Police. They obtained grants to pay for adaptations to the building where I worked and although I had to retire as a uniformed police officer I was reemployed as a civilian operator doing the same job in the Communications Centre, which I carried on doing until I retired in June 2008.

    Regrettably since I was first discharged from hospital in October 1992 there hasn’t been any improvement in my condition, but apart from the ravages of getting older its not got any worse. In some ways I have probably done more than I would have done had I still been able bodied. I have travelled to Canada several times to visit relatives, I have also made several long trips to Europe, i.e. France, Italy, Spain and Portugal, each time driving my adapted car.

    TM has changed my life but not wrecked it, unlike another sufferer that I met while I was in the Spinal Injury Unit. I was 46 at the time. This young lady was about 10 years younger, She was married, About 6am one morning she’d got up to see her husband off to work and gone back to bed. When she woke at 9am she was paralysed from the neck down, Fortunately her little boy was able to call for help. By the time she was discharged from hospital she was barely able to propel herself in her manual wheelchair, where I was very strong in that area, and her husband was having to give up his job to look after her.

    Different people, different outcomes, luck of the draw I suppose.

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