Greetings all, this is my introdction to you all. I am a 66 year old man, actually I am still 21 but with 45 years experience. I may grow old but shall never grow up.
About 5 years ago I developed a problem with my walking, my stride was smaller than my brain was wanting it to be. I would just slow down when I was walking. If I rested for ten seconds or so I would be OK but eventually, albeit sporadically, the slowness would come back. After 2 ½ years of numerous MRI scans, CT scans, electrical tests of my brain and limbs, lumber puncture, muscle biopsy, blood tests, x-rays and more they concluded that it is MND. My wife and I were told at the beginning that MND was their suspicion but as there is no test to actually diagnose it and it can only be concluded on a process of elimination.
At that time my private medical insurers told me to p off. Well they didn’t actually use those words but they increased my insurance premium to £1,600 ………………………… per month. I think that means p off, don’t you? I then went to the NHS who have been absolutely amazing. I have seen numerous consultants and professors and am now seeing on a regular basis three different consultants from the National Neurological Hospital in London. They are just superb.
My MND is slow progessive. At present it is predominantly presenting itself in my legs which I have virtually lost the use of . I now have to use a walking frame for the few feet that I can walk. If I fall over, which alas I have done a few times, most unusual when you are sober, I cannot get up without assistance. Fortunately I can still drive and my car has been adapted with hand controls. However after 40 years of driving I got my first speeding ticket the day I had the controls fitted. I couldnt remember if I had to push or pull to brake!
Its a horrible journey we are on, both for the patient and our loved ones. Nevertheless I intend, and as I have seen on the fourm many others as well, to live live to the best of my abilty.
I look forward to learning from you all and sharing as well.
I wish you peace and comfort.
Richard
About 5 years ago I developed a problem with my walking, my stride was smaller than my brain was wanting it to be. I would just slow down when I was walking. If I rested for ten seconds or so I would be OK but eventually, albeit sporadically, the slowness would come back. After 2 ½ years of numerous MRI scans, CT scans, electrical tests of my brain and limbs, lumber puncture, muscle biopsy, blood tests, x-rays and more they concluded that it is MND. My wife and I were told at the beginning that MND was their suspicion but as there is no test to actually diagnose it and it can only be concluded on a process of elimination.
At that time my private medical insurers told me to p off. Well they didn’t actually use those words but they increased my insurance premium to £1,600 ………………………… per month. I think that means p off, don’t you? I then went to the NHS who have been absolutely amazing. I have seen numerous consultants and professors and am now seeing on a regular basis three different consultants from the National Neurological Hospital in London. They are just superb.
My MND is slow progessive. At present it is predominantly presenting itself in my legs which I have virtually lost the use of . I now have to use a walking frame for the few feet that I can walk. If I fall over, which alas I have done a few times, most unusual when you are sober, I cannot get up without assistance. Fortunately I can still drive and my car has been adapted with hand controls. However after 40 years of driving I got my first speeding ticket the day I had the controls fitted. I couldnt remember if I had to push or pull to brake!
Its a horrible journey we are on, both for the patient and our loved ones. Nevertheless I intend, and as I have seen on the fourm many others as well, to live live to the best of my abilty.
I look forward to learning from you all and sharing as well.
I wish you peace and comfort.
Richard
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