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Monday, November, 30, 2009
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A small mircale has happened

Steve
Steve
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Professor of Law, father of 4, living with primary progressive MS

Nice guy struggling to live with ppms, and to keep the family...

Steve

Friday, June 19, 2009
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For the last 8 years I have been living with ppms. Based in the UK it is wonderful that my medical care costs me nothing. Obviously something disappears from my wage packet, but even if I was not working I would still get the same level of care.

 

Over the last 8 years my health deteriorated badly, and really though I got lots of  neuropathic  and other  pain care - it just was not tackling my muscle spasms. Everytime I took an anti spasmodic, I became so constipated that I would end up with impaction problems. I have slowly become sicker and sicker with tendonitis and bursitis or both in every possible joint in my body.

 

I work a very high powered & very influential legal job in politics (though not  a politician - thank heavens) with lots of international travel which I love, have a young family (well all 4 are now young teenagers) who I love, and have a wife who I love, and do vast amounts of voluntary but very effective human rights work at the level of the UN/Gouncil of Europe.  Or rather I did love my job.

 

But the last 2 to 3 years have seen my dignity stripped from me, as mobility became limited, I couldn't pee or pass faeces without help, my fatigue was so bad I was losing 14 hours a day, I could not sleep in a bed without someone helping me to get out of it and the last year I have been suicidal. My marriage of 30+ years nearly collapsed, and my children were getting very stressed out. We did everything we could to keep this altogether, including family therapy with an MS therapist and a family therapist - that cost a fortune, but it did somewhat help us keep it together and to keep me working - but it really wasn't working well and the solution seemed to be to vanish by killing myself.

 

My wife (a nurse and academic) and I did a lot of reading, and 6 months ago I saw my doctor and asked to try some new meds we thought were worth trying. As usual she said "there is no cure for ppms". I am not stupied I know that, but if she said once more "people in your position take early retirement" I would have killed her. I came from a difficult & very poor background where education was not valued, and worked on building sites for years as a casual labourer, before I went back to eveing classes when I was 30.

 

I have done well, and I am a full professor and a lawyer. Governments and major international bodies listen to me. I reckon through my work  the quality of life for hundreds of thousands of people,worldwide, has been improved. And there is still a lot more to be done. but I could not get my doctor to listen to me. All she could see was a chronic patient who should stop working. I felt totally desperate and have really felt for all those people who are less able and less articulate.

 

 The next appointment was 8 weeks ago, my wife came with me. She explained that I was not going to take early retirement it would destroy me, and I would be so dissatisfied at this stage of my work, I would kill myself - or she would kill me becuase our family life would be so badly damaged. This time the consultant doctor listened and within 15 minutes provided a script for the anti-spasmodic Dantrium and a scipt for Modafinel (an anti-narcolepsy medication). We had no real idea whether it would work, but anything was worth the try.

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