A terrific week for me with Grace our youngest daughter getting an internship at the Brunswick group in New York which is paid and starts in March and if she does well they have said that there is a possibility of employing her. Congratulations, all the hard work was worthwhile.
The drinks reception was a great success at the Reform Club and made my week. Around 60 people attended representing virtually all of my working life and I think that the connection between everybody was me. Eve, James and Liz were brilliant on the night making sure that everything ran smoothly which it did. I had a great time catching up with people I’d not seen for a long time and meeting some new people such as Priscilla who is a fellow MSA traveller. She is a lovely lady, a lawyer by training in a wheel chair for a month now and with an MSA soft voice like mine. We have our medical consultants, Prof Lees and Prof Mathias in common. I thoroughly enjoyed talking to her and look forward to continuing our conversation. It helps to have somebody to touch base with who is going through the same thing.
I am not going to try to describe the evening as I would fail abysmally so I will reproduce my notes, which Eve read out for me and here’s my Facebook site where there is an album of photographs.
The notes
· Since being diagnosed with MSA I have inevitably been reflecting on what it all means and how I CAN CONSTRUCTIVELY USE MY TIME.
I want to give something back in the time available to me
· What better than to buy a few drinks for my mates, friends, associates and co workers in my second home, the Reform where I have been a member for over 20 years
· I have lots of happy memories of meetings, discussions and entertainment so that‘s why I chose the Reform for tonight and the men have to wear ties!
· I wanted to celebrate working with so many talented people over my career and say thankyou and long may it continue
· Then MSA came along and turned my life and my family lives upside down
· MSA can attack anybody anytime, more men than women, organic food or not
· My knowledge of MSA was zero and so it was for most people I talked to. Interestingly my GP who did some of her training at the National Hospital for Neurology And Neuroscience had met MSA patients
· It’s always confused with Parkinsons, it’s big but less deadly brother, and a lot of it is to do with the autonomic nervous system, hence an invitation to Professor Mathias to tell us more tonight
· They have designed amazing tests such as the tilting bed and freezing hand routine [see my blog] which I have done 3 times and survived
· So by the end of tonight you should have a better understanding of MSA
· As a researcher I have taken an interest in what is happening and participated in trials but there is a lot to do in the MSA field and this is where we can help - I never thought I would hear myself encouraging support for research in other than my own academic but there you have it
· That is why John and I are donating the royalties of our latest book ‘Understanding Work Based Learning’ to research in this field
· For me this is a night to remember I just want to thank my family for all their support particularly Eve and James for this event and I am looking forward to continuing to work with you.
What some people have said
What a marvellous evening last night, which I was delighted to attend with Bruce's help.
I met your brother (Jeremy) and had a great chat about snow, and the unexpectedly vicious politics of parishes (now I'm a village councillor myself).
Many Dept of Health folk - some I knew, others were previously just names - came over. How warmly they spoke of you, and how positively they responded to my own work (again thanks to Bruce and your momentum behind UKFHI).
And, of course, I heard your consultant speak very lucidly on MSA and met you too.
There was much in the consultant's talk that I relayed and resonated with my Dad (uncontrolled blood pressure after eating/breakfast). I appreciated first hand your ongoing challenges. The UK rare diseases strategy, mentioned earlier, may be an additional string to your consultant's bow.
It was good to see you and Liz and Eve at the Reform Club last night.
I met your brother (Jeremy) and had a great chat about snow, and the unexpectedly vicious politics of parishes (now I'm a village councillor myself).
Many Dept of Health folk - some I knew, others were previously just names - came over. How warmly they spoke of you, and how positively they responded to my own work (again thanks to Bruce and your momentum behind UKFHI).
And, of course, I heard your consultant speak very lucidly on MSA and met you too.
There was much in the consultant's talk that I relayed and resonated with my Dad (uncontrolled blood pressure after eating/breakfast). I appreciated first hand your ongoing challenges. The UK rare diseases strategy, mentioned earlier, may be an additional string to your consultant's bow.
It was good to see you and Liz and Eve at the Reform Club last night.
It was very good to see you at the place where we met many times to discuss your ideas for cultural and educational organisations. I was always inspired by your cutting edge ideas for advanced creative arts organisations. I will always have fond memories of our meetings in the library, the restaurant and the foyer of the club.
Eve`s reading of your letter was very helpful indeed to set the tone for the evening. Eve clearly has your ability to present the issues in a truly professional manner
The consultant’s presentation of the issues in relation to MSA was both educational and helpful. Research seems to be evolving all the time to find new treatments or health regimes to combat MSA.
The new drugs that are being developed in the USA may lead the way for the future treatment of MSA.
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