for The Journal of Diabetes Nursing by 7ZRRUmF


									November 2005

My newsletters have often begun with an apology for the length of time since the last one, but I don’t think
it has ever been nine months. Which leads me on nicely to congratulate Darran and his wife on the birth
of their third child. New members this time are as follows: Julie W, Midhursrt, W. Sussex; Tony R,
Bramhall, Cheshire; Olivia G, Hull; Brenda W, Hull; Adam D, Ipswich; Pete M, Kings Lynn; Nicola B,
Hedon, East Yorkshire; Janis M, Glasgow; Dawn C, Bucknall; Janet S, Marlbrough, Wilts; Rhima M,
Oxford; Maureen B, Malahide, Co Dublin; Davina N, Kent. By the way, if you move home or change
telephone number, will you let me know as it is a heck of a job tracking people down. We now have
another name to add to our mailing list. It is an organisation called Contact A Family – Rare Disorders (I
mentioned them in the last newsletter).Their email address is They deal with a lot of
charities, large and small — including ours. So if you want to have a look and see what information they
have about us, then you have their address. The hope is that they will enable charities to swap helpful
information. Did anyone spot the deliberate mistake in the last newsletter? I spoke about an awful article
written in my local paper. I went on to say that my son Christopher would have made a better job of it,
even though he has dyspraxia. Well, yes, he does have dyspraxia but he also has dyslexia. So my
comment about the word being so difficult to spell obviously related to the latter condition. That sounds as
clear as mud to me, but hopefully you will understand it. Awareness raising:
I forgot to tell you that Angela M had an article published in Woman magazine in October. She wasn’t
very happy with the ’photo they used but when the story is about a medical condition I guess they
wouldn’t want a glamour shot. They did write a good story, though, which is the most important thing. I
have been in a local ‘freebee’ recently. Fortunately, it is a big glossy magazine and covers a fairly large
area (I think all of East Yorkshire must know about SMS by now). I am beginning to wonder when people
are going to start asking me for my autograph. Who knows, the paparazzi may be camped outside as I
write! Of course, if they were, they wouldn’t have to chase me, as I can’t get up much speed pushing a
three-wheeled-walker. I have also written a 2,339 word article, with the help of Pam Sawtell’s knowledge
(Prof D Leslie’s former research nurse), and my other half, for his (alleged) journalistic talent, for The
Journal of Diabetes Nursing. Lastly, an article for Real magazine. It was published in October — did any
of you see it? I also emailed ‘This Morning’ asking for SMS to be featured in their rare conditions slot. But
I have heard nothing back from them. One or two questions from members: 1) Has anyone used a
baclofen pump? 2) Does anyone have breathing problems, and if so, does anything help? We all have
good days and bad days, but do you suffer peaks and troughs? By that I mean do you have weeks where
you feel the SMS is getting worse, and then find you improve?. Would anyone like their email address
putting in the newsletter? I think it is a good idea, as ’phone calls can be quite pricey. A request from me:
If you have the time and inclination, would you email me a ’photo of youself? It would be nice to ‘see’ to
whom I am talking. I wonder how many of you have looked at our web site? Tony has done an absolutely
fab job. We now have a translator facility. How many people have used it, I don’t know. We also have a
message board, so I hope to see some comments from YOU on there! The idea came from Chris H (our
opera singer). He donated some money from a concert in which he performed, and asked if we would use
it to set up the said message board. We are getting a good response. I believe it helps people, wherever
they are, to know they are not alone with SMS. I have had five people email me from Canada. They all
asked the same question: “Do you know of a support group in Canada?” I sent them each other’s
addresses. Hopefully they can get together and who knows what may come of that? Apart from replying
to them, I also get emails from all over the place (mainly the US) which I answer. Cast your minds back to
January: Do you remember the awful storms in Scotland? I managed to get in touch with our Scottish
members, and they all survived, you’ll be pleased to hear. Which proves my point that they breed ’em
tough in the north (apologies to any “soft” southerners!). There is more I could have included in this
newsletter, I started it in September but I have had a number of personal problems to deal with over the
past few months, hence this rather abrupt ending. However, I hope I can get things sorted by the time the
next newsletter is due.So it just leaves me to wish you all a happy and healthier Christmas and New Year.
To those of you who do not celebrate Christmas, have a good rest so you will be ready for 2006! Best

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