ICE stands for In Case of Emergency

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					April 2009

Hi Fellow Sufferers!

I am starting this letter in March and desperately hoping I will manage to get it out in April. I do feel guilty
that I am only sending out two GADabouts a year. Help! I need a secretary — any volunteers?

This is the first time I have started a letter without first giving the new members’ details. Talking of which,
here they are: Sara, Kent; Sharon, West Yorks; Kevin, Herts; Robert, Lincolnshire; Madeleine,
Pembrokeshire; Melvin, Midlands; Sharon, Hants; Louise, Birmingham.

Sadly we have lost one of our members, Mary, Kidderminster. I have sent a card to her husband and
family on behalf of the group.

It occurred to me the other week that my husband David didn’t know what medication I take at given
times of the day. Do your family and friends know what medication you’re on? I did mention in an earlier
newsletter about carrying the information with you. If you were involved in an accident and admitted to
hospital, you wouldn’t have a hope in hell that anyone there would know anything about SMS when many
members have had problems finding a neurologist with any knowledge of our condition. At the end of the
day, it is vital that you maintain your medication, even if unconscious.

Still on safety issues: For those of you who have mobile ’phones and do not know about a helpful device
called ICE, I will explain how it works. ICE stands for In Case of Emergency. You put ICE in the name
part, and then the number of perhaps your next of kin. You can put as many in as you want, - ICE2, ICE3
etc, but make sure they know the medication you are taking.

A couple of things for the diabetics (48% of us): It’s a myth that diabetics can’t wear flight socks, providing
you don’t have any circulatory problems in your feet, such as neuropathy or ulcers. If in doubt, ask your
GP.

For some time now David and Chris have both told me that my hearing is going. To be honest I believe
it’s a case of both of them having selective hearing. If I tell them food is on the table they hear it, but if it’s
a request to put things away or do something useful, they don’t. Anyway, that apart, I read an article
relating to hearing loss in diabetics: “Out of 399 people with diabetes, 21% had a mild or greater level of
hearing impairment for low to mid-frequency sounds in their worst ear, compared to 9% of non-diabetics.”

On behalf of the group I would like to thank Janet for her donation of £20 and to Les for his of £100. I
would also like to thank a woman I met on a train who (to cut a long story short) sent a cheque for £50.
Awareness raising really does work. I would also like to thank Jane for organising a sponsored walk over
various bridges in her area which resulted in a tidy cheque for the charity of £1,115. Well done Jane!

This now leads me on to a rather awkward bit. I hadn’t realised how much David contributes financially to
the group (he has never told me until now). He pays the annual fee for providing our web site as well as
the broadband connection we need. We are now in the situation where he can’t continue to do this as he
is has been made redundant. I know I have asked before, but if any of you or your family and friends can
do any fundraising it would be fabulous. I am not asking for donations from fellow sufferers, as welcome
as that is, it kind of defeats the object. Perhaps some of you may know of someone who would be in a
position to help?

We have a silver bond in next year’s London Marathon and were invited to attend a bond reception. Pam
and I went. We both left with a good feeling as Virgin are to become the official fundraising website for the
London Marathon. Pam’s daughter has volunteered to do the run for us, so please, please can you find
people who will sponsor her? One main reason for asking for your help is because research is imminent.
There will be another GADabout sent before the event, and I will be mentioning it again. We hope to sign
up to Give As You Earn, and to Virgin Money Giving as Virgin will be on hand to help with problems and
queries. If anyone can (please) organise a fund raising event, then let me know in advance, as Virgin will
promote it by putting it on their website. If you need any leaflets to help promotion, again just let me know.
Okay, I will leave that with you for now.

As important, if not more so, is raising awareness. Since I started the group 10 years ago, the waiting
time for a diagnosis, obviously with some exceptions, has dropped considerably from the average of four
years. That’s due to awareness-raising. There are now more neurologists who have knowledge of SMS.

In the near future I hope our web site will be brought into the 21st century. Obviously ‘technophobe’ moi
will be staying clear of anything other than ideas of what we want. If there is something you would like to
be on our site, call or email me with your ideas. This will cost the charity but I don’t know how much as yet
as David is waiting for feedback from the web designer.

Don’t forget to keep sending me your ’photos. When I have enough, perhaps I will never have to decorate
my study again as it will be covered with pix of you lot!

We have just had our bi-annual committee meeting and need more committee members. Legally we have
to have a proportion of sufferers. If anyone will volunteer, it will make me very happy. Any member of the
group is welcome to ‘sit in’ if they so wish. The next meeting should be in October, so just give me a call
— naturally I will ’phone you straight back to save on your bill.

And now: Picture this: A beautiful sunny morning somewhere in southern England. A young woman steps
out of the shower, brushes her long hair and applies her make-up. “Yes” she murmured to herself, “I look
good, even if my back is giving me hell”. As she rested for a moment before going downstairs to prepare
breakfast for the family, the bathroom door suddenly burst open and her faithful Shitzu hound bounded
into the room and leapt up to greet his mistress whose startle response was triggered and mouth and
mutt met full on, smashing a front tooth from our owner’s mouth and leaving the dog with a
lipstick-covered mush. In seconds it was all over, but where was the tooth? The Shitzu’s, er Shitzu, is
being studied to this day in the expectation that nature will take its course and the missing tooth will
re-appear…

				
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