INTERNATIONAL NARCOLEPSY AWARENESS DAY

TO  ALL  SLEEPY-HEAD  MEMBERS

 

 

At our last meeting, the Committee, decided to issue ID cards to all members who wish to have them.  Many of you have asked for them, so we expect quite a number to avail of this.  These are useful in many situations, e.g. travelling by plane (Narcoleptics should sit in a window seat), for school, college, etc. The cards will take the form of a laminated card with photograph..

PLEASE NOTE  :  We would advise against having ID cards on display while driving as, in the event of an accident, the other party could use it against us.  Whilst on the subject of driving, you must declare to your Insurance Company that you suffer from Narcolepsy.  Usually the Insurance Company requests a letter from your Doctor saying that you are capable of driving and they don't impose a levy.  However, in the event of non-disclosure, your policy could be declared null and void
.
I will have a limited number of forms available on Saturday for those wishing to avail of the ID cards.  You may also apply by post, stating your name and address and enclosing a passport PHOTO.   We would also request that you enclose a Stamped Self-Addressed Envelope as otherwise I will have to pay for the postage personally !!  The cards will be sent out within a few days.

You can post your applications to :   Miriam Lanigan
                                                           26, Mount Anville Lawn
                                                           Goatstown
                                                            Dublin  14,

We are offering this to all our members who wish to take advantage of this service free of
charge.

Fund Raising

Hi All,

First I must say a big THANK YOU to Mary, who did a mini marathon in her local area and raised over €100 - our first donation !!

Then Hilary, her sister and her friend did the Mini-Marathon for us and between them raised over €600.

THANKS again, Girls - we now have a bank account !

THANKS also to Charles Ryan, who designed our Sponsorship Cards and who managed to get them printed - all free. He is a true gentleman and a pleasure to do business with. Thanks Hilary and Emma (his wife) who introduced him to me.

If anybody is doing any form of fund raising in our name and requires sponsorship cards - I have them. They are suitable for any event - just let me know how many your need.

Because we now have money in the bank I intend to go ahead and order the ID cards. This was discussed at several meetings, including the open meeting in Dandelion. Most of us want some form of card for several reasons, e.g. in the event of a cataplexy attack in public. The card will explain what to do - or, more importantly, what NOT to do in this event. I envisage the cards will be slightly larger than an credit card, with name and date and I will laminate them. I will advise when they are available.

The Sub-Committee of parents who are dealing with the Pandemrix issue are making terrific progress. Interested parties will have received updates from Mary. Anybody interested in joining this group - please contact Mary.

So, it just remains for me to wish all our members a good summer - hopefully we will get the weather to enjoy it !!


Mims.

A Date for your Diary

Well, our Forum has become quite popular ! It's so gratifying to see so many people using it for the purpose for which it was intended. Unfortunately, most of the posts at the moment centre around the terrible problems caused by the suspected link to Pandemrix.

So many children are believed to have been affected by the use of this drug, dispensed as the 'Swine Flu Vaccine' nationwide by the HSE. Even when a link between Pandemrix and narcolepsy was being investigated by other countries (most notably Finland), it was still being used in Ireland. So many children have been diagnosed with narcolepsy it's frightening. All affected have been given a life sentence as there is, as yet, no cure for this condition.

Maryf - a regular contributor on our Forum - whose son, Conor, has developed narcolepsy has been in touch with me to say that they have arranged a meeting for all parents and concerned individuals. The details are as follows :

Date - Sunday, May 22nd.

Time - 2.30 p.m.

Venue - Royal Dublin Hotel

Further information is available from Mary at 087-698 9277.

Please note that this is not a general Sleepy-Heads meeting but is specifically aimed at the parents of children suspected of being affected by Pandemrix. We will be arranging a general meeting in the near future.

Incidentally, according to an article in the Independent recently, GlaxoSmithKline were fully indemnified by the Irish Government, prior to supplying Pandemrix. Makes me wonder what GlaxoSmithKline knew or, at the very least, suspected that caused them to take this stand.

I will be at the meeting on May 22nd and I really hope that all affected parties attend. It will be an ideal opportunity to exchange information and, perhaps, get help on coping strategies, etc. that could benefit the children.

See you there !!

Mims.

European Narcolepsy Day

Would you believe it ? A day to commemorate us Narcoleptics ! How cool is that ? Well, this is taking place on March 18th next, when events are being organised throughout Europe. We really should do something in Ireland - it would be a great opportunity to highlight our existance.

I suspect that we're too late but, I have approached the Festival Organisers here in Dublin, with a view to walking in the St. Patrick's Day parade the previous day. Should we be successful with this approach, we intend to walk wearing night attire. Anybody interested in joining us would be most welcome. The more the merrier - and the bigger the group the more publicity we would draw.

We are also trying to organise a 'sleep-over'. In deference to the weather, this will have to be an indoor event. We are looking at venues at the moment. Anybody with any ideas - or better still, contacts - please let us know.

Needless to say, we probably won't be staying over-night but will be there all day, again in night wear. The 'night wear' can be anything you like - pyjamas, night dress, costume, fancy dress, the more outrageous and funny, the better. We hope to contact the press and media about our event, with a view to getting publicity. We are hoping to have a good crowd of us there all through the day. Maybe we could get a bed - this would not only draw attention to us, but we could use the bed to have our 'naps'.

Anybody with any other ideas, please let us know. Also, if you would like to organise something local to you - please go ahead. If you can walk in the St. Patrick's Day Parade in your area - great ! The whole point is to alert people to the condition and to educate the public.

I have opened a new 'topic' in our Forum for exchanges of ideas and general discussions about the day. So, please get your thinking cap on and post there !

I will keep you informed of any and all developments this end !

Mims.

Welcome To All Our 'Newbies'

Well, our Forum has finally taken off ! It is buzzing with posts from old and new members. It's great to see so many people making use of the facility. The Forum is intended for use by our members - it is your forum, your space to communicate with other Narcoleptics.

This is the purpose of our Support Group - it is a tool for exchange of information and advice. Because Narcolepsy is an uncommon illness, it is very possible for sufferers never to meet another with the condition. I was diagnosed over ten years ago and until we started this initiative, I didn't know any others Narcoleptics. Because of lack of public awareness, mythology surrounding it and the nature of the condition, it can be very isolating. Depending on the severity of their symptoms, many narcoleptics are unable to function in the workplace or behind the wheel of a car, which only increases their sense of worthlessness and dependency. It's rather difficulty to be taken seriously when you frequently fall asleep in your dinner !!

What I find upsetting about our Forum is the number of Mothers whose children have been diagnosed or are waiting to be diagnosed with Narcolepsy. Some of these children are as young as 9. It's so encouraging to see these Mothers exchange experiences and advice. They are even organising to meet up, with the children, during the Halloween break. How good it will be for these children to meet others with the same problems as themselves.
It must be really difficult for any mother to watch her child suffer like this. Unless you have experienced cataplexy or hypnagogic hallucinations, it is very difficult to understand them. Suffice to say that I am frequently terrified by my hallucinations - and I am not a child. This emphasises, yet again, the need to educate the general public and, more importantly, our educators who are charged with the care of our children on a daily basis. The risk of these children being labelled as 'lazy' or 'unco-operative' is ever present until teachers understand that this behaviour is beyond the control of the child. By making small allowances, life can be made so much easier for the narcoleptic child. With a general election looking increasingly likely, we must put pressure on - and keep it on - our representatives to recognise the problems associated with narcolepsy. These include the cost of medications, as this is proving prohibitive for a number of our members. I am in the process of contacting all the Teachers' Unions with a view to educating their members, as well as the Ministers for Health, Education and Children.

I shall keep you udated on any developments !


Mims.


P.S. Next year, 2011, we celebrate 'World Narcolepsy Day'. This is a significant day in all our lives. I feel that we should do something significant to 'mark' the day. Anybody who has suggestions, please contact us. We would be most grateful for any or all of the suggestions we receive.

Our Narcolepsy Support Group Meet-up

Summer is almost over …… hard to believe that it’s August already!
Wimbledon is over for another year, the World Cup is over for another four years, and the Tour de France until next year - with all three trophys finding new homes in Spain !!

We had a very enjoyable afternoon in
Dandelion in St. Stephen's Green for our open meeting on June 12th. While the group was a little smaller than hoped, those who did attend found it very worthwhile. Around fourteen people attended - some travelling from as far away as Galway, Mayo and Cork.

The atmosphere was very casual and informal with people arriving all through the afternoon. We discussed everything from the very serious to the absolutely hilarious. One or two issues were raised that I feel merit a mention here.

One was an idea that we as a committee had discussed and wanted a consensus from those present. We had the idea of issuing 'identity cards' to all members. These would be very useful in many situations, e.g. for students sitting exams, etc. However, they could also be a hindrance in other situations - for example, if you were involved in a traffic accident blame could be apportioned just because of your condition. Weighing up the pros and cons, those present agreed that the pros outweighed the cons. We'll be looking into this in the near future.

The other issue was more serious. Discussing our medications and the cost of them, it became clear that many people had serious problems financing these. Despite the limit of €120 per month, people were still struggling. Some people admitted to only taking the medication Monday to Friday and another person admitted to not taking any medication at all as they were between jobs.

I find this totally unacceptable. We need our medication to function at a basic level every day. Diabetics are entitled to all their requirements free of charge - why not Narcoleptics ? Asthmatics have been lobbying for this for many years. The way I see it, there are too many asthmatics and it would cost the state a lot of money. However, we are a relatively small group, so we may stamd a better chance !!

We are going to tackle this problem. As a general election looks likely soon, I urge all of you to lobby you local TDs. They really need your votes - so badger them for what I see as your entitlement in return.


Education of the public was also discussed. More importantly, in my opinion, the education of the ‘educators’ in our schools. We decided to concentrate on this when the schools resume in September. We hope to get appointments with the Ministers for Education, Health and Children. We will present a paper to be circulated to all schools, aimed at teachers, explaining the signs of Narcolepsy and the concessions that are required for sufferers. This paper will also be sent to the Teachers’ Unions and, if necessary, supported by presentations.

If any members have other suggestions or requests - please let us know. You can contact us on our Forum pages or by email to info@sleepy-heads.org. We are always happy to receive feed-back from members.