Sunday, October 10, 2010

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.



Saturday, June 19, 2010

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.

Monday, May 31, 2010

Narcolepsy Support Group Meet Up - Dublin

We have organised an informal get-together for all Narcolepsy sufferers and their families, friends or anybody who is interested in the subject.

DATE : SATURDAY, JUNE 12TH, 2010.

TIME : 1.30 p.m. TO 4.00 p.m.

VENUE : DANDELION CAFE BAR AND RESTAURANT , St. Stephen's Green, Dublin 2.

The idea is to chat about our experiences and exchange coping mechanisms that we use in our daily lives. Sleepy-Heads and family members of all ages are welcome.

As Narcolepsy is an uncommon condition, most of us have no contact with other sufferers. This has the effect of making us feel isolated and alone. It is also very difficult to explain our symptoms to non-sufferers as there are so many idiosyncrasies that define us as Narcoleptics.

As a committee, we have met a number of times and always end up discussing our personal experiences after meetings. We came to the realisation that we learn so much from each other that it would be a worthwhile exercise to hold a meet and greet session where we could all get together for a chat in an informal setting.

Dandelion is situated on the Grafton Street Side of Stephen's Green, between the Stephen's Green Shopping Centre and the Fitzwilliam Hotel.

It has a full bar and also serves tea/coffee. There is an extensive, reasonably priced bar menu. It also has a full restaurant, should anybody choose to avail of it.

So, put the date in your diary. Myself and the other Committee Members - Sheila and Orla - are looking forward to meeting you there !

Miriam

Tuesday, March 30, 2010

Narcolepsy Website Finally Launched!

Well - it's finally here !
I hope you will agree that the new site was worth waiting for. Our aim was to make it as attractive and user-friendly as possible. It is very easy to navigate, which was a priority for us. It is very annoying and frustrating to have to trawl through page after page looking for an item, so we tried our best to avoid this. We wanted to get anywhere on the site in as few 'clicks' as possible. I think we have achieved this.

Our Forum is also 'open for business'. Please feel free to use this. You must register to use the Forum. To 'post' on the page, you can use any name you want, it does not have to be your real name. Your registration details are strictly confidential and will never be shared with anyone. You can open a 'thread' under any of the headings we have set. The only rule is that it must be appropriate and non-abusive. If any entry is deemed to be offensive it will not be posted and the user will be banned from using the site.

Finally, this is YOUR website - we are only here to facilitate it. Please feel free to submit items for the Blog page, the news page or anything else you feel like telling us about. We have all had comic moments due to our illness - why not share some and cheer us up by making us laugh. We would welcome your comments about the site and any suggestions you may have. We have included anything that we could think of that may be of interest to our Members. If there is anything you want to see on the site - just let us know. We will always be happy to get feedback.

So now, go ahead - read, use and enjoy. We will keep the site as topical and as up to date as we can but in the end it is up to you, our Members, to keep the site going and not to let it stagnate and eventually die. Happy reading one and all !
Miriam.