I started on methylphenidate straight away and it has always helped, but it has taken until recently to get the dose and delivery method right. I don’t need a lot of sleep so the slow release version I first had meant a whole third of my day was without medication and I had to decide which end of the day I could afford to screw up! Now I’m on the standard tablets – which means my life is governed by reminder calls on my phone – but it does mean I can choose to take less or no medication when the demands of what I’m doing are lower, and the optimum dose when I need it most; I can be effective in first thing in the morning and later in the evening on the same day, if that’s what my schedule requires.

My local Parnership Trust has set up a special unit for adult ADHD. I was refered nearly a year ago, almost as soon as the decision had been made, but they only started seeing people a couple of months ago and I had an appointment last month. Nothing has changed for me though and I am not being offered another appointment as they currently only have a budget for diagnosis; after that it is up to primary care whether they decide to fork out for the drugs. Longer term they hope to set up a support group, so I’ve asked them to let me know when this happens.

Then everyone can go online and add or edit appointments at will, mark exactly which person(s) they’re for, and can choose whether to send email or text reminders, to whom and how long in advance… It has smartphones apps too that we haven’t tried yet, and probably all kinds of things I didn’t even notice…

We did download the free screensaver though, that shows the day’s appts on it – and I finally got some of our family photos up where we can enjoy them, coming up randomly on our screens, nicely framed! (I got so excited about the calendar, I forgot to get the FlyLady program going; it’s designed to help get housework under control.)

Yes this is taking time to figure out but I do feel a little stronger about it . I have struggled a lot still have nothing concrete except my own continuing experience and sense of things . I am working on not feeling so bloody hopeless constantly-or lonely. Something has got to give.It is a long journey no doubt about it. I just hope I have enough time to really experience a time with out the constant monkey in my brain. no I am afraid I do not feel like some unrivalled secret genius etc. Just the opposite .One help I have to pass on is that I finally approached a chiropractor on this. He is Canadian has known me for a long time ( I consider him my primary health care person at this stage) . His response was that it was a possibility. Examning my neck he found problems. I have had some adjustments and yes it has helped me to think more clearly and definatly lifted my mood. Of course like anything else you has to find the right chiropractor .
You may have got my previous response to your really encouraging mail. Thanks again, just thought I would mention something that has helped me. Janine x

I would like to know about the same kind of possible actions I can take here in West Midlands. My specialist doctor has informed me I am one of his last ADD patients because he has been told to discontinue volunteering to treat ADD for adults until someone, who knows?, looks into it and finds funding for it.

I want to do something but it is rather tricky isn’t it?

Fro a detailed respose please post on our forum, but if you want to start by looking for a GP try here:

http://www.nhs.uk/servicedirectories/Pages/ServiceSearch.aspx?ServiceType=GP

A newcomer speaks: some of us may well just get a bit of a buzz about getting SOME help or just even a conversation about the thing that has been driving us mad for the last 50 odd years. Just because you are an ‘expert’ (well I assume you are, you write on a website and have heard about mainframes) it would be really useful if you didn’t spend quite so much time pointing the finger at the dumb outside world.

Perhaps you could recognise that those of us that had to invent lists all on our own (because we were drowning, there was no support and the paint on the internet was still rather wet), may well say “well it’s a start” or “jesus h christ, do you not have the imagination to conceive that maybe just maybe a sufferer hadn’t thought of lists yet – and who knows it may help.”

You are angry, I get that – a lot of us are, but why not have a goal of making your posts useful? Perhaps keep it in mind and track it through the week – have you got a diary? Maybe write the point of your post on a piece of paper and put it on the fridge or by the return button on your teletype keyboard.

Just a thought.

You’ll get more detailed advice and support on the actual forum – link above, but in the mean time we suggest either seeing another GP at the same practice, if there is one, or going back to the same one and politely but firmly (yes we know it is hard, but it is the best way!) point out to her that adult ADHD is in the NICE guidelines and she should refer you to a specialist. We’ve even heard of some people printing out copies to bring along, but that might be overkill. Anyway, you can find various versions (aimed at patients, doctors etc) here:

http://aadduk.org/library/know-your-rights/

Come on the forum and tell us how you got on.

Thanks

HIs diagnoises was ADHD, autism spectrum, anxiety, dyslexia, and dispraxia or as he discribes it the whole works lucky me!!

I like to think were unique and special, Im crazy somedays, and sad others, mostly manic, I used to cry alot and think I was weird….but were not..were great, so give yourself a great big hug and wipe the tears from your eyes because Im pretty sure you are all lovely people, oh and copy the link above it’s really interesting!

Copy and paste this link, it’s really interesting, Im 40 and the mad things ive done and odd behaviour, and all the things you have said above, is so true with me too, we just need to learn to cope with ourselves, we should have been taught as children but were misunderstood, so give yourselves a great big hug and wipe the tears from your eyes and embrace your differences xx