I sent a post before about my appointment with the neurologist. I've now had a letter back. He said that I did come across as rather anxious and "in terms of objective signs attributable to a parietal lobe problem I could detect none today. She could copy a 3D cube and intersecting pentagons without any difficulty. Pantomiming gestures and copying meaningless hand gestures was normal. Other neurological examination was unremarkable."
He did say that I brought with me a list of symptoms which are often described in developmental dyspraxia.
In his Opinion at the end of the letter he says: "I suggested to her that in fact what we call this makes less impact than how we go about making her life easier. I suggested to her I thought it would be very helpful to ensure that her mood and anxiety was adequately and maximally treated since this would make these perceived difficulties easier to cope with." He referred me back to the GP and asked if they knew anyone like a psychologist who specialised in dyspraxia who I could be referred to.
When I went to see the GP yesterday she doesn't know of anyone to refer me to, but suggested I get in touch with Talking Therapies and see if they can recommend anyone.
I am not really sure what to do now. Although the doctor and neurologist were understanding, and I did feel listened to and taken seriously at least, I do feel now that I'm not really that much further forward! I can understand why other people say it doesn't matter what you call the difficulties I've got, but since I've been on this website I can so relate to so many of the issues people have, I just feel I want to know whether or not I have dyspraxia.
I am toying with the idea of going privately but not sure. I realise it may not help me that much if i do get a diagnosis, but it's more for my own satisfaction is that makes sense.
Sorry for another long post - but I'd be really grateful if anyone had any advice.
Thanks, Nicky.
NOT SURE WHERE TO GO NEXT
Moderator: Moderator Team
Re: NOT SURE WHERE TO GO NEXT
Hi Nicky,
It's a tricky one. I think a big part of the problem is that nobody seems to know what the root cause of dyspraxia is, and therefore how you would treat it in a medical sense. I've tried to look for studies on this, e.g. fMRI or similar of dyspraxics during various activities, and found nothing. My experience of medics (in general not just in relation to dyspraxia) is that once they understand the physical or chemical cause they become a bit better and are more proactive as they then have something to deal with in their realm. That's not to say they don't care about resultant lifestyle difficulties, it's just not what they consider to be their job - a bit like the difference between a psychiatrist and a psychologist.
Like others on here I saw an Ed Psych for my assessment, but I'd imagine the NHS are unlikely to fund that.
Sorry I can't be more help!
It's a tricky one. I think a big part of the problem is that nobody seems to know what the root cause of dyspraxia is, and therefore how you would treat it in a medical sense. I've tried to look for studies on this, e.g. fMRI or similar of dyspraxics during various activities, and found nothing. My experience of medics (in general not just in relation to dyspraxia) is that once they understand the physical or chemical cause they become a bit better and are more proactive as they then have something to deal with in their realm. That's not to say they don't care about resultant lifestyle difficulties, it's just not what they consider to be their job - a bit like the difference between a psychiatrist and a psychologist.
Like others on here I saw an Ed Psych for my assessment, but I'd imagine the NHS are unlikely to fund that.
Sorry I can't be more help!
Re: NOT SURE WHERE TO GO NEXT
Hi Phil
Thanks very much for your post. Yes that is the difficulty with dyspraxia, isn't it, that it's all a bit of mystery? I must admit that the neurologist and doctor were quite understanding - I was a bit worried after some of the comments on here that I might not be taken seriously.
If you don't mind me asking, did you go privately to the educational psychologist? Sorry if I've already asked you on another forum as I know you replied to some of my posts before.
Thanks again.
Nicky
PS: I have just had an e-mail back from Talking Therapies (which is an NHS organisation) and they're going to phone me next week.
I do realise that the NHS is over-stretched, and that my problems are not overly serious really, but I do feel it's a shame if we don't get some help, as I find that dyspraxia often seems to lead to depression and frustration. Also I will be able to go back to work hopefully if I can just get things a bit more sorted.
Thanks very much for your post. Yes that is the difficulty with dyspraxia, isn't it, that it's all a bit of mystery? I must admit that the neurologist and doctor were quite understanding - I was a bit worried after some of the comments on here that I might not be taken seriously.
If you don't mind me asking, did you go privately to the educational psychologist? Sorry if I've already asked you on another forum as I know you replied to some of my posts before.
Thanks again.
Nicky
PS: I have just had an e-mail back from Talking Therapies (which is an NHS organisation) and they're going to phone me next week.
I do realise that the NHS is over-stretched, and that my problems are not overly serious really, but I do feel it's a shame if we don't get some help, as I find that dyspraxia often seems to lead to depression and frustration. Also I will be able to go back to work hopefully if I can just get things a bit more sorted.
Re: NOT SURE WHERE TO GO NEXT
Hi
Since the last time I posted, I had a call from the local Talking Therapies, and couldn't believe that the person who phoned me has dyspraxia herself, so that was unexpected. It was good to speak to someone who understood, but unfortunately there still doesnt seem to be any help on the NHS. However the lady at the Dyspraxia Foundation is going to speak to someone and get back to me.
I'm thinkng it may be worth me going private - I'm going to see how I feel. My Dad is thinking of a test for dyslexia - he watched the Shane Lynch programme I saw on 7th January and he so related to it.
I know people say to me "you're still the same person" and "why does it matter if you have a diagnosis" but I feel it does matter to me, although I am a bit worried about it. More worried in case I don't have it, because whre does that leave me?
Anyway I do feel more positive about things now. I think I'd like to get more involved with the Dyspraxia Foundation, helping younger people, because I can see from people I know that getting help earlier on in life would have been so good. The same for my Dad and his writing - luckily he's self-employed, and my Mum does his paperwork, but if that hadn't been the case I'm not sure if he would have got on so well as he has (he's a builder and very practical - the complete opposite of me!) He said he felt he could easily have ended up in prison like some of the people on the programme if it hadn't been for his Dad and the fact that he was able to go and train to be a plumber and later go into partnership with his Dad building. Unfortunately it's not always so easy nowadays as you need paper qualifications a lot more. But now he has been doing literacy classes his writing has come on so much it's quite amazing! And he is 70 now, so it is never too late to do something. It just seems sad that it can take so long. Let's hope things improve in the future. I'm trying to give as much help as I can to other people - if I know their children have dyspraxia, I've been able to talk to them about it, and help them understand it better.
Since the last time I posted, I had a call from the local Talking Therapies, and couldn't believe that the person who phoned me has dyspraxia herself, so that was unexpected. It was good to speak to someone who understood, but unfortunately there still doesnt seem to be any help on the NHS. However the lady at the Dyspraxia Foundation is going to speak to someone and get back to me.
I'm thinkng it may be worth me going private - I'm going to see how I feel. My Dad is thinking of a test for dyslexia - he watched the Shane Lynch programme I saw on 7th January and he so related to it.
I know people say to me "you're still the same person" and "why does it matter if you have a diagnosis" but I feel it does matter to me, although I am a bit worried about it. More worried in case I don't have it, because whre does that leave me?
Anyway I do feel more positive about things now. I think I'd like to get more involved with the Dyspraxia Foundation, helping younger people, because I can see from people I know that getting help earlier on in life would have been so good. The same for my Dad and his writing - luckily he's self-employed, and my Mum does his paperwork, but if that hadn't been the case I'm not sure if he would have got on so well as he has (he's a builder and very practical - the complete opposite of me!) He said he felt he could easily have ended up in prison like some of the people on the programme if it hadn't been for his Dad and the fact that he was able to go and train to be a plumber and later go into partnership with his Dad building. Unfortunately it's not always so easy nowadays as you need paper qualifications a lot more. But now he has been doing literacy classes his writing has come on so much it's quite amazing! And he is 70 now, so it is never too late to do something. It just seems sad that it can take so long. Let's hope things improve in the future. I'm trying to give as much help as I can to other people - if I know their children have dyspraxia, I've been able to talk to them about it, and help them understand it better.
Re: NOT SURE WHERE TO GO NEXT
Hi Nicky,
Sorry for the slow response, I missed your question in the response. Yes, I did pay to see a private Ed Psych for my assessment.
I wouldn't feel too bad about the NHS being over-stretched. Every public sector manager will be worrying about their own budget, but with my tax paying hat on, I want to see money spent effectively overall - I'm not too interested in whose budget this that or the other comes from, as it all comes from the taxes we pay in the end. I don't think that diagnosis of dyspraxia is at all expensive compared to many medical treatments, but if it proves the difference between sitting at home getting benefits (not sure whether or not that's the case for you, but you get the idea) and being in work with a limited amount of support (or even just a bit of understanding) then I'd imagine that there is definitely a big cost saving over all.
Sorry for the slow response, I missed your question in the response. Yes, I did pay to see a private Ed Psych for my assessment.
I wouldn't feel too bad about the NHS being over-stretched. Every public sector manager will be worrying about their own budget, but with my tax paying hat on, I want to see money spent effectively overall - I'm not too interested in whose budget this that or the other comes from, as it all comes from the taxes we pay in the end. I don't think that diagnosis of dyspraxia is at all expensive compared to many medical treatments, but if it proves the difference between sitting at home getting benefits (not sure whether or not that's the case for you, but you get the idea) and being in work with a limited amount of support (or even just a bit of understanding) then I'd imagine that there is definitely a big cost saving over all.
Re: NOT SURE WHERE TO GO NEXT
Hi Phil,
Thanks very much for your post. Don't apologise - there's such a lot of info on here it's easy to miss things, and I do tend to ramble on a lot!
No, I suppose I shouldn't put myself down. I think you have to be quite assertive to get anywhere with this, don't you? It's the same for people I know whose children has dyslexia/dyspraxia etc, especially when it's mild and the child isn't having obvious problems, they have to fight quite hard. I agree with you that helping people to get back into work is far better than them becoming depressed/living on benefits. Although I'm not on benefits, as my husband works, I'm fortunate I don't absolutely need to work. Having said that, I could do with a bit of extra money (who couldn't?) and I'd like to take some pressure off him. I have lost quite a bit of confidence, and I think it would be better for everyday if I could get out and do more. I do feel more positive, because I realise that this dyspraxia has been at the root of a lot of my depression, and this in itself is helping and I am much less depressed. The doctor said I should think about cutting down on the anti-depressants and phasing them out in next few months (another saving for NHS).
I am still thinking about going to someone privately, but I'll wait to hear back from the Dyspraxia Foundation. On the plus side, I do feel the GP has listened to me and taken seriously what I said. perhaps I shouldn't expect not to be taken seriously, but sadly that is often the case! Anyway I'll let you know how I get on.
Thanks again, Nicky.
Thanks very much for your post. Don't apologise - there's such a lot of info on here it's easy to miss things, and I do tend to ramble on a lot!
No, I suppose I shouldn't put myself down. I think you have to be quite assertive to get anywhere with this, don't you? It's the same for people I know whose children has dyslexia/dyspraxia etc, especially when it's mild and the child isn't having obvious problems, they have to fight quite hard. I agree with you that helping people to get back into work is far better than them becoming depressed/living on benefits. Although I'm not on benefits, as my husband works, I'm fortunate I don't absolutely need to work. Having said that, I could do with a bit of extra money (who couldn't?) and I'd like to take some pressure off him. I have lost quite a bit of confidence, and I think it would be better for everyday if I could get out and do more. I do feel more positive, because I realise that this dyspraxia has been at the root of a lot of my depression, and this in itself is helping and I am much less depressed. The doctor said I should think about cutting down on the anti-depressants and phasing them out in next few months (another saving for NHS).
I am still thinking about going to someone privately, but I'll wait to hear back from the Dyspraxia Foundation. On the plus side, I do feel the GP has listened to me and taken seriously what I said. perhaps I shouldn't expect not to be taken seriously, but sadly that is often the case! Anyway I'll let you know how I get on.
Thanks again, Nicky.