Re: To all.

[Guest guest]

HI Simon.

Yes, Neurofeedback can help you to regain function.

As far as trying to keep your eyes open, the majority of the information we gather with an assessment can be gathered eyes closed.

Where are you located? I assume not in the Sates, as you refer to the NHS< which I assume is National Health Service.

in Michigan, USA

To all.

My name is Simon. I am 44 and received my head injury on the 12th may 2001. I am not exactly sure what I want/need to ask here. If I may begin with my accident. I was on my motorbike, sorry to all anti-bikers. I struck my head on the cars roof, in spight of my expensive AGV helmet I was knocked out. I was in a coma for the next 2 weeks and then spent the following 12 months in a rehabilitation hospital.Not wishing to say anything detrimental, but :- Any NHS assistance stopped a long time ago. Unfortunately, for me, I didn't and still don't believe I have finished improving. All be it a bit slow, too slow to warrant any more of MY tax paying money on.I still believe I WILL walk and talk again. It is only as a jazz musician friend of my brothers, kindly lent me this equipment, that I feel I can now seriously begin to help, myself ! Symptoms :-Where does one begin ? Well , thankfully, they are all physical. It is similar to having a stroke, as in all my right side doesn't function as it should. Please allow me to elaborate on this. It is, after all this time being dormant, extremely week. My hand NOW, no thanks to the NHS, curls in. I am having to key this using one LEFT finger, being right handed for the previous 40 years means it is just as well I had plenty of patience. This brings me round to no. 2 . Being my weirdest and the most restricting disability, my eyes keep on closing for no apparent reason. I then struggle to re-open them. Which makes for, shall I say an interesting challenge !, when attempting to do the minute with your eyes open test. I can no longer walk, indeed I find it, currently !, impossible to even stand unaided. I do use, like a bally bar fixed to the wall, to assist my walking. Although granted not enough, as the key as I am led to believe, is repetition ? Well as I've now spent a further 2 hours, having spent 1 hour last night, I suppose I better sign off.Amy replies gratefully received, even if you just want to say hello.Simon.

[Guest guest]

--- In braintrainer , " St. Clair "

Hello and thank you for the reply. You are quite right I am in the UK,

sadly. As you work in care I presume that the " we " you referred to was

just a generalisation, What I mean is that you aren't anything to do

with the manufacturers ?

May I please ask you :- Is your connection purely professional, or do

you use one for personal reasons ? How have you found it ? What do you

know about head injury's ? For example, are you aware which program is

the most suited for my particular symptoms ?

I must appologise for asking so many questions.

Simon.

Feel free to reply personaly to kilvi@... .

[Guest guest]

Simon,

I, like many of us, am a provider as well as use the neurofeedback for personal use.

Yes, I have alot of experience with head injuries. In my opinion, neurofeedback is the best thing available to help people like yourself recover more fully from the injury.

If you have a set-up with BioExplorer software, and the Pendant, Pocket, Infinity, Brainmaster or several other systems, you can do traditional neurofeedback with the "TLC" assessment by Van Deusen (moderator of this group), found at www.brain-trainer.com There are many on this list who can help you remotely. There are some "TLC" users in England who may be able to help you face-to-face,depending on your location.

Professionally, now, I also like the LENS system, but it is quite expensive and may not be available to you because of that.

mary

Re: To all.

--- In braintrainer , " St. Clair" Hello and thank you for the reply. You are quite right I am in the UK, sadly. As you work in care I presume that the "we" you referred to was just a generalisation, What I mean is that you aren't anything to do with the manufacturers ? May I please ask you :- Is your connection purely professional, or do you use one for personal reasons ? How have you found it ? What do you know about head injury's ? For example, are you aware which program is the most suited for my particular symptoms ?I must appologise for asking so many questions.Simon.Feel free to reply personaly to kilvitiscali (DOT) co.uk .

[Guest guest]

--- In braintrainer , " St. Clair "

I have to apologise, once again, as you are way over my understanding

of it all ! I feel I NEED to go and get my damaged, haha, brain round

it all.

Simon.

[Guest guest]

Simon, neurofeedback is pretty complex, and if you can find someone to either treat you, or learn it with you, that will definitely be to your advantage.

mary

Re: To all.

--- In braintrainer , " St. Clair" I have to apologise, once again, as you are way over my understanding of it all ! I feel I NEED to go and get my damaged, haha, brain round it all. Simon.

[Guest guest]

Hi Simon--

Your determination and persistence to seek healing are really the

first and most important steps. This listserv is full of generous

souls, so you will find support here. However, since there is a

substantial learning curve to implementing neurofeedback, it is

worth finding a practitioner in your vicinity who could get you

going. What equipment do you have?

Although there are others who are more experienced with traumtic

brain injury--and they, too, have encouraging cases to share--I have

recently had the keen pleasure of working with a teenager with brain

stem damage. His global apraxia prevented him from making the

phyical movement and speech he desired. In the past five months he

has gained the ability to keep his head erect and his eyes from

wandering most of the time. He now has the strength and coordination

to tie his shoes and type, as well as hand write his final exams

without assistance. He has moved up a lane in math and dropped an

aide in one of his classes. He is able to speak well enough and often

enough to annoy his siblings and argue with his father (Never has

arguing been such fun to witness!) There have been many other

improvements in sleep, anxiety reduction, and cognitive issues, as

well. Although neurofeedback can't claim credit for his chutzpah, I

was privately thrilled to learn that when a room of professionals

told him he couldn't take mainstream high school classes and that

college would not be an option, his response was to say he would

prove them wrong! They were startled into letting him take Chemistry.

Welcome,Simon!

Jane

>

> My name is Simon. I am 44 and received my head injury on the 12th

may

> 2001. I am not exactly sure what I want/need to ask here.

> If I may begin with my accident. I was on my motorbike, sorry to

all

> anti-bikers. I struck my head on the cars roof, in spight of my

> expensive AGV helmet I was knocked out. I was in a coma for the

next

> 2 weeks and then spent the following 12 months in a rehabilitation

> hospital.

> Not wishing to say anything detrimental, but :- Any NHS assistance

> stopped a long time ago. Unfortunately, for me, I didn't and still

> don't believe I have finished improving. All be it a bit slow, too

> slow to warrant any more of MY tax paying money on.

> I still believe I WILL walk and talk again. It is only as a jazz

> musician friend of my brothers, kindly lent me this equipment, that

I

> feel I can now seriously begin to help, myself !

> Symptoms :-

> Where does one begin ? Well , thankfully, they are all physical. It

> is similar to having a stroke, as in all my right side doesn't

> function as it should. Please allow me to elaborate on this. It is,

> after all this time being dormant, extremely week. My hand NOW, no

> thanks to the NHS, curls in. I am having to key this using one LEFT

> finger, being right handed for the previous 40 years means it is

just

> as well I had plenty of patience. This brings me round to no. 2 .

> Being my weirdest and the most restricting disability, my eyes keep

> on closing for no apparent reason. I then struggle to re-open them.

> Which makes for, shall I say an interesting challenge !, when

> attempting to do the minute with your eyes open test. I can no

longer

> walk, indeed I find it, currently !, impossible to even stand

> unaided. I do use, like a bally bar fixed to the wall, to assist my

> walking. Although granted not enough, as the key as I am led to

> believe, is repetition ?

> Well as I've now spent a further 2 hours, having spent 1 hour last

> night, I suppose I better sign off.

> Amy replies gratefully received, even if you just want to say hello.

> Simon.

>

[Guest guest]

In braintrainer , " janepillerwilson "

Hello Jane, thabk you for your reply. Are you UK based ?

I am at my parennts at predent, as my better half who fly's for a

living is in Cuba on a trip ! However, if my memory serves me well,

which it doesn't, the machine is called a NeuroWave JR.

As I can no longer work for a living money, although not exactly an

issue, is tight. A local practitioner who could get me going MIGHT be

too costly. " His global apraxia " , you have already gone way over my

tiny little damaged head, haha. However the child in question has/is

reslly making good ground.

" I was privately thrilled to learn that when a room of professionals

told him he couldn't take mainstream high school classes and that

college would not be an option, his response was to say he would

prove them wrong! They were startled into letting him take Chemistry. "

That is certainly progress, if not one in the eye to all the

bureaucrats. I too have had a skin full of all the red tape, and the

cloke and dagger, surrounding it all ! I was even told by my NHS

physio, that I would have difficulty even standing let alone taking a

step !

WHAT DO THEY KNOW ?????????????????

Simon.

[Guest guest]

Hi Simon,

I know that St. Clair has recently suggested that you investigate working with a practitoner, particularly someone who has a LENS system if possible. I recall that we have recently had a post on the LENS professionals' discussion list from a new LENS practitioner in the UK who might be a useful contact for you. Her first name is Nuala, and her email is Harry.Bingham@.... Perhaps she would be aware of someone near to your location who might possibly be willling to help you get started. The worst thing that could happen is that she won't know of anyone, so I suggest that you email her and hope for the best. If you have fine motor difficulties with one of your hands it may still be possible to set up electrodes on yourself, but that sounds awfully difficult. So I second 's suggestion that you try to start out with a practitioner's help. I understand that money may be a issue, and encourage you to stay calm and cultivate your creativity regarding this. Perhaps you'll connect with someone who needs a patient with whom to practice a new procedure. You just never can tell how things might work out. At the very least, perhaps the friend who lent you the equipment would be willing to hook you up with the electrodes.

I use neurofeedback personally and professionally and have no financial ties to any manufacturer or developer. You can do an amazing amount of good for yourself with even very old or basic equipment. I am not familiar with the Waverider series of equipment. Do you have any pre-set protocols in the software?

I am cheering you on and wishing you well from the US.

Merrifield

-------------- Original message from "simon kilvington" : --------------

--- In braintrainer , " St. Clair" Hello and thank you for the reply. You are quite right I am in the UK, sadly. As you work in care I presume that the "we" you referred to was just a generalisation, What I mean is that you aren't anything to do with the manufacturers ? May I please ask you :- Is your connection purely professional, or do you use one for personal reasons ? How have you found it ? What do you know about head injury's ? For example, are you aware which program is the most suited for my particular symptoms ?I must appologise for asking so many questions.Simon.Feel free to reply personaly to kilvitiscali (DOT) co.uk .