Guest guest Posted February 26, 2004 Report Share Posted February 26, 2004 Dear Glenna, Many thanks for your kind compliments, if only to re-assure me that what you've read from me was of some benefit to you in some way. During the past eight years or so, since being under my current neurologist who treats his cases more beyond that of just another statistic, has put a whole new complexion towards all aspects of treating epilepsy for me, and the way I view treatments in general. Over the last forty years you might say I've been around the block a few times, picking up experiences of treatments and also being the guinea pig too, on more than one occasion. No doubt other epilepsy sufferers may feel the same way as myself, but have felt in the past few years able to put something back into the mix - so to speak - offering up any views, opinions or experiences that might help others for their futures. I help contribute to a chatroom and community/group connected with it any feedback I can offer, even quizzing my consultant for answers others may be seeking, he's pretty relaxed about it all and apparently has no objection to me being the conduit between him and the person doing all the asking. If only all medical staff had that attitude, I guess he's also confident he can trust in me not to distort or paint differently from the direct answers he may offer. I have been very fortunate to have a large, close, loving family around me, from parents to grandparents and aunts to uncles too, these days in most cases families are smaller and more scattered or so it seems. As epilepsy can seem, certainly to others, as quite a trivial illness, to the sufferers and parents/caregivers it can be quite debilitating illness. Conveying to others the symptoms, warnings, the seizures and after-effects can be quite a trial if not near on impossible, let alone explaining all the aspects to your consultant too. It's for all these reasons I've viewed my experiences as a means that others may learn from, guinea pig wise, or otherwise which might help lesson or overcome some of the unpleasant experiences people with epilepsy can go through. It's just a pity I didn't come across The Ketogenic Diet years ago, enough to have given it a try, so I feel less able to contribute anything towards the main thrust of our group, Once again, many thanks, Phil Re: Thanks Phil Hi Phil, I want to thank you again for taking the time to share your experiences with us here in the group. I guess I eavesdropped a bit on your message to Saro and Rohan, but I found it fascinating. It is really helping me to have an adult put some of these things in context, things I can only wonder about with my 6 year old daughter (feelings, side affects, etc.). Reading your story has also helped me be even more determined to do my best to help her conquer this. I wish you well, Glenna " The Ketogenic Diet....a realistic treatment option, NOT just a last resort! " List is for parent to parent support only. It is important to get medical advice from a professional keto team! Subscribe: ketogenic-subscribe Unsubscribe: ketogenic-unsubscribe ------------------------------------------------------------------------------ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 26, 2004 Report Share Posted February 26, 2004 Dear Glenna, Many thanks for your kind compliments, if only to re-assure me that what you've read from me was of some benefit to you in some way. During the past eight years or so, since being under my current neurologist who treats his cases more beyond that of just another statistic, has put a whole new complexion towards all aspects of treating epilepsy for me, and the way I view treatments in general. Over the last forty years you might say I've been around the block a few times, picking up experiences of treatments and also being the guinea pig too, on more than one occasion. No doubt other epilepsy sufferers may feel the same way as myself, but have felt in the past few years able to put something back into the mix - so to speak - offering up any views, opinions or experiences that might help others for their futures. I help contribute to a chatroom and community/group connected with it any feedback I can offer, even quizzing my consultant for answers others may be seeking, he's pretty relaxed about it all and apparently has no objection to me being the conduit between him and the person doing all the asking. If only all medical staff had that attitude, I guess he's also confident he can trust in me not to distort or paint differently from the direct answers he may offer. I have been very fortunate to have a large, close, loving family around me, from parents to grandparents and aunts to uncles too, these days in most cases families are smaller and more scattered or so it seems. As epilepsy can seem, certainly to others, as quite a trivial illness, to the sufferers and parents/caregivers it can be quite debilitating illness. Conveying to others the symptoms, warnings, the seizures and after-effects can be quite a trial if not near on impossible, let alone explaining all the aspects to your consultant too. It's for all these reasons I've viewed my experiences as a means that others may learn from, guinea pig wise, or otherwise which might help lesson or overcome some of the unpleasant experiences people with epilepsy can go through. It's just a pity I didn't come across The Ketogenic Diet years ago, enough to have given it a try, so I feel less able to contribute anything towards the main thrust of our group, Once again, many thanks, Phil Re: Thanks Phil Hi Phil, I want to thank you again for taking the time to share your experiences with us here in the group. I guess I eavesdropped a bit on your message to Saro and Rohan, but I found it fascinating. It is really helping me to have an adult put some of these things in context, things I can only wonder about with my 6 year old daughter (feelings, side affects, etc.). Reading your story has also helped me be even more determined to do my best to help her conquer this. I wish you well, Glenna " The Ketogenic Diet....a realistic treatment option, NOT just a last resort! " List is for parent to parent support only. It is important to get medical advice from a professional keto team! Subscribe: ketogenic-subscribe Unsubscribe: ketogenic-unsubscribe ------------------------------------------------------------------------------ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 27, 2004 Report Share Posted February 27, 2004 Hi Phil, I can only say how grateful I'm too, to you for sharing with us your experiences. BTW sorry for writing on the subject line of my previous post. I'll write again asking more questions/details if you don't mind. You seem to be coping remarkably well with your epilepsy and associated problems and it's an inspiration to us. We are having a few problems with Rohan's school where they are not letting him join his peers at lunch times and breaks (he has to stay in a room with other kids who have a disability ) They also want him to wear his helmet all the time instead of just when moving from class to class etc. They are being too cautious and Rohan feels (so do we) that it is unnecessasrily restricting his life even further. Sorry for the moan! I do wish more dr.s were like yours. I'm looking forward to seeing that Cyberonics Video someday. Saro Glenna Steele wrote: > Hi Phil, > I want to thank you again for taking the time to share your > experiences with us here in the group. I guess I eavesdropped a bit > on your message to Saro and Rohan, but I found it fascinating. It is > really helping me to have an adult put some of these things in > context, things I can only wonder about with my 6 year old daughter > (feelings, side affects, etc.). Reading your story has also helped > me be even more determined to do my best to help her conquer this. > > I wish you well, > > Glenna > > > > " The Ketogenic Diet....a realistic treatment option, NOT just a last > resort! " > > List is for parent to parent support only. > It is important to get medical advice from a > professional keto team! > Subscribe: ketogenic-subscribe > Unsubscribe: ketogenic-unsubscribe > > > > > ------------------------------------------------------------------------ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 28, 2004 Report Share Posted February 28, 2004 Hi Phil, Thanks for your support . I started explaining about Rohan's school and it became long, so I decided to post it to your direct e-mail address. Hope that's OK with you. Saro......Rohan's mum Philip Lowe wrote: > Dear Saro & Glenna, > > Many thanks for your compliments from you both, if only to re-assure > me I haven't simply been posting spam through our group. > > Saro you astonish me in the way Rohan is being treated at school Quote Link to comment Share on other sites More sharing options...
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