Guest guest Posted October 8, 2002 Report Share Posted October 8, 2002 Yeah, this coming and going of thoughts is something I worked with the other day. It came up for me again tonight...so here I am...continuing to inquire until I don't have the thought: My work should flow in a certain manner. Then when/if it comes again, back to inquiry. *mona Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 8, 2002 Report Share Posted October 8, 2002 Mona, Your work DOES flow in a certain manner, it is uniquely you! That is what it is! Take a look see and laugh as you got it! You are trying to see in a certain way and YOUR way keeps screaming at you " hey look at me " this is " how I am " . April Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 7, 2003 Report Share Posted January 7, 2003 Hi Sam, Nice to meet you. ) It's OK to feel scared about turnabouts and investigating truth. I think there is a soft and loving way to live the turnarounds too. I have experienced the self-dislike thing, and the funniest thing helped get me feel better. It was a really catchy song I saw on TV performed by Meredith , called 'Bitch'. I related to it so well! The song says all the things a person can be, like saint, lover, angel, mother, (and bitch was just one personality... and I found it!! It's definitely in there when I feel pushed further than I'm ready to go, for example. Somehow hearing ALL the qualities mentioned in the song put things in perspective for me. My husband was most amused and intrigued by how I took so strongly to this particular song. Now it is a joke between us. ) PMT isn't much fun, I know. There are some natural things which help some women have an easier time of it. I guess these herbs may help calm the fluctuating hormones down. A good naturopath or alternative health practitioner may be able to give some advice. Sending a hug, jani (unknown) Hello, I've been following the group's correspondence for about 1 month and I would like to say thank you. Thank you for sharing and for caring about each other, for taking the time to write and for being brave enough to divulge your stories so openly and vulnerably. I have been greatly touched by so much of what has been written and have found much solace in what i have read. Yesterday's mail and responses on insomina have been really useful...to realise that the thought ''I am awake'' rather than beating myself with " i must sleep and i'm not'' helped me shift and I am now 'almost' lookng forward to getting into bed. So thank you for that. Specifically, I wondered how to deal with the impact of PMT (premenstrual tension/syndrome) with the work. I am getting better at watching the thoughts come in and in questioning them, but i get to a point where i lose it and feel like i have no control (i've written this one down to inquire in to). I then cry and lash out at my lover, and then beat myself up for attacking such a wonderful man. Every month it seems to be a different thing that he does that gets to me, something that at any other time just wouldn't niggle me and i know that on some level its a gift...the mirror is really talking very loud, butI'm still too caught up in the drama of it all to embrace enquiry of what's going on... If anyone has any advice on making any tentative steps at this I would be so very grateful because i don't like myself when i'm like this and i don't like how i'm treaing my lover. I have written some thougths today that need inquiry such as 'I'm a bad person for having PMT', ' (lover) is sick of my emotional outbursts/abuse', ' will leave me eventually anyway', but there seems lots more in there... Also, ''living the turnarounds'' - how do people really do this? the work has been so useful to me, but I feel don't get as much benefit as I could because i don't push myself to turnaround as openely as i could. To be truthful this scares me, admitting to my boyfriend that I have lied to him for example scares me more than living as a hypocrite...HELP please...is there a soft and loving way to live the turnarounds? Finally have any of you done the work in Europe (i live in Asia, so easier to get to Holland than the US)...I am so drawn to emerging myself for 10 days, but somewhere i hear a voice that says ''another quick fix for all the bagage, it won't last/work'' another thought for the work, i guess. I look forward to reading your words and sharing what i get, and thank you for making the time and caring Sam(antha, but only known as sam) spiro Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 7, 2003 Report Share Posted February 7, 2003 Do you want W to understand the depths of your suffering? (unknown) i want w to suffer is it true? yes is it really true? yes what do want to happen to him i want him to have his heart broken in 1000 little pieces i want to tie him up and leave him on the railroad tracks i want to hit him with poison darts, boxing gloves, baseball bats etc. i want to leave bruises all over his body i want the sexiest hooker in the world to reject him i want him to be stuck inside of me for a day wo - thats alot of vehmenent visual images if you could have that would you be satisfied? picture w - lying on the ground, all his bones are broken and he is almost dead is this what you want? no no, i don't really want anyone to get physically hurt try again you want w to suffer? the answer is still yes - but not physically hurt i want him to feel emotionally wounded like me you want him to feel wounded? yes hopeless do you have any control over what w feels? no is it your business? no and also - you are emotionally wounded is it true? can you really know that is true? no - i might be fine behind this mask of tragic suffering you want w to suffer? still, yes what would this suffering look like? he needs to be like me - hurting and hurting watching the minutes go by so slowly being stuck in a field of emotional muck stuck in quicksand, sinking and sinking and despairing crying his eyes out which is how you feel - so if he felt the same you would feel better? i wouldn't feel so alone ah...is that true? so you want both of you to suffer? maybe i just thought that if he were suffering suddenly i wouldn't be. i could enjoy just watching him suffer. OIC you want w to suffer? yep - still yes... have you enjoyed feeling what you have felt these past few days? no, its agony do you really wish this agony on someone else? yes, w you want w in agony? yes thats not love t to quote bk, its not suprising he left you considering you don't love him anyway hey, that is not fair - that implies i did something wrong perhaps in his perception you did he made an emotional demand - you refused i have the right to refuse that is correct but you don't have a right to dictate how he responds to your refusal but his reaction was irrational egos are often irrational if you wiped away the body, the face, the magnifient hair of w, what would you have? darth vader? cute - try again ok, a ball of light - just like me - maybe much darker than me - not glowing not anywhere near as cute as my ball of light... ho ho ho now you sound exactly like w just kidding - sort of lol that ball of light over there got mad and walked out on you what happened to your ball of light when he left my ball shrunk - got smaller - stopped glowing who controls the ball of light? me can he do it? can he make your glowing ball of light smaller and dimmer? no, sigh - i chose it what is the reality of it? w yells - w walks out - w is mean and bossy and controlling and wishing he were otherwise is? a waste of my time - not my business - i do not have to react to w so he comes, he goes, he comes, he goes - does it have anything to do with you? no, his story - his business you could choose a different reaction hmmm.... you could laugh, you could dance, you could sing w is leaving the house!, you could choose to feel nothing, you could keep glowing in your own happy way i could right now you like the story that w did something to you did he do anything? can he do anything? no - as bk says, i hurt me, but only me so, do you really want w to suffer? no - his suffering is my suffering correct who would you be without this w should suffer story? going about my business thinking about what i need providing myself my own good company not in a state of constant need maybe even a little more forgiving and caring towards him, not that he deserves it ah - more work for another day wanting him to suffer is suffering it is can you think of a peaceful stress-free reason to keep the story? no - it is terribly stressful it keeps me in a state of profound loneliness it cheapens me picture w happy picture w with someone who makes him happy happy family - w with another woman, his kids are there - everyone is hunky dory ah geez, that is hard to do i don't want to see w with someone else being happy so...he can be happy but only with you? thats right - it has to be me thats not love t. don't you think that story is a little controlling? the very thing you accuse him of. you say w is controlling - how about you? can you find it? yeah - sigh, we are the same - i am controlling too. so w has his need to control others story, and you have your need to control w story ook what is the truth t? do you want w to suffer? no no i don't - let him be happy - let me be happy - let us all be happy notice how much your body has relaxed - your chest was so tight yeah, i feel a little better the turnaround? i don't want w to suffer i don't want t to suffer i don't want to suffer suffering thoughts about w my thinking that w should suffer is suffering i don't want to suffer w - oh wow - that is the truth... i don't want to suffer w i don't want to suffer w he walked out - he gave you what you wanted - he ended your suffering holy cow....i can't believe this - that is the truth - i was spared look how much lighter you feel now it is amazing i was spared, i was spared.... right, and because he left, you are even spared the customary guilt you might have felt if you had to be the one to walk out well if he had kept behaving the way he had, yelling and being mean and bossy, i would have had to walk so he did you a tremendous favor he did - and it brought me back to the work Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 9, 2003 Report Share Posted February 9, 2003 In a message dated 2/9/2003 4:10:01 AM Pacific Standard Time, tabrinaweaver@... writes: > if a man acts as mean to you as he could possibly be - does it mean > he loves it? > > well he does it > > but does he love it? can you really know thats true? maybe he hates > himself more than loves it - i mean he got very agressive with you, > which only shows how ferocious he has to be with it in act out his > story. perhaps inside he will never believe it. isn't his story > about him anyway? rather than being about you? > Hi Tabrina....you wrote this part about W up there...about how he might not actually love hurting you. And then you wrote this part down here about how you love to hurt you. > so who loves to hurt you? > > me, and only me > > i love you tabrina > i love you tabrina I know this is one of your turnarounds and I'd still like to ask you...Is it true...that you love to hurt yourself? What's going on for you when you say that? You might be the one who does hurt you, yeah. Does that mean that because you do it, you love it? And if you do love it, what do you love about it? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 9, 2003 Report Share Posted February 9, 2003 Tabrina... grEAT jOB... dong the work... doesnt katie say something about when people are hurtful its their way of showing love... At least that is what I heard at the cleanse when that girl was talking about her mother beating her... We're either looking for love or expressing love... also what Ive read somewhere.you probably have read that as well.. Also the closer we are to someone the more we hurt them... and the angrier we get If you felt indifferent you would not be hurt... Tolle says play with it all --take it lightly --in his tape on relationships.. he says people are just forms if they stay fine if they leave fine... I'm not there yet...100% i see that is exactly what you are doing... trying to lighten up --good.work... ... love, roslyn Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 9, 2003 Report Share Posted February 9, 2003 i love you tabrina -i love you tabrina- wonderful freeing work- you are awesome! lovingly laurie (unknown) men love to hurt me is it true? yes is it really true? yes are you hurt? yes how do you know you are hurt? there is a weight over my heart that feels like a stone i have been crying and crying i am shaky and unsteady on my feet my mind keeps re-thinking and re-running what happend with w even though i desperately want it to stop and what do you visualize in the midst of this apparent hurt? earthquakes big cracks in the earth drowning in an ocean of my tears jumping off a cliff throwing myself in front of a speeding car crashing i am drifting alone in space can't breath just falling may i observe that none of these things are happening to you? well they happen in my mind and it gets you? i get to suffer - really, really suffer deep in my soul oh - so its not just surface suffering, it DEEP suffering lol...don't you dare make me laugh - i have no intention of giving up my suffering yet. i'm going to wallow in it for awhile. so men love to hurt you? is it true? every male on the planet wants to hurt you? yes - they all have their evil little plans oh really? well...i guess i can't know if it is true of all of them some of them might be loving - tender - like the guys who belong to this group seem to care about things beside hurting women so w loved to hurt you? yes and your proof of this was? he yelled at me he manhandled me he berated me he lied to me he manipulated me when i asked him to let me leave his car he locked the door so i coudln't get out he told me he liked to masturbate while thinking of my daughters he loved to tell me how much he likes young women he blamed his obsession with young women on his abundant sex drive he bragged about his sex drive was just as active as it was when he was younger he kept telling me he is a very open and sexual person and i shouldn't be so uptight he loved movies with violence, horror, mayhem, macho shithead stuff in them he insisted he didn't need therapy he insisted he didn't need anyone after he told me about the masturbation and i was crying he told me that this proves he really loves me because it shows he was willing to be totally honest with me he said that if i can't love him after knowing the truth about him, i never loved him anyway he told me to stop crying - that he didn't want to hear me crying when i asked him to let me leave his car he locked the door so i coudln't get out ok, so thats your proof - does anything on this list prove without a shadow of a doubt that w liked to hurt you? well it is obvious isn't it? perhaps you can't ever know what motivates another person well i know what motivates me - i know what does and doesn't feel good so stay in what you need and forget about this endless speculation about him - not your business and its suffering if a man acts as mean to you as he could possibly be - does it mean he loves it? well he does it but does he love it? can you really know thats true? maybe he hates himself more than loves it - i mean he got very agressive with you, which only shows how ferocious he has to be with it in act out his story. perhaps inside he will never believe it. isn't his story about him anyway? rather than being about you? i suppose that could be true... does everything other people do have to be about you? no so....w loved to hurt you? i don't know - could be no well look at the tension you just released in your shoulders... who would you be without this story? not hurting so much not feeling singled out not being stuck in a disaster or horror movie maybe having the tinest spark of compassion for him - which doesn't mean i am willing to take his stuff - but does mean i can identify with a person in pain not waiting for the meaness to start with other men very good t.... can you think of a peace reason to keep the w loved hurting me story? well if i keep it i won't let anyone else get near me well then you may as well be locked in a cage - the prisoner of w even if only in your mind...this doesn't sound peaceful ok, no peaceful reason - just some warped " protect myself in weird ways " kind of reason do you need protection? perhaps from my own distorted thinking hmmm...turnaround? men don't love to hurt women - could be just as true men don't love to hurt - could be true some men don't love - i can't know this is true some men love to hurt themselves - if they do its just like i do w didn't love to hurt me - might be true t didn't love to hurt t - might be true my thinking w loved to hurt me - hurts me - VERY true its my thinking - oh my gosh, here we go again with this tought i'm hurting about w and he doesn't even have to be in the room wow... do you have to be hurting over w? no...i could try a different response i could laugh and say wow, what a weirdo i could check it off my to do list - ok, that story is done i could stop trying to figure it out and pin it on me somehow i could say hey, i don't know whats true but thats not my scene i could say, been there, done that, bought the w t-shirt - i use it to clean the litter box i could recognize that everything serves i could say " better love next time " with a wry chuckle i could pet kitties and play scrabble and have a marvelous time i could smile i could say hey nonny nonny i could mentally bottle the story and use it for a character in a novel men love to hurt you? no - impossible i'm attaching a story to a penis - ridiculous how can a body part have evil intentions? its just a body part so who loves to hurt you? me, and only me i love you tabrina i love you tabrina Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 9, 2003 Report Share Posted February 9, 2003 thank you for bring this " love to hurt myself " issue to my attention mona. also, thanks for your comments regarding labels. i have posted a few sans subject just to see how it feels not to label what i think is my story - my truth. what am i upset about? hell if i know! >) anyway....good question - do i love to hurt myself? i must i won't let the relationship thing rest i could stay locked in my room and never come out but i do i could choose to never interact with men at all but i do i'm as corny as kansas in august - i still believe in the love story i'd rather have the love story than live without hurt i will go through this phase where i say i will never date again. but then i start remembering all the things i really like about men the way they smell the way their energy excites me - refreshes me the way i can feel happy around a man and focus on him instead of me the way their hair feels in my fingers how much i love to be held by someone who has big arms and can comfort me and b4 i know, i'm back on the circuit again looking for my man fix i have long suspected i am addicted to suffering while i have been able to curb my suffering in some areas, and the work has been a tremendous help with this - i still suffer these relationship dramas - still can't seem to settle like with w - he has committed an unforgiveable breach of trust i can never talk to him again but emotionally i still long for him and want things to be ok i'm sick some areas i just don't seem to make any progress like attracting mean men - who never act mean in the beginning but do i love it? feels like i hate it - yet i keep choosing it my answer to you mona is that i don't know the answer i don't know if i love to hurt myself still addicted to the cinderella story anyway, thanks for asking, and i will think about it more today > In a message dated 2/9/2003 4:10:01 AM Pacific Standard Time, > tabrinaweaver@y... writes: > > > if a man acts as mean to you as he could possibly be - does it mean > > he loves it? > > > > well he does it > > > > but does he love it? can you really know thats true? maybe he hates > > himself more than loves it - i mean he got very agressive with you, > > which only shows how ferocious he has to be with it in act out his > > story. perhaps inside he will never believe it. isn't his story > > about him anyway? rather than being about you? > > > > Hi Tabrina....you wrote this part about W up there...about how he might not > actually love hurting you. And then you wrote this part down here about how > you love to hurt you. > > > so who loves to hurt you? > > > > me, and only me > > > > i love you tabrina > > i love you tabrina > > I know this is one of your turnarounds and I'd still like to ask you...Is it > true...that you love to hurt yourself? What's going on for you when you say > that? You might be the one who does hurt you, yeah. Does that mean that > because you do it, you love it? And if you do love it, what do you love about > it? > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 26, 2003 Report Share Posted August 26, 2003 I´ll keep you on my mind and cross my fingers for you all. Take care, Bianca Ken Jennings wrote: >HeyAll, > >I took Kennedy for a routine abdominal ultrasound and they think that maybe >she might have a spot on her left kidney. Kennedy has >Hemi-Hypertraphy and kids with this are prone to abdominal tumors. > >Please be thinking of us during this scary time. > >Thanks, > > > > > and Kennedy(4yrs,pmg) >http://www.geocities.com/kenjenjennings/ > >_________________________________________________________________ >Help protect your PC: Get a free online virus scan at McAfee.com. >http://clinic.mcafee.com/clinic/ibuy/campaign.asp?cid=3963 > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 26, 2003 Report Share Posted August 26, 2003 Prayers are coming your way!! ~, , Alina, & Jenna ( 1 year with PMG ) (unknown) HeyAll, I took Kennedy for a routine abdominal ultrasound and they think that maybe she might have a spot on her left kidney. Kennedy has Hemi-Hypertraphy and kids with this are prone to abdominal tumors. Please be thinking of us during this scary time. Thanks, and Kennedy(4yrs,pmg) http://www.geocities.com/kenjenjennings/ _________________________________________________________________ Help protect your PC: Get a free online virus scan at McAfee.com. http://clinic.mcafee.com/clinic/ibuy/campaign.asp?cid=3963 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 27, 2003 Report Share Posted August 27, 2003 How scary. I do hope that your little one is okay. Please give her a big hug from me. I'm sure that our Hannah will put in a good word for her. love and hugs (mum to angel Hannah) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 27, 2003 Report Share Posted August 27, 2003 , Thank you. I am trying not to think to much about it right know so that I don't freak myself out. Tuesday is the CT and I will just wait and take things from there. and Kennedy(4yrs,pmg) http://www.geocities.com/kenjenjennings/ > >Reply-To: polymicrogyria >To: polymicrogyria >Subject: Re: (unknown) >Date: Wed, 27 Aug 2003 16:41:58 +1000 > > >How scary. I do hope that your little one is okay. Please give her a big >hug from me. I'm sure that our Hannah will put in a good word for her. >love and hugs > (mum to angel Hannah) > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 1, 2003 Report Share Posted October 1, 2003 Hi there Micheal and Io I cannot help you in the New York area as we were in London, UK but are now in Barbados, West Indies but I can tell you that cranial osteopathy (sacral therapy) has really helped our little girl Arianne aged 19 months. It is impossible to prove scientifically but since she was 9 months old we have been having weekly sessions with small breaks every so often and she has always enjoyed them. She is very content afterwards and there usually follows a good nights sleep. It has really helped with her bad teething. You do have to find a practitioner who you feel very comfortable with and if you feel there is no improvement in the first three sessions or so try another one as they all have slightly different approaches. I have not written much on this website but thank you to all - both my husband and I have found it all so useful- in fact our main source of information. Best wishes Fiona Blackley (mother of Arianne aged 19 months) Neil Blackley Cornucopia 4 Polo Ridge Holders Hill St Barbados t 001 m 001 neil.blackley@... (unknown) Hi everyone: My name is Demos. My daughter, Io, has not been 'definitively' diagnosed with PMG, but that's where Dr. Dobyns is leaning in terms of his reading of her MRIs. We've one more chromosome test to run. Io is 15 months, very socially alert and loving, though not able to sit on her own or roll over on her own. Nor can she reliably raise her arms, grasp object, or swallow foods (she is still being breastfed by my wife, Ali, and bottle-nursed by our excellent babysitter.) She's receiving the usual PT, OT and ST through Early Intervention here in Brooklyn. Recently the woman who fitted her with orthotics suggested cranialsacral therapy. I was wondering if anyone in this group had tried that with their children, whether they found it helpful, and, if so, whether they had it done in the New York area? Many thanks _________________________________________________________________ Get MSN 8 Dial-up Internet Service FREE for one month. Limited time offer-- sign up now! http://join.msn.com/?page=dept/dialup Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 4, 2003 Report Share Posted October 4, 2003 Thanks so much for your advice, Fiona -- I'm so glad it helped little Arianne! I think we've found a practitioner here in New York, and will definitely keep the rest of the list posted if it seems like it might be useful to others. Best wishes, and Ali Demos Io Demos (15 months) > >Reply-To: polymicrogyria >To: <polymicrogyria > >Subject: RE: (unknown) >Date: Wed, 1 Oct 2003 12:36:17 -0400 > > >Hi there Micheal and Io >I cannot help you in the New York area as we were in London, UK but are >now in Barbados, West Indies but I can tell you that cranial osteopathy >(sacral therapy) has really helped our little girl Arianne aged 19 >months. It is impossible to prove scientifically but since she was 9 >months old we have been having weekly sessions with small breaks every >so often and she has always enjoyed them. She is very content >afterwards and there usually follows a good nights sleep. It has really >helped with her bad teething. You do have to find a practitioner who >you feel very comfortable with and if you feel there is no improvement >in the first three sessions or so try another one as they all have >slightly different approaches. >I have not written much on this website but thank you to all - both my >husband and I have found it all so useful- in fact our main source of >information. >Best wishes >Fiona Blackley (mother of Arianne aged 19 months) > > >Neil Blackley >Cornucopia >4 Polo Ridge >Holders Hill >St >Barbados >t 001 >m 001 > neil.blackley@... > (unknown) > >Hi everyone: > >My name is Demos. My daughter, Io, has not been 'definitively' >diagnosed with PMG, but that's where Dr. Dobyns is leaning in terms of >his >reading of her MRIs. We've one more chromosome test to run. > >Io is 15 months, very socially alert and loving, though not able to sit >on >her own or roll over on her own. Nor can she reliably raise her arms, >grasp >object, or swallow foods (she is still being breastfed by my wife, Ali, >and >bottle-nursed by our excellent babysitter.) She's receiving the usual >PT, OT >and ST through Early Intervention here in Brooklyn. > >Recently the woman who fitted her with orthotics suggested cranialsacral > >therapy. I was wondering if anyone in this group had tried that with >their >children, whether they found it helpful, and, if so, whether they had it > >done in the New York area? > >Many thanks > > >_________________________________________________________________ >Get MSN 8 Dial-up Internet Service FREE for one month. Limited time >offer-- >sign up now! http://join.msn.com/?page=dept/dialup > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 15, 2005 Report Share Posted February 15, 2005 have you tried different exercises for his mouth? I know it takes lots of time Our grandson druls and did choke alot but blowings bubbles heps making games up with any exercises with sounds with his mouth and mussels daily/ We lay on the bed being silly looking at each other saying can you do this and he trys so hard. do it over and over every day and night. (unknown) > > > HI MY NAME IS RUTH I HAVE A NINE YR OLD SON WITH NEURONAL MIGRATE > DISORDER HE IS A GREAT BOY WITH A LOT OF LOVE TO GIVE TO EVERYONE > BUT HE CANT COMMUNICATE TO ANYONE AS MOST OF HIS DISABILITY IS > AFFECTING HIS MOUTH HE HAS TO HAVE DRINKS THICKENED OR IT GOES > STRAIGHT INTO HIS LUNGS AND FOOD MASHED TO A PUREE FORM LIKE A BABY > BECAUSE HE CANT CHEW AND HE WILL CHOKE I DONT KNOW MUCH ABOUT THIS > CONDITION AND TRIED LOOKING FOR AGES KNOW ONE WILL TELL ME MUCH AND > I FEEL IM ON MY OWN WITH HIM HE HAS MILD LEARNING DISABILITIES AND A > VERY BAD CHEST WITH BAD ASTHMA I JUST WONDERING IF ANYONE OUT THERE > KNOWS ANY MORE ABOUT THE CONDITION AS I FEEL A BIT IN THE DARK > THANX RUTH X > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 15, 2005 Report Share Posted February 15, 2005 hi thanx for mail and yes he does lots of excersises with mouth and he does at school to with speech therapist i just keep thinking maybe he may talk one day people here near where we live are so ignorant as to his disabilities and wont play with him Frances McDermott wrote: have you tried different exercises for his mouth? I know it takes lots of time Our grandson druls and did choke alot but blowings bubbles heps making games up with any exercises with sounds with his mouth and mussels daily/ We lay on the bed being silly looking at each other saying can you do this and he trys so hard. do it over and over every day and night. (unknown) > > > HI MY NAME IS RUTH I HAVE A NINE YR OLD SON WITH NEURONAL MIGRATE > DISORDER HE IS A GREAT BOY WITH A LOT OF LOVE TO GIVE TO EVERYONE > BUT HE CANT COMMUNICATE TO ANYONE AS MOST OF HIS DISABILITY IS > AFFECTING HIS MOUTH HE HAS TO HAVE DRINKS THICKENED OR IT GOES > STRAIGHT INTO HIS LUNGS AND FOOD MASHED TO A PUREE FORM LIKE A BABY > BECAUSE HE CANT CHEW AND HE WILL CHOKE I DONT KNOW MUCH ABOUT THIS > CONDITION AND TRIED LOOKING FOR AGES KNOW ONE WILL TELL ME MUCH AND > I FEEL IM ON MY OWN WITH HIM HE HAS MILD LEARNING DISABILITIES AND A > VERY BAD CHEST WITH BAD ASTHMA I JUST WONDERING IF ANYONE OUT THERE > KNOWS ANY MORE ABOUT THE CONDITION AS I FEEL A BIT IN THE DARK > THANX RUTH X > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 19, 2005 Report Share Posted April 19, 2005 Pat, Yes, I saw Dr. Walsh he is the one that diagnosed me a few years back. I have never heard of either of those test. Does your family have a history of CBPS? I am in NH so I will contact Dr. Walsh again. Thank you Pamela pat oneill wrote: Hi Pamela, My son has CBPS, is 21. Having a baby is such a life altering experience, have you had any genetic counseling? Have you had chromosome or FISH tests done? Dr. Dobyns at the University of Chicago and Dr. Walsh at Harvard are the experts on PMG in the United States. We saw Dr. Elaine Zackai at Children's Hospital of Philadelphia. If you are close enough,she was very good. Have you taken part in Dr. Walsh's research study.They're looking for the gene that causes CBPS? You can get more information at www.walshlab.org. Take care. Pat --- pamela wrote: > > I have what is called con. bilateral perisylvian > syndrome and I am interested in having a baby can > anyone tell me what the % are of my child having > what I have? I am the only one in my family that > has this. > > Thank you > Pamela > > > ¸..·´¨¨)) -:¦:- > ¸.·´ .·´¨¨)) > ((¸¸.·´ ¸.·´ -:¦:- Pamela Hickson-:¦:- > -:¦:- ((¸¸.·´ > > > > --------------------------------- > Do you Yahoo!? > Make Yahoo! your home page > > [Non-text portions of this message have been > removed] > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 21, 2005 Report Share Posted April 21, 2005 As explained to my husband and I, if Carly ever wants to have children she has a 50/50 chance of having a child with her condition. He said even if her PMG was cause by a virus or some blip in fetal development she still runs the risk of passing the PMG on. He told us that you can not pass on what you do not have and most likely will pass on what you do. I would have genetic counseling done with the potential father before any final decision. Good luck with having children. They are a blessing and even with Carly's PMG my life is richer and more blessed every day. I have even come to realize that without the PMG our lives might not be as blessed. Christy (mom to Carly 2 year old. PMG, Nissenx3, g-tube, Duanes syndrome type II, COPD- but a smile that lights my life and cheeks that make me feel like I am the luckiest mom in the world) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 21, 2005 Report Share Posted April 21, 2005 Hi Pamela, Do you remember if Dr. Walsh took a blood sample? Chromosome and Fish tests are done with a sample of your blood. was tested for velo-cardio facial syndrome and fragile-x before we found out he had CBPS. is the only one in our family with CBPS. Pat --- pamela wrote: > > Pat, > Yes, I saw Dr. Walsh he is the one that diagnosed me > a few years back. I have never heard of either of > those test. Does your family have a history of > CBPS? I am in NH so I will contact Dr. Walsh again. > > Thank you > Pamela > > pat oneill wrote: > > Hi Pamela, > > My son has CBPS, is 21. > > Having a baby is such a life altering experience, > have > you had any genetic counseling? Have you had > chromosome or FISH tests done? > > Dr. Dobyns at the University of Chicago and > Dr. Walsh at Harvard are the experts on > PMG in the United States. We saw Dr. Elaine Zackai > at > Children's Hospital of Philadelphia. If you are > close > enough,she was very good. > > Have you taken part in Dr. Walsh's research > study.They're looking for the gene that causes CBPS? > You can get more information at www.walshlab.org. > > Take care. > > Pat > > --- pamela > wrote: > > > > I have what is called con. bilateral perisylvian > > syndrome and I am interested in having a baby can > > anyone tell me what the % are of my child having > > what I have? I am the only one in my family that > > has this. > > > > Thank you > > Pamela > > > > > > ¸..·´¨¨)) -:¦:- > > ¸.·´ .·´¨¨)) > > ((¸¸.·´ ¸.·´ -:¦:- Pamela Hickson-:¦:- > > -:¦:- ((¸¸.·´ > > > > > > > > --------------------------------- > > Do you Yahoo!? > > Make Yahoo! your home page > > > > [Non-text portions of this message have been > > removed] > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 4, 2005 Report Share Posted June 4, 2005 Congrats Subodh well done ! Raju Shah 1978 batch (unknown) Haan toh bhai, Sab naaraz ho rahein hain ki log likhte nahin. Sorry for the prolonged absence. So let me re-start with good news. Our dear Subodh Sir (Reader, Comm.Med) has cleared his DNB exam, both theory and practical in one attempt!!! As it is clearing DNB in one go i no mean feat. Upar se after all these years of no formal study.... The best thing is that he, so to say, has not had a " formal teaching " in PSM. But he has a deep interest in this subject, and it shows. Considering that he had done his MD in Paeds, and left that to join PSM .... No one can doubt his interest in this field. All the best sir. This news has made all of us very happy. Aur naaraz nahin hona ki posted this on the site. This was worth telling. I'm sure everyone would agree. Love, Anchita (93) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 28, 2005 Report Share Posted July 28, 2005 Regan, Boy, can I relate to your comments. You are not alone and welcome to the group. ~ (unknown) Hi my name is Regan and I live in northern Vermont. I have a 19 month old baby that was diagnosed with PMG in January. Hes a real sweet boy and I love him with all my heart. Im glad this network is out there because its good to see that im not alone. I feel alone quite alot. Know one seems to understand. They say they do but you dont unless your going through it your self. My sons name is . Hes slowly improving with the help of therapy. He has a big sister named le who is really great with him, but i have to say it so hard to meet both their needs when needs so much. well im going to go for now. Regan Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 28, 2005 Report Share Posted July 28, 2005 thank you ....im just glad others are out there wrote:Regan, Boy, can I relate to your comments. You are not alone and welcome to the group. ~ (unknown) Hi my name is Regan and I live in northern Vermont. I have a 19 month old baby that was diagnosed with PMG in January. Hes a real sweet boy and I love him with all my heart. Im glad this network is out there because its good to see that im not alone. I feel alone quite alot. Know one seems to understand. They say they do but you dont unless your going through it your self. My sons name is . Hes slowly improving with the help of therapy. He has a big sister named le who is really great with him, but i have to say it so hard to meet both their needs when needs so much. well im going to go for now. Regan Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 17, 2006 Report Share Posted June 17, 2006 Prabha Madam nice photos Ameet 1993 > > > > > > > Dear All, > > I've finally uploaded some of the photos taken at Chicago at Ashok and > Renuka's place last month. The long delay is because the photos were in > Skand's laptop, and Skand was creating a software for his department and > wouldn't let go of his laptop. I've finally got my hands on it and I've > managed to upload the pictures before Skand misses his laptop ! > > I realised, rather belatedly, that practically all the pictures of the > children are on video, not on still camera. That is why I have not been able > to upload pictures of Aisha and Aaditya. Perhaps Ashok / Renuka have > pictures that they can upload. > > Kishoreda, I described the photos in the " description " slot, and I find > that the description of the photos does not appear along with the photo in > the photo album. Can that be rectified ? > > Cheers, > Prabha'84 > > > --------------------------------- > How low will we go? Check out Yahoo! Messenger's low PC-to-Phone call > rates. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 18, 2006 Report Share Posted June 18, 2006 Nice photos, Prabha, Ravin '82 (unknown) Dear All, I've finally uploaded some of the photos taken at Chicago at Ashok and Renuka's place last month. The long delay is because the photos were in Skand's laptop, and Skand was creating a software for his department and wouldn't let go of his laptop. I've finally got my hands on it and I've managed to upload the pictures before Skand misses his laptop ! I realised, rather belatedly, that practically all the pictures of the children are on video, not on still camera. That is why I have not been able to upload pictures of Aisha and Aaditya. Perhaps Ashok / Renuka have pictures that they can upload. Kishoreda, I described the photos in the " description " slot, and I find that the description of the photos does not appear along with the photo in the photo album. Can that be rectified ? Cheers, Prabha'84 --------------------------------- How low will we go? Check out Yahoo! Messenger's low PC-to-Phone call rates. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 18, 2006 Report Share Posted June 18, 2006 Thanks, Ameet. It took me a long time to post them, though. Prabha'84 Ameet Chimote wrote: Prabha Madam nice photos Ameet 1993 On 6/17/06, Prabha Desikan wrote: > > > > > > > Dear All, > > I've finally uploaded some of the photos taken at Chicago at Ashok and > Renuka's place last month. The long delay is because the photos were in > Skand's laptop, and Skand was creating a software for his department and > wouldn't let go of his laptop. I've finally got my hands on it and I've > managed to upload the pictures before Skand misses his laptop ! > > I realised, rather belatedly, that practically all the pictures of the > children are on video, not on still camera. That is why I have not been able > to upload pictures of Aisha and Aaditya. Perhaps Ashok / Renuka have > pictures that they can upload. > > Kishoreda, I described the photos in the " description " slot, and I find > that the description of the photos does not appear along with the photo in > the photo album. Can that be rectified ? > > Cheers, > Prabha'84 > > > --------------------------------- > How low will we go? Check out Yahoo! Messenger's low PC-to-Phone call > rates. > > Quote Link to comment Share on other sites More sharing options...
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