Guest guest Posted January 28, 2002 Report Share Posted January 28, 2002 Hi , Welcome to the group. You are going to love it here. I started C1 on December 31st. My first 3 weeks were rough because I was so tired, but now I have lots of energy. I am starting to enjoy my workouts. Hang in there and you will see positive resulst both physically and mentally. Martie -- In bodyforlife@y..., Wenn <claire.wenn@h...> wrote: > Hi, all! > > Started my challenge today. Have read BFL cover to cover twice and set goals > a la " Crossing the Abyss. " > > I'm new to BFL but not new to weight training. You all have great stores of > information, encouragement, and dedication to get the results you want. I > also believe that " doing it by the book " is the best approach. Tweaking the > program from the start is like the difference between affiliation and > commitment, and I'm completely committed to doing whatever it takes. > > I'm 5'5 " tall with 280 pounds on a small frame. Bodyfat is 47% and I've had > a complete physical in the last six months. My doctor is behind me 100% on > this. > > I'm just happy to be here. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 24, 2008 Report Share Posted February 24, 2008 Thanks for the advice, Alwyn. I am forcibly resting. There is so much to do, but a lot of it I can't do anymore. I am going to try and get an appointment with a different Dr in the practice on Monday. Carol -x- RE: Newbie Hi Carlo.well, it may or may not be.but you do have to get to a doc who will not just put things off onto depression. If the antidepressants aren't helping you, don't take 'em! (You may have to wean off, as sudden withdrawal after you've been using it for awhile can be problematic). Self-diagnosing can be a bit of a fool's game. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 24, 2008 Report Share Posted February 24, 2008 Hi Lois, thanks for your reply. I read up on the Seabiscuit author - very interesting. Have you read 's Story' by Derick Longden? His wife had ME and it was the story of their battle for recognition. Very moving book. Unfortunately, we are in the UK (in north east Scotland) and we don't seem to have anything like an FFC around here. Carol -x- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 25, 2008 Report Share Posted February 25, 2008 Hi Carol, so glad to hear that you are resting…even if you can’t help it <sigh>. Good luck getting a doc to do the proper tests. If you check out the “Canadian Consensus Document for the Diagnosis and Treatment of ME/CFS” you will get an idea of the kinds of tests that should be done…you can just Google this…or I can send you a copy offlist…I have it on my computer. You can see that there is a lot of differential diagnostics…screening for other disease…did your doc even check simple things like your thyroid, iron etc.? There are so many things that could be responsible. Good luck dear. Aylwin xox Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 24, 2009 Report Share Posted March 24, 2009 Go for it To: polymicrogyria From: lormcquinn@... Date: Mon, 23 Mar 2009 18:15:53 +0000 Subject: Newbie Hi , Welcome to the group! My name is Lorraine. I have a beautiful little boy who is two and a half. He was diagnosed with Bilateral Perisylvian PMG when he was seven months old. He is an extremely clever little boy, but is non verbal. He has severe difficulty with his gross and fine motor skills. He was born with Talipes (Club Foot) and has had two operations so far to try and get a better position on his feet. I hope you dont mind i asking, but after having a little boy with PMG you decided to go on and have another child?? Were you given a reocurrence risk before deciding to have a second child. Did you have genetic tests done, if so do you know which ones. I am trying to decide whether or not to go on and try for a second baby, but cannot seem to come close to a decision. We have been given a 10% reocurrence risk, as it was Genetic in our case. If you dont wish to answer this post I completely understand. Kind Regards, Lorraine Tierney _________________________________________________________________ Windows Live™ SkyDrive: Get 25 GB of free online storage. http://windowslive.com/online/skydrive?ocid=TXT_TAGLM_WL_skydrive_032009 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 24, 2009 Report Share Posted March 24, 2009 > > Hi , > > Welcome to the group! My name is Lorraine. I have a beautiful little boy who is two and a half. He was diagnosed with Bilateral Perisylvian PMG when he was seven months old. He is an extremely clever little boy, but is non verbal. He has severe difficulty with his gross and fine motor skills. He was born with Talipes (Club Foot) and has had two operations so far to try and get a better position on his feet. > > I hope you dont mind i asking, but after having a little boy with PMG you decided to go on and have another child?? Were you given a reocurrence risk before deciding to have a second child. Did you have genetic tests done, if so do you know which ones. > > I am trying to decide whether or not to go on and try for a second baby, but cannot seem to come close to a decision. We have been given a 10% reocurrence risk, as it was Genetic in our case. > > If you dont wish to answer this post I completely understand. > > Kind Regards, > > Lorraine Tierney Well, Leah was an accident. Tanner still did not have a diagnosis of CBPS at the time. I was already pregnant by the time we found out. They thought it to be very unlikely that Leah would have it too, but....I guess they were wrong. I have had a lot of Radiologists look at my son's MRI's and none of them were able to catch CBPS. I found a wonderful neurologist Dr. a Bebin who worked with Dr. Kuzniecky at UAB in Birmingham, AL. I'm sure you have probably heard of him. She looked at his MRI and knew right away. I truly believe this syndrome is not that rare. I think these radiologists just don't know what they are looking at. I have just recently had genetic tests done for different studies, but they don't fill us in on their findings. I just want to help any way I can. Dr. Kuzniecky Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 24, 2009 Report Share Posted March 24, 2009 Hi , As Lorraine asked about having your second child I have to say as I sit here with an almost 3 year old with PMG and 18 weeks pregnant, reading your email has me scared to death of another child with PMG. I would be more interested in learning of your thoughts. I know many others on this website have said they went on to have other healthy children, but I'm still concerned. Welcome to to the group! Subject: Newbie To: polymicrogyria Date: Monday, March 23, 2009, 2:15 PM Hi , Welcome to the group! My name is Lorraine. I have a beautiful little boy who is two and a half. He was diagnosed with Bilateral Perisylvian PMG when he was seven months old. He is an extremely clever little boy, but is non verbal. He has severe difficulty with his gross and fine motor skills. He was born with Talipes (Club Foot) and has had two operations so far to try and get a better position on his feet. I hope you dont mind i asking, but after having a little boy with PMG you decided to go on and have another child?? Were you given a reocurrence risk before deciding to have a second child. Did you have genetic tests done, if so do you know which ones. I am trying to decide whether or not to go on and try for a second baby, but cannot seem to come close to a decision. We have been given a 10% reocurrence risk, as it was Genetic in our case. If you dont wish to answer this post I completely understand. Kind Regards, Lorraine Tierney Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 24, 2009 Report Share Posted March 24, 2009 > > > > Subject: Newbie > To: polymicrogyria > Date: Monday, March 23, 2009, 2:15 PM > > > > > > > Hi , > > Welcome to the group! My name is Lorraine. I have a beautiful little boy who is two and a half. He was diagnosed with Bilateral Perisylvian PMG when he was seven months old. He is an extremely clever little boy, but is non verbal. He has severe difficulty with his gross and fine motor skills. He was born with Talipes (Club Foot) and has had two operations so far to try and get a better position on his feet. > > I hope you dont mind i asking, but after having a little boy with PMG you decided to go on and have another child?? Were you given a reocurrence risk before deciding to have a second child. Did you have genetic tests done, if so do you know which ones. > > I am trying to decide whether or not to go on and try for a second baby, but cannot seem to come close to a decision. We have been given a 10% reocurrence risk, as it was Genetic in our case. > > If you dont wish to answer this post I completely understand. > > Kind Regards, > > Lorraine Tierney > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 24, 2009 Report Share Posted March 24, 2009 First of all, Welcome to the group ... my name is also ..and I am the Mom of Hasselberger...an 11 year boy with bilateral diffuse PMG..with 80%+ of his brain affected. We have a daughter, she is 13...and perfectly normal. We decided to have our third child...who is now eight..because like Sara...we love the children to death. And having number three was a tremendous blessing to and all of us. ...please don't be fearful...you have a wonderful life ahead of you, and the liklihood of recurrence is so slim... I wanted a number four...but I am now 42...and with each year that passes...we are starting to rule it out now... is a darling... he is sweet, gentle, and the love of my life. I've learned over the years that fear is nothing but a disability that we have the choice to overcome. Fear accomplishes nothing...most fear anyways.. Best of luck with your growing family... In my case they told me that I had a 25% genetic recurrence risk when I was pregnant with .. But they had misdiagnosed as Pachygyria... it wasnt until we went to see Dr. Dobyns that we learned I had had the CMV virus...and that it was the cause of Polymicrogyria... and that recurrence was probably not a problem in the future. With ...I didnt care...I knew that a brother for and was going to be a gift...no matter what he was born with or without. Nothing in life is a guarantee... Be at peace and cherish what you have in your life now...every moment is a gift box full of treasures. Much Love... Hasselberger, Sandy Hook CT..Mom to ..age 11 > > > > > > From: lorrainetierney <lormcquinn@> > > Subject: Newbie > > To: polymicrogyria > > Date: Monday, March 23, 2009, 2:15 PM > > > > > > > > > > > > > > Hi , > > > > Welcome to the group! My name is Lorraine. I have a beautiful little boy who is two and a half. He was diagnosed with Bilateral Perisylvian PMG when he was seven months old. He is an extremely clever little boy, but is non verbal. He has severe difficulty with his gross and fine motor skills. He was born with Talipes (Club Foot) and has had two operations so far to try and get a better position on his feet. > > > > I hope you dont mind i asking, but after having a little boy with PMG you decided to go on and have another child?? Were you given a reocurrence risk before deciding to have a second child. Did you have genetic tests done, if so do you know which ones. > > > > I am trying to decide whether or not to go on and try for a second baby, but cannot seem to come close to a decision. We have been given a 10% reocurrence risk, as it was Genetic in our case. > > > > If you dont wish to answer this post I completely understand. > > > > Kind Regards, > > > > Lorraine Tierney > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 25, 2009 Report Share Posted March 25, 2009 , I love what and have said in their posts. First of all, I agree with the new in that PMG isn't as rare as we think....just misdiagnosed or underdiagnosed. Think of how many children out there have symptoms that are similar to the chilren with PMG who are " less effected " by their PMG, yet have never had an MRI....(those who may just have speech delays, some fine motor difficulty, maybe some sensory issues, a learning disability....etc.) Who is to say that those children's " issues " aren't a result of PMG? As for what H. said about fear being the disability and nothing in life being guaranteed is right on! We have 3 children. Our oldest biological son does not have PMG. We adopted our middle child when she was 6 months old and were told by so many people, professionals included, " Don't go through with the adoption, it looks (on film) like she may have some disabilities including cerebral palsy. This is a high risk adoption " ....we figured there weren't any guarantees in life so we went through with bringing our daughter home....she is 100% healthy. Then, our final child was born to us biologically. He is our child who has PMG. What a lesson for all the people who said, " Don't adopt! You don't know what kind of health issues and potential disabilities you will be bringing into your family! " Guess what!? We were never guaranteed anything with any of our children biological or adopted. Even if a person has a healthy child at birth, who is to say they won't acquire a disability at some point via illness, accident, etc. I say all of this to help you somehow put into perspective the blessing you are yet again about to receive. Pregnancy is a miracle, child birth is a miracle and as so eloquently said, " Be at peace and cherish what you have in your life now...every moment is a gift box full of treasures. " Enjoy the rest of your pregnancy, disability (fear) free ;-) Big hugs to you! Krista mom to and 2 other great kids! > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 25, 2009 Report Share Posted March 25, 2009 Krista... you make me cry..well said. Thank you for the kind words. I kind of wish I was having a baby right now..because I miss those wonderful days... not that I don't love my children..but boy... is 13 hard..and we are only just beginning. is the easy one..its my normal children who test my sanity...lol.. but I love em all..they are everything to me. Since we are probably finished with the baby thing...we are thinking of getting a trained labradoodle puppy for ...how sweet is that. Kids will love it...they don't know yet. Peace!!! H. (Mom to ..bilateral diffuse PMG 80% affected...age 11) Subject: Re: Newbie To: polymicrogyria Date: Wednesday, March 25, 2009, 12:23 PM , I love what and have said in their posts. First of all, I agree with the new in that PMG isn't as rare as we think....just misdiagnosed or underdiagnosed. Think of how many children out there have symptoms that are similar to the chilren with PMG who are " less effected " by their PMG, yet have never had an MRI....(those who may just have speech delays, some fine motor difficulty, maybe some sensory issues, a learning disability.. ..etc.) Who is to say that those children's " issues " aren't a result of PMG? As for what H. said about fear being the disability and nothing in life being guaranteed is right on! We have 3 children. Our oldest biological son does not have PMG. We adopted our middle child when she was 6 months old and were told by so many people, professionals included, " Don't go through with the adoption, it looks (on film) like she may have some disabilities including cerebral palsy. This is a high risk adoption " ... .we figured there weren't any guarantees in life so we went through with bringing our daughter home....she is 100% healthy. Then, our final child was born to us biologically. He is our child who has PMG. What a lesson for all the people who said, " Don't adopt! You don't know what kind of health issues and potential disabilities you will be bringing into your family! " Guess what!? We were never guaranteed anything with any of our children biological or adopted. Even if a person has a healthy child at birth, who is to say they won't acquire a disability at some point via illness, accident, etc. I say all of this to help you somehow put into perspective the blessing you are yet again about to receive. Pregnancy is a miracle, child birth is a miracle and as so eloquently said, " Be at peace and cherish what you have in your life now...every moment is a gift box full of treasures. " Enjoy the rest of your pregnancy, disability (fear) free ;-) Big hugs to you! Krista mom to and 2 other great kids! > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 29, 2009 Report Share Posted March 29, 2009 > > Hi ! > > Glad you joined the group. You are right, this is a great place to network with people who understand what you are going through. > > Several list members have gone through the process of VNS. It helps to know you are not alone! > > Were you able to check out the link I sent you about the conference? I am sure Dr. Dobyns and the rest of the researchers/geneticists would be very interested in seeing you all given that you have two children with BPP. If you haven't already spoken to him, he may be able to give you additional insight to your son's treatment of the LG. > > Anyways, it is so good to see you here.....welcome! I did check out the link, but I won't to be able to make such a big trip like that. I just don't know what else Dr. Dobyns could tell me that would be of use to my family. I think that I will go ahead and mail him copies of my children's MRI's and medical records for him to research if he is interested. The more research they do, the better off we are in the long run! > > Best, > Krista > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 29, 2009 Report Share Posted March 29, 2009 > > > > > > > > > From: lorrainetierney <lormcquinn@> > > > Subject: Newbie > > > To: polymicrogyria > > > Date: Monday, March 23, 2009, 2:15 PM > > > > > > > > > > > > > > > > > > > > > Hi , > > > > > > Welcome to the group! My name is Lorraine. I have a beautiful little boy who is two and a half. He was diagnosed with Bilateral Perisylvian PMG when he was seven months old. He is an extremely clever little boy, but is non verbal. He has severe difficulty with his gross and fine motor skills. He was born with Talipes (Club Foot) and has had two operations so far to try and get a better position on his feet. > > > > > > I hope you dont mind i asking, but after having a little boy with PMG you decided to go on and have another child?? Were you given a reocurrence risk before deciding to have a second child. Did you have genetic tests done, if so do you know which ones. > > > > > > I am trying to decide whether or not to go on and try for a second baby, but cannot seem to come close to a decision. We have been given a 10% reocurrence risk, as it was Genetic in our case. > > > > > > If you dont wish to answer this post I completely understand. > > > > > > Kind Regards, > > > > > > Lorraine Tierney > > > > > > > > > > > > > > > > > > > > > > > > , I am so sorry to have worried you. The chances of having a second child w/PMG is very low. Children are such a blessing. I love both of my children with all of my heart. You just hang in there and don't worry, I know you will love that child disablity or not. Just live in the moment and cherish all the joy each day gives you. Although my days may be harder than most peoples, I believe I have a better understanding of what really matters in life. I have my children to thank for that. Good Luck. > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
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