Guest guest Posted June 27, 2003 Report Share Posted June 27, 2003 Oh you know we will be here for you. Don't you ever feel alone. You are going thru a difficult time right now and it is twice as hard on you with the loss of your husband. I have been so busy with my Mom that I haven't really been keeping up. I will keep you in m prayers and hope that you will not need treatment.... Sending healing hugs to you . ;o You are not alone girl. Don't you ever forget that. OK? Angel Hugs, Diane May Rainbow Dreams Color Your World With Love, Hope, Peace & Unity Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 27, 2003 Report Share Posted June 27, 2003 Hey Jan!!!!!!!!!! What's up with you tonight girl??????? Do you still have peace and quiet? Have a good week-end!!! ;o Angel Hugs, Diane May Rainbow Dreams Color Your World With Love, Hope, Peace & Unity Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 27, 2003 Report Share Posted June 27, 2003 here,here Diane.i do agree with you. and we are here. i am anyway. and i'd like to say thanks to those who said that i can stay with this group. Graham. diane214@... wrote: Oh you know we will be here for you. Don't you ever feel alone.You are going thru a difficult time right now and it is twice as hard onyou with the loss of your husband. I have been so busy with my Mom thatI haven't really been keeping up. I will keep you in m prayers and hopethat you will not need treatment.... Sending healing hugs to you .;o You are not alone girl. Don't you ever forget that. OK? Angel Hugs, DianeMay Rainbow Dreams Color Your World With Love, Hope, Peace & Unity Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 28, 2003 Report Share Posted June 28, 2003 Graham, How is your health coming along now that they have discovered the problem? Let me know. OK? Angel Hugs, Diane May Rainbow Dreams Color Your World With Love, Hope, Peace & Unity Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 2, 2003 Report Share Posted July 2, 2003 No, I'm retired, so that will make treatment much easier to handle. I've had this disease 14 yrs but of course didn't know about it for most of that time. I just bookmarked Be in Charge, so will look into that, thanks. And I'm keeping my hair red if I have to paint the few strands I have left during treatment with watercolor! lol Thank you all for the good wishes. (I hope this isn't doubleposting, my email address changed, and I don't seem to be successful getting the change thru .) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 18, 2006 Report Share Posted October 18, 2006 Hi all you have probbaly seen my posts on my 14 year old son to the fact he isn't diagnosed with CMT or anything else for that matter things have been a mystery for 9 long years now but what ever it is its affecting on a day to basis as to his limits as to what he can do. The most recent being in reguards to a bike riding camp which they ride for miles and return home in the same fashion the next day.They have been training each Tuesday and everytime has had the next day off school due to he had the can't walk thing happening. So yesterday he decided not to do the bike training which was ok by the teacher but he was given the forms for the camp to bring home and told if he did not ride his bike to this camp and home again he would fail the subject.(we had hoped he could travel by car considering his condition) The only other choice he was given was to not attend the camp and do an 8 page essay. Needless to say I am not impressed and I'm awaiting a return call from the year 9 coordinator I feel sick to the stomach over it all not only is having a hard time socially at school and stepped back from his sports he has loved so much in past years he is being punished for something he has no control over for a subject that was not a choice subject. Anyways tomorrow is the " big day " off to the paedatric nuerologist to find out what the results were of the genes testing.I am so nervous about going as for one yes it maybe CMT and obviously you don't want your child to have anything wrong them but on the other hand maybe if he does have it it gives us focus and an ending to what on earth is going on with him and he can start living his life appropriately with medical guidance instead of hearing from the doctors well if you exert yourself expect the pain and rather bluntly . Maybe with the right physio etc we can do this together and I can get the last few years of my little boy instead of him being the unwell one who has seemed to grow up way to fast in this whole situation. Facing reality for a child for so long but for something unknown has been a hard track for him. But on the other hand by tomorrow night we may know no more than what we do today. So I probaly have raved on too much but if anyone has anything they can help me with as to what I should be asking tomorrow it will be appreciated from the bottom of my heart. Thank you Lesley Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 18, 2006 Report Share Posted October 18, 2006 Lesley, hi, I had just completed 4 years of college in 3, and was ready to graduate early. I had already been accepted to grad school the following semester - but the school's registrar would not give me my B.A. diploma until I had fulfilled the P.E. requirement. I thought this was nuts and tried to fight it. Ever since Jr. High I had a medical excuse to exempt me from sports at school and allow me to pace myself at camp. All through college I had biked everywhere, in addition to swimming 3 days a week, plus horseebackriding (all on my own) I came up with a plan to make this my P.E. 1 unit credit so I could get the diploma. I had a meeting with the Dean, the Coach and the Registrar. I had copies of a doctor's letter saying I had been under his care for CMT and he could attest that I had indeed received exercise. I asked if I could write a paper on this. The Coach said " write a paper on the merits of Bike Riding " - I thought I had died and gone to heaven. I went back to my dorm, cranked out a 6 page paper, and had it on Coach's desk by 5 pm that day. (this was before PC's, but even then I was a 'writer') Long story short, Coach liked my paper - I got an A, lol, the only A I have ever received in a P.E. course. The registrar granted me my diploma, I graduated, and headed to grad school for further victory. may be bike riding too much at a time - CMT muscles can become overworked, creating more weakness. Perhaps your doctor can write to the school/or camp, suggest be allowed to 'self-pace' because of his muscular needs, and see how that goes. Pacing myself has taken years of trial and error, but it does work. Discipline is needed, so is the ability to listen to his body. When the body starts to hurt, stop, or stop before the hurt. A good physio may be able to set up with a specially designed exercise program that is best for him, including activities he enjoys. A physio can also explain to him how his muscles work and how differently they work. If the gene test shows a CMT 1A diagnosis, ask if you can get into the Vitamin C Trials and get the doc to connect you with Dr. Margaret Reilly. ~ Gretchen Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 6, 2009 Report Share Posted November 6, 2009 > > So, my health had gotten much better over the past year. I have been eating healthy low carb and doing much better than during and after my pregnancy. Now as I am working through the yeast elimination diet with my son...all of the aches, pains, vision problems, fatigue, ear ringing, pounding heart, neck and back problems are all coming back...ahhh! I thought this was over and I had healed past it....ohhh you retracing! I feel the migranes coming back...and the computer time is a total drain on my eyes....but I have to edit weddings...I am a photographer. +++ Hi Anne G. That's wonderful you are feeling better! Good job! Other programs/diets do not help your body retrace like this program does. > > Is it possible to feel so much better for months and then retrace years back onto such worse times? I read but just can't believe it could get this much worse. It doesn't feel like die-off, or any that I have had anyway. Although I have that white splotchy film on my tongue again...it was gone for a while. +++Yes, it is possible to feel better and then to retrace something from the past. > What about my son, he is just 3.5, so would he really only have 4 months of retracing to go through if we are really good? +++That's true IF he is completely on the program during that time. > > I don't know if I can manage my families regimen, work, AND feel like this again. Once I finish up the clients I am working on now I will definitely have to take a break. +++This too shall pass. It won't take as much retracing time as it took originally. > Breath In Breath Out +++Yes, it is important to do deep breathing exercises. The best to you, Bee Quote Link to comment Share on other sites More sharing options...
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