Guest guest Report post Posted October 24, 1998 : Welcome back! It is good to hear from you again. I remember you, but I can't remember if you are from the States or UK? Beverly G. Quote Share this post Link to post Share on other sites
Guest guest Report post Posted October 24, 1998 Hi , Welcome back. I'm fairly new to CJDVOICE myself. But I chatted with a from Australia. Is that you? Janet Quote Share this post Link to post Share on other sites
Guest guest Report post Posted October 24, 1998 Hi , Nice to see you back on CJD Voice. I'm sorry to hear that it turned out you have familial CJD. Hopefully with all the research going on there will be treatments and a cure in the not to distant future. Debbie Quote Share this post Link to post Share on other sites
Guest guest Report post Posted October 25, 1998 WELCOME BACK LISA!!!! So nice to have you back, we missed you. a G. ---------- To: CJDVoice (AT) onelist (DOT) com Subject: HI Date: Saturday, October 24, 1998 3:16 PM Hi Everyone... My Name is .... I use to be a member earlier this year but left when I moved interstate... Since my last correspondance we found out that we have familial CJD.... Still learning heaps... Quote Share this post Link to post Share on other sites
Guest guest Report post Posted October 25, 1998 Hi Beverly,,,, I'm in Australia..... Re: HI >From: BevAlso@... > >: >Welcome back! It is good to hear from you again. I remember you, but I can't >remember if you are from the States or UK? >Beverly G. > >------------------------------------------------------------------------ > Quote Share this post Link to post Share on other sites
Guest guest Report post Posted October 25, 1998 Hi Beverly,,,, I'm in Australia..... Re: HI >From: BevAlso@... > >: >Welcome back! It is good to hear from you again. I remember you, but I can't >remember if you are from the States or UK? >Beverly G. > >------------------------------------------------------------------------ > Quote Share this post Link to post Share on other sites
Guest guest Report post Posted October 25, 1998 Hi Debbie... Thanks,,,who knows whats in the future regarding CJD?/ You never know... Re: HI >From: DebbieOney@... > >Hi , > >Nice to see you back on CJD Voice. I'm sorry to hear that it turned out you >have familial CJD. Hopefully with all the research going on there will be >treatments and a cure in the not to distant future. > >Debbie > >------------------------------------------------------------------------ > Quote Share this post Link to post Share on other sites
Guest guest Report post Posted October 25, 1998 Hi Debbie... Thanks,,,who knows whats in the future regarding CJD?/ You never know... Re: HI >From: DebbieOney@... > >Hi , > >Nice to see you back on CJD Voice. I'm sorry to hear that it turned out you >have familial CJD. Hopefully with all the research going on there will be >treatments and a cure in the not to distant future. > >Debbie > >------------------------------------------------------------------------ > Quote Share this post Link to post Share on other sites
Guest guest Report post Posted October 25, 1998 HI a,, Thanks for your encouragement the other day,,,I really appreciated it.. HI >Date: Saturday, October 24, 1998 3:16 PM > >Hi Everyone... >My Name is .... >I use to be a member earlier this year but left when I moved interstate... >Since my last correspondance we found out that we have familial CJD.... >Still learning heaps... > > > > >------------------------------------------------------------------------ > Quote Share this post Link to post Share on other sites
Guest guest Report post Posted October 25, 1998 HI a,, Thanks for your encouragement the other day,,,I really appreciated it.. HI >Date: Saturday, October 24, 1998 3:16 PM > >Hi Everyone... >My Name is .... >I use to be a member earlier this year but left when I moved interstate... >Since my last correspondance we found out that we have familial CJD.... >Still learning heaps... > > > > >------------------------------------------------------------------------ > Quote Share this post Link to post Share on other sites
Guest guest Report post Posted October 25, 1998 Hi Janet,, Yep that was me It took me a while to be able to get back with all you guys,,,(emotionally speaking)... Re: HI >From: BetThePony@... > >Hi , > Welcome back. I'm fairly new to CJDVOICE myself. But I chatted with a > from Australia. Is that you? >Janet > >------------------------------------------------------------------------ > Quote Share this post Link to post Share on other sites
Guest guest Report post Posted October 25, 1998 Hi Janet,, Yep that was me It took me a while to be able to get back with all you guys,,,(emotionally speaking)... Re: HI >From: BetThePony@... > >Hi , > Welcome back. I'm fairly new to CJDVOICE myself. But I chatted with a > from Australia. Is that you? >Janet > >------------------------------------------------------------------------ > Quote Share this post Link to post Share on other sites
Guest guest Report post Posted October 25, 1998 , It sounds like the time out you had was a way to get alright with your own situation. You sound and seem so optimistic now, and that is great! We all will have to work away at increasing awareness, finding all the cases and increasing the pressure for research and then maybe all our dreams will come true. Your Welcome and remember I am here anytime! a G ---------- > > To: cjdvoice (AT) onelist (DOT) com > Subject: Re: HI > Date: Sunday, October 25, 1998 2:14 PM > > > > HI a,, > Thanks for your encouragement the other day,,,I really appreciated it.. > > > HI > >Date: Saturday, October 24, 1998 3:16 PM > > > >Hi Everyone... > >My Name is .... > >I use to be a member earlier this year but left when I moved interstate... > >Since my last correspondance we found out that we have familial CJD.... > >Still learning heaps... > > > > > > > > > >------------------------------------------------------------------------ > > Quote Share this post Link to post Share on other sites
Guest guest Report post Posted April 4, 1999 Please disregard this ridiculous " gas out " day idea. Your are kidding yourself if you think you are going to hurt the oil producers of this world. You will only be hurting poor working class stiffs like myself who are trying to make a living off of .07 per gallon. The sad fact that people don't know is that, you can't make a living from selling gasoline!!!!! If anyone wants to debate this privately, please write me at strai6098@.... Sheryl Quote Share this post Link to post Share on other sites
Guest guest Report post Posted April 4, 1999 Robin, Yes, a large percentage is tax. In VT .38+ is tax and in a lot of states, it's even higher, but we in the US are spoiled. We pay some of the lowest gas taxes in the world. Sheryl Quote Share this post Link to post Share on other sites
Guest guest Report post Posted October 20, 1999 In a message dated 10/19/99 6:37:06 PM Pacific Daylight Time, pmzf@... writes: << was wondering if any kids on the list, who are school age, have a medical ID bracelet. The preschool director suggested it, but i dont' know what to put on it-DON " T FEED ME, for AJ's. >> is 12, he has multiple med. prob. he has a medic alert bracelet that opens and I have a paer inside with his med. info. Cathy Quote Share this post Link to post Share on other sites
Guest guest Report post Posted January 6, 2000 Hi Welcome. I am Robin, and I live in New York. I was diagnosed when I was 17 years old. Glad you could join us. ===== Wishing you a safe and happy holiday __________________________________________________ Quote Share this post Link to post Share on other sites
Guest guest Report post Posted January 13, 2000 Welcome. I am Robin, and I live in New York. I was diagnosed when I was 17 years old. Glad you could join us. Nice to meet you!! Quote Share this post Link to post Share on other sites
Guest guest Report post Posted June 13, 2000 Hi, ... Thanks for the Naprosen suggestion. I tried that for my neck problems. About the only thing that works for me are narcotic type drugs such as Codeine, Talwin, Xanax, etc. I would use these to relieve the pain, but they don't seem to do very much for the cramping. I think that in my case, most of the foot pain is caused by the cramps, which the pot really helps and many times completely takes away. I have found that when the cramps go away, the pain also goes away. I think in addition the pain cycle is broken and sometimes I can get through the entire next day without taking anything for pain. And besides, the narcotic drugs are very habit forming and I think they can actually cause their own pain with long term use because of the way they work on the neuro-receptors. I founded a chronic pain support group with another guy many years ago and built it up to about 50 members. There were several members who used marijuana successfully for relief, but I will say that it did not work for a lot of the members. One nice woman who was 86 years old, used to soak marijuana leaves (supplied by her Mexican gardner) in rubbing alcohol. After about a week of soaking, she would wring out the leaves and throw them away. Then she would use the remaining liquid, soaked in cotton, to rub on her deformed, highly painful joints. She claimed that the pain went away almost immediately. The rest of us preferred to drink the alcohol and smoke the pot to gain he same effect. ) Anyway ... my feet hurt. See you later gang. *hugs* to all ... Quote Share this post Link to post Share on other sites
Guest guest Report post Posted July 2, 2000 Hi Liz, Welcome to the group. Do you have any other family members with CMT? Kat in Seattle type 2 Quote Share this post Link to post Share on other sites
Guest guest Report post Posted July 2, 2000 Hi Liz, Welcome to the group. Do you have any other family members with CMT? Kat in Seattle type 2 Quote Share this post Link to post Share on other sites
Guest guest Report post Posted July 2, 2000 Welcome Liz, My name is Martha. I am glad you could join us. I am 47 and live in Colorado. I have had CMT since I was 12 probably earlier. I was brought up in Sanford, Maine. I love the Fall in New Hampshire. You will get some good information on here. rasbun@... wrote: Hello, my name is Liz. I am 16 and I have CMT ( well obviously) I live in New Hampshire. I was diagnosed when I was 5, I go to Shriners Hospital in Springfield, Mass. I heal the best when I am around horses. I ride too. Well, hello. --------------------------------- --------------------------------- Quote Share this post Link to post Share on other sites
Guest guest Report post Posted July 3, 2000 Hi Liz, Shriner's is great Hospital. Its probable the worlds best burn treatment center, along with the great work they do in other fields. So Hi neighbor, glad to have you aboard. E Quote Share this post Link to post Share on other sites
Guest guest Report post Posted July 6, 2000 Hi Liz and welcome..... My name is Jeanie and I live in the state of Oregon. I've had CMT since age 5 also, I am 39, married, 2 kids (f/16 & m/12). I remember being 16 with my CMT. I was terrified that no guy would ask me out due to my CMT. I was wrong. But, they were slow at approaching me due to thier friends. Glad your on board.... Jeanie --- rasbun@... wrote: > Hello, my name is Liz. I am 16 and I have CMT ( well > obviously) I live in New > Hampshire. I was diagnosed when I was 5, I go to > Shriners Hospital in > Springfield, Mass. I heal the best when I am around > horses. I ride too. > Well, hello. > __________________________________________________ Quote Share this post Link to post Share on other sites
Guest guest Report post Posted July 25, 2000 Hi , nice to meet you. Do you wear AFOs to help your feet and your walking? Do you swim? I'm in Seattle, type 2. Voice activated computer programs are a great help to CMTers with weak hands. Kat >^.^< Quote Share this post Link to post Share on other sites
