Guest guest Posted November 12, 1999 Report Share Posted November 12, 1999 Hey , I'm sorry, I don't understand what part was incorrect. I've read about people getting together at Alda Con, Texas, and Vegas. As far as the info about the Friesen's, they don't have a computer and do not mind at all what I have relayed on their behalf. They are proud to be the first Canadians with the ABI. I discuss with them what I put on here. I thought someone in Canada or elsewhere may be interested. You haven't given me your address. I am simply trying to encourage those few of us in Canada that are somewhat close together to get together. Not everyone has access to the states. Don't worry. I only told there was a male in Alberta with NF2. They already knew of your existance. We live in a vast country, with a small realitive population. I've been looking for people and doctors for 10 years. The figure we have been told would seem more accurate to me if they added a zero to the end. I wouldn't wish this on anyone but would welcome meeting more with NF2. I am the only one in Sask. Our small population makes it easy to connect with the few specialists there are here. I assumed you didn't want to give me your address when I mentioned that I didn't have it and you did not give it. That's your personal business and I'm OK with that. You haven't till the last few days responded to any of my mail questions. I am simply giving you the opportunity to meet us. Eventually you will likely need more than the Crew if you continue to live in Canada. Locally you will need answers and help. Doctors and the government play a big role in our health, often both at the same time. Any accomplishments out of our Country in relation to health have not been without a looonnnnng .... hard fight. There has been discussion about others that aren't present on the crew as well. No doubt this is personal but I don't have your address and wanted to contact you before I forgot anything. ( having had 4 surgeries and radiation on a Glioma in the brainstem has really taken a toll on my short term memory). Sheryn Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 13, 1999 Report Share Posted November 13, 1999 Hi Sheryn, the reason I suggested we take this off the crew was because there were sort of some mundane details about things that we were trying to put together amongst ourselves. I was not trying to be hostile, just following, what I thought were, crew guidelines. I don't know how long you've been using email for, but if you recieved a message from me, which you did, you have my email address ... all you have to do is hit the 'reply' button. I used to always use a signiture file, maybe I should start doing so again. I'm not trying to be private, or anything like that. I don't mind you sharing my NF2 story with anyone, even with my name. It's on my website for the whole world to see. And of course it is important to share the info about the Friesen's with the crew ... I find it a little difficult to believe that me and the Friesens are the only ones in Alberta with NF2. This is a 1 in 50 000 thing ... there are nearly 3 million people in Alberta, that comes to about 50 or 60. Peace sheryn .... see you soon -- Chartrand jchartra@... http://www.geocities.com/rainforest/vines/6079 " Anyone who tells you they can create a forest is either stupid, or lying. " - Suzuki Your email Hey , I'm sorry, I don't understand what part was incorrect. I've read about people getting together at Alda Con, Texas, and Vegas. As far as the info about the Friesen's, they don't have a computer and do not mind at all what I have relayed on their behalf. They are proud to be the first Canadians with the ABI. I discuss with them what I put on here. I thought someone in Canada or elsewhere may be interested. You haven't given me your address. I am simply trying to encourage those few of us in Canada that are somewhat close together to get together. Not everyone has access to the states. Don't worry. I only told there was a male in Alberta with NF2. They already knew of your existance. We live in a vast country, with a small realitive population. I've been looking for people and doctors for 10 years. The figure we have been told would seem more accurate to me if they added a zero to the end. I wouldn't wish this on anyone but would welcome meeting more with NF2. I am the only one in Sask. Our small population makes it easy to connect with the few specialists there are here. I assumed you didn't want to give me your address when I mentioned that I didn't have it and you did not give it. That's your personal business and I'm OK with that. You haven't till the last few days responded to any of my mail questions. I am simply giving you the opportunity to meet us. Eventually you will likely need more than the Crew if you continue to live in Canada. Locally you will need answers and help. Doctors and the government play a big role in our health, often both at the same time. Any accomplishments out of our Country in relation to health have not been without a looonnnnng .... hard fight. There has been discussion about others that aren't present on the crew as well. No doubt this is personal but I don't have your address and wanted to contact you before I forgot anything. ( having had 4 surgeries and radiation on a Glioma in the brainstem has really taken a toll on my short term memory). Sheryn Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 13, 1999 Report Share Posted November 13, 1999 Hey your guys, I live in Toronto. Although I have met people with NF2 in the city, I have note seen as many as you may think (I've had NF2 since '86). I can't make it out that way but would still be interested in seeing what fellow Canadians are up to. So please keep me in the loop - no matter how dull and boring you may think the stuff is. Also, you may want to contact the ANAC for names of NF2 people in the area. The ANAC has an 800 number that is TTY friendly (ie, there is a hearing person there but they know how to use a TTY). The ANAC head office is in Edmonton (if you were not aware) and perhaps they can help in some way. Good Luck with CanadaCon I. >Hi Sheryn, > >the reason I suggested we take this off the crew was because there were sort of some mundane details about things that we were trying to put together amongst ourselves. I was not trying to be hostile, just following, what I thought were, crew guidelines. I don't know how long you've been using email for, but if you recieved a message from me, which you did, you have my email address ... all you have to do is hit the 'reply' button. I used to always use a signiture file, maybe I should start doing so again. > >I'm not trying to be private, or anything like that. I don't mind you sharing my NF2 story with anyone, even with my name. It's on my website for the whole world to see. And of course it is important to share the info about the Friesen's with the crew ... > >I find it a little difficult to believe that me and the Friesens are the only ones in Alberta with NF2. This is a 1 in 50 000 thing ... there are nearly 3 million people in Alberta, that comes to about 50 or 60. > >Peace sheryn .... see you soon > > > > > >-- > Chartrand >jchartra@... >http://www.geocities.com/rainforest/vines/6079 > > " Anyone who tells you they can create a forest >is either stupid, or lying. " > >- Suzuki > </B> Your email</DIV> > <DIV><BR></DIV> > <DIV>Hey ,</DIV> > <DIV> & nbsp;</DIV> > <DIV> & nbsp;I'm sorry, I don't understand what part was incorrect. I've read > about people getting together at Alda Con, Texas, and Vegas. As far as the > info about the Friesen's, they don't have a computer and do not mind at all > what I have relayed on their behalf. They are proud to be the > first & nbsp;Canadians with the ABI. & nbsp;I discuss with them what I put on > here. I thought someone in Canada or elsewhere may be interested. You haven't > given me your address. I am simply trying to encourage those few of us in > Canada that are somewhat close together to get together. Not everyone has > access to the states. & nbsp;Don't worry. & nbsp; & nbsp;I & nbsp;only told & nbsp;there > was a male & nbsp;in Alberta with NF2. They & nbsp;already knew of your existance. > We live in a vast country, with a small realitive population. & nbsp;I've been > looking for people and doctors for 10 years. The figure we have been told > would seem more accurate to me if they added a zero to the end. I wouldn't > wish this on anyone but would welcome meeting more with NF2. & nbsp;I am the > only one in Sask. & nbsp;Our small population makes it easy to connect with the > few specialists there are here. I assumed you didn't want to give me your > address when I mentioned that I didn't have it and you did not give it. That's > your personal business and I'm OK with that. You haven't till the last few > days responded to any of my mail questions. I am simply giving you the > opportunity to meet us. Eventually you will likely need more than the Crew if > you continue to live in Canada. Locally you will need answers and help. > Doctors and the government play a big role in our health, often & nbsp;both at > the same time. Any accomplishments out of our & nbsp;Country in relation to > health have not been without a looonnnnng .... hard fight. & nbsp;</DIV> > <DIV>There has been discussion & nbsp;about others that aren't present on the > crew as well. No doubt this is personal but I don't have your address and > wanted to contact you before I forgot anything. ( having had 4 surgeries and > radiation on a Glioma in the brainstem has really taken a toll on my short > term memory).</DIV> > <DIV> & nbsp;</DIV> > <DIV>Sheryn</DIV></BLOCKQUOTE></BODY></HTML> > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 15, 1999 Report Share Posted November 15, 1999 Hey Sharon, I got your email. I'm not sure if this is what you intended I know that if I want to send or reply to one person, I make note of their email address and then respond to the message. But I delete the Crew address and put the single person's address instead. I think that works. I don't know of any problem so far. June Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 15, 1999 Report Share Posted November 15, 1999 Sorry for the misspelling Sheryn Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 15, 1999 Report Share Posted November 15, 1999 Hey , Here it is. I hope it worked direct to you at your address. Please let me know if I got it right. This would be alot better, Thanks!!!! I received mail from Thea. I sure hope we all get together. Thanks Again. I have alot to learn. Sheryn ---- Original Message ----- From: Chartrand To: NF2_Crewonelist Sent: November 13, 1999 2:17 AM Subject: Re: Your email Hi Sheryn, the reason I suggested we take this off the crew was because there were sort of some mundane details about things that we were trying to put together amongst ourselves. I was not trying to be hostile, just following, what I thought were, crew guidelines. I don't know how long you've been using email for, but if you recieved a message from me, which you did, you have my email address ... all you have to do is hit the 'reply' button. I used to always use a signiture file, maybe I should start doing so again. I'm not trying to be private, or anything like that. I don't mind you sharing my NF2 story with anyone, even with my name. It's on my website for the whole world to see. And of course it is important to share the info about the Friesen's with the crew ... I find it a little difficult to believe that me and the Friesens are the only ones in Alberta with NF2. This is a 1 in 50 000 thing ... there are nearly 3 million people in Alberta, that comes to about 50 or 60. Peace sheryn .... see you soon -- Chartrand jchartra@... http://www.geocities.com/rainforest/vines/6079 " Anyone who tells you they can create a forest is either stupid, or lying. " - Suzuki Your email Hey , I'm sorry, I don't understand what part was incorrect. I've read about people getting together at Alda Con, Texas, and Vegas. As far as the info about the Friesen's, they don't have a computer and do not mind at all what I have relayed on their behalf. They are proud to be the first Canadians with the ABI. I discuss with them what I put on here. I thought someone in Canada or elsewhere may be interested. You haven't given me your address. I am simply trying to encourage those few of us in Canada that are somewhat close together to get together. Not everyone has access to the states. Don't worry. I only told there was a male in Alberta with NF2. They already knew of your existance. We live in a vast country, with a small realitive population. I've been looking for people and doctors for 10 years. The figure we have been told would seem more accurate to me if they added a zero to the end. I wouldn't wish this on anyone but would welcome meeting more with NF2. I am the only one in Sask. Our small population makes it easy to connect with the few specialists there are here. I assumed you didn't want to give me your address when I mentioned that I didn't have it and you did not give it. That's your personal business and I'm OK with that. You haven't till the last few days responded to any of my mail questions. I am simply giving you the opportunity to meet us. Eventually you will likely need more than the Crew if you continue to live in Canada. Locally you will need answers and help. Doctors and the government play a big role in our health, often both at the same time. Any accomplishments out of our Country in relation to health have not been without a looonnnnng .... hard fight. There has been discussion about others that aren't present on the crew as well. No doubt this is personal but I don't have your address and wanted to contact you before I forgot anything. ( having had 4 surgeries and radiation on a Glioma in the brainstem has really taken a toll on my short term memory). Sheryn Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 1, 1999 Report Share Posted December 1, 1999 Re: Your email Hi , How does Sunday evening, the 12th sound??? Nettie says her husband Philip would like to spend as few nights as possible. I'm waiting to hear from Thea as to whether or not this fits with her. Sheryn Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 1, 1999 Report Share Posted December 1, 1999 Tell Nettie that Sister Agnes has left HEI and gone to Alaska! She will get a chuckle out of that. Marie Re: Your email Re: Your email Hi , How does Sunday evening, the 12th sound??? Nettie says her husband Philip would like to spend as few nights as possible. I'm waiting to hear from Thea as to whether or not this fits with her. Sheryn Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 1, 1999 Report Share Posted December 1, 1999 Hello Marie, I'll do that. Isn't Sister Agnus a sweetheart? She came to see me in the hospital everyday. I always think of the song lines " She's like sunshine, on a cloudy day. When its cold outside, she's a month of may " . She also reminds me of the everready bunny, always on the go somewhere, helping someone. I'm glad she's gotten away, but Alaska, in the late fall..... It will be beautiful though. I'll tell Nettie. Marie is it possible you could give me Gray's address, email or phone number? Always a pleasure to hear from you Marie. Any snow out there yet? We have been so lucky weatherwise. Is she gone forever? I'll sure miss her. Sheryn, from my little house on the prairie Re: Your email Hi , How does Sunday evening, the 12th sound??? Nettie says her husband Philip would like to spend as few nights as possible. I'm waiting to hear from Thea as to whether or not this fits with her. Sheryn Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 2, 1999 Report Share Posted December 2, 1999 Seton Hall won't be the same without Sister Agnes; 's e mail address is: legray@... Her phone no is has started her own business, called " A Touch of Gray " Marie Re: Re: Your email Hello Marie, I'll do that. Isn't Sister Agnus a sweetheart? She came to see me in the hospital everyday. I always think of the song lines " She's like sunshine, on a cloudy day. When its cold outside, she's a month of may " . She also reminds me of the everready bunny, always on the go somewhere, helping someone. I'm glad she's gotten away, but Alaska, in the late fall..... It will be beautiful though. I'll tell Nettie. Marie is it possible you could give me Gray's address, email or phone number? Always a pleasure to hear from you Marie. Any snow out there yet? We have been so lucky weatherwise. Is she gone forever? I'll sure miss her. Sheryn, from my little house on the prairie Re: Your email Hi , How does Sunday evening, the 12th sound??? Nettie says her husband Philip would like to spend as few nights as possible. I'm waiting to hear from Thea as to whether or not this fits with her. Sheryn Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 3, 1999 Report Share Posted December 3, 1999 Hi , I'm glad to hear you live close. We arrive Friday evening, weather permitting. Friesens will be in by six on Sunday and plan to come over that evening, we thought 7ish. I tried to phone Thea, spoke with her mother for awhile and she had gone to emergency, had been there a few hours and hadn't returned yet. Have you heard anything? We plan to meet around 7 on sunday. I thought I'd try to reach you after we got in. Can you talk without the TTY or should we bring ours? We'll bring lots of paper as Susie and Philip don't hear. We and Nettie will bring some munchies, WARNING I make Lousy coffee. Neither of us drink it. Friesen's are bringing their 3 year old daughter and after 7 hours of travel, I think will want to stay put pretty much. We'll probably spend the evening getting aquainted, etc. I hope Thea is OK! Thea are you there? Do I reach her at the AOL account now or is she back here?? My husband and I are looking forward to meeting you, . This is a casual get together, any ideas, bring them on out. I'd like to see this become a regular get together, maybe something like Texas. We'll have to kick some ideas around. Its only a week away. , feel free to bring someone along. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 4, 1999 Report Share Posted December 4, 1999 Sheryn, Thea tried to email you today, but she said her email bounced for some reason. I'm not in the habit of posting private email, so I'll send it to you under seperate cover. I can have a face to face conversation, but I'll bring my TTY along for chatting, or whatever, just in case. Thea said she'd bring her laptop as well. Do Susie or her dad know ASL? Do you? I'm just finishing level 1 myself. I get home from work late Friday evening, but give me a call Sat. morning. (Telus Relay Service: 1 ) Maybe we can all go out and watch a movie that afternoon, or whatever. Where are Friesen's staying? I'll " drag " my brother along Sunday night =) See you soon! Only 7 more sleeps! Re: Your email Hi , I'm glad to hear you live close. We arrive Friday evening, weather permitting. Friesens will be in by six on Sunday and plan to come over that evening, we thought 7ish. I tried to phone Thea, spoke with her mother for awhile and she had gone to emergency, had been there a few hours and hadn't returned yet. Have you heard anything? We plan to meet around 7 on sunday. I thought I'd try to reach you after we got in. Can you talk without the TTY or should we bring ours? We'll bring lots of paper as Susie and Philip don't hear. We and Nettie will bring some munchies, WARNING I make Lousy coffee. Neither of us drink it. Friesen's are bringing their 3 year old daughter and after 7 hours of travel, I think will want to stay put pretty much. We'll probably spend the evening getting aquainted, etc. I hope Thea is OK! Thea are you there? Do I reach her at the AOL account now or is she back here?? My husband and I are looking forward to meeting you, . This is a casual get together, any ideas, bring them on out. I'd like to see this become a regular get together, maybe something like Texas. We'll have to kick some ideas around. Its only a week away. , feel free to bring someone along. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 4, 1999 Report Share Posted December 4, 1999 Sheryn , It will be nice to meet your brother as well. The Friesens are staying at the Travelodge. Susie's appointment is the 14th and they are returning on the 15th. We are leaving on the evening of the 14th. I'm sorry but I could not make out what Nettie said as to which Travelodge. We have completed 1/2 level 1 in ASL.We will bring both our TTY's and call you at 10:00 pm on Saturday. It would be great if Thea brought her parents. We will call Thea we get in Friday. I'll try again to reach her by phone this evening or tommorrow. I am sorry Thea has all this pain and she does't seem to be getting anything resolved but a bandaid or masking the problem. Going to emergency certainly makes it harder for them to dismiss that a problem exists. Its just too bad it takes so long to get in for help. Hugs for you both. Thanks for the newspaper clipping. That was cool. Health services are really going downhill. Looking forward to this weekend and meeting everyone. Sheryn Re: Your email Hi , I'm glad to hear you live close. We arrive Friday evening, weather permitting. Friesens will be in by six on Sunday and plan to come over that evening, we thought 7ish. I tried to phone Thea, spoke with her mother for awhile and she had gone to emergency, had been there a few hours and hadn't returned yet. Have you heard anything? We plan to meet around 7 on sunday. I thought I'd try to reach you after we got in. Can you talk without the TTY or should we bring ours? We'll bring lots of paper as Susie and Philip don't hear. We and Nettie will bring some munchies, WARNING I make Lousy coffee. Neither of us drink it. Friesen's are bringing their 3 year old daughter and after 7 hours of travel, I think will want to stay put pretty much. We'll probably spend the evening getting aquainted, etc. I hope Thea is OK! Thea are you there? Do I reach her at the AOL account now or is she back here?? My husband and I are looking forward to meeting you, . This is a casual get together, any ideas, bring them on out. I'd like to see this become a regular get together, maybe something like Texas. We'll have to kick some ideas around. Its only a week away. , feel free to bring someone along. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 4, 1999 Report Share Posted December 4, 1999 Sheryn, How long ago did you do the 1/2 level of ASL? IE, how much do you remember? Do you mean 10 AM when you say you are going to call me? I was hoping that we could get together and do something Sat. afternoon. Thea and I still want to go to the Muttart conservatory (she wasn't up to it today), so I thought that might be a good idea. SYS, , It will be nice to meet your brother as well. The Friesens are staying at the Travelodge. Susie's appointment is the 14th and they are returning on the 15th. We are leaving on the evening of the 14th. I'm sorry but I could not make out what Nettie said as to which Travelodge. We have completed 1/2 level 1 in ASL.We will bring both our TTY's and call you at 10:00 pm on Saturday. It would be great if Thea brought her parents. We will call Thea we get in Friday. I'll try again to reach her by phone this evening or tommorrow. I am sorry Thea has all this pain and she does't seem to be getting anything resolved but a bandaid or masking the problem. Going to emergency certainly makes it harder for them to dismiss that a problem exists. Its just too bad it takes so long to get in for help. Hugs for you both. Thanks for the newspaper clipping. That was cool. Health services are really going downhill. Looking forward to this weekend and meeting everyone. Sheryn ----- Original Message ----- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 6, 1999 Report Share Posted December 6, 1999 , just finished the first half of ASL last Wednesday, although I don't remember as much as I would like to. I thought your message asked Thea to call at 10:00 Sat morning, so I would try near then too, What's best for you? I was talking your time. Do you need reservations for the conservatory? Sheryn Re: Re: Your email Sheryn, How long ago did you do the 1/2 level of ASL? IE, how much do you remember? Do you mean 10 AM when you say you are going to call me? I was hoping that we could get together and do something Sat. afternoon. Thea and I still want to go to the Muttart conservatory (she wasn't up to it today), so I thought that might be a good idea. SYS, , It will be nice to meet your brother as well. The Friesens are staying at the Travelodge. Susie's appointment is the 14th and they are returning on the 15th. We are leaving on the evening of the 14th. I'm sorry but I could not make out what Nettie said as to which Travelodge. We have completed 1/2 level 1 in ASL.We will bring both our TTY's and call you at 10:00 pm on Saturday. It would be great if Thea brought her parents. We will call Thea we get in Friday. I'll try again to reach her by phone this evening or tommorrow. I am sorry Thea has all this pain and she does't seem to be getting anything resolved but a bandaid or masking the problem. Going to emergency certainly makes it harder for them to dismiss that a problem exists. Its just too bad it takes so long to get in for help. Hugs for you both. Thanks for the newspaper clipping. That was cool. Health services are really going downhill. Looking forward to this weekend and meeting everyone. Sheryn ----- Original Message ----- Quote Link to comment Share on other sites More sharing options...
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