Guest guest Posted April 22, 2002 Report Share Posted April 22, 2002 Tony, Are you coming to the conference on May 2rd? If so, I will see you there, Take care, Bill Werre ------------------------------------------------ swartzlloyd wrote: > Carol -- I'm just catching up with my e-mail after being off for a > while, and want you and Rob to know that Marilyn and I are thinking > of you both. I hope Rob is doing better. > > It's also an opportunity to reiterate what some have already written - > -- that you are a bright light in the murkiness around this wretched > disease, and how much we all appreciate both your sound > information/advice and your wonderful spirit. Take care. > > Tony > in Boston Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 22, 2002 Report Share Posted April 22, 2002 Tony, Are you coming to the conference on May 2rd? If so, I will see you there, Take care, Bill Werre ------------------------------------------------ swartzlloyd wrote: > Carol -- I'm just catching up with my e-mail after being off for a > while, and want you and Rob to know that Marilyn and I are thinking > of you both. I hope Rob is doing better. > > It's also an opportunity to reiterate what some have already written - > -- that you are a bright light in the murkiness around this wretched > disease, and how much we all appreciate both your sound > information/advice and your wonderful spirit. Take care. > > Tony > in Boston Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 22, 2002 Report Share Posted April 22, 2002 Tony, Are you coming to the conference on May 2rd? If so, I will see you there, Take care, Bill Werre ------------------------------------------------ swartzlloyd wrote: > Carol -- I'm just catching up with my e-mail after being off for a > while, and want you and Rob to know that Marilyn and I are thinking > of you both. I hope Rob is doing better. > > It's also an opportunity to reiterate what some have already written - > -- that you are a bright light in the murkiness around this wretched > disease, and how much we all appreciate both your sound > information/advice and your wonderful spirit. Take care. > > Tony > in Boston Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 22, 2002 Report Share Posted April 22, 2002 Tony, Thanks for the compliment and especially for the good wishes. Rob is doing better after some medication changes and we're looking forward to the conference. I think this bit of a set back threw me because in spite of his diagnosis he has done so well for the past four years, and for the first time I feel that the symptoms are breaking through in spite of Dr. Freeman's masterful management of the medications. Like many, I also worry that I won't be up to the task of caregiving when the going gets tough, and sometimes that gets to me too. But Rob and I are both back on our " one day at a time " mode, and we're doing better. I appreciate you and the whole list being there and being a cyber- shoulder to lean on. We all need it sometimes. Carol & Rob > Carol -- I'm just catching up with my e-mail after being off for a > while, and want you and Rob to know that Marilyn and I are thinking > of you both. I hope Rob is doing better. > > It's also an opportunity to reiterate what some have already written - > -- that you are a bright light in the murkiness around this wretched > disease, and how much we all appreciate both your sound > information/advice and your wonderful spirit. Take care. > > Tony > in Boston Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 23, 2002 Report Share Posted April 23, 2002 Carol, Kind, caring people like yourself have enormous reserves of inner strength which may not always be apparent until they are really needed. Judging by how many other people on the list, both carers and patients have dealt with challenges and adversity, I am sure you and Rob will find a way where necessary. Examples like yours and others give me the resolve to try harder when I feel like lying down or surrendering. I wish you and Rob the very best and I remember how you helped me with some important information I needed to understand what was happening to me. It's great to know when there is no-one else to turn to, the folks on the forum are more than willing to help. Best regards Sowter --- cblanger49 cblanger@...> wrote: > Tony, > > Thanks for the compliment and especially for the > good wishes. Rob is > doing better after some medication changes and we're > looking forward > to the conference. I think this bit of a set back > threw me because > in spite of his diagnosis he has done so well for > the past four > years, and for the first time I feel that the > symptoms are breaking > through in spite of Dr. Freeman's masterful > management of the > medications. > > Like many, I also worry that I won't be up to the > task of caregiving > when the going gets tough, and sometimes that gets > to me too. But > Rob and I are both back on our " one day at a time " > mode, and we're > doing better. > > I appreciate you and the whole list being there and > being a cyber- > shoulder to lean on. We all need it sometimes. > > Carol & Rob > > > > > Carol -- I'm just catching up with my e-mail > after being off for a > > while, and want you and Rob to know that Marilyn > and I are thinking > > of you both. I hope Rob is doing better. > > > > It's also an opportunity to reiterate what some > have already > written - > > -- that you are a bright light in the murkiness > around this > wretched > > disease, and how much we all appreciate both your > sound > > information/advice and your wonderful spirit. Take > care. > > > > Tony > > in Boston > > > If you do not wish to belong to shydrager, you may > unsubscribe by sending a blank email to > > shydrager-unsubscribe > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 23, 2002 Report Share Posted April 23, 2002 Carol, Kind, caring people like yourself have enormous reserves of inner strength which may not always be apparent until they are really needed. Judging by how many other people on the list, both carers and patients have dealt with challenges and adversity, I am sure you and Rob will find a way where necessary. Examples like yours and others give me the resolve to try harder when I feel like lying down or surrendering. I wish you and Rob the very best and I remember how you helped me with some important information I needed to understand what was happening to me. It's great to know when there is no-one else to turn to, the folks on the forum are more than willing to help. Best regards Sowter --- cblanger49 cblanger@...> wrote: > Tony, > > Thanks for the compliment and especially for the > good wishes. Rob is > doing better after some medication changes and we're > looking forward > to the conference. I think this bit of a set back > threw me because > in spite of his diagnosis he has done so well for > the past four > years, and for the first time I feel that the > symptoms are breaking > through in spite of Dr. Freeman's masterful > management of the > medications. > > Like many, I also worry that I won't be up to the > task of caregiving > when the going gets tough, and sometimes that gets > to me too. But > Rob and I are both back on our " one day at a time " > mode, and we're > doing better. > > I appreciate you and the whole list being there and > being a cyber- > shoulder to lean on. We all need it sometimes. > > Carol & Rob > > > > > Carol -- I'm just catching up with my e-mail > after being off for a > > while, and want you and Rob to know that Marilyn > and I are thinking > > of you both. I hope Rob is doing better. > > > > It's also an opportunity to reiterate what some > have already > written - > > -- that you are a bright light in the murkiness > around this > wretched > > disease, and how much we all appreciate both your > sound > > information/advice and your wonderful spirit. Take > care. > > > > Tony > > in Boston > > > If you do not wish to belong to shydrager, you may > unsubscribe by sending a blank email to > > shydrager-unsubscribe > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 23, 2002 Report Share Posted April 23, 2002 , Thanks for the kind words. I really don't know how I would get along without this list. You are all so wonderful! It's amazing to me how we all band together and help each other, and those who need help at one point are there ready to help others a few days later. If one good thing has come out of Rob's illness it is my renewed faith in the kindness of others and in the strength of the human spirit. Carol & Rob > > > Carol -- I'm just catching up with my e-mail > > after being off for a > > > while, and want you and Rob to know that Marilyn > > and I are thinking > > > of you both. I hope Rob is doing better. > > > > > > It's also an opportunity to reiterate what some > > have already > > written - > > > -- that you are a bright light in the murkiness > > around this > > wretched > > > disease, and how much we all appreciate both your > > sound > > > information/advice and your wonderful spirit. Take > > care. > > > > > > Tony > > > in Boston > > > > > > If you do not wish to belong to shydrager, you may > > unsubscribe by sending a blank email to > > > > shydrager-unsubscribe@y... > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 23, 2002 Report Share Posted April 23, 2002 , Thanks for the kind words. I really don't know how I would get along without this list. You are all so wonderful! It's amazing to me how we all band together and help each other, and those who need help at one point are there ready to help others a few days later. If one good thing has come out of Rob's illness it is my renewed faith in the kindness of others and in the strength of the human spirit. Carol & Rob > > > Carol -- I'm just catching up with my e-mail > > after being off for a > > > while, and want you and Rob to know that Marilyn > > and I are thinking > > > of you both. I hope Rob is doing better. > > > > > > It's also an opportunity to reiterate what some > > have already > > written - > > > -- that you are a bright light in the murkiness > > around this > > wretched > > > disease, and how much we all appreciate both your > > sound > > > information/advice and your wonderful spirit. Take > > care. > > > > > > Tony > > > in Boston > > > > > > If you do not wish to belong to shydrager, you may > > unsubscribe by sending a blank email to > > > > shydrager-unsubscribe@y... > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 23, 2002 Report Share Posted April 23, 2002 , Thanks for the kind words. I really don't know how I would get along without this list. You are all so wonderful! It's amazing to me how we all band together and help each other, and those who need help at one point are there ready to help others a few days later. If one good thing has come out of Rob's illness it is my renewed faith in the kindness of others and in the strength of the human spirit. Carol & Rob > > > Carol -- I'm just catching up with my e-mail > > after being off for a > > > while, and want you and Rob to know that Marilyn > > and I are thinking > > > of you both. I hope Rob is doing better. > > > > > > It's also an opportunity to reiterate what some > > have already > > written - > > > -- that you are a bright light in the murkiness > > around this > > wretched > > > disease, and how much we all appreciate both your > > sound > > > information/advice and your wonderful spirit. Take > > care. > > > > > > Tony > > > in Boston > > > > > > If you do not wish to belong to shydrager, you may > > unsubscribe by sending a blank email to > > > > shydrager-unsubscribe@y... > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 23, 2002 Report Share Posted April 23, 2002 Time for a group hug I think. [[[[[[[[[[[[[[[[everyone]]]]]]]]]]]]]]]]]] Carol I understand all too well how blessings can come from the worst of circumstances. Dave and I lost a very dear friend this past weekend. She was only 26 and had a disorder called Friedreich's ataxia.. her funeral was this morning. We got to know her because of Dave's mother's illness... her initial symptoms were loss of balance and so I got in touch with others on alt.support.ataxia newsgroup and that led to our friendship with Cindy and many others with various forms of ataxia all over the world. Knowing Cindy was one of the greatest honours of my life so far but it never would have happened if Dave's mother hadn't gotten sick. Life is truly mysterious and wonderful, we are all so interconnected. Do I hear some more philosophy on this theme from B. Fisher and others coming up?... I hope so. Love, Pam Re: Carol and Rob > , > > Thanks for the kind words. I really don't know how I would get along > without this list. You are all so wonderful! > > It's amazing to me how we all band together and help each other, and > those who need help at one point are there ready to help others a few > days later. If one good thing has come out of Rob's illness it is my > renewed faith in the kindness of others and in the strength of the > human spirit. > > Carol & Rob > > > > > > > Carol -- I'm just catching up with my e-mail > > > after being off for a > > > > while, and want you and Rob to know that Marilyn > > > and I are thinking > > > > of you both. I hope Rob is doing better. > > > > > > > > It's also an opportunity to reiterate what some > > > have already > > > written - > > > > -- that you are a bright light in the murkiness > > > around this > > > wretched > > > > disease, and how much we all appreciate both your > > > sound > > > > information/advice and your wonderful spirit. Take > > > care. > > > > > > > > Tony > > > > in Boston Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 23, 2002 Report Share Posted April 23, 2002 Time for a group hug I think. [[[[[[[[[[[[[[[[everyone]]]]]]]]]]]]]]]]]] Carol I understand all too well how blessings can come from the worst of circumstances. Dave and I lost a very dear friend this past weekend. She was only 26 and had a disorder called Friedreich's ataxia.. her funeral was this morning. We got to know her because of Dave's mother's illness... her initial symptoms were loss of balance and so I got in touch with others on alt.support.ataxia newsgroup and that led to our friendship with Cindy and many others with various forms of ataxia all over the world. Knowing Cindy was one of the greatest honours of my life so far but it never would have happened if Dave's mother hadn't gotten sick. Life is truly mysterious and wonderful, we are all so interconnected. Do I hear some more philosophy on this theme from B. Fisher and others coming up?... I hope so. Love, Pam Re: Carol and Rob > , > > Thanks for the kind words. I really don't know how I would get along > without this list. You are all so wonderful! > > It's amazing to me how we all band together and help each other, and > those who need help at one point are there ready to help others a few > days later. If one good thing has come out of Rob's illness it is my > renewed faith in the kindness of others and in the strength of the > human spirit. > > Carol & Rob > > > > > > > Carol -- I'm just catching up with my e-mail > > > after being off for a > > > > while, and want you and Rob to know that Marilyn > > > and I are thinking > > > > of you both. I hope Rob is doing better. > > > > > > > > It's also an opportunity to reiterate what some > > > have already > > > written - > > > > -- that you are a bright light in the murkiness > > > around this > > > wretched > > > > disease, and how much we all appreciate both your > > > sound > > > > information/advice and your wonderful spirit. Take > > > care. > > > > > > > > Tony > > > > in Boston Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 23, 2002 Report Share Posted April 23, 2002 Time for a group hug I think. [[[[[[[[[[[[[[[[everyone]]]]]]]]]]]]]]]]]] Carol I understand all too well how blessings can come from the worst of circumstances. Dave and I lost a very dear friend this past weekend. She was only 26 and had a disorder called Friedreich's ataxia.. her funeral was this morning. We got to know her because of Dave's mother's illness... her initial symptoms were loss of balance and so I got in touch with others on alt.support.ataxia newsgroup and that led to our friendship with Cindy and many others with various forms of ataxia all over the world. Knowing Cindy was one of the greatest honours of my life so far but it never would have happened if Dave's mother hadn't gotten sick. Life is truly mysterious and wonderful, we are all so interconnected. Do I hear some more philosophy on this theme from B. Fisher and others coming up?... I hope so. Love, Pam Re: Carol and Rob > , > > Thanks for the kind words. I really don't know how I would get along > without this list. You are all so wonderful! > > It's amazing to me how we all band together and help each other, and > those who need help at one point are there ready to help others a few > days later. If one good thing has come out of Rob's illness it is my > renewed faith in the kindness of others and in the strength of the > human spirit. > > Carol & Rob > > > > > > > Carol -- I'm just catching up with my e-mail > > > after being off for a > > > > while, and want you and Rob to know that Marilyn > > > and I are thinking > > > > of you both. I hope Rob is doing better. > > > > > > > > It's also an opportunity to reiterate what some > > > have already > > > written - > > > > -- that you are a bright light in the murkiness > > > around this > > > wretched > > > > disease, and how much we all appreciate both your > > > sound > > > > information/advice and your wonderful spirit. Take > > > care. > > > > > > > > Tony > > > > in Boston Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 23, 2002 Report Share Posted April 23, 2002 Pam, Carol and all, If someone had told me in 1998 that I would be visiting MSA friends in NSW and QLD Australia and stopping over in Los Angeles to see other MSA friends I would also have called them crazy. But the friendships I have built here can't be measured. After much ado, I have all my tickets and will be in Wolumla, NSW for the Ford 50th birthday barbie on May 12 (though I may sleep through it ) are you SURE you don't live in Walkabout Creek? Thanks for the help in getting the tickets to Merimbula. On May 15th I fly to Southport, Queensland to see Anne and Tony (and family) On May 22nd I fly back to Los Angeles and will layover to meet some of our friends in California - anyone want in - contact Vera for details. Vera you can let me know details at Anne's up to the 20th your time. I get into Los Angeles at 10:55AM but will have to clear customs so 1 PM is probably a reasonable time. I will arrive home at 6 AM on May 23rd Since we are having a DC meeting this weekend and the National Boston meeting the following weekend ) I am going to get a LOT of hugs!!!! For now the rest of you will have to settle for e-hugs, (((((((((((((HUGS)))))))))))))) Hope to see a bunch of you May 3-5 in Boston Take care, Bill Werre ================================== Pam Bower wrote: Time for a group hug I think. [[[[[[[[[[[[[[[[everyone]]]]]]]]]]]]]]]]]] Carol I understand all too well how blessings can come from the worst of circumstances. Dave and I lost a very dear friend this past weekend. She was only 26 and had a disorder called Friedreich's ataxia.. her funeral was this morning. We got to know her because of Dave's mother's illness... her initial symptoms were loss of balance and so I got in touch with others on alt.support.ataxia newsgroup and that led to our friendship with Cindy and many others with various forms of ataxia all over the world. Knowing Cindy was one of the greatest honours of my life so far but it never would have happened if Dave's mother hadn't gotten sick. Life is truly mysterious and wonderful, we are all so interconnected. Do I hear some more philosophy on this theme from B. Fisher and others coming up?... I hope so. Love, Pam Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 23, 2002 Report Share Posted April 23, 2002 Pam, Carol and all, If someone had told me in 1998 that I would be visiting MSA friends in NSW and QLD Australia and stopping over in Los Angeles to see other MSA friends I would also have called them crazy. But the friendships I have built here can't be measured. After much ado, I have all my tickets and will be in Wolumla, NSW for the Ford 50th birthday barbie on May 12 (though I may sleep through it ) are you SURE you don't live in Walkabout Creek? Thanks for the help in getting the tickets to Merimbula. On May 15th I fly to Southport, Queensland to see Anne and Tony (and family) On May 22nd I fly back to Los Angeles and will layover to meet some of our friends in California - anyone want in - contact Vera for details. Vera you can let me know details at Anne's up to the 20th your time. I get into Los Angeles at 10:55AM but will have to clear customs so 1 PM is probably a reasonable time. I will arrive home at 6 AM on May 23rd Since we are having a DC meeting this weekend and the National Boston meeting the following weekend ) I am going to get a LOT of hugs!!!! For now the rest of you will have to settle for e-hugs, (((((((((((((HUGS)))))))))))))) Hope to see a bunch of you May 3-5 in Boston Take care, Bill Werre ================================== Pam Bower wrote: Time for a group hug I think. [[[[[[[[[[[[[[[[everyone]]]]]]]]]]]]]]]]]] Carol I understand all too well how blessings can come from the worst of circumstances. Dave and I lost a very dear friend this past weekend. She was only 26 and had a disorder called Friedreich's ataxia.. her funeral was this morning. We got to know her because of Dave's mother's illness... her initial symptoms were loss of balance and so I got in touch with others on alt.support.ataxia newsgroup and that led to our friendship with Cindy and many others with various forms of ataxia all over the world. Knowing Cindy was one of the greatest honours of my life so far but it never would have happened if Dave's mother hadn't gotten sick. Life is truly mysterious and wonderful, we are all so interconnected. Do I hear some more philosophy on this theme from B. Fisher and others coming up?... I hope so. Love, Pam Quote Link to comment Share on other sites More sharing options...
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