Update . . . . SAVE THIS DATE - MARCH 28, 2009 - The coma cannot be the only answer!!
And again, where does the time go? As we just celebrated the Jewish New Year, Rosh Hashana, I am so aware of a most significant Year that has almost passed -Tracy's first full year anniversary since she awakened from the ketamine coma in Germany pain-free. (see my October 17-31, 2007 updates). She continues to be doing fabulously and for that we are so very grateful. She's coming up on a major milestone in her remission/recovery. And we could not be more grateful. Every day we thank G-d for our gift, but are still being ever so mindful of the millions who continue to suffer with this horrendous syndrome. Whether you use it's oldest known name (Causalgia), RSD (Reflex Sympathetic Dystrophy), which we use most often - or CRPS (Chronic Regional Pain Syndrome) its newest name. . . by any name it is a nightmare - of unrelenting pain - worse than childbirth, worse than amputations (according the McGill Pain Index, worse than almost any known pain).
Tracy remains in full remission and is doing phenomenally. She is teaching full-time as a resource teacher, taking an additional continuing ed course after school now, and has also taken on the "after-school (third grade) homework club". She's thrilled to be back to doing what she loves, working with kids who need extra help! Dr. Schwartzman no longer has to see her as part of his protocol, although she has dropped in to see him - just to show him how well she's doing and remind him what he's done for her life, and remind him of his successes. He is thrilled every time he gets to discharge a patient completely - to return them to LIFE IN FULL! May it occur more and more!!
It pains me to tell you that Tracy's coma partner, Judy, has not fared as well. She's been in and out of hospitals, which has afforded little relief of her returned pain. The word at this time is that she will be again returning to Germany for a repeat ketamine coma. We are in constant contact with her and her family, and will keep you updated when they have a date to go - or if any improvements occur which make this repeat trip unnecessary. Judy's biggest deterrent to continued treatment with her return of RSD symptoms was that her liver enzymes were elevated, precluding the use of additional ketamine for fear of causing liver damage. However, if the liver enzymes, which have returned to within normal limits remain as such, she will undergo the experimental coma again, as it did totally relieve her RSD symptoms on the first attempt. Keep Judy and her family in your prayers.
Everyone we know who's gone through the experimental ketamine coma protocol that we know of has come out better than they were before treatment. Some have regressed and needed additional treatment (beyond the boosters which are part of the standard protocol). I will not go into details now, as I want permission before telling anyone else's stories. Suffice it to say that both Kyle and Judy will be returning to Germany to hopefully regain full remission of RSD pain which they experienced after their initial ketamine comas in Germany. May they be able to go swiftly and return with the best results.
But right now, as I write, two other young women are anxiously awaiting their chances to be saved from the intense pain they suffer every day of their lives. Brandy has arrived and Elizabeth (Liz) is in flight to Germany. They'll be staying in the same hotel in Saarbruecken this week, and will share a room in the IntensivStation in Germany, beginning early next week. Brandy Sachs (read her story and updates by her parents on www.hopeforbrandy.org) and Elizabeth Weiss (www.hopeforelizabeth.com) are two accomplished young women seeking to regain lives they have reluctantly been forced to give up in recent years. I hope you'll read their stories/updates and send them your words of encouragement on their sites. It was so comforting to us to hear from other people, whether we knew them or not.
Meanwhile, we are planning a very exciting dinner/auction event with a most inspiring program for early Spring. Details are in the works, but it promises to be an extraordinary and inspiring evening.
All I can tell you now is that it will be held in a hotel in Center City Philadelphia on
SATURDAY, MARCH 28, 2009.
PLEASE SAVE THIS DATE ON YOUR CALENDAR!!!
Although our first fundraiser (Strike RSD at Bowlmor in NYC) was a great success, we hope to far surpass it in funds raised for the exciting research which is now in progress by Dr. Schwartzman's team, who are diligently engaged in Research to develop an easier, safer cure for RSD than a coma. Please remember that the experimental ketamine coma is only for the most advanced cases, and the object is to stop its progression BEFORE it spreads through the body. This research must be continually funded, as the costs are ongoing and we cannot afford to let it be halted for lack of money to continue when they are getting so close to answers.
We have been fortunate to become close with two young women who've done extremely well with their participation in experimental ketamine coma protocols in Mexico - Carrie Deussing and Lindsay Spengler - both of whom have sites which you can view. Both women are a delight to know, and although they are still in treatment, are fully taking part in life as they grow stronger. I am thrilled to note they are both working on with us on our next event!
At this point, we are looking for people who would like to involved in the planning. Please e-mail me today if you'd like to be involved now that we are in action!!! We must find a cure! Bright and wonderful people are losing their will to keep trying - we've attended support groups where people come, but can't stay, because they cannot tolerate being out of bed or sitting in their wheelchairs, when they crave the information. Their pain is palpable. We must help them back to life.
Please join us in our fight with your great ideas and positive energy! We need you!
L'Shana Tova!
Keep Judy, Kyle, Carrie, Lindsay and now Brandy and Elizabeth as they begin their "sleep" next week in your thoughts and prayers.
G-d bless them and their wonderful physicians!
PLEASE REMEMBER THE BROOKS FAMILY FOUNDATION FOR RSD/CRPS as you are beginning to send in "end of the year" charitable donations. YOUR HELP IS GREATLY NEEDED AS WE SEARCH FOR A CURE! We are happy to take payments over the phone for credit card donations if you wish. Your donations, in any form, are so appreciated.
See home page for mailing address/phone number information.
With love,
Gayle
Tracy remains in full remission and is doing phenomenally. She is teaching full-time as a resource teacher, taking an additional continuing ed course after school now, and has also taken on the "after-school (third grade) homework club". She's thrilled to be back to doing what she loves, working with kids who need extra help! Dr. Schwartzman no longer has to see her as part of his protocol, although she has dropped in to see him - just to show him how well she's doing and remind him what he's done for her life, and remind him of his successes. He is thrilled every time he gets to discharge a patient completely - to return them to LIFE IN FULL! May it occur more and more!!
It pains me to tell you that Tracy's coma partner, Judy, has not fared as well. She's been in and out of hospitals, which has afforded little relief of her returned pain. The word at this time is that she will be again returning to Germany for a repeat ketamine coma. We are in constant contact with her and her family, and will keep you updated when they have a date to go - or if any improvements occur which make this repeat trip unnecessary. Judy's biggest deterrent to continued treatment with her return of RSD symptoms was that her liver enzymes were elevated, precluding the use of additional ketamine for fear of causing liver damage. However, if the liver enzymes, which have returned to within normal limits remain as such, she will undergo the experimental coma again, as it did totally relieve her RSD symptoms on the first attempt. Keep Judy and her family in your prayers.
Everyone we know who's gone through the experimental ketamine coma protocol that we know of has come out better than they were before treatment. Some have regressed and needed additional treatment (beyond the boosters which are part of the standard protocol). I will not go into details now, as I want permission before telling anyone else's stories. Suffice it to say that both Kyle and Judy will be returning to Germany to hopefully regain full remission of RSD pain which they experienced after their initial ketamine comas in Germany. May they be able to go swiftly and return with the best results.
But right now, as I write, two other young women are anxiously awaiting their chances to be saved from the intense pain they suffer every day of their lives. Brandy has arrived and Elizabeth (Liz) is in flight to Germany. They'll be staying in the same hotel in Saarbruecken this week, and will share a room in the IntensivStation in Germany, beginning early next week. Brandy Sachs (read her story and updates by her parents on www.hopeforbrandy.org) and Elizabeth Weiss (www.hopeforelizabeth.com) are two accomplished young women seeking to regain lives they have reluctantly been forced to give up in recent years. I hope you'll read their stories/updates and send them your words of encouragement on their sites. It was so comforting to us to hear from other people, whether we knew them or not.
Meanwhile, we are planning a very exciting dinner/auction event with a most inspiring program for early Spring. Details are in the works, but it promises to be an extraordinary and inspiring evening.
All I can tell you now is that it will be held in a hotel in Center City Philadelphia on
SATURDAY, MARCH 28, 2009.
PLEASE SAVE THIS DATE ON YOUR CALENDAR!!!
Although our first fundraiser (Strike RSD at Bowlmor in NYC) was a great success, we hope to far surpass it in funds raised for the exciting research which is now in progress by Dr. Schwartzman's team, who are diligently engaged in Research to develop an easier, safer cure for RSD than a coma. Please remember that the experimental ketamine coma is only for the most advanced cases, and the object is to stop its progression BEFORE it spreads through the body. This research must be continually funded, as the costs are ongoing and we cannot afford to let it be halted for lack of money to continue when they are getting so close to answers.
We have been fortunate to become close with two young women who've done extremely well with their participation in experimental ketamine coma protocols in Mexico - Carrie Deussing and Lindsay Spengler - both of whom have sites which you can view. Both women are a delight to know, and although they are still in treatment, are fully taking part in life as they grow stronger. I am thrilled to note they are both working on with us on our next event!
At this point, we are looking for people who would like to involved in the planning. Please e-mail me today if you'd like to be involved now that we are in action!!! We must find a cure! Bright and wonderful people are losing their will to keep trying - we've attended support groups where people come, but can't stay, because they cannot tolerate being out of bed or sitting in their wheelchairs, when they crave the information. Their pain is palpable. We must help them back to life.
Please join us in our fight with your great ideas and positive energy! We need you!
L'Shana Tova!
Keep Judy, Kyle, Carrie, Lindsay and now Brandy and Elizabeth as they begin their "sleep" next week in your thoughts and prayers.
G-d bless them and their wonderful physicians!
PLEASE REMEMBER THE BROOKS FAMILY FOUNDATION FOR RSD/CRPS as you are beginning to send in "end of the year" charitable donations. YOUR HELP IS GREATLY NEEDED AS WE SEARCH FOR A CURE! We are happy to take payments over the phone for credit card donations if you wish. Your donations, in any form, are so appreciated.
See home page for mailing address/phone number information.
With love,
Gayle
Gayle,
Please e-mail me. I have had RSD for over 5 years, and I live in NYC. I would like to talk some more about a couple of things . . . but I would rather not post them here. Get back to me when you can. Thanks!
L'shana Tova,
Marsha
Reply to this