PROTOCOL COMPLETED!!!!!
BEFORE I BEGIN THIS UPDATE about Tracy . . .
SOMETHING VERY IMPORTANT! RSD RESEARCH DESPERATELY NEEDS YOUR SUPPORT!!
PLEASE JOIN US FOR our very first event!!
STRIKE RSD!
Sunday, May 4th at 5:00 PM
at Bowlmor in Manhattan.
The RSVP deadline has been extended.
Call to get tickets.
Credit cards accepted by phone now. (215) 953-1730
BOWLING, SHOES, OPEN BAR, AND DINNER ALL INCLUDED!!!
FABULOUS AND FUN OPPORTUNITIES FOR SILENT AUCTION!!
TICKETS ARE $125 PER ADULT, $50 PER CHILD
SPONSORSHP OPPORTUNITIES AVAILABLE IN ADDITION TO TICKETS OR IF YOU CANNOT COME . . .
Bumper Sponsor $50-$99
Special recognition at the event
Bowling Ball Sponsor $100-499
Special recognition at the event
Spare Sponsor $500-999
Includes 2 Tickets & special recognition at the Event
Strike Sponsor $1,000-1,499
Includes 4 Tickets & Special Recognition at the Event
Lucky Strike Sponsor $1500-2,499
Sponsor a lane at the individual level -
includes 8 tickets & Special Recognition at the Event
Kingpin Sponsor $2500 and above
Sponsor a lane at the Corporate Level
includes 8 tickets & Special Recognition at the Event
I seem to start all my updates with an apology b/c I have been delinquent in getting the word out on Tracy.
Right now, she is here with us, having returned home for the Passover holiday. She totally helped me prepare for the First Sedar (first time she's really been able to in years) and enjoyed being with the 29 plus Elijah who attended.
We have another guest with us who Tracy brought with her and is staying until our Strike RSD! event on May 4th. He's an absolutely precious cock-a-poo puppy (now ten weeks old) who was donated by the breeder where she and Carly obtained their great puppies - Donny and Ollie. I cannot tell you how much fun we've had with this little bundle of joy. We will miss him greatly, but he'll be going home with someone, complete with a year of vet visits (donated by Ollie's vet, Dr. Silver in NY if the person lives in NY, his own accessories (crate, leash, harness, training pads, etc. donated by Pet Central in NY). He's doing well with paper training, loves to play, give kisses, and thinks he's a lot bigger than his just weighed 3.6 pounds!!! Come ready to bid - he'll steal your heart. We keep just calling him puppy to remind us we're just foster parents, so we know he's not ours. He loves other dogs and all people.
I am so happy to say that Tracy is doing great! She's completed her final booster infusions - the protocol for all patients going through the Ketamine coma under Dr. Schwartzman's/Dr.Rohr's experimental program in Germany, which after return is "2 weeks . . . 2 weeks . . . one month . . . three months. Monday and Tuesday of this week, Tracy underwent her final booster infusions. No hallucinations, I am happy to say. She was just very tired. These boosters were simply precautionary in Tracy's case, following the protocol. Tracy has had absolutely NO RETURN OF RSD since she awakened from her coma. She is just a few days short of SIX MONTHS!
She is back to a full social life in Bethesda, all of which I must keep private at her request for now. But she's having a great time and totally enjoying her life, and can't wait to get back. The only catch has been that the Montgomery County Public Schools have given her a difficult time about returning to work due to some minor restrictions. This, however, should soon be remedied. In the meantime, and even after she returns, Tracy's decided to go back to tutoring children who need extra help, so if you know anyone who needs an OUTSTANDING teacher to help them catch up, stay on track or get ahead now and during the summer, please e-mail her at tracybrooks2@yahoo.com. Her bags are packed and she's planning to head back to Bethesda tomorrow.
She drives everywhere, walks 2+ hours each day; her muscles/strength are returning, and she's soon to be back in the gym as well. She looks fantabulous!! And if I go on any more, she will absolutely have a fit. So I thank G-d every day, and cannot tell you how happy we are for her!
Meanwhile, Carly's been so involved in getting our first fundraiser for RSD research on track. We are so hoping you'll join us - in celebration of Tracy's recovery - and to raise funds for Dr. Schwartzman's research for a cure, and hopefully easier, safer cures than the ketamine coma. More about all this is a future update.
Last week we had dinner with Kyle (coma patient #49)'s mom, Robbie in Philadelphia. They were in for Kyle's boosters. He's had some return and had to come back this week; he's in our prayers for return of NO RSD PAIN! after repeat boosters this week. He has done miraculously well, and this is just a 'hiccup" in his progress, as Robbie says. Incredibly upbeat. They have to fly back and forth every two weeks from Oklahoma to our Dr. Schwartzman. Kyle's doing so much more than he has in years and they are so very grateful. You can check out Kyle's story on www.rsd.kyledon.com . His mom updates more regularly than I.
Today, Tracy's "coma partner" Judy, came with her parents to visit. She looks terrific, but still isn't feeling as good as she looks. Hopefully, that too will be worked out. You can read Judy's story as well. I cannot remember the exact way I get to her site on carepages.com, but it's listed on the main page for our site. The Hopkins got to meet Puppy, and enjoyed his antics! We told stories and caught up with each other. The good news is that Judy's forging ahead and registering for classes again in the Fall. We feel certain she'll get back for this is a very positive step. She's also back to her favorite high heels and walking very well!! We pray that her liver enzymes will come back down so she can get rid of the localized RSD pain that has returned. As long as her liver enzymes are still elevated, she cannot have ketamine. So say a prayer for Judy too!
Alessa is out of her coma in Germany and now is a regular room. She's relearning to walk after years in bed, but this will be a slow process as her mom reported on-line today. She has had no return of RSD pain, but has a lot of physical therapy ahead of her to regain muscle strength to allow her to walk. But in time she will walk again, unassisted. What a miracle this is as well. Her site is http://reachforrecovery.net. I had been talking to her parents regularly on Skype, but they've had computer issues, so I don't know as much about the day-to-day with her progress as I did before.
Lindsay Spengler is another miracle young woman. She also spent years in bed with relentless pain, unable to eat, attached to four different tubes - for eating, for meds, for help breathing. She had to travel by air ambulance to see doctors. And today, seven months after a different ketamine coma - (performed in Mexico when she could not be taken in Germany), she too is walking! And eating! And laughing! And e-mailing me regularly! And hoping to join us at Strike RSD! To go to Lindsay's site . . . it's http://www.caringbridge.org/visit/lindsay
Also, there are videos showing her condition pre- and post-ketamine coma. She's given me both to refer our readers to. http://www.rsdfoundation.org/en/Lindsay_Synopsis.htm
There is risk inherent with these still experimental treatments, especially the ketamine coma. They are only recommended for the most advanced cases, people whose condition has advanced to the point where they have no life. When you reach this point, you are willing to take risks to regain your life as you once knew it. Tracy did and she has her life back. It has not been easy, but she's BACK TO LIFE IN FULL!! And we pray that the others will soon be able to say the same. And that others will follow, in Germany, in Mexico, and g-d willing with the help of Dr. Schwartzman et al's research, in the United States of America!
Hoping you'll join our fight to Strike RSD!!! in New York! - And if you can't come, you can still become a Sponsor!!
With love and hope,
Gayle
SOMETHING VERY IMPORTANT! RSD RESEARCH DESPERATELY NEEDS YOUR SUPPORT!!
PLEASE JOIN US FOR our very first event!!
STRIKE RSD!
Sunday, May 4th at 5:00 PM
at Bowlmor in Manhattan.
The RSVP deadline has been extended.
Call to get tickets.
Credit cards accepted by phone now. (215) 953-1730
BOWLING, SHOES, OPEN BAR, AND DINNER ALL INCLUDED!!!
FABULOUS AND FUN OPPORTUNITIES FOR SILENT AUCTION!!
TICKETS ARE $125 PER ADULT, $50 PER CHILD
SPONSORSHP OPPORTUNITIES AVAILABLE IN ADDITION TO TICKETS OR IF YOU CANNOT COME . . .
Bumper Sponsor $50-$99
Special recognition at the event
Bowling Ball Sponsor $100-499
Special recognition at the event
Spare Sponsor $500-999
Includes 2 Tickets & special recognition at the Event
Strike Sponsor $1,000-1,499
Includes 4 Tickets & Special Recognition at the Event
Lucky Strike Sponsor $1500-2,499
Sponsor a lane at the individual level -
includes 8 tickets & Special Recognition at the Event
Kingpin Sponsor $2500 and above
Sponsor a lane at the Corporate Level
includes 8 tickets & Special Recognition at the Event
I seem to start all my updates with an apology b/c I have been delinquent in getting the word out on Tracy.
Right now, she is here with us, having returned home for the Passover holiday. She totally helped me prepare for the First Sedar (first time she's really been able to in years) and enjoyed being with the 29 plus Elijah who attended.
We have another guest with us who Tracy brought with her and is staying until our Strike RSD! event on May 4th. He's an absolutely precious cock-a-poo puppy (now ten weeks old) who was donated by the breeder where she and Carly obtained their great puppies - Donny and Ollie. I cannot tell you how much fun we've had with this little bundle of joy. We will miss him greatly, but he'll be going home with someone, complete with a year of vet visits (donated by Ollie's vet, Dr. Silver in NY if the person lives in NY, his own accessories (crate, leash, harness, training pads, etc. donated by Pet Central in NY). He's doing well with paper training, loves to play, give kisses, and thinks he's a lot bigger than his just weighed 3.6 pounds!!! Come ready to bid - he'll steal your heart. We keep just calling him puppy to remind us we're just foster parents, so we know he's not ours. He loves other dogs and all people.
I am so happy to say that Tracy is doing great! She's completed her final booster infusions - the protocol for all patients going through the Ketamine coma under Dr. Schwartzman's/Dr.Rohr's experimental program in Germany, which after return is "2 weeks . . . 2 weeks . . . one month . . . three months. Monday and Tuesday of this week, Tracy underwent her final booster infusions. No hallucinations, I am happy to say. She was just very tired. These boosters were simply precautionary in Tracy's case, following the protocol. Tracy has had absolutely NO RETURN OF RSD since she awakened from her coma. She is just a few days short of SIX MONTHS!
She is back to a full social life in Bethesda, all of which I must keep private at her request for now. But she's having a great time and totally enjoying her life, and can't wait to get back. The only catch has been that the Montgomery County Public Schools have given her a difficult time about returning to work due to some minor restrictions. This, however, should soon be remedied. In the meantime, and even after she returns, Tracy's decided to go back to tutoring children who need extra help, so if you know anyone who needs an OUTSTANDING teacher to help them catch up, stay on track or get ahead now and during the summer, please e-mail her at tracybrooks2@yahoo.com. Her bags are packed and she's planning to head back to Bethesda tomorrow.
She drives everywhere, walks 2+ hours each day; her muscles/strength are returning, and she's soon to be back in the gym as well. She looks fantabulous!! And if I go on any more, she will absolutely have a fit. So I thank G-d every day, and cannot tell you how happy we are for her!
Meanwhile, Carly's been so involved in getting our first fundraiser for RSD research on track. We are so hoping you'll join us - in celebration of Tracy's recovery - and to raise funds for Dr. Schwartzman's research for a cure, and hopefully easier, safer cures than the ketamine coma. More about all this is a future update.
Last week we had dinner with Kyle (coma patient #49)'s mom, Robbie in Philadelphia. They were in for Kyle's boosters. He's had some return and had to come back this week; he's in our prayers for return of NO RSD PAIN! after repeat boosters this week. He has done miraculously well, and this is just a 'hiccup" in his progress, as Robbie says. Incredibly upbeat. They have to fly back and forth every two weeks from Oklahoma to our Dr. Schwartzman. Kyle's doing so much more than he has in years and they are so very grateful. You can check out Kyle's story on www.rsd.kyledon.com . His mom updates more regularly than I.
Today, Tracy's "coma partner" Judy, came with her parents to visit. She looks terrific, but still isn't feeling as good as she looks. Hopefully, that too will be worked out. You can read Judy's story as well. I cannot remember the exact way I get to her site on carepages.com, but it's listed on the main page for our site. The Hopkins got to meet Puppy, and enjoyed his antics! We told stories and caught up with each other. The good news is that Judy's forging ahead and registering for classes again in the Fall. We feel certain she'll get back for this is a very positive step. She's also back to her favorite high heels and walking very well!! We pray that her liver enzymes will come back down so she can get rid of the localized RSD pain that has returned. As long as her liver enzymes are still elevated, she cannot have ketamine. So say a prayer for Judy too!
Alessa is out of her coma in Germany and now is a regular room. She's relearning to walk after years in bed, but this will be a slow process as her mom reported on-line today. She has had no return of RSD pain, but has a lot of physical therapy ahead of her to regain muscle strength to allow her to walk. But in time she will walk again, unassisted. What a miracle this is as well. Her site is http://reachforrecovery.net. I had been talking to her parents regularly on Skype, but they've had computer issues, so I don't know as much about the day-to-day with her progress as I did before.
Lindsay Spengler is another miracle young woman. She also spent years in bed with relentless pain, unable to eat, attached to four different tubes - for eating, for meds, for help breathing. She had to travel by air ambulance to see doctors. And today, seven months after a different ketamine coma - (performed in Mexico when she could not be taken in Germany), she too is walking! And eating! And laughing! And e-mailing me regularly! And hoping to join us at Strike RSD! To go to Lindsay's site . . . it's http://www.caringbridge.org/visit/lindsay
Also, there are videos showing her condition pre- and post-ketamine coma. She's given me both to refer our readers to. http://www.rsdfoundation.org/en/Lindsay_Synopsis.htm
There is risk inherent with these still experimental treatments, especially the ketamine coma. They are only recommended for the most advanced cases, people whose condition has advanced to the point where they have no life. When you reach this point, you are willing to take risks to regain your life as you once knew it. Tracy did and she has her life back. It has not been easy, but she's BACK TO LIFE IN FULL!! And we pray that the others will soon be able to say the same. And that others will follow, in Germany, in Mexico, and g-d willing with the help of Dr. Schwartzman et al's research, in the United States of America!
Hoping you'll join our fight to Strike RSD!!! in New York! - And if you can't come, you can still become a Sponsor!!
With love and hope,
Gayle
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