Gayle's Notes

HOUR-LONG RSD INFORMATIONAL PROGRAM ON SATELLITE RADIO!! HEAR DR. SCHWARTZMAN SPEAK!! AND TRACY!! AND LINDSAY!!

2009-10-06T01:26:00Z

RSD AWARENESS ALERT!!!!!!!!!
TUNE IN TOMORROW, TUESDAY OCTOBER 6th, 2009 AT 8 AM!!!
Hour-long medical information program on RSD!
Hear Tracy speak on DoctorRadio.

Dr. Robert J. Schwartzman, internationally known and probably the formost expert on RSD research and treatment (Chair of Neurology, Hahnemann Hospital/Drexel Univ. School of Medicine) will be discussing RSD (Reflex Sympathetic Dystrophy) & answering questions.

Tuesday morning, October 6th from 8-9 am on the
DoctorRadio channels - XM 119 and Sirius 114 - Dr. Kimberly DiOre hosting.

If you do not have a current subscription to satellite radio or cannot access it, you can listen at no cost on the web by signing up for a FREE 7-DAY SIRIUS ON-LINE TRIAL SUBSCRIPTION at www.sirius.com (no credit card reqeusted - I picked it up myself this afternoon and the sound on the computer is perfect but you must have a speaker!).

In addition to Dr. Schwartzman, our daughter, Tracy, will be speaking/answering questions about her experience with RSD from 8-8:30 am, and another young woman, Lindsay Spengler will be available for questions after that. Two in-studio guests, recently diagnosed with RSD will be asking questions of Dr. S, Tracy and Lindsay.

GOOD NEWS AND BAD NEWS . . . .

2009-09-06T02:30:00Z

I knew it was a long time since I updated, but I cannot believe it's been SIX MONTHS!!!

Before I go any further, let me tell you about Tracy. No words are adequate for our gratitude to Dr. Schwartzman et al. She's back to work (after the summer off) as a 3rd/4th grade Special Education Resource Teacher (same school) in Montgomery County, MD. loves her "kids", loves her school, and is doing great! This morning, like so many others, she went out running/power walking with her dog. She runs/walks for over an hour each time. She also joined the gym and enjoys working out. She is attending grad school in the evening, and will be supervising after-school programs as well. How's that for a schedule!! We could not ask for more. We are approaching the two-year mark since Tracy emerged pain-free. Tracys been happily discharged by Dr. Schwartzman with his blessings for a wonderful life. She stops in to see him every so often just to give him a hug; her success reminds him why he's so dedicated to working toward a cure for others. It can be done!!! And that's the best news. Hope for others!

But it isn't all good news on the RSD front. So many people continue to suffer. Imagine being in excruciating, unrelenting pain every day. Pain that keeps you awake in the night, unable to function by day. Pain greater than childbirth, greater than amputations on the McGill pain scale. And so many people are yet undiagnosed, suffering from unbearable pain and being dismissed or just given pain meds/narcotics by unknowing doctors. We need to get the word out. We know of several people who have been diagnosed by the bell going off in someone's head from reading our story. That is one of the reasons I keep this blog going. Just remember that continual pain long beyond the time an injury, surgery, or other insult to the body should have or has healed may be RSD. Only the most RSD-knowledgable physicians (generally neurologists) are likely to diagnose RSD properly. And in the early stages, it is even more difficult to diagnose. But if you or anyone you know is suffering, please go or get them to a neurologist.

Right now, the experimental coma program is still not operating in Germany. Dr. S and Dr. Rohr are hopeful to get it going again in the not too distant future . The waiting list is growing; for many, this is their only hope and the wait is torture, both mentally and physically. To be sure, the coma has its risks, but when nothing else works and the RSD has taken over your body, this is what you pray for. We know, we've been there, and many of you accompanied on our journey through this blog. If you are new to the site, and you want to learn more, you can start from the earliest of Gayle's Notes to follow our path back to life for Tracy.

In the meantime, Dr. S is also getting results with his outpatient treatments (sub-anesthetic doses of ketamine), but in advanced cases, this generally does not offer long-term/permanent results. It does afford pain relief for many people and gives them strength to keep going.

Studies are underway for safer, easier treatment than the coma. However, tremendous research funding is needed and in these economic times, it is very difficult to get enough grant money to proceed.

Our help is desperately needed. We understand that in these difficult economic times, it is very difficult to write checks beyond the necessities of our own lives. We are all impacted. However, without our help, some people may give up on life. We cannot let that happen. We must end the agony of RSD!

Our fundraising this year has been very light. To those who have sent donations, we are most grateful. Some people have been sending in honor/memory donations. This can be done to honor someone for any occasion or achievement, and will be directly acknowledged by mail to the honoree. Also, please remember donations to the foundation in the event of someone's passing, and specify the relationship to the loved one you want notified.

For any donations, please donate as generously as you are able. Even small donations do add up.

We are now also able to take pledges to be paid automatically each month by credit card.

If you would like to join us in working working on our next event, please call or e-mail me.
I can be reached by e-mail:
gayle.brooks@verizon.net

All donations - honor and memory included - should be forwarded to:
BROOKS FAMILY FOUNDATION FOR RSD/CRPS
832 Second Street Pike - Suite 3
Richboro, PA 18954-1098

To charge on American Express, Visa, Mastercard . . .
Call our office at (215) 953-1730

All donations are tax deductible - We are an IRS approved 501(c)(3) charitable organization.

With love and prayers that you'll join our effort,

Gayle

March 28 Dinner cancelled . . . YOUR HELP IS DESPERATELY NEEDED!

2009-03-05T02:50:00Z

As you can see, I have not been good about updates; actually, the indecision about whether to go forward with our March 28th fundraising event, as well as tragic events within the RSD community led me to avoid updating. I guess I developed writer's block because I just didn't know what to say.

However, because of the current downturn in the economy, we have made a DECISION NOT TO PROCEED with an evening which requires significant funding outlays and attendance guarantees in advance (as every "party with a purpose" does). and no guarantees of making it back. We simply cannot afford to lose whatever we do have to allocate toward this most important research.

YOU CAN HELP THOUGH!!!! For right now, we need to depend on other means of fundraising which do not require a significant outlay and possible loss of already committed funds.

Before I go any further . . . . let me just assure you all that our daughter Tracy - COMA PATIENT #45 (Germany) - continues to be doing great! She is living a very full and normal life in Bethesda . . . teaching, socializing (I've promised to say no more than that), and has joined a gym. Rick actually goes back on our site regularly to read my updates; he says it helps to keep him grounded on difficult days, to regain perspective and realize how fortunate we are. We have our daughter back and more importantly, Tracy has her LIFE back. It is now over 16 months since she emerged from the experimental Ketamine coma completely free of RSD pain. Her results bring needed hope to so many others. We thank G-d every day for Dr. Randy Rosenberg who made the original diagnosis for Tracy, for Dr. Schwartzman, Drs. Rohr and Kiefer in Germany, Dr. Cantu in Mexico and all those who are committed to seeing RSD eradicated.

As you know, Judy, Tracy's coma partner in 2007, did not fare as well. She experienced return of her RSD to full body, with internal organ involvement. She was able to go back to Germany as we'd prayed she would. She went for a second experimental ketamine coma protocol in

Germany

this past December, had a rather uneventful coma and stay, and thank G-d, returned so much better! She has one stubborn site where the RSD still exists (left arm), but all the internal problems which had developed are gone. On January 26th, we had the joy of attending a fundraiser made in Judy's honor in Asbury Park, NJ at the Brick Wall Tavern and Pub. It was a HUGE success, both emotionally and financially (to offset some of their ongoing expenses for Judy's non-insurance-covered treatment). They've been through so much, with Judy having had to undergo the coma twice, as well as other hospitalizations The event was a testament to what wonderful people they are, it was great to see the outpouring of love and caring for the whole Hopkins family.

Young people are losing their lives to this dreaded syndrome!!!! Blog after blog describes their agony, some written by anguished parents describing their horror of watching their children lose more and more ground each day and being unable to stop the agony. People call me for advice, but I don't have a whole lot to offer at this time. My eyes fill as they relate their misery. I remember it vividly; I realize how fortunate we are to have finally escaped this nightmare, and will not rest until there is relief for others. Some blogs are even written after their children have actually died. These young people, who once held so much promise, cannot have died in vain.
We all need to CONTRIBUTE as much as possible. RSD can happen to any one of us - to our children - after a simple injury or surgery.
Tracy is testament that recovery is not impossible, but only a very few people of those who suffer can undergo what she did with the ketamine coma. As I have told you in many of my entries on this blog, the Ketamine Coma is only for the most advanced, intractable cases of RSD that have not responded to any other treatments. It is far too dangerous to use for lesser cases because of the huge risks involved, and it does not help everyone. The people, including our Tracy, who elect(ed) to try this still experimental protocol are those in the most advanced stages - for whom quality of life is virtually nonexistent due to persistent, excruciating pain which makes them unable to function. We need to spread awareness for earlier detection/diagnosis so that treatment can eradicate it before it advances to such horrific levels, and commit desperately needed funds for ongoing research.

Dr. Robert J. Schwartzman's research for a cure for RSD/ CRPS is too important to let it succumb to the downturn of the economy. We need to bring RSD/CRPS patients back to life, to smiles, to productivity.

The research must be ongoing, as must Dr. Schwartzman's outpatient and inpatient care for RSD patients at Hahnemann University Hospital/Drexel University College of Medicine, where he is Chair of Neurology. Dr. S. treats more RSD patients than anyone in the United States, and through his research and the sheer volume of RSD patients who come to him from all over the country, is in the best position to run these protocols. My husband (who is a periodontist and understands much more of Dr. S's technical explanations than I) and I have sat with Dr. S on many occasions, first with regard to Tracy's care and later to determine how we can spread the word and raise funds to support his research.

Research is in progress, but the investigators are in dire need of funds to continue. There's been a dramatic decrease in allocations due to the downturn in the economy. And each day, more young, bright, beautiful people are stopped in their tracks - unable to move, in unrelenting pain. Tracy wants us to help others get their lives back as she has. She wants them to not give up hope, to keep fighting the urge to just give up. They need our help!!! Not everyone is fortunate enough to even be able to consider the Ketamine coma Tracy underwent because of costs involved or their bodies being too fragile and compromised to handle its dangers. We need other options that will eradicate the pain at its source and stop the nervous system's errant tracking of pain messages to the brain. We are losing too many people to this horrendous syndrome.

We are truly saddened to not be able to go forward with the March Fundraiser. We will plan another event in the near future, and hopefully get back to the original plan by the Fall or Spring of 2010. At any rate, I know many of you were planning to attend the Dinner in March. We would be so grateful if you would still send as generous a donation as possible.

AND HERE'S SOME EXCITING NEWS . . . We are committing funds to help Dr. Schwartzman open a state of the art, full-service inpatient RSD unit for proven and experimental protocols within the operational limits of what is approved in the United States, and hire another RSD neurologist to help him run it. There is currently, due to the economic situation, a hiring freeze at the hospital. They need additional funds which must come from outside sources to be able to commit to this planned facility and its operation. If you remember when Tracy was to be hospitalized for her initial "awake ketamine", she was assigned to come in on a Monday morning and had to wait every day, bags packed and in agony, for a single ICU bed to open (which did not happen till Saturday night) because her treatment was considered "elective". This would mean that Dr. S would have his own beds and be able to admit patients at his discretion for treatment.

For anyone wanting more information about donating toward this new center and the ongoing RSD Research for a safer, easier cure than the Ketamine coma, please contact me. All donations will be greatly appreciated and, as in the past, are tax deductible.

PLEASE HELP!!!! We are losing so many promising lives to the nightmare of RSD; some have already tragically succumbed. Others are in a constant never-land of intractible, unrelenting pain that keeps them from participating in the lives they once knew. Please . . . with our help and the blessed team of doctors who truly care - Dr. Schwartzman et al - this torture can end.

Please spread the word . . . . Awareness will help people get diagnosed and treated sooner - before it becomes full body and intractable.

Feel free to call our Foundation office at (215) 953-1730 to donate by credit card.
The Foundation is an approved 501c3 Charitable Organization.

Please forward all checks to:

The BROOKS FAMILY FOUNDATION for RSD/CRPS

832 Second Street Pike - Suite 3
Richboro, PA 18954-1098
Phone: (215) 953-1730

Credit card donations gratefully accepted by phone.

HONOR AND MEMORY DONATIONS WILL BE ACKNOWLEDGED AS DESIGNATED.

Feel free to send me an e-mail if you'd like me to respond by e-mail or phone.
gayle.brooks@verizon.net

I am happy to speak with RSD patients/their families. Some have asked me in the Guestbook to respond, but not supplied me with e-mail or contact numbers. Feel free to do this privately by e-mail OR by commenting below, which will also come to my e-mail.

With love and prayers for a cure with our help . . .
We need to stop the excruciating pain and give these people hope for a better tomorrow.

Gayle Brooks

Founder and Trustee

THE BROOKS FAMILY FOUNDATION FOR RSD/CRPS

CELEBRATION FOR US . . . . AND PRAYERS FOR SO MANY OTHERS

2008-11-03T01:20:00Z

The entry below was written on November 2 and I just realized as I went to update today, that it was never posted, and was just waiting for me to appear and press "publish". Sorry about that. I've begun an update today (12/12/08), but will probably not post it till tomorrow.

We've had milestones to celebrate in our family. Carly celebrated her 30th with a great surprise party with her friends, organized by Tracy. Never could Tracy have done that a year ago!!! And unbeknownst to Tracy, she also had a surprise cake at the party. Carly's party was on October 17th (before her actual BD) and this was the first anniversary of Tracy's going into the coma. October 31st, Halloween, marked the date she truly awakened after her coma, so we are thrilled to say,
TRACY HAS PASSED THE ONE YEAR MARK!!!
This is a very special marker for all of us, even those who have yet to make it, for it lets people know that there is hope!

I am happy to say that the two young women who went to Germany in early October - Brandy and Elizabeth - are getting ready to come home, and are free of pain from RSD!!!!   With their parents, they have even spent time sight-seeing in Germany, and have met the next two RSD patients there to participate in the study. It is a double-edged sword that one of these people is Kyle - for his RSD did return with a vengence, although he is still not as bad as before the first coma. He will be entering his SECOND COMA to stop the downward spiral and bring him back, since he did initially have good results from the first coma protocol.   He's not as bad as before his first coma, we pray that he'll not only do well, but not be re-injured or have any other setbacks this time. YOU GO, KYLE!!

WE NEED TO SUPPORT THE ONGOING RSD/CRPS RESEARCH! YOU CAN HAVE A PART IN HELPING PEOPLE WHO NOW WAKE UP IN EXCRUCIATING PAIN EVERY DAY OF THEIR LIVES WITH NOTHING TO LOOK FORWARD TO THAN JUST GETTING THROUGH THE DAY. WITH ADVANCED R.S.D., THEY LOSE THEIR ABILITY TO FUNCTION - THE PAIN IS JUST ALL ENCOMPASSING. MANY LOSE THEIR WILL TO GO ON. WE HAVE TO STOP THIS, AND EVERY DONATION BRINGS US CLOSER TO THAT END. YOU CAN HELP BRING THEM BACK TO PRODUCTIVE LIVES. TRACY IS NOW WORKING FULL-TIME AS A SPECIAL EDUCATION AND HER STUDENTS ARE SO LUCKY TO HAVE A BRIGHT, BUBBLY AND ENERGETIC TEACHER! IT MAKES DOLLARS SENSE TOO - LET'S BRING THESE YOUNG PEOPLE BACK TO PRODUCTIVE LIVES AGAIN.

PLEASE SEND DONATIONS IN HONOR OF TRACY'S RECOVERY AND WITH HOPE FOR THE OTHERS WHO CONTINUE THIS HORRENDOUS NIGHTMARE OF PAIN . . . .   Tracy is proof that this does not have to be!!!!

Sadly, I need to let you know that Tracy's coma partner, JUDY, has not been doing well. The RSD is BACK, and differently than before. She's having trouble eating because of the burning pain in her esophagus/abdomen, and is losing weight. She's fighting to stay active, but has been in and out of hospitals as doctors try to get everything under control to a point where she'll be able to return to Germany for a second coma. I've been downtown to see Judy each time she's been in for treatment in Philly, and I know she's looking forward to going back for another "sleep" to get everything back under control. She knows we wish nothing less than Tracy's results for her. Judy feels that Tracy's response is what gives her hope for recovery!!    We are waiting for test results to tell whether she's ready to go now. Remember, she has to able to undergo the ketamine, and that has been part of her problem - that her liver enzymes were too high for her to undergo more ketamine.

We so look forward to a cure that does not involve Ketamine, for so many reasons! And at the same time, we look forward to Ketamine being approved in the U.S. so that people with advanced cases will not have to seek treatment in other countries. Currently, to my knowledge, it's only being done in Germany and Mexico. Good luck to my new FACEBOOK "FRIEND", Jennifer Leader, who's just left for the coma in Mexico. She's a beautiful young woman with a very supportive husband by her side.

There are actually millions of people who needlessly suffer excruciating pain every day of their lives. We need to help them get their lives back. Please help us spread Awareness so people will not spend years going from physician to physician just to seek a diagnosis, and then once they have it, not know where to turn. And we need to develop a safer, easier, more predictable cure than the Ketamine coma. But right now, for advanced cases, it's all we have. Let's get more cures so that we can get it approved for use here!!!

Please keep Judy in your prayers as she awaits the possibility of a second trip to Germany, another ketamine coma with hopefully lasting results. And to Kyle, Elizabeth, Brandy, Alessa, Melissa, Carrie, Lindsay, Margot, and so many others who've stepped up for the possibility of cure through the ketamine coma . . . . May you continue to do well and gain strength and seize more of life each day.
G-d bless.
Gayle

Update . . . . SAVE THIS DATE - MARCH 28, 2009 - The coma cannot be the only answer!!

2008-10-02T02:34:00Z

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

So much news on the RSD patient front . . . .

2008-08-04T02:20:00Z

And again, I am beginning with an apology. Thank you to all of you who continue to ask about our daughter, Tracy. Patients coming into our office continue to smile at our response as we tell them, Thank G-d, she is doing amazingly well!! And those who meet her cannot believe she was EVER so sick! And yes, she does have her life back. She's happier than I've seen her in so many years, and why not?   The agony is but a nagging memory which gives her a true appreciation of her life today. She's gotten a fabulous teaching job (as a resource teacher in special ed in a magnet school) in Chevy Chase, just a few minutes from her home. She has a boyfriend.  He's known her history from their first date over four months ago. He asked her if she had a cold. She said no, it's just her voice. He then asked about where she taught, knowing she was a teacher. She told him she was out of work at the moment, had been on medical leave. He asked how long had she been out - "15 months", she replied. Seeing Chuck's eyebrows raising, I guess, she decided to tell her story. She told him she'd take 10 minutes to describe what she'd been through, he could ask any questions he wanted, and that would be it. No more talking about it for the night. She told him about the pain, the struggle for a diagnosis, about her favorite doc in the whole wide world, Dr. Schwartzman, her trip to Germany for the coma, its after-effects, (i.e. her slightly raspy voice) etc. and his response? "Wow! That's the best first date story I ever heard". And they've been together ever since. I asked Chuck a month ago what he thought about her story; he told me he thought it was truly inspirational. Music to my ears!! More about them if I have their permission; as of now I haven't asked, so I better change the subject. Just know that Tracy's doing fabulously, has had a few minor injuries from which she's quickly recovered as would be expected of anyone else, and there's been NO RETURN OF RSD PAIN!! May Tracy's coma outcome continue to be a source of hope to all those who continue to suffer with RSD!

So many people lately have asked me if I am going to continue to update - (I've been in absentia for over two months) and the answer is a resounding YES! Believe me, it's not because there has not been news . . . . Just during July, four more people with severe, advanced RSD were "comatized" [my word] - two in Germany and two in Mexico. There are ongoing blog updates on three of these four participants in the two ketamine coma studies. Because of the severe limitations in number of patients who can be treated in Germany, Dr. Schwartzman has also been referring patients to the Mexico program which is done in conjunction with Dr. Kirkpatrick in Tampa, FL.

In my last entry, I asked for help for a young woman, Carrie Deussing, whom I've met and come to greatly admire for her spirit and determination to fund-raise on her own, in a very debilitated condition, to get to Mexico for the ketamine coma protocol. I had the honor of speaking at Carrie's fundraiser in June. To make a long story short, Carrie has gone to Mexico, undergone the coma protocol, had a ketamine outpatient booster and returned home to PA - all in 16 days!!!!!! I spoke with her via Skype a few days ago, while she was, believe it or not, still in the hospital! She really did not have any of the complications so well known to most who've gone through the protocols. She had a couple of days difficulty with hallucinations, but then really progressed amazingly well. Still very weak, of course, Carrie is home in PA. and free of pain from RSD!!!  And she is so very happy! Now she just needs to take things slowly, eat lots of protein, increase her walking each day, and is looking forward to soon beginning aqua therapy. You go, girl!!
You can follow Carrie at her site http://carriedeussingrsd.webs.com/myblog.

Carrie's coma partner in Mexico was Patricia Barry (with whom I have neither corresponded nor met). Pat's emerged from the coma, is responsive and is seen smiling in a picture. She is also improved, but is still hospitalized as of this writing. Her husband, a PhD biology professor, is updating her progress daily at http://www.williamkhayes.com/Pat/. We wish them the very best as they continue with her treatment in Mexico, and hopefully within another week, they too will be on their way home.

Now, for the two current coma patients in Germany . . . . (I talked about Mexico first because of Carrie Deussing whom I know personally and had already introduced to our readers in my last update). In late June, I had spoken with Matthew Irving's mother, Nancy.   Her anguish was palpable. Matt was losing ground daily and going downhill with increasing speed. She knew she had to get him help as soon as possible. She knew that they were slated for the next round for Germany, but had no date. I was giving her info on what it was like in Germany, recommendations, etc. Little did she know that when the opening came, she'd have, I am told, four days to get there!!! And they did, and so did Matt's coma partner, a woman named Melissa who braved the trip alone (I can't even imagine how she did that!). Melissa, described by Nancy Irving, as a woman with a heart of gold, who watched over Matthew as she began to emerge from from her own coma, is now doing very well. I do not believe Melissa has a blog, and I have no real details other than she's doing well and now has a friend who followed behind to Germany to help her and travel home with her when she's ready. Matt's mother, still in Germany, updates from time to time on Melissa's progress.

It is Matthew Irving, decidedly the most advanced of the four (and one of the most advanced ever) when he went over - with organ involvement as well as pain - who most needs our prayers, positive energy, whatever we believe in. He's still not out of the woods. He is a truly fine young man, at 21, who's fought courageously against this awful disease/syndrome until he simply could not fight anymore. His family was desperate to get him treatment before its too late. His mother and brother Daniel have accompanied him to Germany, where he's been fighting not only the RSD, but for his very life in the same IntensiveStation where Tracy was given her life back. He's run a fever of 104 for over eight days, has had pneumonia, a clot in his lung, and many other dangerous complications. We all know when our loved ones sign up for this that it's not going to be easy, but what Matt has been through has been a parent's second worst nightmare. I close my eyes as I write this - and say a prayer for Matthew. I've been through the re-intubations with Tracy and Judy, the fear, the helplessness. I wish Matthew's family strength in watching over Matthew, and pray that soon, he'll be coming through and on the road to recovery. He's just coming out of the coma, he's been extubated, and hopefully the hallucinations will calm down and allow him to rest more easily. You can read Matthews story on http://www.setmattfreeofrsd.com. Then click on Matthew in Germany   Matt is from Providence RI, and his whole town, radio station, and numerous fundraisers have come out for him, and continue to be held while he's in Germany.

Lindsay Spengler was bedridden for years before treatment and while not totally pain-free, is once again an active participant in life. She is an amazing young woman, working diligently with her docs, her own fortitude and her faith to come back full force. Countless TV segments, newspaper articles, etc. have been done to tell her amazing journey back. It has certainly not been a straight path to wellness for Lindsay, but she's determined to make it all the way back, and I believe she will. She is due to have her one last attachment - a trach tube - removed this week. We pray that all goes well for Lindsay, and it closes well and without need for surgical intervention.

Judy Hopkins, Tracy's coma partner is still having RSD pain in some areas, and because of other medical complications, has unfortunately been limited in the treatment she's been able to receive. But make no mistake - Judy is so much better than she was before she underwent the ketamine coma protocol. We are hoping she'll be able to return to college very soon. They need to keep the returned RSD pain from spreading, and have a plan of action. Judy will continue to have treatment and hopefully in September, the inpatient continuous ketamine and continuous brachial plexus (or whatever block they believe is appropriate at that time) that she's been awaiting for months. Judy's CarePage site is noted on our home page. Please feel free to read her story.

Kyle, our very bright and funny Oklahoma "farm boy" who pre-coma was also totally bedridden, organ-involved, unable to tolerate almost any sounds (he had to wear noise-obliterating headphones) is walking around, back to his computer work, and even put together a full computer this past week - something he hasn't been able to do for years!!! We were able to meet Kyle's mom, Robbie, for dinner in Philly on one of their trips here, and both of them on another trip as they continue to come to Dr. Schwartzman for boosters. Kyle has had, after a very good coma situation wherein he emerged virtually pain-free, now is experiencing return of RSD symptoms. His mother writes that they have treatment planned - he's getting physical therapy now in Oklahoma, and then will return to Philadelphia for a block and Ketamine (very similar return and symptoms to Judy's). They will even consider return to Germany if this does not work, Robbie says in her blog and she told me this week. But it's one step at a time, and right now, Kyle is enjoying his ability to concentrate which he did not have for so long. Hang tough, Kyle! I know you will! Kyle's story can be found at: http://kyledon.rsd.com

These are the people on whose stories I am most up-to-date. I will not comment on the others at this time, except to wish them my best for their continued improvements and recovery - and that means you, Alyssa!!

The people I've talked  about today are among the very few who've been fortunate enough to be afforded the only meaningful treatment available at this time for advanced RSD patients - and for each one of them, there are thousands who suffer, unable to get the help they need. Even if they are able to get to Dr. Schwartzman, they must be able to wait for treatment - whether in Germany or Mexico - and get the necessary funding together to go! Cost are anywhere from $55,000 on up, and none of this is covered by insurance.    As you can see, although many people have experienced total remission from RSD pain from the coma, there are no guarantees.

There is hope, to be sure. But we need to continue in our quest to raise funds for RSD research. A cure is actively being sought by Dr. Schwartzman's RSD research team. G-d help us, there has to be something easier than a coma in foreign lands. Please help us help Dr. Schwartzman alleviate the agony of RSD!!!!!! Additional funding is absolutely crucial to the continuance of this research. We cannot abandon the research, just when answers are beginning to appear.

PLEASE HELP!
As a federally approved 501(c)(3) charitable organization, ALL DONATIONS to the BROOKS FAMILY FOUNDATION FOR RSD ARE FULLY TAX DEDUCTIBLE AND WILL BE ACKNOWLEDGED FOR YOUR TAX RECORDS.   WE ACCEPT CHECKS, MASTERCARD, VISA, DISCOVER, AND AMERICAN EXPRESS.

Honor/memory donations will certainly be acknowledged to the honoree or the family of the deceased.   Our address/phone number is noted on our Home Page.

Some people have inquired as to whether they can make pledges and have a portion charged to their credit card each month.   The answer to this is a grateful YES, you can! Just call or write and we can set it up. Any way you wish to donate and any amount you can afford is appreciated. Please remember that RSD pain is ranked as the most excruciating pain imaginable on the McGill Pain Index. It destroys lives. Please help us rebuild them before its too late for many.

With love, hope and prayers for all who continue to suffer,
I bid you a beautiful tomorrow.

Gayle

And every day, we thank you G-d, Drs. Schwartzman, Rohr and Dr. Rosenberg . . .

2008-05-26T01:27:00Z

Tracy is doing so very well! She still tires easily, but her life is also now so busy with having returned to full-time teaching. Her energy is zapped by the evening, and she knows the true meaning of TGIF! But she is energized with the thoughts of her new teaching position for 2008-09! She was offered both positions she interviewed for this week - a regular third grade class in a wonderful school not too far from her home in Bethesda, and one as a "Resource" teacher (still enabling her to remain in special ed which she loves) which she accepted. In Chevy Chase, it's even closer to her home, but she's really excited about the position itself, and that was the reason she accepted it. At this point, it has not been determined if she'll work with the 3rd & 4th or 5th & 6th graders. Either way, it's exactly what she's wanted to do! A magnet school for science and math (as well as neighborhood for the local boundaries), she'll also be working with gifted kids who have learning disabilities. She is already planning strategies, but we suggested she take the weekend off to enjoy! The pool where she lives opened this weekend and she's enjoying it already, and she's out celebrating tonight! We could not ask for more.

As you know, our Brooks Family Foundation for RSD is currently accepting donations for RSD research leading to better, safer treatment and a cure. The decision has already been made, for the present, to direct all of our Foundation proceeds to Dr. Schwartzman's cutting edge research - for the common good of everyone suffering from this nightmare, life-stealing syndrome. We have made this decision in the hopes that eventually everyone will benefit, and we therefore cannot offer direct Foundation funds for individual patients seeking treatment. I wish we could, but once I offer one "scholarship" as Dr. S refers to it, I feel we'd have to grant them to others. I therefore had the unhappy task of relating this to someone who, like Tracy was last year, in constant, totally debilitating pain from RSD.

I received a round-a-bout e-mail on Thursday, which made me a aware for the first time of Carrie Deussing, a young woman, 30 years of age, married two years and suffering from what she's described as rapidly spreading RSD which resulted from a case of shingles she had last summer. She's seen Dr. Schwartzman who recommended she be treated with the ketamine coma, but she could not get into the protocol in Germany, apparently, for a couple of years! In this kind of pain, especially rapidly advancing, two years is way too long to wait. Therefore, Dr. Schwartzman referred her for the program in Mexico. She's already been seen for this program by Dr. Kirkpatrick (anesthesiologist/pain specialist in Tampa, FL) who's examined her, and believes she's a good candidate for their program in Mexico. Even though Carrie's RSD is rapidly advancing, she has had it for a relatively short period of time (compared to most of the people with advanced cases) and they believe this may just knock it out completely! What a gift that would be! There is, however, a hitch. Carrie is planning her own fundraising event on June 8th, has hired a caterer, has great plans for the Fundraiser - with an auction, live music, 50/50, and dinner will be served. Carrie's only asking for $35/pp. Carly's bought 10 tickets already to help Carrie, but she's not able to attend. Her tickets will just serve as a donation. Rick and I are also planning to go. Any of our friends and family care to join us? A party with a definite purpose!!!

I've spoken with Carrie and so has Carly. We were concerned about her doing this with very limited help and so close to her date - she has to pay the caterer no matter what! Carly remembered vividly all the effort it took her while working to put together Strike RSD! in NY. And she was not in physical pain like Carrie is. Carrie's been wheeling herself around malls, in pain, to get sponsors, donors for her auctions, etc. I cannot have imagined Tracy's trying to accomplish this while she was so debilitated. Carrie's determined to proceed as planned and She needs a head count soon! So let's get out there and help Carrie Deussing get herself to Mexico for the ketamine coma.

The Carrie Deussing RSD Foundation

The Carrie Deussing RSD Benefit Dinner

The Carrie Deussing RSD Benefit Dinner
Sunday June 8th, 4:00 p.m. - 8:00 p.m.
Lenola Memorial Hall, 229 N. Lenola Rd, Moorestown, NJ 80057

For your Entertainment and Fundraising Enjoyment there will be:
Live Band 50 / 50 Door Prizes
Guest Speakers Live Auction & Much More...

All are Welcome, it's a Family Affair!!!

For information on the event and to obtain tickets, please visit:
http://www.carriedeussingrsd.webs.com

Good luck to Carrie! You're in our prayers.

With love, hope and prayers for a better future for all those who suffer,
We promise our best efforts.
Gayle

SWEET SUCCESS!! AND THANKS TO ALL WHO PARTICIPATED IN STRIKE RSD!

2008-05-09T03:22:00Z

All week, I've been meaning to send out a note thanking all who participated in making Strike RSD such a successful jumpstart to our Foundation efforts in helping fund Dr. Schwartzman's research for a cure for RSD! He is working tirelessly toward that end, and we are hoping to make his and our dream a reality. We were so incredibly pleased with not only the financial end results of our first Strike RSD! Fundraiser (which, bottom line, is why we do it, but with the fun that was had! We received so many calls and e-mails from people telling us how much they enjoyed themselves.

Thanks so much to every one who supported us in different ways . . .

Those who worked to secure donations for the silent auction
Those companies and individuals who actually donated for the silent auction.
Those who not only purchased Event tickets, but made additional Sponsorship donations.
Those who were unable to attend, but nonetheless made Sponsorship donations.
Those who purchased tickets and attended
Those who attended and also purchased at the Silent Auction. Almost every item offered was purchased!

A very Special Thank you to Melanie Levine, who ran a "half-marathon" the morning of Strike RSD! and asked all her sponsors to support the Brooks Family Foundation for RSD. Calls came in from as far as London with donations.

Those who took part, I cannot thank you enough. When I called Terry Paylor, Dr. Schwartzman's head nurse to let her know the minimum we'll be sending them is $20,000 as of last Tuesday, her response was total enthusiasm. She felt that was a great beginning!

And now, here's the story of "Puppy" . . .
A very special Thank you to Stanley Burdette of Autumnview Farms in Mt. Airy, Md. who donated the most adorable cock-a-poo puppy for the Silent Auction. Tracy chose the "runt" of the litter, born February 13, 2008 because he was so sweet in nature and so adorable - apricot, with darker ears and four white paws and chest. When we picked him up at 8½ weeks, he weighed 3 pounds. At the time of the Auction, he was up to 4.6 pounds and was the undisputed star of the day. (Sorry, Tracy) We grew to love him while we took care of him before the Event, and just called him "Puppy" so we wouldn't get "too attached" because the last thing we wanted was another dog in addition to our two grand-dogs who come to visit quite often. I love them to death, but am glad when they go home so I can clean up. But I did consent to take care of "Puppy" for two weeks between when Tracy brought him home at Passover and the Strike RSD! event. We brought an open pen to Bowlmor him to be able to move around (and not get stepped on) during the Event. However, it was not necessary. He got passed around the whole time from person to person, and cell phones were being used continuously - to call building managers to make sure their apartment buildings were "pet-friendly". "Mom, would you like an adorable cocker/poodle mix?" "What do you think if I buy a puppy?", and on and on. Texting, calling, and then the bidding began for this adorable, already paper-trained pup who sleeps through the night on a bed in his crate. I stayed away from the puppy area entirely, busy with other things. All of a sudden, Carly announced it was almost time for the Auction to be closed down. Last bids were called for, and suddenly I looked at the distraught look on Rick's face, and at that moment realized we couldn't let go of this precious little pup! Little did we know, Puppy was now up to $2800. Carly spoke with the high bidder and told her, if she was willing to give up Puppy, she' (Carly) would take her directly to the breeder in Maryland, and she'd be able to pick out her own puppy at a much lower cost.  Our high bidder agreed, and was assured that we would pay what she'd bid, and we'd take "Puppy" back home with us. And now the Burdettes of Autumnview Farm have a new customer already from the auction in New York.  Andie and her husband, Matt will be on their way tomorrow morning for a wonderful Mother's Day gift for her mom. They're actually going for a "cock-a-lier" (King Charles Cavalier/cocker spaniel mix). And everyone is happy. "Puppy" is now home with us, and very loved. After two days of name debate, he is now "Cody", eats like a little pig, and happily kisses everyone who comes to see him. He spends all our "workdays" in our office, (in the back "lounge" area) eats, sleeps, plays, and comes out for "show and tell" with patients when his Daddy wants to show him off. Other than that, he's so good that no one even knows he's there. Tomorrow, when we go out for dinner will be the first time we've left him alone. The moral of this story is "NEVER take care of an adorable puppy as a "foster" parent unless you're prepared to fall in love and keep him. And this from the mom who never wanted a dog. Another good part of this, Andie was able to purchase Dr. Silver's "First year of Puppy Veterinary Care" package, which we did not take because we don't live in NY. Thank you to Dr. Silver, and also to Pet Central who donated the initial puppy needs - the food, a wonderful crate and bed, toys, leash, harness, wee-wee pads, etc.

A great venue choice - Bowlmor was a lot of fun, and the appetizers and food were right on target it seems. So many people who came not expecting to bowl did, and had a great time regardless of score. That says a lot! Allow me just a moment to brag if you couldn't make it there (and even if you were there as a guest, you couldn't have seen the inner workings of how well it came together, especially with the short prep time. Carly outdid herself, exhausted herself, and set us  up beautifully with a guide and all the accessories/supplies for future Events. Everyone was amazed how quickly and professionally she put this together, with organization second to none! Kudos to our Carly.

I am thrilled to say that while we are still awaiting some promised late donations from people who could not make it to New York, as well as "matching" donations from major companies equal to their employee'(s) participation, we will be sending out our first check to help fund Dr. Schwartzman's research very soon. Some of you noted you've been meaning to send in a donation, because you want to help, but were unable to come. If you could send or call in your donation now, it would be so appreciated, as we would like to forward our first check to Dr. Schwartzman's research some time next week.


Tracy continues to be well, in fact she's doing great! She is now "Miss Brooks" again - with her own class of ten special needs children in Montgomery County, MD. She is totally back to life, pain-free, and happy as can be.  And that thrills us to no end . . . it changes the very core of our existence.

We wish this were the case universally. Unfortunately, not everyone who has had the experimental ketamine coma has remained RSD pain-free, although those I know who've participated in the ketamine coma protocol are all doing much better than pre-ketamine coma.    We must continue our efforts to raise funding for ongoing and additional research. Once those with RSD  have had a taste of being pain-free after so many years of agony, it's very disheartening to have it rear its ugly head again. We need other alternative treatments to the ketamine coma, which is only open to a very few of the many thousands of people who suffer day after day. Judy and Kyle, you're in our prayers. Your return of localized RSD symptoms has been so similar, and we pray that they'll be resolved quickly. Links to their stories can be found on our front page. Other links will soon be added by Carly.

We are now accepting honor and memory donations.   We will gladly send an acknowledgement note to whomever you specify.

Our 501(c)(3) approval as a Public Charity has been received from IRS, so while we knew it was forthcoming, it is now totally OFFICIAL, All corporate matching donations applied for and held pending same, will now be honored retroactively and from this point forward by the respective companies, including Goldman Sachs and GlaxoSmithKline.

If your company offers matching donations, please apply for same or send me the forms together with your donation, and I will send it in.

Thank you again for your support.

With love and gratitude,
Gayle

PROTOCOL COMPLETED!!!!!

2008-04-24T00:15:00Z

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

And two more young people have regained their lives!! Join us on May 4th as we help STRIKE RSD!!!!!!

2008-03-22T02:43:00Z

Sorry it's taken me so long to update. Anyone who's sent me direct e-mail I've answered I believe.    I know that there are a couple from people with RSD who are awaiting answers. My responses to you will take more time, and I will get to them this weekend. Please know I haven't forgotten you; I never want to rush answers that really need thought. I just said to Rick tonight, I cannot believe how fast the days go by - I know that because it seems I just filled our 7-day vitamin containers and they're almost empty. Hard to keep up with it all, but I'm having a good time trying.

Before I go any further, let me update you on the patients Dr. Rohr's taken such good care of in Germany this past month.   The best news is that Kyle and Margo are BOTH OUT OF THE HOSPITAL AND BACK AT THE HOTEL. We speak with Kyle's parents regularly on Skype and e-mail. They will be flying back to the US on the same plane in a few days. Kyle and Margo both came out of their respective comas on schedule. As I told you, Kyle went to Germany as one of the most profoundly involved RSD patients, and came out of the effects of the coma in record time, and with almost complete resolution of his RSD pain!  Dr. Rohr believes they can knock this out with follow-up boosters.  Margo is doing great now as well. They are both of course weak, and working on getting their strength and appetites back. But this will happen.   We pray that they will be cautious in their activities, and they will remain pain-free. Margo's mother's last e-mail was euphoric regarding Margo's improvement after going through a very tough time. Again, I reiterate, thank G-d for the ketamine coma and its rebooting effect on the nervous system! However, please remember that this is only for the most advanced stages of disease - the point at which you go for it is as a last resort and in spite of the risks, because there is NOTHING ELSE THAT WORKS AT THIS POINT AND YOU ARE DESPERATE! We need to find easier and safer treatments/cure for this horrendously painful disease. And we need to diagnose it fast and treat it in the beginning, before it can spread! Too many people, many of them young, are suffering beyond imagination. You know I can tell you this first-hand. All of you know us are aware of what Tracy went through despite her valiant efforts to hide her pain whenever she could. You know that even when she did live on her own, I was always on call, and often had to jump in the car at a moment's notice and drive 160 miles to get to her as quickly as I could. Until the day came when she just couldn't survive on her own any more.   And she was certainly not the worst case, even among those I've described. But she was getting worse each day, and that was so very hard to watch.

The day Kyle and Margo leave Germany, our next American RSD patient, Alessa, will be on her way to the Klinikum Saarbruecken - first stop Boston for the MRI.   If you remember Kyle also made this stop on his way over from Oklahoma. This MRI is a part of the protocol also. The brain is imaged (through a special type of brain MRI) both before and after the ketamine coma treatment.   Alessa is 21 years old and has endured RSD since an injury at age 11. However, it was limited in scope for years and she was able to maintain her life pretty much. Unfortunately at 17, the RSD took off and went "total body". She's been totally bedridden for four years. A very bright young lady, she was unable to go to college as always anticipated.   Hopefully, this is the year she'll get her life back - and be able to attend college. Alessa and her parents are so looking forward to getting to Germany. Can you imagine looking forward to having your child put in a coma?? I can. And most of you went through it day by day with me, and if you didn't, please go back and read my daily updates, and look at the pictures if you want to know what it was like.   Alessa's mom has taken care of every detail to make the trip as endurable as possible for her, but it's going to be very difficult for her to travel.   We've pulled together as kindred families and are trying to make this as easy as possible for those who follow. Alessa's mom is now in touch with Kyle's parents. Together with a wonderful German couple they met in Saarbruecken, they're helping make additional travel arrangements for Alessa once she arrives in Germany. They only wished they'd have been able to meet one another before leaving. But we will all get together in Philadelphia around visits to Dr. Schwartzman's famous infusion suite, and hopefully enjoy a thankful dinner together in the not too distant future.

Judy is still doing much much better than before she went to Germany, but has had isolated return of the RSD symptoms. Tests are being done,with plans for further awake ketamine treatment to get the RSD back into full remission as soon as possible. We all need to pray for Judy. Send your positive vibes her way! We plan to join the Hopkins to celebrate Judy's birthday next week. Send her your good wishes at carepages.com. The link is on our homepage.

And I guess you're thinking, what about her own daughter - how is Tracy? Well, as Tracy says, "it's not about me anymore".  Well, of course - to us, it will always be about Tracy. The difference is, it's about our gratitude because she's doing so well.   Just take a look at her now in the photos. She's still very anxious to get back to teaching full-time in Bethesda. There was a glitch, because of the school district's concern as to whether she was really physically ready to return, but I believe that's been addressed.  She should hear this week, and is ready and able to return just as soon as a position is available. Tracy came down with a virus with 102 fever this week (why should she be different than everyone else these days?), but got through it very quickly and is fine now. She continues to take Donny on long walks (and even did so while she was sick) and is building up her muscle strength again.

                The Brooks Family Foundation for RSD is in operation! We are so excited about our first event.
What a fun way to celebrate Tracy's recovery and help provide funds to develop a safer, easier cure!!
                                                STRIKE RSD!!
                                                                            at BOWLMOR
                                                                   in the Village (Manhattan).
                                                               Sunday, May 4th at 5:00 pm.
Please spread the word to anyone who's interested in having fun, meeting new people, and just doing a great thing to help others!! I've never been to Bowlmor, but I've checked it out on-line www.Bowlmor.com and it looks amazing! Carly and her committee are doing a stellar job, but we can always use more help if you'd like to get involved in any way. Right now, we are still collecting items for the Silent Auction, which already has some really great donations. More about them later. Use your imagination, and if you're unsure, just call. We want to offer items in all cost ranges so that everyone can bid on something they really want to have. Some great ideas have been appearing, and we're really excited about offering fun and quality items for auction. We are working on a great surprise too. Look forward to a fun time . . . .
                Bowling (shoe rentals included), silent auction, dinner and cocktails!!
                        Please join Carly, Tracy, Rick and me to make this a success
            Let's show those suffering from the horrors of RSD that help is on the way!

                                              VISA, MASTERCARD, DISCOVER NOW ACCEPTED.
                                                AMERICAN EXPRESS TO BE SET UP THIS WEEK.
Please remember to RSVP a.s.a.p.
If you don't have the form, please call the Foundation phone (215) 953-1730 and leave a message.
I can e-mail OR FAX A FORM to you. We also can take your RSVP by phone. Forms can be faxed to me at(215) 953-1750 and credit card info called in if you prefer not to fax them. Cover sheets are not needed, as all faxes go directly to my personal office/desk. Snail mail works great too for checks! Thank you to those who've already mailed in. All contact information is below.   Any questions, call or e-mail me.

Brooks Family Foundation for RSD/CRPS
832 Second Street Pike - Suite 3
Richboro, PA 18954-1098
   Phone: (215) 953-1730
    Fax:        (215) 953-1750
   e-mail: gayle.brooks@verizon.net

All of our Christian friends, we wish you a Happy Easter. Sorry that the weather doesn't seem to be cooperating. Now that it's Spring, it feels more like winter. Oh well, we're in the home stretch. A safe trip home to our new friends Kyle and Margo, and may Alessa be watched over for as much comfort as possible as she travels to Germany this week.  May they all arrive safely and arrive in as good condition as possible.
G-d bless you all who've stuck with us in our journey and now our continued fight to STRIKE RSD!!
We're looking for good news this week Judy Hopkins!!!

Time for schlaffen,
Gayle

PRAYERS AND POSITIVE ENERGY NEEDED . . . . SO MANY WAYS TO HELP . . . .

2008-03-01T02:07:00Z

Two young people at the Klinikum Saarbruecken's IntensivStation are now sound asleep in their comas, and hopefully reacting positively to the Ketamine. However, there are again complications brewing, and the docs are working to get everything under control.   Both Kyle and Margo need all of our prayers and positive energy. Please think of the them regularly through the next days and ask G-d to help them get through this nerve "re-booting" coma, as you prayed and sent your positive energy to the Klinikum Saarbruecken for Tracy and Judy. And when you do go on Kyle's site, please leave a "comment" note for all of them. It's so helpful to know that people care. Rick and I have been speaking with Kyle's mom almost daily, and e-mailing. It's good to be able to listen; for them to know we've been there and back, and there's so much hope after years of continually worsening pain.
You can follow Kyle in Germany now at http://rsd.kyledon.com. Margo does not have a blog. But please keep her in your prayers as well.

Tracy's coma partner, Judy has had medical issues she's continuing to deal with, which are hampering treatment of the left brachial plexus region where she's had some return of RSD symptoms. We speak with her and her parents regularly and pray that things will fall in line so that she can get the ketamine treatment she needs. I will not go into detail here, but am providing links so that you can read Judy's own updates. She and her family are also keeping tabs on Kyle's blog which his parents are keeping up.
            Judy's blog is at http://carepages.com.   Once you sign in, she's judyhopkins2007.

And when you read the blogs, it's wonderful if you can just jot a quick note letting them know you're interested, you care about their plight. This gets to be a lonely disease when you suffer and can't join in every day things. It's good to know that people are rooting for you!

I am also corresponding with other young people with advanced RSD and hope that they too will be able to get the help they need.  The waiting game while one continues to get worse is very frustrating and frightening; even worse is suffering the continual, horrendous pain every day and not even knowing what it is/what is causing it. One of the biggest problems is doctors missing the diagnosis because they simply don't know about RSD/CRPS.  We need to educate the existing medical profession. Perhaps even more importantly, the general public needs the awareness to get to a neurologist who understands RSD/CRPS when pain that should have resolved just does continues to worsen, and eventually spread to other areas.

These people need our help!!! Imagine being in excruciating pain all over your body every day of your life! Imagine not being able to be touched without intense burning pain . . .Not being able to wear clothes, shoes, take a shower because of extreme burning skin sensitivity. Not being able to touch your child to help them when the pain is so bad they cannot walk on their own.   Not being able to hug your child, because it will cause them excruciating pain. This is what RSD does, and more. We need $$$$ for Research. We need media exposure. We need to get the word out about RSD/CRPS!!

Our first fundraising event will be announced very soon. But meanwhile, please . . .
Hold the date - it's Sunday May 4th, 2008, and we'll have a lot of fun doing a good thing.

Start thinking of any items you can donate for a silent auction as part of the Event!!  Know any celebrities who'd be willing to attend? E-mail me with any questions or suggestions. I've gotten some good ones in the last few days and want/need more. Carly will be at the helm on this one, and we'll need a lot of help. Stay tuned over the next few days for more info. Send me your e-mail address if I don't already have it!!  Let me or Carly know if you want to help. Even if you can't attend, there's much you can do to help us get where we need to be. You can reach me at gayle.brooks@verizon.net.

And here's our link so you can shop just about anywhere on line and have a percentage of your shopping donated (at no cost whatsoever to you!) to the Brooks Family Foundation for RSD.
Here's the joinlink for iGive.com - a "no cost way of helping our cause. http://www.iGive.com/Brooks4RSD Even if you just browse different sites, it gives us a shot at a $1000 donation. We also get $5 for your first purchase (in addition to whatever percentage they donate to us) in any of the on-line stores, as long as you go on from the iGive.com site.  Guilt-free shopping when you're helping fight RSD! Also, don't forget us when you're ordering office supplies, etc. There's quite a list of on-line stores.

Oh, and by the way, Tracy's doing great; she's ready and able to go back to teaching!!   She is so looking forward to returning; right now she's waiting for her school system to tell her where and when, since Dr. S does not want her to return to her former position. May all the others do as well as Tracy. That's why we've started the Foundation. We need to pay this gift foward.

May this be an uneventful weekend in the IntensivStation.
May all the parents get some relaxation, and the kids rest easily through the rest of the coma.
G-d bless you all!
Gayle

P.S. Thanks to our dear Cantor Benjamin Chait for visiting the families in Germany, going to the hospital. This awful disease carries no religious boundaries, and your caring is so appreciated.     Shabbot Shalom!

And the beat goes on . . . Two new young people arrived/awaiting Ketamine coma protocol in Germany. May they do as well as Tracy.

2008-02-25T01:37:00Z

I had a special birthday this weekend. And what made it most special was that both our daughters were here with us and that Tracy was able to fully participate in everything we did. She drove up to our home in Bucks County from Maryland on Thursday - 160+ miles - fully on her own, with only Donny as a travel companion. It was the best weekend, relaxing and celebrating with both our girls - and for the first time in many years, Tracy was able to fully participate. She remains free of any RSD pain, and we cannot describe how happy we are just to look at her. Carly expressed her amazement to me - a whole weekend of doing, and no concessions having to be made for Tracy's "condition".  Quite simply, she is completely independent, and able to do just about anything she could before RSD. In short, she is doing wonderfully. While still remaining very careful (as cautioned by Dr. Schwartzman) about things like walking on ice, carrying/moving heavy packages, etc., she is really living her life in full. She's even cleans now (I heard tell that she even does toilets) in case anyone wants to hire her. Hopefully, that will not be necessary though, as Dr. S. has cleared her to go back to teaching as of March 1, and she's awaiting a new assignment by MCPS (Montgomery County [Maryland] Public Schools.

I never realized how much is involved in setting up a charitable Foundation, and am working on some of the paperwork tonight.   Thank you again to all who sent donations in honor of my "Special Birthday"; for some of you this was a second donation, and for that I am even more grateful. You'll hear from me personally as well.

I am continually hearing from more people/(or their family members) who suffer the life-altering horrific pain and other effects of RSD/CRPS   Two families have recently arrived in Germany, sent by Dr. Schwartzman. Upon my recommendations, both are also staying at the same hotel as did we, and are anxiously putting all their hopes into their childrens' impending Ketamine coma Experimental Protocol at Klinikum Saarbrucken, as did we for Tracy and Judy in October/November.  Both of their children are apparently now scheduled to begin their medically induced experimental ketamine coma protocols on Tuesday, February 26th.

Kyle is 28 years old, hails from Oklahoma,  was injured while he was in college, and has full body RSD involvement, also extending to and affecting his heart, his lungs, and other organs. He has difficultly eating, and has lost over 125 pounds.    He was able to present in Boston for pre-treatment testing/MRIs and thankfully, through sheer will power and careful pre-planning, worked through intense pain to get through it and succeeded!!This was great news, as the hope is that these pre- and post-Ketamine coma tests will show actual positive changes in the brain from the coma and hopefully convince the FDA of its treatment validity, and hence, need for approval in the U.S.   And if it helps a person as advanced in symptoms as Kyle, it's even more evidence of its effectiveness.    Meanwhile, Kyle is in the hotel in Germany awaiting treatment, bedridden and in pain, desperately seeking relief. I continue to speak with his mother regularly by e-mail and skype, as well as by following their blogcast updates each day at http://rsd.kyledon.com They've asked us to invite as many people as we can reach to follow Kyle's progress. Hopefully, we will see major improvements for Kyle's future as we read his updates on-line. As you read, to know who writes, Kyle's mom is Robbie; Kerry is his dad.

The other RSD patient awaiting the Ketamine coma this week is only 16 years old. I spoke with her personally on the phone last week. Margo is at the same time, articulate and nervous about what lies ahead, while still giggly in her conversation - all that you'd expect from a bright teenager, trying to remain upbeat in a most difficult situation.    She suffers from advanced RSD as well, and was calling to find out some information regarding the treatment, after-effects, clothes to pack, etc.  Her situation is not as advanced as Kyle's, but has affected all of her extremities, and is impacting her life greatly.   I asked her mom if they'll have a site, and she said, no. She wishes to remain "low-key" in her treatment without publicity.   However, I will ask for you to send your prayers/positive energy toward the Klinikum Saarbrucken as they prepare for Kyle, and for Margo as well.   They, too, will be under the very capable care of Dr. Rohr in the IntensivStation.

Right now, Tracy is a "poster child" for the Ketamine Coma treatment possibilities, with her continued complete remission from RSD pain. Her miraculous response from this "rebooting" of the nervous system gives great hope to those who now suffer.  She went to Germany in a wheelchair, and is now walking everywhere, for hours at a time on good weather days in Bethesda, which is a great town for walking.  And she's ready to resume teaching again!!!

While Judy has also done very well, she has, unfortunately experienced some return of RSD pain/allodynia in the brachial plexus nerves, which affected her left arm, shoulder, neck and chest. She experienced a positive response to the brachial plexus nerve block that was performed (relief in the neck, shoulder, chest) and hopefully will have recovered enough from her current cold to have a second scheduled brachial plexus block performed tomorrow.   There are plans for other treatment for Judy once this occurs. It's kind of a Catch 22 situation right now, but the hope is that with treatment, Judy will soon be in same position again as Tracy - RSD-pain free! No matter how we look at it though, Judy's tremendously improved from her pre-Coma situation with RSD. Remember, Judy's updates are on carepages.com, with her personal site being judyhopkins2007.

Truly, there are other avenues of research underway as well, and more money is needed to fund them to hopefully discover effective, safer means of treatment, as well as to get approvals for the Ketamine Coma protocol to be performed in the U.S. for the most involved patients.

And we need to get the word out - to the medical community and the public for awareness of RSD/CRPS as a differential diagnosis when the pain remains beyond what is normally expected in any injury, surgery, etc. - so that effective treatment can be instituted in an early stage of the syndrome.   Talk it up. Tell people Tracy's story. Look at other sites. We must help these people and raise funds to help find cures. This can happen to anyone and from something as simple as a sprained finger, a spider bite, a surgery, and it does happen regulary. If it happens to someone close to you, you'll want to know it - to seek appropriate treatment, not have it go undiagnosed for years as it did for Tracy, and have it take over your body, your whole life.

Follow Kyle at http://rsd.kyledon.com
His parents are doing the updating, and they are both delightful, inspiring, well-spoken people, desperately praying the protocol their son is about to undergo will give him back at least some semblance of his former life, and encouraged by Tracy's full return to life. They understand Kyle's case is very far advanced, but have great hope not only for his abatement of symptoms, but for his ability to go through the repeat MRI testing in Boston and by virture of his positive results after treatment of such an advanced case, help win approval for treatment in the U.S.
Let us all pray for this as well as his personal recovery.

With prayers for Judy, for Kyle, for Margo,
and for others to follow, I wish you all a Good Night!

With Hope and Love,
Gayle

Your tax-deductible donations are gratefully accepted and acknowledged by:
Brooks Family Foundation for RSD/CRPS
832 Second Street Pike - Suite 3
Richboro, PA 18954-1098