So much news on the RSD patient front . . . .
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
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
Your blog was very informative, I am thankful for the people that were able to get help in Germany and Mexico. Insurance Companies should realize that People with RSD all need help to put out "The flame". I have full body RSD and hope to go to Germany or Mexico for the Coma treatment one day in hopes of a remission, I pray for all of you and God Bless.
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Thanks so much for the updates. It is encouraging for those of us still suffering without any solution.
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