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