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