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