We smile, for Tracy smiles brightly. She has a new life!!! PLEASE HELP US HELP OTHERS RE-GAIN THEIRS AS WELL!
Hello, everyone. It is late at night, but Rick just approached me and told me numerous people have told him and Tracy they've been checking the site and are disappointed to find no new news. So, here I am! Here's the latest.
A trip in a crowd at a restaurant last weekend that caused pain, but it didn't last and it wasn't RSD - just hurt like anyone else, and then it went away. And the next day, Tracy and I took a trip down to Bethesda . . . . more about that later.
Tracy continues to improve daily. She looks great and is walking totally normally now! Her voice is still quite low and the volume projected is often just below what her hearing-impaired mother is able to catch on the first try. But it is also improving, and we're just awaiting full return on that. Today, they worked her out more than before in the pool, adding exercises to help build up those muscles. After the pool though, she came home, showered and went to the rehab hospital to see her grandpop who had a minor stroke last week and is now in rehab. After that we went out to dinner. She did a lot of walking and is no worse for the wear.
As I mentioned, Tracy and I drove down to Bethesda on Sunday. We picked a great time to go. The weather was fabulous - 75 degrees on Monday!!! She spent time Sunday trying on her clothes, most of which are way too big on her now, so we packed them up and took them back to our home in Bucks County, and others to give away. Now she has some room to spare in her little condo for clothes that fit when she returns. On Monday, she drove over to the school she taught in, which is being torn down/rebuilt and is temporarily relocated - so she had to find it first. They did not know she was coming - People were saying "Hi Tracy" like she'd never left, and then "Oh, my G-d!" double-takes when they realized she was actually there. People said they wanted her diet - I don't think so!! The coma diet really knocks you afterward for a while. It was a little teaser visit, but she's almost back to teaching. She will not be able to return to the profoundly challenged children she taught before, but she will be able to continue in special ed in some capacity if there's a position available when Dr. Schwartzman gives her the green light. Otherwise, she'll teach in a regular classroom, as she is certified for both venues. But the good news is, she's almost there!! Hooray!!!!!
Tracy also got to go out to dinner with friends in Bethesda, and meet up with other friends afterwards. She came back thrilled that she'd been able to see the friends she met up with, and I know she wished she could stay to see others. But instead, I got her up at 5 am the next morning to drive back so I could go to the office. She'll be back soon enough.
Tracy is heading for Florida next week for the Martin Luther King weekend with her cousin Marissa. The day after she returns, she'll be back at Dr. Schwartzman's for her next set of infusions - two days in a row. After that, she'll have no infusions for three months!!!! Tracy's plan is to return to Bethesda as soon as she fully recovers from the next set of Ketamine boosters, which she believes will be the following week. We'll see. She will need to be able to care for not only herself, but able to care for Donny (her dog) also - and that means walking him, etc. She wants to bring him back with her, although I'm not sure how we'll be able to separate him from his grandfather, Rick. Tracy just made me come in to look at them. They're both in bed asleep together, and of course, Donny is in my spot and on my pillow and now under the covers!!!
Anyway, as far as Tracy is concerned it's been steady improvement and no RSD pain! And for that we are so very grateful. I know you want to know how Judy is doing also. I wish it was as good as Tracy, but she's had some return of RSD pain in one arm. Otherwise, she's also doing well. Dr. S has her coming in for ketamine infusions to hopefully knock out the arm pain quickly, and not allow it to worsen. She had two days of infusions last week and will complete three additional days this week as of Thursday. They, the Hopkins, had been working for a long time on getting a bill passed in NJ regarding RSD as a recognized disability, which went through on Monday, January 7, 2008, so that is very good news! Judy, Bob and Linda were all there with the Governor of NJ for the signing, so that was a very important day for them. We have Judy in our prayers that all goes well for her and she's back to "no RSD pain" after this course of treatment. Certainly it was nowhere near the intensity of pre-coma, but they wanted to get rid of it right away so it could not get worse and more difficult to treat. This is a set-back for Judy, but we know she'll get through it and back to herself quickly. She has her life almost back and she's not about to give that up!!! You go girl!
There are so many stories of RSD sufferers on-line, those who haven't been as lucky as our Tracy (or Judy) and thousands of others who haven't the strength or desire to tell their stories on-line. They are the reason we have founded the Brooks Family Foundation for RSD/CRPS!!!! Thank you to all who've donated. We've received company letters for matching donations as well, and for that we are doubly grateful. But we need a lot of money if we are to facilitate research for a cure - especially for one that is easier than a coma!!! And awareness - for much sooner diagnoses is a must as well!! PLEASE HELP US TO HELP OTHERS NOT HAVE TO GO THROUGH THE TORTURE TRACY ENDURED FOR SO MANY YEARS!!! Donations can be sent to:
Brooks Family Foundation for RSD/CRPS
832 Second Street Pike - Suite 3
Richboro, PA 18954-1098
Our mission is to raise funds for awareness, research and treatment of RSD/CRPS. If you have any questions, please feel free to e-mail me at gayle.brooks@verizon.net. I will gladly answer any questions I feel capable of, or refer them to our foundation attorney. We have an IRS EIN# as a 501(c)(3) charitable organization.
Please help us if you haven't donated yet. Also, if you have anything of value to donate which can be sold, we will be happy to deal with that as well and forward you an acknowledgement to use for tax purposes. Let me know by e-mail. Any fund-raising ideas? We'll be glad to listen. We have people who've offered to help get us media attention - Now's the time. We'd like to be on Oprah, but are willing to start more locally. Please let us know. Tracy's ready to talk about her experience and we need to get the word out about others who suffer every day and are unable to get the help they need - some because they just can't get the money together or are just too weak from the effects of this horrendous syndrome to undergo the added danger of the coma. Again, we need your help!!
May you and your loved ones never have to suffer from RSD, which can develop following the most simple injury.
And if you or anyone you know does suffer from RSD/CRPS as so many do, please know that we're trying to get help for you. Don't give up!!! There is hope!
Good night and G-d bless!
Kisses to Judy, Linda and Bob. This will be the charm!
Love,
Gayle
A trip in a crowd at a restaurant last weekend that caused pain, but it didn't last and it wasn't RSD - just hurt like anyone else, and then it went away. And the next day, Tracy and I took a trip down to Bethesda . . . . more about that later.
Tracy continues to improve daily. She looks great and is walking totally normally now! Her voice is still quite low and the volume projected is often just below what her hearing-impaired mother is able to catch on the first try. But it is also improving, and we're just awaiting full return on that. Today, they worked her out more than before in the pool, adding exercises to help build up those muscles. After the pool though, she came home, showered and went to the rehab hospital to see her grandpop who had a minor stroke last week and is now in rehab. After that we went out to dinner. She did a lot of walking and is no worse for the wear.
As I mentioned, Tracy and I drove down to Bethesda on Sunday. We picked a great time to go. The weather was fabulous - 75 degrees on Monday!!! She spent time Sunday trying on her clothes, most of which are way too big on her now, so we packed them up and took them back to our home in Bucks County, and others to give away. Now she has some room to spare in her little condo for clothes that fit when she returns. On Monday, she drove over to the school she taught in, which is being torn down/rebuilt and is temporarily relocated - so she had to find it first. They did not know she was coming - People were saying "Hi Tracy" like she'd never left, and then "Oh, my G-d!" double-takes when they realized she was actually there. People said they wanted her diet - I don't think so!! The coma diet really knocks you afterward for a while. It was a little teaser visit, but she's almost back to teaching. She will not be able to return to the profoundly challenged children she taught before, but she will be able to continue in special ed in some capacity if there's a position available when Dr. Schwartzman gives her the green light. Otherwise, she'll teach in a regular classroom, as she is certified for both venues. But the good news is, she's almost there!! Hooray!!!!!
Tracy also got to go out to dinner with friends in Bethesda, and meet up with other friends afterwards. She came back thrilled that she'd been able to see the friends she met up with, and I know she wished she could stay to see others. But instead, I got her up at 5 am the next morning to drive back so I could go to the office. She'll be back soon enough.
Tracy is heading for Florida next week for the Martin Luther King weekend with her cousin Marissa. The day after she returns, she'll be back at Dr. Schwartzman's for her next set of infusions - two days in a row. After that, she'll have no infusions for three months!!!! Tracy's plan is to return to Bethesda as soon as she fully recovers from the next set of Ketamine boosters, which she believes will be the following week. We'll see. She will need to be able to care for not only herself, but able to care for Donny (her dog) also - and that means walking him, etc. She wants to bring him back with her, although I'm not sure how we'll be able to separate him from his grandfather, Rick. Tracy just made me come in to look at them. They're both in bed asleep together, and of course, Donny is in my spot and on my pillow and now under the covers!!!
Anyway, as far as Tracy is concerned it's been steady improvement and no RSD pain! And for that we are so very grateful. I know you want to know how Judy is doing also. I wish it was as good as Tracy, but she's had some return of RSD pain in one arm. Otherwise, she's also doing well. Dr. S has her coming in for ketamine infusions to hopefully knock out the arm pain quickly, and not allow it to worsen. She had two days of infusions last week and will complete three additional days this week as of Thursday. They, the Hopkins, had been working for a long time on getting a bill passed in NJ regarding RSD as a recognized disability, which went through on Monday, January 7, 2008, so that is very good news! Judy, Bob and Linda were all there with the Governor of NJ for the signing, so that was a very important day for them. We have Judy in our prayers that all goes well for her and she's back to "no RSD pain" after this course of treatment. Certainly it was nowhere near the intensity of pre-coma, but they wanted to get rid of it right away so it could not get worse and more difficult to treat. This is a set-back for Judy, but we know she'll get through it and back to herself quickly. She has her life almost back and she's not about to give that up!!! You go girl!
There are so many stories of RSD sufferers on-line, those who haven't been as lucky as our Tracy (or Judy) and thousands of others who haven't the strength or desire to tell their stories on-line. They are the reason we have founded the Brooks Family Foundation for RSD/CRPS!!!! Thank you to all who've donated. We've received company letters for matching donations as well, and for that we are doubly grateful. But we need a lot of money if we are to facilitate research for a cure - especially for one that is easier than a coma!!! And awareness - for much sooner diagnoses is a must as well!! PLEASE HELP US TO HELP OTHERS NOT HAVE TO GO THROUGH THE TORTURE TRACY ENDURED FOR SO MANY YEARS!!! Donations can be sent to:
Brooks Family Foundation for RSD/CRPS
832 Second Street Pike - Suite 3
Richboro, PA 18954-1098
Our mission is to raise funds for awareness, research and treatment of RSD/CRPS. If you have any questions, please feel free to e-mail me at gayle.brooks@verizon.net. I will gladly answer any questions I feel capable of, or refer them to our foundation attorney. We have an IRS EIN# as a 501(c)(3) charitable organization.
Please help us if you haven't donated yet. Also, if you have anything of value to donate which can be sold, we will be happy to deal with that as well and forward you an acknowledgement to use for tax purposes. Let me know by e-mail. Any fund-raising ideas? We'll be glad to listen. We have people who've offered to help get us media attention - Now's the time. We'd like to be on Oprah, but are willing to start more locally. Please let us know. Tracy's ready to talk about her experience and we need to get the word out about others who suffer every day and are unable to get the help they need - some because they just can't get the money together or are just too weak from the effects of this horrendous syndrome to undergo the added danger of the coma. Again, we need your help!!
May you and your loved ones never have to suffer from RSD, which can develop following the most simple injury.
And if you or anyone you know does suffer from RSD/CRPS as so many do, please know that we're trying to get help for you. Don't give up!!! There is hope!
Good night and G-d bless!
Kisses to Judy, Linda and Bob. This will be the charm!
Love,
Gayle
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