TedH5
Very helpful member
- Joined
- May 17, 2010
- Messages
- 1,142
- Reason
- PALS
- Diagnosis
- 08/2010
- Country
- US
- State
- GA
- City
- McDonough
Let me first apologize. I know that I have not been on the forum over the last 3 months. Not a day has gone by that I have not thought of my "forum family" and have continued to keep all of it's members in my prayers. Many have visited me on FB and asked me how I was and relayed everyone's well wishes which I truly appreciate. I hope that you will forgive my absence and welcome me back with open arms. There is a reason for my hiatus but before I get into that let me tell you a little of what I have done to help make a small difference.
* I have continued to give talks to help raise awareness for ALS, I have done about a half dozen now.
* I was asked to join the GA ALS walk committee and be the Advocacy/ Education chair.
* I have arranged the CDC who is responsible for the ALS national registry to have a tent at the upcoming Ga walk, they will have members there with lap tops and PALS will be able to register and / or learn more about the registry.
* I have worked with the National ALS Association advocacy representative out of Washington D.C. to write letters to GA's Senators in support of funding ALS research. These letters will be at the walk and will be under the same tent as the CDC, for everyone in attendance to sign.
* After the walk the Executive Director of the GA ALS association and I are planning on hand delivering these letters to our Senators.
* Last night, I am honored and proud to say, I was elected to the GA ALS association Board of Directors. I am looking forward to contributing and ensuring we are meeting the needs of ALS patients and their families.
Now on to the story of hope...the reason I stayed away is I pride myself on my integrity. I did not feel I could be on here and not be honest with you about what was going on with me. As most of you know I was patient #11 in Emory's stem cell trial. I was hoping that the CNN article they are writing would come out today but from the follow up questions it sounds as though it will be out tomorrow. So I will do my best to explain it. Some of you may have seen the press release from Neuralstem today talking high level about the Emory stem cell study. Well and it is with great trepidation and a large amount of guilt that I share this with you. In their press release they state that 8 people showed either no deterioration or got better. Well I am the one that got better. My understanding is that the other 7 stayed status quo. Keep in mind their were 12 patients. Two passed away and two deteriorated. I on the other hand received the ultimate blessing and gift from God. I showed improvement on all my tests. I no longer use a cane, my leg strength, hand strength, MIP diaphram test, FRS scale and every other test they performed all have shown improvement. It is not a cure, as a matter of fact Dr. Glass was so shocked by my improvements that he re - diagnosed me to ensure they had not made a mistake including another EMG and he confirmed ALS. As he said if I were to see him for the first time today he would diagnose me with ALS. Obviously he has been shocked and amazed and everytime I see him I think he expects to see me back with a cane but is happy that I am not using one. When I ask him questions about what to expect he just smiles and laughs and says there is no date, I do not know, we are learning from you.
The best way I can describe is that I feel like I did when I first felt the onset of my symptoms two years ago. They are bothersome and make me do things in moderation but not nearly as dehibilatating as they were prior to the surgery. I have no idea how long or short this gift will last. I have not shown major deterioration yet. I sometimes worry that when I wake up all the progress will be gone. I do know this regardless of how long this gift lasts, I am determined to use it for good. As I have told the Dr's, nurses, Richard Garr the CEO from Neuralstem and the reproter from CNN that this is not about me. It is about the need for more funding, more research, more and faster trials and hopefully sharing a sliver of hope with the ALS community.
Please remember this is not a cure, I still have ALS, the sample group is small, 12 patients, 2 passed away, one from a heart condition, one from respiratory failure from his ALS and 2 people continued to decline. As far as drastic improvement I appear to be the only one thus far. A lot of research and more studies need to be done, but they are on the right track.
In the meantime I committ to all PALS & CALS to fight for ultimately everyone to have the ability to share in this gift. I hope to make you all proud and I refuse to be selfish with this gift.
I appreciate everyone's prayers and support and hope to be a good advocate for the ALS community.
I will post the CNN story when it comes out.
You are all in my prayers, continue to stay strong and keep the faith. It feels very good to be sharing this with everyone and to be back home on the forum.
I'm sure that many of you will have questions just remember, not a cure, a small sample size to truly draw conclusions, 7 people had their symptoms either cease or slow down and then there is me. Hopefully this is the start of ultimately being able to make a difference.
* I have continued to give talks to help raise awareness for ALS, I have done about a half dozen now.
* I was asked to join the GA ALS walk committee and be the Advocacy/ Education chair.
* I have arranged the CDC who is responsible for the ALS national registry to have a tent at the upcoming Ga walk, they will have members there with lap tops and PALS will be able to register and / or learn more about the registry.
* I have worked with the National ALS Association advocacy representative out of Washington D.C. to write letters to GA's Senators in support of funding ALS research. These letters will be at the walk and will be under the same tent as the CDC, for everyone in attendance to sign.
* After the walk the Executive Director of the GA ALS association and I are planning on hand delivering these letters to our Senators.
* Last night, I am honored and proud to say, I was elected to the GA ALS association Board of Directors. I am looking forward to contributing and ensuring we are meeting the needs of ALS patients and their families.
Now on to the story of hope...the reason I stayed away is I pride myself on my integrity. I did not feel I could be on here and not be honest with you about what was going on with me. As most of you know I was patient #11 in Emory's stem cell trial. I was hoping that the CNN article they are writing would come out today but from the follow up questions it sounds as though it will be out tomorrow. So I will do my best to explain it. Some of you may have seen the press release from Neuralstem today talking high level about the Emory stem cell study. Well and it is with great trepidation and a large amount of guilt that I share this with you. In their press release they state that 8 people showed either no deterioration or got better. Well I am the one that got better. My understanding is that the other 7 stayed status quo. Keep in mind their were 12 patients. Two passed away and two deteriorated. I on the other hand received the ultimate blessing and gift from God. I showed improvement on all my tests. I no longer use a cane, my leg strength, hand strength, MIP diaphram test, FRS scale and every other test they performed all have shown improvement. It is not a cure, as a matter of fact Dr. Glass was so shocked by my improvements that he re - diagnosed me to ensure they had not made a mistake including another EMG and he confirmed ALS. As he said if I were to see him for the first time today he would diagnose me with ALS. Obviously he has been shocked and amazed and everytime I see him I think he expects to see me back with a cane but is happy that I am not using one. When I ask him questions about what to expect he just smiles and laughs and says there is no date, I do not know, we are learning from you.
The best way I can describe is that I feel like I did when I first felt the onset of my symptoms two years ago. They are bothersome and make me do things in moderation but not nearly as dehibilatating as they were prior to the surgery. I have no idea how long or short this gift will last. I have not shown major deterioration yet. I sometimes worry that when I wake up all the progress will be gone. I do know this regardless of how long this gift lasts, I am determined to use it for good. As I have told the Dr's, nurses, Richard Garr the CEO from Neuralstem and the reproter from CNN that this is not about me. It is about the need for more funding, more research, more and faster trials and hopefully sharing a sliver of hope with the ALS community.
Please remember this is not a cure, I still have ALS, the sample group is small, 12 patients, 2 passed away, one from a heart condition, one from respiratory failure from his ALS and 2 people continued to decline. As far as drastic improvement I appear to be the only one thus far. A lot of research and more studies need to be done, but they are on the right track.
In the meantime I committ to all PALS & CALS to fight for ultimately everyone to have the ability to share in this gift. I hope to make you all proud and I refuse to be selfish with this gift.
I appreciate everyone's prayers and support and hope to be a good advocate for the ALS community.
I will post the CNN story when it comes out.
You are all in my prayers, continue to stay strong and keep the faith. It feels very good to be sharing this with everyone and to be back home on the forum.
I'm sure that many of you will have questions just remember, not a cure, a small sample size to truly draw conclusions, 7 people had their symptoms either cease or slow down and then there is me. Hopefully this is the start of ultimately being able to make a difference.
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