My Husband is so appreciative of your willingness to share your information and resources. He has read everything you've shared with him and he is very grateful.
Here's an email he just sent to David, who posted his story about CMT. I thought this was something you might all like reading.
Ed has been a big supporter of EmpowHer, but he had no idea the power of what we have created here with our strong and ever growing community. He now knows how powerful our site is. What all of you have said to him has been so helpful. He does not feel alone anymore. He feels like he belongs to a wonderful network of people who share his condition from all around the world. It's very comforting and healing for him to know that he is not alone. Thank you for giving him that sense of belonging and validation. That's what we all hope to have as we go through our own health challenges.
Dear David,
I'm emailing you on behalf of my husband, Ed. We are sitting here in our kitchen in Phoenix, Arizona. We are so thankful to you for sharing your story and resources with us. We're still trying to decide whether or not Ed really does have CMT. He has your wonderful persistence and zest for life. He asked that I email you to thank you and to tell you a little bit more about what happened to him. And to ask you if you have any of the same symptoms.
He's sitting here dictating this email to me. He's plenty able to do this himself but he says I type faster then he does. So here goes....
I'm 78 years young and have been active and healthy my entire life. Sports has been a big part of my life (Team USA and Olympic Team Hockey) baseball as well as tennis. The weakness in my legs occurred in 1995 after having prostate surgery. The symptoms increased after contracting a staph infection in my lower spine after a back operation. At this time, I have difficulty standing up at cocktail parties and it's very difficult to walk any distances. Leg fatigue and leg weakness seem to be the two main symptoms I have.
Like you, I have been swimming every day for the past six years. I believe it's helped me be active and stay fit. I still go to my office every day and we continue to travel which is something I've always loved to do. I've spent my entire life working hard and taking good care of myself. It seems most of the posts my wife has received on her website don't sound like my symptoms. And a lot of the people posting were diagnosed at a fairly early age, like you. That's why I'm wondering if you have any of my symptoms? It leads me to believe that maybe, just maybe, I have something else going on with me. I do experience balance issues but that's not a major symptom for me.
I want you to know, I've been to many doctors and have found a doctor in Palo Alto that I highly respect. His name is Dr. Jeff Saal. He's a back specialist but does not do surgery...just consults on surgeries and takes much.more of a therapeutic approach. He says, if I do have CMT, he does not believe that I will ever lose my ability to walk. I trust him with my life, since he was so helpful to me when I contracted staph.
Would you mind sharing with me the name of your doctor in London? We have a daughter who lives in London and we do go see her several times a year.
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My Husband is so appreciative of your willingness to share your information and resources. He has read everything you've shared with him and he is very grateful.
Here's an email he just sent to David, who posted his story about CMT. I thought this was something you might all like reading.
Ed has been a big supporter of EmpowHer, but he had no idea the power of what we have created here with our strong and ever growing community. He now knows how powerful our site is. What all of you have said to him has been so helpful. He does not feel alone anymore. He feels like he belongs to a wonderful network of people who share his condition from all around the world. It's very comforting and healing for him to know that he is not alone. Thank you for giving him that sense of belonging and validation. That's what we all hope to have as we go through our own health challenges.
Dear David,
I'm emailing you on behalf of my husband, Ed. We are sitting here in our kitchen in Phoenix, Arizona. We are so thankful to you for sharing your story and resources with us. We're still trying to decide whether or not Ed really does have CMT. He has your wonderful persistence and zest for life. He asked that I email you to thank you and to tell you a little bit more about what happened to him. And to ask you if you have any of the same symptoms.
He's sitting here dictating this email to me. He's plenty able to do this himself but he says I type faster then he does. So here goes....
I'm 78 years young and have been active and healthy my entire life. Sports has been a big part of my life (Team USA and Olympic Team Hockey) baseball as well as tennis. The weakness in my legs occurred in 1995 after having prostate surgery. The symptoms increased after contracting a staph infection in my lower spine after a back operation. At this time, I have difficulty standing up at cocktail parties and it's very difficult to walk any distances. Leg fatigue and leg weakness seem to be the two main symptoms I have.
Like you, I have been swimming every day for the past six years. I believe it's helped me be active and stay fit. I still go to my office every day and we continue to travel which is something I've always loved to do. I've spent my entire life working hard and taking good care of myself. It seems most of the posts my wife has received on her website don't sound like my symptoms. And a lot of the people posting were diagnosed at a fairly early age, like you. That's why I'm wondering if you have any of my symptoms? It leads me to believe that maybe, just maybe, I have something else going on with me. I do experience balance issues but that's not a major symptom for me.
I want you to know, I've been to many doctors and have found a doctor in Palo Alto that I highly respect. His name is Dr. Jeff Saal. He's a back specialist but does not do surgery...just consults on surgeries and takes much.more of a therapeutic approach. He says, if I do have CMT, he does not believe that I will ever lose my ability to walk. I trust him with my life, since he was so helpful to me when I contracted staph.
Would you mind sharing with me the name of your doctor in London? We have a daughter who lives in London and we do go see her several times a year.
Thank you and warm regards,
Ed Robson
April 26, 2009 - 9:46pmThis Comment
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