Guest guest Posted December 30, 2005 Report Share Posted December 30, 2005 Maureen, As far as I can tell, Zsolt was never actually diagnosed with PLS. He joined PLS-Friends on November 1, 2000 (you can go to archive message #6506 to read his introduction of himself and his condition). In his introduction he stated: " ...the neurologist suggested I might have PLS. This was because of my pronounced upper motor neurone symptoms: dysarthria, hyper-reflexia, spasticity, weakness in legs and hands, and bulbar involvement affecting my face, throat and thorax. My EMG's continue to show normal, and there is minimal lower motor neurone involvement. My symptoms and condition continue to progress, yet the doctors are reluctant to give a definite diagnosis, wanting instead to wait and see how the progression plays out. " In the biography which Fant wrote upon Zsolt's death he said: " In the late 90s, his health began to deteriorate and he found himself loosing coordination and unable to balance. He was eventually diagnosed with a degenerative neuropathy which was tough to deal with, not having insurance. " Zsolt joined PLS-Friends looking for someone else who, like him, had very fast progression of their disease. We e-mailed each other because at one point in time (a year and a half after my first symptoms) my progression was very fast for a little over 2 years. He and I had very similar symptoms with the exception of breathing problems and I was using a walker and hadn't progressed to a wheelchair. However, from the fall of 1998 until I joined PLS-Friends in 2000 my progression had slowed down tremendously -- didn't stop, just slowed down. Zsolt's progression was relentless, however. When I met with him the first time in June 2001 he could only whisper, and his fingers were very spastic so that writing on a pad was difficult and time consuming. We met again a year later and he had lost all ability to speak, was using a laptop computer with voice software to communicate with, and was getting a power wheelchair. It was very obvious that his primary problems were focused on his need to conserve energy for breathing. Speaking was no longer possible and swallowing had become a challenge. Still, he never complained and he did things others of us wouldn't think of doing, even without breathing problems -- such as ski diving, & skiing with the adaptive ski program. He was a truly amazing person who took extreme joy out of living every single day of his life. He never confided in me that he had received a diagnoses, if he did. I do know he went to NIH for their study in September 2001, but was never asked to go back. Zsolt was a very private person. You could ask him anything, but he would answer only those questions he wished to answer. I respected that. Lyndal Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 30, 2005 Report Share Posted December 30, 2005 Maureen, As far as I can tell, Zsolt was never actually diagnosed with PLS. He joined PLS-Friends on November 1, 2000 (you can go to archive message #6506 to read his introduction of himself and his condition). In his introduction he stated: " ...the neurologist suggested I might have PLS. This was because of my pronounced upper motor neurone symptoms: dysarthria, hyper-reflexia, spasticity, weakness in legs and hands, and bulbar involvement affecting my face, throat and thorax. My EMG's continue to show normal, and there is minimal lower motor neurone involvement. My symptoms and condition continue to progress, yet the doctors are reluctant to give a definite diagnosis, wanting instead to wait and see how the progression plays out. " In the biography which Fant wrote upon Zsolt's death he said: " In the late 90s, his health began to deteriorate and he found himself loosing coordination and unable to balance. He was eventually diagnosed with a degenerative neuropathy which was tough to deal with, not having insurance. " Zsolt joined PLS-Friends looking for someone else who, like him, had very fast progression of their disease. We e-mailed each other because at one point in time (a year and a half after my first symptoms) my progression was very fast for a little over 2 years. He and I had very similar symptoms with the exception of breathing problems and I was using a walker and hadn't progressed to a wheelchair. However, from the fall of 1998 until I joined PLS-Friends in 2000 my progression had slowed down tremendously -- didn't stop, just slowed down. Zsolt's progression was relentless, however. When I met with him the first time in June 2001 he could only whisper, and his fingers were very spastic so that writing on a pad was difficult and time consuming. We met again a year later and he had lost all ability to speak, was using a laptop computer with voice software to communicate with, and was getting a power wheelchair. It was very obvious that his primary problems were focused on his need to conserve energy for breathing. Speaking was no longer possible and swallowing had become a challenge. Still, he never complained and he did things others of us wouldn't think of doing, even without breathing problems -- such as ski diving, & skiing with the adaptive ski program. He was a truly amazing person who took extreme joy out of living every single day of his life. He never confided in me that he had received a diagnoses, if he did. I do know he went to NIH for their study in September 2001, but was never asked to go back. Zsolt was a very private person. You could ask him anything, but he would answer only those questions he wished to answer. I respected that. Lyndal Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 30, 2005 Report Share Posted December 30, 2005 Maureen, As far as I can tell, Zsolt was never actually diagnosed with PLS. He joined PLS-Friends on November 1, 2000 (you can go to archive message #6506 to read his introduction of himself and his condition). In his introduction he stated: " ...the neurologist suggested I might have PLS. This was because of my pronounced upper motor neurone symptoms: dysarthria, hyper-reflexia, spasticity, weakness in legs and hands, and bulbar involvement affecting my face, throat and thorax. My EMG's continue to show normal, and there is minimal lower motor neurone involvement. My symptoms and condition continue to progress, yet the doctors are reluctant to give a definite diagnosis, wanting instead to wait and see how the progression plays out. " In the biography which Fant wrote upon Zsolt's death he said: " In the late 90s, his health began to deteriorate and he found himself loosing coordination and unable to balance. He was eventually diagnosed with a degenerative neuropathy which was tough to deal with, not having insurance. " Zsolt joined PLS-Friends looking for someone else who, like him, had very fast progression of their disease. We e-mailed each other because at one point in time (a year and a half after my first symptoms) my progression was very fast for a little over 2 years. He and I had very similar symptoms with the exception of breathing problems and I was using a walker and hadn't progressed to a wheelchair. However, from the fall of 1998 until I joined PLS-Friends in 2000 my progression had slowed down tremendously -- didn't stop, just slowed down. Zsolt's progression was relentless, however. When I met with him the first time in June 2001 he could only whisper, and his fingers were very spastic so that writing on a pad was difficult and time consuming. We met again a year later and he had lost all ability to speak, was using a laptop computer with voice software to communicate with, and was getting a power wheelchair. It was very obvious that his primary problems were focused on his need to conserve energy for breathing. Speaking was no longer possible and swallowing had become a challenge. Still, he never complained and he did things others of us wouldn't think of doing, even without breathing problems -- such as ski diving, & skiing with the adaptive ski program. He was a truly amazing person who took extreme joy out of living every single day of his life. He never confided in me that he had received a diagnoses, if he did. I do know he went to NIH for their study in September 2001, but was never asked to go back. Zsolt was a very private person. You could ask him anything, but he would answer only those questions he wished to answer. I respected that. Lyndal Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 30, 2005 Report Share Posted December 30, 2005 BIG TYPO... That should have been SKY DIVING, not ski diving. How do you ski dive anyway? Sounds like something I would do with my PLS having never learned to ski in the first place. And yes, I live in ski country. Go figure. Lyndal > > Maureen, > > Still, he never complained and he did things others of > us wouldn't think of doing, even without breathing problems -- such as ski > diving, & skiing with the adaptive ski program. He was a truly amazing person > who took extreme joy out of living every single day of his life. > > Lyndal Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 30, 2005 Report Share Posted December 30, 2005 BIG TYPO... That should have been SKY DIVING, not ski diving. How do you ski dive anyway? Sounds like something I would do with my PLS having never learned to ski in the first place. And yes, I live in ski country. Go figure. Lyndal > > Maureen, > > Still, he never complained and he did things others of > us wouldn't think of doing, even without breathing problems -- such as ski > diving, & skiing with the adaptive ski program. He was a truly amazing person > who took extreme joy out of living every single day of his life. > > Lyndal Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 30, 2005 Report Share Posted December 30, 2005 BIG TYPO... That should have been SKY DIVING, not ski diving. How do you ski dive anyway? Sounds like something I would do with my PLS having never learned to ski in the first place. And yes, I live in ski country. Go figure. Lyndal > > Maureen, > > Still, he never complained and he did things others of > us wouldn't think of doing, even without breathing problems -- such as ski > diving, & skiing with the adaptive ski program. He was a truly amazing person > who took extreme joy out of living every single day of his life. > > Lyndal Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 30, 2005 Report Share Posted December 30, 2005 Lyndal thats ok I knew what you meant. LOL. Living in ski country, you obviously have skiing on your mind. I wish I was there right now as it is way too hot in Sydney for me. We are in the middle of a terrible heatwave. I know that you mention that Zsolt never said what he had but then it sounds like he was never diagnosed. I also have not been officially diagnosed as yet and thats after 9 years of seeing many neurologists. They also appear to have the wait and see approach. Which now in view of Zsolts situation makes me feel scared. I was given a working diagnosis of recessive HSP with startle myoclonus but the neuro now doubts that and is talking PLS. Fortunately my progression has been very slow and apart my speech deteriorating a little 3 years ago, I believe I have been stable for 6 years now. Knock on wood, it stays like this. Thanks Lyndal for taking the time to write to me. Maureen in Oz > > Maureen, > > As far as I can tell, Zsolt was never actually diagnosed with PLS. He joined > PLS-Friends on November 1, 2000 (you can go to archive message #6506 to read > his introduction of himself and his condition). > > In his introduction he stated: " ...the neurologist suggested I might have > PLS. This was because of my pronounced upper motor neurone symptoms: dysarthria, > hyper-reflexia, spasticity, weakness in legs and hands, and bulbar > involvement affecting my face, throat and thorax. My EMG's continue to show normal, > and there is minimal lower motor neurone involvement. My symptoms and condition > continue to progress, yet the doctors are reluctant to give a definite > diagnosis, wanting instead to wait and see how the progression plays out. " > > In the biography which Fant wrote upon Zsolt's death he said: " In the > late 90s, his health began to deteriorate and he found himself loosing > coordination and unable to balance. He was eventually diagnosed with a > degenerative neuropathy which was tough to deal with, not having insurance. " > > Zsolt joined PLS-Friends looking for someone else who, like him, had very > fast progression of their disease. We e-mailed each other because at one point > in time (a year and a half after my first symptoms) my progression was very > fast for a little over 2 years. He and I had very similar symptoms with the > exception of breathing problems and I was using a walker and hadn't progressed > to a wheelchair. However, from the fall of 1998 until I joined PLS- Friends in > 2000 my progression had slowed down tremendously -- didn't stop, just slowed > down. > > Zsolt's progression was relentless, however. When I met with him the first > time in June 2001 he could only whisper, and his fingers were very spastic so > that writing on a pad was difficult and time consuming. We met again a year > later and he had lost all ability to speak, was using a laptop computer with > voice software to communicate with, and was getting a power wheelchair. > > It was very obvious that his primary problems were focused on his need to > conserve energy for breathing. Speaking was no longer possible and swallowing > had become a challenge. Still, he never complained and he did things others of > us wouldn't think of doing, even without breathing problems -- such as ski > diving, & skiing with the adaptive ski program. He was a truly amazing person > who took extreme joy out of living every single day of his life. > > He never confided in me that he had received a diagnoses, if he did. I do > know he went to NIH for their study in September 2001, but was never asked to > go back. Zsolt was a very private person. You could ask him anything, but he > would answer only those questions he wished to answer. I respected that. > > Lyndal > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 30, 2005 Report Share Posted December 30, 2005 Lyndal thats ok I knew what you meant. LOL. Living in ski country, you obviously have skiing on your mind. I wish I was there right now as it is way too hot in Sydney for me. We are in the middle of a terrible heatwave. I know that you mention that Zsolt never said what he had but then it sounds like he was never diagnosed. I also have not been officially diagnosed as yet and thats after 9 years of seeing many neurologists. They also appear to have the wait and see approach. Which now in view of Zsolts situation makes me feel scared. I was given a working diagnosis of recessive HSP with startle myoclonus but the neuro now doubts that and is talking PLS. Fortunately my progression has been very slow and apart my speech deteriorating a little 3 years ago, I believe I have been stable for 6 years now. Knock on wood, it stays like this. Thanks Lyndal for taking the time to write to me. Maureen in Oz > > Maureen, > > As far as I can tell, Zsolt was never actually diagnosed with PLS. He joined > PLS-Friends on November 1, 2000 (you can go to archive message #6506 to read > his introduction of himself and his condition). > > In his introduction he stated: " ...the neurologist suggested I might have > PLS. This was because of my pronounced upper motor neurone symptoms: dysarthria, > hyper-reflexia, spasticity, weakness in legs and hands, and bulbar > involvement affecting my face, throat and thorax. My EMG's continue to show normal, > and there is minimal lower motor neurone involvement. My symptoms and condition > continue to progress, yet the doctors are reluctant to give a definite > diagnosis, wanting instead to wait and see how the progression plays out. " > > In the biography which Fant wrote upon Zsolt's death he said: " In the > late 90s, his health began to deteriorate and he found himself loosing > coordination and unable to balance. He was eventually diagnosed with a > degenerative neuropathy which was tough to deal with, not having insurance. " > > Zsolt joined PLS-Friends looking for someone else who, like him, had very > fast progression of their disease. We e-mailed each other because at one point > in time (a year and a half after my first symptoms) my progression was very > fast for a little over 2 years. He and I had very similar symptoms with the > exception of breathing problems and I was using a walker and hadn't progressed > to a wheelchair. However, from the fall of 1998 until I joined PLS- Friends in > 2000 my progression had slowed down tremendously -- didn't stop, just slowed > down. > > Zsolt's progression was relentless, however. When I met with him the first > time in June 2001 he could only whisper, and his fingers were very spastic so > that writing on a pad was difficult and time consuming. We met again a year > later and he had lost all ability to speak, was using a laptop computer with > voice software to communicate with, and was getting a power wheelchair. > > It was very obvious that his primary problems were focused on his need to > conserve energy for breathing. Speaking was no longer possible and swallowing > had become a challenge. Still, he never complained and he did things others of > us wouldn't think of doing, even without breathing problems -- such as ski > diving, & skiing with the adaptive ski program. He was a truly amazing person > who took extreme joy out of living every single day of his life. > > He never confided in me that he had received a diagnoses, if he did. I do > know he went to NIH for their study in September 2001, but was never asked to > go back. Zsolt was a very private person. You could ask him anything, but he > would answer only those questions he wished to answer. I respected that. > > Lyndal > > > Quote Link to comment Share on other sites More sharing options...
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