Hi All,
Dave's appointment was with Dr. Graves at UCLA neurology on July 5th (which also happened to be our 22nd wedding anniversary).
Dr. Graves was great. Spent 2 hours talking with & examining Dave. Unfortunately, he said that ALS is the only explanation for Dave's condition, as no other disease causes atrophy of the tongue like Dave has.
I am a really data-centric person, so it was so interesting to hear a researcher talk about ALS & his patients statistics & experiences with the disease. He was not overly optimistic, but definitely has seen cases of very slow progression & in one case over 30+ years almost no progression. He encouraged Dave to work with our local neuro (we live in Colorado), look into speech augmentation devices (pen and paper for now ). Also to start Rilutek & to apply for participation in research studies.
It was not the outcome we had hoped for, but there is some relief in having another opinion that jibes with previous neuros. Dr. Graves was much better at explaining things than the others that Dave has seen.
Participation in research studies does not guarantee anything at all, but at least it will feel like Dave can do SOMETHING to try to fight this disease, and at the same time maybe ultimately help other people who have it.
Meanwhile, only Dave's speech is noticably affected (has started writing stuff down especially when he is tired). He is in the middle remodeling one of our bathrooms & is tiling this week which is no small feat.
Dave goes to see the local neuro next week.
Thanks to all for your input prior to our latest neuro visit. Much appreciated.
Cheers,
Lisa
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Dave's appointment was with Dr. Graves at UCLA neurology on July 5th (which also happened to be our 22nd wedding anniversary).
Dr. Graves was great. Spent 2 hours talking with & examining Dave. Unfortunately, he said that ALS is the only explanation for Dave's condition, as no other disease causes atrophy of the tongue like Dave has.
I am a really data-centric person, so it was so interesting to hear a researcher talk about ALS & his patients statistics & experiences with the disease. He was not overly optimistic, but definitely has seen cases of very slow progression & in one case over 30+ years almost no progression. He encouraged Dave to work with our local neuro (we live in Colorado), look into speech augmentation devices (pen and paper for now ). Also to start Rilutek & to apply for participation in research studies.
It was not the outcome we had hoped for, but there is some relief in having another opinion that jibes with previous neuros. Dr. Graves was much better at explaining things than the others that Dave has seen.
Participation in research studies does not guarantee anything at all, but at least it will feel like Dave can do SOMETHING to try to fight this disease, and at the same time maybe ultimately help other people who have it.
Meanwhile, only Dave's speech is noticably affected (has started writing stuff down especially when he is tired). He is in the middle remodeling one of our bathrooms & is tiling this week which is no small feat.
Dave goes to see the local neuro next week.
Thanks to all for your input prior to our latest neuro visit. Much appreciated.
Cheers,
Lisa
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