@bgryfe
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Dr. Bernie Gryfe replied to the topic ALS Gene in the forum Diagnosis Information and General Questions 1 year ago
Would really like to join the group. What do I have to do??
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Dr. Bernie Gryfe started the topic ALS Gene in the forum Diagnosis Information and General Questions 1 year ago
My wife’s brother passed away from ALS at the age of 61
My wife passed away from ALS at 74
My son has been advised he carries the gene. Is he definitely a candidate for ALS, or what are his chances of missing the disease.
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Dr. Bernie Gryfe replied to the topic Advice for excess saliva in the forum Living With ALS 1 year, 10 months ago
My wife has Atropine drops, a Scopalamine patch, had a Glycopyrate port in her chest. The only thing that works a bit is the Atropine drops. We have this strong suction machine to draw out the saliva in her lungs that I use about 3 times a day. She claims this helps. As she is non-verbal it is often difficult the understand her.
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Dr. Bernie Gryfe posted a new activity comment 1 year, 10 months ago
My wife has Bulbar ALS C90RF72 which appears to be resistant to many of the meds. She is on daily Rilozole and 10 days of Radicava with 18 days off. Went to the hospital for impressions to fabricate a mask for the radiation protection. Unfortunately her dementia has progressed as has the paralysis in her right hand so writing has become…[Read more]
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Dr. Bernie Gryfe posted a new activity comment 1 year, 10 months ago
My wife has excesss saliva and her MD has suggested irradiating the Parotid glands to cut down the saliva. She no longer eats orally and is fed through a G tube, so the mouth is no longer being used for ingestion. the sublingual glands will not be touched. Do you have anyone with experience concerning this treatment.
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I’m not sure, but I will post it for you tomorrow here in the forum.
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My wife has Bulbar ALS C90RF72 which appears to be resistant to many of the meds. She is on daily Rilozole and 10 days of Radicava with 18 days off. Went to the hospital for impressions to fabricate a mask for the radiation protection. Unfortunately her dementia has progressed as has the paralysis in her right hand so writing has become…[Read more]
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I hope the MD visit to your home will be helpful for your wife.
I have posted your question in the forum, and you can follow or add comments here: https://alsnewstoday.com/forums/forums/topic/advice-for-excess-saliva/
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Dr. Bernie Gryfe became a registered member 1 year, 10 months ago
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Hello Dr. Gryfe,
Welcome to the forum! I am one of the forum moderators and a person living with ALS: I was diagnosed in 2010.
If there is anything specific you would like to see discussed on the forum, feel free to post a new topic in any of our forums or jump in on an existing topic. You can also search for past topics or discussions by typing…[Read more]
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My wife has excesss saliva and her MD has suggested irradiating the Parotid glands to cut down the saliva. She no longer eats orally and is fed through a G tube, so the mouth is no longer being used for ingestion. the sublingual glands will not be touched. Do you have anyone with experience concerning this treatment.
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I’m not sure, but I will post it for you tomorrow here in the forum.
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My wife has Bulbar ALS C90RF72 which appears to be resistant to many of the meds. She is on daily Rilozole and 10 days of Radicava with 18 days off. Went to the hospital for impressions to fabricate a mask for the radiation protection. Unfortunately her dementia has progressed as has the paralysis in her right hand so writing has become…[Read more]
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I hope the MD visit to your home will be helpful for your wife.
I have posted your question in the forum, and you can follow or add comments here: https://alsnewstoday.com/forums/forums/topic/advice-for-excess-saliva/
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Hello Dr. Bernie, and welcome to the ALS forum. I’m Amanda, one of the co-moderators of the forum. We are happy you have joined our online community. You will find that the ALS forum is made up of people with different associations with ALS. My family has an extensive history of ALS and we know that we have a genetic mutation in the SOD1 gene. I…[Read more]
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I hope the MD visit to your home will be helpful for your wife.
I have posted your question in the forum, and you can follow or add comments here: https://alsnewstoday.com/forums/forums/topic/advice-for-excess-saliva/