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Hello, My father had his PEG inserted recently (January 4th). After the surgery, and in these last days, he has been suffering from recurring headaches. He is now vomiting his meals and suffering from migraine-like symptoms. As we wait for the doctor, I was wondering if anyone had experience...

Hello everyone, After some years with UMN dominant ALS, doctors finally suggested my dad to get a PEG. Apparently, they found out he is no longer swallowing properly and there are food remains. He took it quite badly, since he really loves eating. He has not lost any weight since he began with...

Hello, Today my dad (PLS /UMND) was being massaged by the physical therapist and she noticed that he had an inflammed tendon. Unfortunately, we will not be able to go to the doctor until next week. Any advise as to how to deal with it in the meantime? He says that it hurts quite a lot. It's in...

Dear everyone, I hope this email finds you well, given the circumstances. I posted a few messages some years ago, when my father was first navigating the path to diagnosis and the immediate aftermath. I have always been amazed at the kindness and helpful information that I found here. If you...

Hello, Some of you might remember my father´s case: early diagnosis of Parkinsons revoked, he was on the ALS / PLS limbo for a long time. Afer a second opinion now confirmed by our primary neurologist, it appears my father has a very strange variant of Motor Neuron Disease called Mills...

Hello! Back in this forum after a few months! My dad has been steady: UMN signs progressing and no LMN signs as of yet. I am writing to you to ask for advice regarding the management of Pseudo-Bulbar Affect. My dad´s outbursts of laughing and crying have been getting worse and it is starting...

Hello, Does anyone know a good model of disease progression based on ALSFRS-R score? My father was told his score was 38/48, after 2.5/3 years since symptom onset. Could anyone point me to a good resource where rates of progression are plotted?

Hey everyone! Today my father had a breathing exam and, as it has been the case since he is testes, the results were perfect. In the past two years and a half since first measured, there has been no observable decline as measured by any indication of respiratory function. Given these results...

Here is an interesting video: https://vimeo.com/278845845

Hello, We are wondering whether to do genetic testing... There have been no more known cases of ALS in our family, apart from my recently diagnosed father. However, a cousin of my dad had MSA and another cousin is now being seen by neurologists with suspected Parkinson's disease. On the other...