Recent content by Emanol

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    Mills syndrome

    Thank you all!
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    Mills syndrome

    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...
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    PBA

    Thank you. I´ll ask the neurologist when we have the next appointment.
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    PBA

    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...
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    Predictive model based on ALSFRS-R score?

    It's tricky. He has no signs of LMN involvement at the clinical level, but a third EMG revealed slight if mild abnormalities (fasciculations in several non-bulbar regions, albeit without active denervation)
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    Predictive model based on ALSFRS-R score?

    Glad to know! The thing is my dad does not really like to get help... he still dresses himself, cooks, sets the table, etc. I am glad he is still able to, but sometimes I also wonder if he should not save his energy for something more meaningful than the daily chores. Since he has had no...
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    Predictive model based on ALSFRS-R score?

    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?
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    Breathing regular checks

    My dad is completely open for an early implementation of BiPAP and would definitively choose it if it were needed or recommended. However, so far he has not complained about breathing and his FVC remains above 100% (other measures are good too). I guess we will wait and see how it goes. We...
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    Breathing regular checks

    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...
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    CALS Roll Call Continued

    I haven't been here for a while. This past week the electric wheelchair for my dad arrived. While he is still able to walk at home, we hope it will help to make him more independent when being outdoors. On the other hand, we went for a breathing revision and his breathing remains completely...
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    Daignosed w. ALS, Then PLS

    Welcome! My father is also on the PLS/ALS limbo, also with ambiguous EMGs. How has been your progression? Symptoms?
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    Genetic testing

    Thanks for the help! So, bearing in mind that both of his cousins with Parkinsonism / MSA are the children of healthy parents well into their 80s, would that rule out c9? Are there other mutations that cause ALS and that can be passed down even if they are not expressed by the parent? I just...
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    On a PLS rating-scale and clinical trials

    Here is an interesting video: https://vimeo.com/278845845
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    CALS Roll Call Continued

    First Wednesday checking in... Dad has been fine. He got an electric bike for himself and has been pedaling well. He is also enjoying physical therapy. Gait is getting worse little by little, the process speeding up over a very cold winter -is it normal that it gets worse at night and is...
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    Genetic testing

    Thank you Nikki and affected. I have been reading more about c9 and I guess it is unlikely that is the mutation responsible for his disease. After all, the two people that developed MSA / Atypical Parkinsonism in our family are the children of healthy parents who are still alive well into...
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