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    Lung function question.

    If your husband is not receiving care at a multidisciplinary ALS clinic, I would strongly encourage him to do so. During each visit to the clinic, his lung function would be evaluated by a respiratory specialist who understands how ALS affects his lungs. Unfortunately, many pulmonologists do not...
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    Why do I feel so bad?

    Before I was diagnosed with ALS, I avoided sugar, corn syrup, processed foods, fast food, etc. Since then I have decided that if I want to eat something, I eat it. What's the worst that can happen? Obviously, I avoid anything that might make me sick, but other than that, anything goes. I so...
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    Why do I feel so bad?

    I would recommend having your pulmonologist conduct your breathing tests in the supine position. Diaphragm weakening may first manifest itself while you are sleeping, and can cause the morning symptoms you describe. I was respiratory onset, and my initial symptoms were very similar to what you...
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    Platform trial starting

    Dr. Cudkowicz, from MGH, spoke at the Florida ALSA Hope and Help symposium this past weekend, and addressed this new trial platform in detail. There is also an in depth webinar on the ALS TDI website that explains exactly how this approach should help expedite clinical trials.
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    Hopefully this may help ALS

    There is a clinical trial recruiting participants now for Transcranial Magnetic Stimulation. However, the goal is to help treat apathy and depression in PALS, and not the disease itself.
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    Signe, I have some cervical spine issues that can cause numbness and tingling in my hands from time to time. I agree with the others that your PT should be able to address this issue.
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    So, I have started a new chapter in my ALS journey this month. Had a power wheelchair delivered a few weeks ago, and, although I was initially resistant to the idea, it has greatly improved my quality of life by allowing me to get out of the house much more. In fact, I had family in town this...
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    N Nona, So sorry to hear about your cat. My little dog never leaves my side and provides more comfort than I can explain.
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    2019 Spring trip to Yellowstone

    My wife is taking me on a bucket list trip to Yellowstone, Grand Teton and Glacier in two weeks. I have wanted to visit these parks for many years, but waited too long and now I can no longer walk. We have been a little anxious/nervous about how the trip will go with me in a wheelchair, but your...
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    Phase 1 trial enrolling soon

    I am screening for the Phase 1 trial of BIIB100 tomorrow. Obviously, I'm not expecting any results from a one dose trial, but it feels like a positive step for me.