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Nona- if you go to the ALSA national website they share what steps they have taken to advocate for us. I'm not anti-ALSA, but it doesn't seem like enough. Here in FL there are approximately 1300 pALS, many of whom are in desperate need of the vaccine. I would have thought that the state ALSA and...

I received my covid vaccine yesterday. No problems, no side effects. I am not yet 65, but still was able to obtain the vaccine. To all of you wanting and waiting to get vaccinated, especially those whose respiratory system is compromised, I would recommend not taking "no" for an answer, and not...

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...

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...

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...

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.

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.

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.

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...

N Nona, So sorry to hear about your cat. My little dog never leaves my side and provides more comfort than I can explain.