The Progression of ALS: Resources across the Continuum | ALS Tool Kit

We, at the multidisciplinary clinic, understand the challenges of a diagnosis like ALS. We seek to provide you with an overview of common questions about the process of living with ALS and death and dying. We discuss resources to help you across the continuum including understanding palliative and hospice care.

[@tranquilizingreiki1659]

I just started sinemet with good response, but have weakness, apathy and uncontrollable crying also. My Neuro has done an EEG and I'm doing my MRI tomorrow. I started blinking again with the sinimet but to think someone gets to where they can't even move their eyes, no ability to communicate. That's heavy, y'all.

[@tranquilizingreiki1659]

My MRI showed I was having an acute or recent subacute stroke. I also had an old infarct that the crying was coming from. I have Parkinsonism with dystonia from Lyme disease that took 12 years to diagnose.

[@nonyabusiness3859]

Does bipap machines incorporate moisture? Mine does not. I wake up with a dry-bone respiratory system which exasperates my uncomfortableness. Moisture is key for comfort.

[@keithhutchins8803]

Yes mine has a humidifier hooked to it.

[@nonyabusiness3859]

We shouldn’t be having these conversations. There needs to be government funding towards ALS and alternative treatments. You have drugs that suppress HIV, cancer treatments and can send men to space, but can’t manage ALS? How about surveying ALS patients with their activities over the past years leading up to diagnosis? There has to be a common denominator and I don’t feel that has been researched or established.

[@orcotuna7]

I was diagnose last week, but the diagnose came after almost 2 years since I started having the symptoms, it started with a foot drop and then lost the right leg and it progressed to the left leg I just started using a wheelchair. the breathing issues, my diaphragm is so weak that when I laugh it hurts and cant stop laughing, shortness of breath etc. these new symptoms started about 3 months ago. from this point, I am not sure how fast it will progress

[@lydia1199]

Sorry to hear that. Do you tried groups for ALS? I think you need talk with someone. 💕

[@lydia1199]

Sorry to hear that. Do you tried groups for ALS? I think you need talk with someone. 💕

[@annamazhara5650]

Hi. How are you now?