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Amyotrophic Lateral Sclerosis (ALS) Message Board

Amyotrophic Lateral Sclerosis (ALS) Board Index

I dont know where to start. I'm just glad that i finally have somewhere that I can vent about what's going on with my mother.

My mom was diagnosed on January 17, 2010. 7-8 months after experiencing a slur (which we initially thought was a stroke and prompted us to take her to testing). All doctor visits initially concluded that she was in the early stages of Dementia. We settled for this until her weight loss just got progressively worst and her speech got really bad. We took her to Miami and saw a great neuro who diagnosed ALS. Things have gotten progressively worse. Se has recently had to put in a feeding tube as she can barely swallow her own saliva. That was an episode in itself as that happened on a trip where we only thought she was being evaluated for a clinical trial/

I've seen my mother go from a runner and the life of the party to not being able to communicate what she wants and barely 108 or so lbs. She can still walk though; but that may not be for long as I've notice she has started to have a sway and her limbs are getting consistently weaker.

I can tell my mother is really depressed. She knows everything that is going on around and her and i feel her pain when she sees someone (family included) feeling sorry for her. I am really sad myself, I am the only girl of five children, and I feel like it's my job to do everything. Things are happening so fast. My mother used to take care of my now 2 year old son, but now she can barley give him a kiss. Some days I'm so depressed i literally cry spontaneously.

I don't live in the US, so alot of services (Medicaid and so forth) aren't available to me. I dread the day she needs a ventilator. Does anyone know where i can look from now for when the time comes? Any communication alternatives that i can try?

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