Recent content by Bleue

Yes, using text to speech apps on the iPad Pro without facial recognition worked well, but once eye gazing is needed, a facial recognition iPad would be best. There are more tools to be used at that point in the accessibility under switch control where you can actually use your eyes or head to...

So sorry to hear of your news. This is a great place to express yourself, chat, and to just search for anything that comes to mind. This is an amazing vault of questions and answers on nearly anything you may want to know, now and in the future. Stay strong!

I’m sorry slorenz. I lost my mom in March 2022 (diagnosed April 2021). She was a voracious reader but once she couldn’t hold her books she refused to listen to audio books. She spent her time watching her favorite television shows, streaming shows, etc.. Her favorite thing to do with me was...

I’m so sorry for your loss. I lost my mom in March. 11 months after diagnosis. I missed taking care of her, i mourn it. I miss her from before she was sick. We (albeit in a difft way) lose everything they do and also become what they lose (their voice, their arms, their legs, their...

I am so so sorry for your loss. ALS just takes and takes and takes and takes. May she rest in peace and freedom from suffering.

My mom’s bulbar ALS experience was a lot like Believer. She was put on Prozac and Xanax because she was very depressed and had severe anxiety about her diagnosis. I would say that everyone’s journey is different but reading what to expect can help-but remember it may not happen. Believer’s...

I am so sorry for your loss. There’s no way your mom was angry with you all when she passed. I’m sure she was angry at the disease. My mom was. It’s insidious and we will never understand what they went through to lose every part of themself little by little. PTSD as a CAL is real. You are...

I am so sorry. My mother was diagnosed April 2021 and passed in March 2022. I know how mind boggling this fast progression traumatizes us all. All I can say is that I wish you peace and comfort during this difficult time. Your emotions will be all over the place as you mourn your wife as the...

❤️

Just keep trying. He’s very angry, will probably be angry forever. It might even change to apathy. There’s nothing you can do except be there for him, understand what he’s going thru, and love him. Time flies too fast and you don’t want to have any regrets. Once you are back in his life, he...

I wouldn’t recommend the injections. My mother (died 11 months after diagnosis) had onset bulbar and those injections were recommended prior to her ALS diagnosis but 2nd opinions said they were painful and may not work. If you have been diagnosed with ALS I wouldn’t recommend any procedures...

Just 2 weeks ago my beautiful mother lost her battle with ALS. It quickly (diagnosed in April 2021) stole her voice, her joy, her future, her love of food, her beloved volunteer job, her ability to hold a book (which i think devastated her the most), her limbs, her hope, then her breath. I...

I’m so sorry. I don’t ever wish these early stages of diagnosis on anyone-it’s hell. But if it’s ALS, it won’t be ignored. Progression will happen whether you are ready for it or not. All i can say is read as much as you can, support her emotionally once the Dr confirms diagnosis, know that...

HELP!! Is there an easier way to have PALS (use of left arm/hand only but weakening strength using the on/off switch) be able to turn suction machine on and off? I thought about a smart plug but not sure of compatibility. Also thought of a power surge protector with an easy on/off switch. It...

My mom is nearly the same as yours except she has no signs of confusion just total apathy. To everything. Just doesn’t care or want anything that would make her life or my caring for her easier. I think when it progresses fast (diag April 2021) and they are so strong, they fight fight fight...