Amy Perdomo

Hi Amy,
Thinking of you. How are things going for you? I'm kind of stressing out because my twins are freshman and they have their first high school exams next week. My son has been having trouble adjusting to a bigger school and high school. I think my dad having ALS is bothering him as well since he's extremely close to him. Dad has moved back home now after staying with my sister in Dallas for awhile. I had missed him so much. We have a family friend who moved in to my dad's house and is his full-time caretaker. We also just hired a college student to be a relief caretaker. My husband, aunt, and I help out too with whatever we can. Take care you are in my prayers. Kim

Thanks Amy, every person has a different progress, try not to dwell on the inevitable, enjoy the time with your Mom, make every day with her special in some way if you can so you have good memories..look after yourself too..be gentle with yourself..Mair x

Good Moringing, Amy. Just a note to let you know that I'm thinking about you and your mom and wishing you a peaceful and comfortable week. Shelly.

Yes they should

Amy, I read your post about your Mom having trouble coughing up phlegm and wondered if you have on hand a suction machine and a cough assist. I've been plagued with allergies this year and have developed a weakened cough. The cough assist machine has been very helpful.

Hi Amy - Sucks, it does! We have no PEG (long story, but he has consistantly refused it since a relative of ours got sick and we had no idea we'd ever be on this path) and we don't have a bi-pap, either. He used to use a C-Pap, but doesn't do that anymore, either. His doctor's have advised to "just let nature take it's course." I wonder what they would say if it were their loved one. All I can do is just love him! I'm at a point in time where everything is going wrong. Everything! I'm consolidating two residences, trying to move us into a new home, once I find it, I have termites (yikes!) and we are being sued by his ex-wife for all of his life insurance and retirement. But you have to just keep smiling, right? You smile, they smile. And when they smile, all that other stuff just goes away. I wish you peace and strength in this journey! Shelly.

hi all - question, my mom has had high blood pressure all her life almost, i have always given her her bp meds, but recently everytime she goes the the drs. her blood pressure is low...is this normal for als patients....does the blood pressure lowers

hi all - can anyone please help me with some info on any communication device for my mom, she doesnt speak and when she does try she doesnt have like enough energy or breath to say anything, even though if she would it doesnt make sense, so i am not sure a communication device can help, when i give her a tablet, she doesnt make sense in what she writes.when i see people that are healthy and are complaing about small stuff it irritates me, i have learned the hard way to appreciate the little things in life, we are nothing without our health.i do thank the lord for at least giving me a heads up on more or less the time of end on this earth for my mom, because that way i everyday tell her what a wonderfull mom, sister, grandmother, friend, daughter she has been, everyone that meets her and knows her has seen what a wonderfull person she is....so not one day goes by that i dont tell her "thank you for all the wonderfull things she has taught me, she will never be alone,I LOVE YOU MOM !!!!

Amy, do a search on the site. I wish I could remember the name of it, but there is a PDF file you can download and laminate that will let your mom use a finger or her eyes to let you know what she needs and/or wants.

If you can't find it, start your oen thread asking about communication. Your ALS loan closet might have a communication device, too, if Medicare won't get one.

Amy, I just wanted to reach out to you. I replied to your last post. I did not realize your mom was 73. Still, if her writing is not making sense, as in full words, not mistakes, she could have dementia. That may be why she wants to eat things she should not. My husband was the same way and KatieC on this site can really educate you on FTD. I'm very sorry. CJ

oh good that makes me feel a little better, i do want to give her sometimes yogurts and creamed soups but she insists on meat, pork rind and just anything she is not able to have...go figure...i am now sleeping with her on a nightly basis just b/c im scared she will choke with her phlem, she sounds scary when she is on her back laying down...i truly appreciate you giving me some 411 on this evil disease....i am going day by day with this, and thanking God he has given me 73 wonderfull years with her, i know we will be reunited again at one point and that keeps me going ....thank you so much

I'm sorry you are having to go through all this. No one deserves this disease. My aunt felt better a week or so after the peg and still managed to eat creamed soup and yogurts. Yes, as you say, it is scary and heartbreaking to watch the changes. She must be so pleased to have you with her, you sound like a lovely daughter. Please feel free to message me when you want.

Hello Amy. Sorry to hear about your mum. My aunt was also Bulbar. She was diagnosed in May 2011 although showed signs (slurred speech, clumsy) for a few months beforehand. I can't really comment on your mum as everyone seems to progress differently with this disease and my aunt's situation may have been totally different to your mum's. I hope you understand. If she only got the peg on Tuesday give her time to recover from this and to adjust. Please let me know how you and your mum get on, I'm thinking of you both. Take care.

Amy, Hanna is a scam. Not a doctor. There are many people out there that prey on desperate dying people and Hanna appears to be one of them. Don't be fooled.

my moms fine too, she hasnt got too bad, But they want to do the feeding tub NOW while her breathing levels are okay..because if they waited and she were to need it in the future then itd be dangerous to have her under anesthesia while she has low oxygen levels..but shes eating okay, we just have her eating strictly smooth food