Recent content by Amber10

Hi, I am sorry to hear about this. I just recently have gone through this. My grandfather was diagnosed with this. There a many steps to take. I can totally help guide you in all this. I want to pass on all may knowledge to you. I want to help out and all of this is so fresh in my head. It...

For an ALS diagnosis I thought that the hallmark signs are the fasciculation, which are twitches. Along with an abnormal neurological exam. My grandpa did not have an abnormal EMG, but when I asked the dr why they were so sure they said because of the twitching and the abnormal reflexes. Did you...

Jamie i am totally there with you in all this. A while back I tried to do the voice bank deal and they were not wanting to do that, since that time my grandma said that she wishes she would have listen to me. They still resist things, but you are so right it is just because it is so hard to...

Thank you guys so much! ok I will drop the DNR for sure and leave it be! Thank you for telling me that. I just want him to be comfortable and it seems like one things after another and I just want to take it all away for him. I know I cannot do that so that is why I try to stay one step ahead...

I appreciate all of your input. I hope you both did not get the impression that I just sit there an bug him all the time about the DNR and all that hard stuff. I definitely keep him distracted with all the things he used to love along with new things that I think will get him through the days...

Thank you so much. I know he is feeling the same way that you are. I can see it in his eyes and I can tell because he always looks to my grandma and me. We have a really big family and he is plays a big roll in it. He always does the cooking for holidays and brings everyone food, plants...

Hi, I hope all of you out there are doing well! I have a couple of questions. The time has come that his lung capacity has gone down to the point that they are recommending he get put on a ventilator. I fist want to ask if there are any words I can say to him that have helped all of you in...

Yes, I agree with both of you. I try to stay one step ahead of them but they seem to not accept it until it is the last minute. They are always really thankful that I got it done anyway but I feel like I am always the one bringing new news to them. I called in a home care place to meet with...

Ok I will for sure. So another question I have is that now he is not accepting the breathing machine. I can totally understand where he is coming from, yet my grandmother cannot. She wishes he would but he only does it sometimes to make her happy, which doesn't even really help. Well today was...

Thank you so much for all of your support and advise it really helps. Sorry it took me so long to reply I actually thought that no one replied because I had not gotten an email. Sorry! Thank you so much. So do you think eye gaze will be just like the ipad or easier for him?

Ok so I have a problem and I don't know how to go about it. My grandfather has ALS and I have been the one who has been telling them all that they need. They listen for the most part but he will not listen to me when it comes to using his alternative method of communication. So he still has...

ok thank you!

So his voice is almost gone, but I think my grandma wants it recorded, but it will not work with the model talker because he slurhhs so bad. So we have this app on an ipad called voice4u and it is actually really cool. The problem is that if the Ipad goes the voice is gone. I dont know if I...

Good, I am sure that will work out for you. You are both in a very hard situation and sometimes I am sure it gets frustrating for it to not be like it used to. That is probably where the snapping comes from. Not everyone handles things the right way, and it seems like you are a strong person...

ok great I will do that and I am actually so happy to hear they still have the sensation. He love massages and we all take turns rubbing him! Thank you again this all helps.