PennyX

I keep thinking what if it was me and then I realize just how dire this illness is for him. And to know it will get worse- the breathing doesnt seem to be a problem yet. I really appreciate your input and your offer to advise me on this. It stinks, doesnt it? Hope to hear from you soon, now that I know how to check for messages!

My husband is the opposite of yours, he doesnt want to travel at all because he is afraid "something will happen" as he says, to put him in the hospital while we are away. I think we should go while we can, he is still able to use his arms and hands, though on a limited basis-and they tire out very easily. I asked my daughter to come home while he still looks pretty normal because I know he wont always be so. My husband is not a veteran and we have only just applied for SSA disability. I am working out at Latrobe airport but I expect that when he gets to the point where he can't move his arms and hands at all, I will have to leave the job and take care of him. I just have to figure out what to do about healthcare. The folks I work for say they will work with me on this but I dont know exactly what that will mean. I am hoping to make it through this year and into next year a bit before I have to quit the job. That way I can bank some cash to live on.

My husband started having really noticeable tiredness and weakness in his arms back in Jan 2012. Getting weaker all the time, he went to a neurologist Dr Ong in Monroeville who mentioned ALS as a possibility. At that point I started reading up on it and it scared the bejebbers out of me. Unfortunately, after many doc visits and tests all over Monroeville, Greensburg and to Shadyside a few times, he was officially diagnosed this past February. His specialist is Dr. El-Dokia in Shadyside- we did go to the Kaufman bldg and once to another bldg for a breathing test. He refuses to take that drug- starts with an R, I cant' remember the name. He doesnt think it is worth wrecking his liver for only a 10% increase in life expectancy. I am torn about that.

Hi KissJ- sorry I didnt reply, I am new to all this forum stuff and dont know how it works. I didnt notice there were messages, i was wondering how I would get a reply from you. Sometimes I can be so dumb!
Anyways, thanks for bringing me up to snuff on your family. We have 1 daughter who is married and lives in San Diego- much too far away to really be any help. I think I am running out of room here. see next msg!

Second Post has part 1, 2, 3. It wouldn't let me make my message too long!
God Bless!!!

We live in Greensburg, PA with our dog Sampson a Golden Retriever and have been married ten years. John is 61 and I am 56. He has two sons, my step sons who both married in the Fall. Steve is 30 and Mike is 24. Steve and his wife are expecting a little girl in July. I pray John gets to see and hold her!!

John has had ALS for two years in June. But, Dr. Lacomis thinks he has had it for a year prior. June a year ago we went on a two cruises!! He was just starting to use a powerchair and took it as it was easier on the trip. At that time, he was able to use a walker. Now, he is unable to walk at all confined to his powerchair and transfers are getting more and more difficult. As I said in my first post, he has a feeding tube, and an AVap to breath along with other breathing helps as far as machines. He spends a lot of the day using them!
John is VA connected. If your husband is a vet, I can give you tons of advice!!! We have recieved all their benefits to date and it is a heaven sent, however slow and loaded with paperwork it is!

Second Post: Penny, now I read your info. after posting the first time. Wow, we are very close!! If I can give you any support with help in the area, and or advice from living with this horrible monster, please don't hesitate to ask. Yes, I have taken the day off of work to go with my husband to Oakland. But, we hired a caregiver who takes him too to relieve me. We found a wonderful girl and can't imagine doing this without her especially now that John is worse!!

PennyX, Hi! My husband goes to the ALS/MD Clinic in the Kaufman Building in Oakland, Pittsburgh. His doctor is Dr. David Lacomis. We are very pleased with him and the team that sees John (O.T, P.T.,Nutrition, ...). He went to the Faulk Building to see Dr. Cristo for Pulmanary concerns and has breathing machines and such through them. Then, he had surgery a couple of months ago in Presby for a feeding tube. All the hospitals are connected and all work together for the good of my husband.