jamiem
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  • Hi! How are you doing? My son had a wonderful visit with my dad in Dallas. My dad's progression seems to currently be at a standstill. It was pretty rapid when he was first diagnosed. My dad gets occupational therapy and it has really helped with his speech and swallowing. I took off the week after Christmas to spend time with my dad and family. We will either be going to Dallas or spending time with dad here. It's kind of in the air right now where dad is going to be. He's waiting to hear from the specialist if he is going to be in a clinical trial or not. He was supposed to find out last week. They now said it will be another 10 days. Don't know the name of the trial but my dad said his neuro said it looks very promising. Take care of yourself and drop a line when you have time. Your grandson is a cutie! Kim
    He went in for coughing in July 9th 2012 AND To this day oct 13th he is still in the hospital. His Neuro did not want me to give him a feeding tube or any type of life support. I fired him and had to get congress involved. If anyone else on here has bulbar ALS or on a vent can you share with me? My email is [email protected]

    I had to break my post down in several posting in order to share my full story because I had way to many characters.
    He had already had nothing by mouth for 5 days! anyways my daughter has two colostomies so when i took her home to change her thats when they took him from a regular room to icu and that when our nightmare really started and thats also when the RN said that his rowdiness and anxiety is what got him on the ventilator in the first place and i said what!So I feel that the hospital did this too him prematurely and now he is on the vent permanently and was unable to wean off and with 40% oxygen. They try to let him die first by dehydration and we finally discovered that the iv had been disconnected by doctors orders they said but when i threaten to call police they started them back quickly! I told them my husband did not come to the hospital for you all to kill him!
    off! When i left the hospital my husband was in a normal room before i could get back they call me and say he was taking to ICU and if i wanted to have him put on a ventilator or let him die ! I was shocked because he had just got back to his room from a muscle biopsy and it would take 3 to 4 weeks to get results i told them you have to do whatever to save him because the results haven't even came in. Let me back track a bit from the very first time we arrived at the hospital and they found out my husband had ALS they removed his fluids without telling me and sent hospice or some lady to follow me around and mke me watch videos about discouraging vents and to stay with me till he died and i had to threaten to call the police to make them start his fluids back.
    Then when he went to Neuro he showed me the muscle loss in his hands and he progressed quickly and became total upper body paralyzes his breathing was affected but before breathing he had issues of choking and swallowing. I'm just wondering is his bulbar forsure or another form of ALS? He can still move his feet some but cannot walk. he has a trachea vent.I must ask this question because it bothers me since my sister asked me. She said do you think it was Gods will for you to have him on a vent she was saying it like I should of let him starved to death and suffocate and die! Did I do wrong? My husband 's will was to do all means of life support. I'm so nervous about this all and depressed and trouble sleeping and because I love him so much I just thought it was best thing to do... The RN said while my husband was in ICU that his rowdiness and anxiety was what got him on the ventilator in the first place! I always felt the hospital did this too him way to soon and now he can't come
    I finally told them the main thing right now is get my husband home and have quality time with him and love him and get our family back to normal as it possibly can. i found this forum in hopes to get support and give support as this is all new to us and a road that we had no ideal we would have to travel. Thanks for allowing me to share and vent. they say with Bulbar the very first symptoms is slurred speech but my husband very first symptom was loss of weight and constant non stop twitching , weakness in his hands and spasms just above the navel where it would tighten and pull apart as he would say and then about a month later his speech slurred crying/laughing and weakness worsen rather quickly in his hands and arms he couldn't even turn his hands at all.
    It has been a long road and many tears shed from my husband and me and our children. his VA primary care doctor was upset because i demanded they give him a feeding tube and the Neuro also said it was all a form of life support! Can you believe they just wanted me to let him die! They will save and do all they can for a cancer patient but one with ALS they won't...i told them my husband still has a purpose , he is still my husband and a dad to our children. He was mistreated at the longterm care hospital i even had the police there and still i could get no officials to help us. It wasn't till one lawyer advised me to go to congress to get what my husband was entitled too. to make a long story short the VA is finally providing him with a home vent and the things he needs but says I have to be his payee which I told them that ALS does NOT affect the brain and to leave him be but they say if I want to appeal that it will take a long time.
    I have been trying ti get him home for a longtime now I actually had to get the Congress involved it's been rough and very stressful but finally VA is doing what they should of been doing a longtime ago. Plus the PVA put in for me to be his payee and I told them that his brain is not affected and that he can take care of his own VA affairs they even put him as comatose and he is not! It just seems this has been a nightmare on him and us every since his diagnoses and I've had to fight every step of the way for him like they want to take everything away from him and thats just not right! my husband is getting the NeuroSwitch and will be able to communicate and all sorts of things with it and I told them that he may do it different but he can do it!
    My husband has Bulbar ALS and is on a vent and in a long term hospital but we are in the process of bringing him on on a portable vent and he should be home by the end of the month we are so excited! I have lots of questions and thoughts that just flood my mind and I was finally after 6 months able to accept that my husband REALLY does have ALS. They have never told me his life expectancy but say that his is very aggressive and that bulbar ALS is the more aggressive form. He was diagnosed positively with bulbar ALS in March of 2012 and by July 2012 he was put on the vent and has been in the hospital since early part of July. he is 100% service connected Veteran before the ALS.
    Hi! How are things going for you lately? Our youngest son flew to Dallas Thursday to visit my dad. My brother and sister think my dad's progression is currently at somewhat of a standstill at the moment. Hope it stays that way for awhile. Are you going to take the drug Ritulek? It is so expensive but dad is taking it because it's covered since he's a veteran. He now really appreciates that he was drafted years ago. Take care, Kim
    Hi jamiem Thanks, so how are you doing??? You have and had quite plate. I pray for all who have been afflicted with this disease. David sure kept a good sence of humor right to the end. All the differnt symptoms that came along, he would just smile and laugh and say (well this is just one more of the benifts of this #!%&?:* disease.) The pain also made him very angry/depressed, a little hard to get along with. He endured the pain,without takeing very much medication. Pain killers would cause ALOT of other problems. So he chose to go without med as much as possible. He new this disease and what was coming right down to the last minite. Miss him........................Chris
    Hi I'm Chris. My brother David just passed on 08/11/12 of ALS, after about 4-5 yrs. It took a good yr before he went to see why he was tripping and falling or twisting his ankle. Took a good 3yrs before new it was ALS. Started as drop foot and he didnt realize till he fell/tripped sevarl times that he noticed his foot would drop and would not feel it happening. At work now lunch break. I will tell youu more if you want or if you just want to chat. Chris
    Is that your little one in the picture that your holding? Can't tell how old you are from the picture. How are you doing this week? Our twins (Matthew & Julie) are going to turn 15 tomorrow. We have another son Eric who is 8. I just bought plane tickets for our youngest and my aunt to go visit my dad (He has ALS) in Dallas in October. Wish the airline tickets had been cheaper but it will be worth it to know they had a great visit. Take care, Kim
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