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Joined
Aug 8, 2010
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28
Reason
Lost a loved one
Diagnosis
08/2010
Country
US
State
TN
City
Henderson
My husband was diagnosed August 6, 2010 and has went from a healthy 32 year old man, father and husband to not being able to do anything for himself over the last year. This weekend scared me, he went to bed Friday night and woke up way worse than he was the night before. I am completely baffled. I am a nurse and this is just not right. His speech was vary bad, but now there is NO comprehensible sounds, just moans and groans. Could move extremities just a little, drive his own wheelchair, nod his head and even hold his head up for a few seconds. Now the only thing he can move is his eyes. Didn't even have red spots when he went to bed and woke up with several sores on the boney places (which are everywhere). He was eating and drinking-with some choking-now not at all, everything by tube only. Hospice comes and they are as unknowing of what this may or may not mean as I am. Just wondering if this is just part of the cruelty of this horrible disease and if anyone has any advice/input? I have been talking to our 7 year old seeing if he knows how sick daddy is, and he told me that daddy is going to heaven where he won't be sick anymore and will be with "maw maw"; our 3 year old, on the other hand, I don't think she is old enough to understand.

Thanks,

Amber:sad:
 
Amber, I'm so very sorry. This disease is, indeed, cruel and we never know what direction or pace it will take. It seems to have taken a quick turn on your husband!

I have absolutely no advice. I just want you to know I'm thinking of you and your family. Hugs to your two kids...
 
Very sorry Amber, it seems like your husband's progression is really fast, I wish I could tell you something to help you , just know we are here for you...Hugs to you!
 
I'm very sorry! What you are saying is a fear that I have! A fear that my husband will wake up suddenly worse and what will I do? This monster of a disease is so unpredictable that who knows? It is frightening! You are in my prayers! God Bless!
 
Amber I am so sorry to read about what is happening to your husband. One thing that jumps out to me (I'm a retired nurse) is the possibility that he has had a stroke. With decreased mobility blood clots are a hazard--usually pulmonary emboli. Your description just sounds so much like he has thrown a clot somewhere. I would ask your doctor if that is a possibility. I will say prayers for your family.
Laurel
 
I think you are experiencing one of the horrors of this disease. My husband had a very similar experience. In 8/2009, he had a bit of weakness in his left hand. He was diagnosed in 4/2010. By 4/2011, be could only move his head and eyes with minimal movement in his legs. For some, it moves slowly and for others it moves at warp speed.

My thoughts and prayers are with you.
 
I dont want to make you think that I am crazy or anything like that... but when I read Laurel's post, I got a really sick feeling in my stomach. I would check out that stroke possibility. Sorry this is happening at warp speed. Sorry this is happening at all.
 
Amber~I don't have any answers for you but I send you lots of prayers & >>>HUGS<<<
I am so sorry for your husband (& you and your family) this disease is so very cruel. My Dad has also progressed rapidly and unfortunately this evil disease progresses differently for everyone. I hate it so much! :mad:

Hang in there, you have lots of support here :)
 
Amber our thoughts and prayers are with you and your family. This disease is indeed horrible and cruel. If I could change the world I would start here with all the wonderful people on this site affected by this curse.
 
I hesitate to suggest it--but with such a dramatic change--is it possible he had a stroke? Did they consider a brain MRI? I'm so sorry--this is just not fair for anyone--and certainly not for someone just at the start of their adulthood (my daughter is almost that age)

Edit to add: I didn't read the entire thread, but I did want to add that blood clots are a very very real possibility in anyone that is immobile for any length of time--mine came after 18 hours in a car--

We are quick to think anything new is ALS--unfortunately, that's not always the case--but this can be a good thing--because some of the other things that happen CAN be treated.
 
So sorry! First i would make sure he is as comfortable as possible, for instance during a two hour mri my skull hurt so bad laying on a hard surface and my neck spasmed fron not having somethin under it and it hurt for a month before finally it fixed sideways and my doc was considering botox injections......I was never a bony person now elbows, tailbone, head, arms, knees you name it hurt if not against a well padded surface......second of all i TRY to believe this...ALS is horrible and God will look so highly upon those that endure such a disorder that we will be closer to him and jesus because of the suffering, which in heaven subsides and it sounds like your child is very smart and right..He/she has a good grip on whats going on and children are VERY resilient, your three year old will only remember your husband through pictures the way he was before he got sick. Lots of military kids endure this as well so they could be a great source of understanding for your little ones...a lot of kids in the military never meet their dad.....i hope i helped and didnt offend. sam
 
Thanks everyone. As a nurse myself, I do not believe that its a stroke, no characteristic stroke symptoms and hospice team agrees that it is just the progression of his ALS. Thanks for the suggestions though. And there is absolutely no way he would do an MRI unless someone knocked him completely out, hurts too bad to not be on well cushioned surfaces. The hospice team is very good and doing all that they can to keep him comfortable which includes lots of meds that are sedating, good cause I know he's not in pain or suffering while asleep, bad cause he's always asleep and if he's fixing to leave us I don't want to give him stuff so that his last few days with us are spent asleep but I don't want him to suffer either. Again, Thanks everyone, I have read everyone else's stuff on here for the last year and I know you guys are so supportive and so helpful!
 
Amber, I am sooo sorry for what you are going through. My husband died in August from ALS. His pattern is somewhat different from your husband's, but I find one thing that is similar. Although my husband gradually lost skills, he too would be able to do something one day and it be gone the next. His disease did not progress to the stage that your husband's has. He could still talk and move somewhat. Ultimately, it was the breathing that took his life. He started having difficulty on Tues. night. Friday morning it was obvious that it was worsening. He was started on morphine on Friday afternoon and he died early Sunday morning. I am still in shock as to how rapidly he lost his battle. He too did not want to be sedated. The morphine dosage was minimal and he did sleep, but we could arouse him and he knew everyone who visited on Saturday and would talk with them. I want to blame the morphine, but I know that it did not cause the respiratory failure. It only made his last hours easier for him. For that my family is grateful. His end was peaceful. Every person reacts differently with this monster of a disease and I do not know what course your husband's will take, but know that you and your family are in the thoughts and prayers of everyone on this forum. I hope that I have not shared too much information. Wishing you comfort and peace!
Janis
 
Sorry, hon, I missed the part where you're a nurse. Of course you'd know symptoms of a stroke.

I only mentioned it because I went to bed one night fine and woke up unable to move--I'd had a stroke in my sleep.

I'm hopeful they keep your husband out of pain. My thoughts are with you
 
Amber--what a tough situation. I am so sorry this is happening so fast for you. Be strong...
 
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