This isn't real good.

[brooksea]

We were sitting here watching the Falcons/Vikings game and all of a sudden my husband starts doing the choking-can't breathe-can't swallow thing! Out of nowhere! This went on for about 10 minutes.

He hasn't been eating well and one of his best friends is in critical condition in hospital on temporary vent and feeding tube. He's been very upset. He can't go visit, as it's too risky for him and his friend. Only family is allowed visits at this time.

He was supposed to go "fishing" with my Daddy later this week, but will not go because he thinks his friend won't make it.

I don't know if he is getting more saliva/mucous due to being upset or if this is a progression of the disease. All I do know is it scared the be-Jesus out of both of us.

[Zaphoon]

CJ, I agree it is scarey a thing to go through. Ten minutes is a long time to fight for air in a choking/coughing fit. It will wear a body down fast!

My heart goes out to the both of you. If your husband is feeling up to it, I think he should go fishing with your dad. I believe you are correct in thinking that a trip to the hospital to see his friend would probably bring on added anxiety.

Zaphoon

[Gelthling]

Mum gets this all the time - usually gets worse when she is not drinking/ eating enough - produces more saliva Ive been told, so if hubby has been upset and not eating real well, then I believe it can make the saliva worse, and if swallowing isn't the best then yes causes heart-stopping choking. When mum starts if we sit her up properly - no slouching - then it usually gets better quicker.

Hope you dont get too many more of them - make sure he drinks enough. Hope others have more experience/advice with this than me.

[tdamess]

so sorry but, he should go with your dad him staying home is not going to stop his friend from dying and his friend probably would want him to go , i know i would

[Erica]

CJ, Not eating and stress are two prime reasons to produce more saliva.
Sorry about his chocking episode, Erica.

[BarryG]

Hi CJ, I forget, does your husband have a peg? I have found that the excess saliva and throat goo is worst after I try to eat and drink using my mouth. That is the main reason that I have pretty much stopped eating now, I still can force a little down but then I spend 10 minutes in the bathroom suctioning and washing so it isn't worth it. I hope that he can avoid the gagging/choking because it itself can cause stress and is a vicious cycle.

He should go fishing if he can, I went hunting yesterday and although it was tiring it is also good to get out and get some fresh air and a little exercise. And to take you mind somewhere else too.

[cukita99]

thanks i am also experiencing the choking cough episodes. doctor told me to get peg a long time a go. i refuse.

[brooksea]

Thank you all for your replies. His friends are coming in from out of town to meet with each other for moral support. These guys grew up together, so I see why they are so close. I guess there is about ten of them. They are lucky to have each other. Anyway, he will not be going fishing and my father understands.

The choking thingy has happened three more times today. I have scolded him about not using the cough assist, as I think that might help a bit.

Barry, He does not yet have a PEG, but may be fast approaching one.

The wife of the friend in hospital called me and was hesitant to tell me what was going on, as she did not want to upset my husband (so very sensitive of her considering her own husband and his predicament!). So I've been trying to gently update him. Then I found out all the friends are emailing my husband with all the details!!! LOL MEN! The guy seems to be in a "semi-coma" and only responds a bit when they touch his feet. The wife didn't tell me that!

[Jeannie]

Dear CJ,
What a scary situation. Does he have a suction machine? the saliva might be pooling in his throat and then causes the gagging/ choking situation? Horrible chain reaction.
I am sorry you are both dealing with this, I hope the saliva issue clears up.
You are in my thoughts and prayer
In friendship
Jeannie

[BethU]

CJ ... I get those choking episodes, too, and they're awful. The last time, my caregiver called 911. Of course, it was over by the time the ambulance got here, but they carted me off anyway, because my b/p had gone up so high when I was "strangling."

It seems to happen to me in late afternoon, when the secretions get so thick. I had been using suction when it happens, but I think the cough assist helps more. I've been trying to take more liquid in, and using suction at the first sign of the thickening. It is ghastly when your airway is cut off completely!

So sorry this is happening, and for your husband's friend, too. I hope they both improve.

[brooksea]

They trached and vented the friend yesterday and put in peg. Now, the next day, the wife is having him taken off the ventilator. Sigh...

With the holidays coming up, I was hoping for a little less stress on my husband. Looks like that isn't going to happen. He can't understand why they've changed their minds and nobody is getting real answers (that make sense) from the wife. But we can't do anything about it. Although we question the sudden change of mind, I do feel for the wife and family.

I hope my husband can get through this OK. Hope I'm not sounding too selfish.

[tdamess]

so sorry to hear that it is very hard to stand by not being able to do anything . best wishes

[hopeful warrior]

CJ~ I'll see your 'sigh' and double it. I wish peace to you and yours. Have a blessed holiday season.

[GlenBrittle]

Selfish , I don't think so. Please take care of you , so that hubby has someone for support.

I hope things relax a bit for the holidays.

Is it possible that his friends wife is following his instructions ? That is the only logical reason I can see without thinking dark thoughts.

Please take care.
Glen

[brooksea]

Well, it seems that she would have to ship him off to another state to keep him on the vent. I knew that, but didn't know how many days the hospital would keep one on vent and still don't know.

My husband is just in a bad way. And he is more concerned for the other friends than for himself!

I can't tell you how much my husband has loved his friends and been there for them. This is breaking his heart because he can't go to the hospital!

[brooksea]

It is awful!

[Katie C]

{{{CJ and hubby}}} Such a heartbreaking situation. Hang in there!!

[indigosd]

CJ, do we ever get just one day that is easy..? How are all of you today? Definately a horrible situation. I am so sorry :[

[thelma313]

CJ, I am so sorry you are going through this. I am really hoping for some good news. Please let your hubby know that we are all rooting for him and his friend. Promise to take good care of yourself too ok?

Big hugs from Canada,
Rosella

[brooksea]

They sent him to hospice. My husband is there now saying his goodbyes. Didn't want me to go with him. He bought a heavy duty mask and promised me he'd sanitize his hands. The hospice is at another hospital facility and I really think it was unwise of my husband to go there, but I do understand him wanting to see his friend for the last time. He is a complete blubbering mess.

[thelma313]

Oh CJ, how heart-wrenching. How I wish none of us had to suffer at all, or ever say good-bye but I guess it's a natural part of life's journey... it's just the part that sucks the most. I really feel for you and your hubby. All I can do is offer you both my empathy. You are both in my thoughts.

Lots of positive thoughts your way...

[hopingforcure]

Oh CJ, I am so sorry you guys are going through this. I seem to remember Mare talking about her hubby losing a friend also. So sad, you guys are the real deal, and so authentic. I am sending my heartfelt thoughts your way.

[DgtofTNfan]

CJ I am so sorry that you and your husband are dealing with such a loss.
I will be thinking of you guys.
Dana

[brooksea]

He's sequestered himself in our office listening to Blondie. He would like to call his friends, but they can't understand him and he will cry. I called his best friend for him to let him know he had seen their friend they call "Bone" at the hospice. The friend still has his vent, so we are confused. The only thing I can figure is that they found a hospice that would take a vented patient.

ALS sucks! Especially bulbar!!!!!!!!

[KeeKer]

CJ , at least he got to say goodbye. Thinking of you all.

[brooksea]

Well, Bone died today. The funeral will probably be on Friday.

My husband will be making DVDs for all his friends that feature pictures of their outings and it will be put to music.

Hubby is devastated to lose a friend he's known for almost 40 years and it shows. All I can tell him is that his friend is better off, in a better place.

[KeeKer]

Please tell your husband I am so sorry for his loss. Know that it will be hard for him. Think it is a wonderful thing that he is doing for his friends. Will probably bring back happy memories for everyone.

[BarryG]

CJ, please tell your husband that we are all very sorry for the loss of his long time friend. I am glad that he was able to say goodbye and that he is able to make the DVD to honour his friend and the good times that they had together.

[joelc]

Please tell you husband how sorry I am.

[cris]

CJ: Please tell your husband that I am sorry for his loss!! Such a hard experience to endure just before the holidays!! Just know that the friend is in a better place w. the Lord..no more pian or suffering. Will be sending lots of prayers your way!!

God Bless to you all!

[tdamess]

so sorry for your husband and his friend ... but, i feel for you also make sure you take care of yourself also as it is hard on you to

[Katie C]

CJ, please accept my condolences to you and your husband for the loss of a dear friend. On a practical note... if your husband is on an antidepressent, please keep an eye out in case he needs the dose tweaked during this stressful time.

[indigosd]

So sad. Please know that I am so sorry for all of you. I know that it is hard on you having to watch your Husband go through this and there is nothing you can do.

[GlenBrittle]

Please convey our condolences to your family and Bones family.

Glen

[hopeful warrior]

Oh, CJ. I am so sorry. I am glad your husband was able to visit Bones and have some closure. How awful it would have been if he hadn't had that opportunity. I am lifting you and your husband up. Bless his heart.

[hopeful warrior]

BTW~ I hate this disease, too. My husband was a 6'4" 250lb. man who worked on oil rigs all his life. Now he's in his early 50's, wheelchair ridden, can't eat or drink by himself, can't potty by himself, can't even scratch his nose. I know he is not alone but I promise, to him it feels like it.

I'm sorry about the rant. Lately I am just over burdened by the sadness and unfairness of it all.

[thelma313]

CJ, I am so sorry to hear that your hubby lost his friend. Please let him know how sorry I am. Be sure to take good care of yourself and each other through this difficult time.

Big hugs
Rosella

[brooksea]

Thank you all for your kind words.

I've tried to call his GP and the ALS Clinic for some Xanax or something to help him through this but, I guess they've taken off for the Holiday. He is hoping he doesn't have a few choice words that pop out (EL) for the ex-wife that drove his friend into the ground and turned his kids against him.

Tough around the holiday!

[swi71]

CJ--
Sorry to hear all you have been through. Is your husband on any meds for the excess saliva? Mine is on elavil. It seems to help some. We also use the suction machine when he has a lot of trouble. We find that the weather also plays a part in the secretions. Our caregiver is careful about exposing him to cooler weather, pollens, etc. We were also warned by an ALS nurse that milk products need to be avoided as they cause one to make more saliva. (My husband does not have a PEG, still eats by mouth and has had bulbar onset since 2002).
Prayers.
Sharon

[Jeannie]

Dear CJ
I am so sorry you and your husband are going through this. I hope that he made it through the funeral ok. Were you able to get any Xanax for him? I hope you are doing ok, this must be hard for you to see him hurting. (I agree with you too that bulbar ALS sucks)

[indigosd]

CJ, how did the funeral go? I hope that it was as stress free for you Husband as possible and I HOPE that his EL did allow him to say those choice words! Seems very appropriate and you could always pass it off as the EL! [I can't help myself, I am too wicked sometimes] That being said, get a emergency stock of Xanax so that you have it on hand if you need it!! I can not even believe that they didn't have anyone on call-shameful and poor professional practice. FInd out WHY there was no one ON CALL!! You need to know what you are suppose to do for assistance after normal clinic hours.
Bulbar ALS doesn't suck. It can't. :[ It can't whistle, it can't kiss, it can't spit, it can't talk, it can't swallow, it can't use a straw...Bulbar ALS is a nightmare from H--L that destroys the people that we love. It is a hellish beast that sucks the life out of our PALS. I guess it does suck! Sorry, feeling very fragile and somewhat helpless this morning.

[brooksea]

Well, the funeral was the best one I've ever been to! (If that makes sense :sad:)

My husband actually fit right in, as there was barely a dry eye in the house. But, it was very hard for him not to break down completely. He was visibly shaking as he tried to hold back sobs. He went earlier to the viewing and cried with his friends. Bone was dressed in a chefs uniform, as he had loved to cook. The preacher, during the service, asked if there were any that would like to stand and say a few things about their friend, so about a half dozen rose to tell stories of love and humour. My husband started to rise to speak, but realized no one would understand what he was saying. :-(

Afterward, he said he let Bone down by not doing what Bone had asked him to do at his funeral. He was to open a can of Bud simultaneously with their circle of childhood friends and make a toast. :shock: But, I told him that it was enough just to "be there."

He said it looked like Bone had lost weight after he died - it must have been his soul, cause it was so big...

[indigosd]

Sounds like a great farewell and what a beautiful tribute said by your husband for his friend.

[brooksea]

LOL!!! Got prescriptions today and guess what was waiting at the pharmacy? Xanax! A little late. Will save those babies for another time.