Worried about Steve

[chally]

My breathing sucks! We have traveled from WV to KY to visit my daughter I have two trilogy's one by the bed and one for the van or on the road. Well I messed up a brought the one that I think the setting is wrong cause the alarm goes off as soon as I drift off to sleep and not breathing heavy. It reads apena every two min so I can 't sleep. Last three night were bad and I had to sit up most of the night.
Tomorow a friend is coming with the other trilogy so things should get better espically as I am heading down to New Orleans for the saints game with Steve Gleason an opportunity I don 't want to miss. Cooler air is good! For me not being active is not good. Sorry so wordy, just wanted to let ya all know my scene. Love ya all chally

 

[patoyeah]

Aussie, are you saying he is being refused a PEG? When done in radiology by an experienced interventionalist, there are case series where the FVC has averaged as low as 17%, so long as the pt has his PAP during the procedure.

If u can get a feeding I recommend it. The week before my feeding tube surgery, my fvc was 24%. I used my bipap with nasal pillows, through the entire procedure.

When done this way, its done with an Interventional Radiologist, only a local anaesthetic is used. U are awake the entire time.

Take care,

pat

 

[lgelb]

Chally, easy to turn off the alarms -- and fix anything that needs fixing... let me know if you need more precise instructions. To unlock if it's locked, so you can turn the apnea alarm off, either hold the R button down for 5 seconds until you hear a beep, then hit the Up arrow button, or if this is a Trilogy 100, hold down the alarm button and the down arrow to unlock. You may also need to set "Menu Access" to "Full" to change the alarm settings.

Have a great time at the game!

Best,
Laurie

 

[Lkaibel]

I am so sorry you are going through this. I just recently learned myself that bulbar and breathing issues do not always go together.

I think sometimes even apparent lulls in progression are an illusion. I would say for example that Brian seems much the same as four months ago, except I CAN see the extra effort it is taking him to do things. Yes, this rotten disease does need wiped out.

 

[Jhill]

Bob refused to get a feeding tube, just didn't want to go to a hospital again. He was able to swallow and sip liquids up until 3 days before he passed away.
It was his breathing that declined so very rapidly. He was using the trilogy 24/7.

Joan

 

[scaredwifetx]

Thanks to everyone commenting on this thread. I do think Steve needs to start using his trilogy more and seeing his doctor earlier then clinic.... may need to happen. His doctor is on maternity leave and getting help from Texas Neurology is very hard. I am going to insist on an appointment. The only help we receive is at clinic and then the follow through is non existing. The Trilogy providers are the ones who had the settings all wrong. Thank goodness for Laurie since she is the one who helped us with the settings.

The only knowledge I gain, in order to help Steve is from this forum.... not his doctor or the Neurology group. I need to change that myself and I now understand that. I need to make sure he is getting the care he needs and I need to do a better job of staying on top of it all. Even Steve... is admitting to the progression and it's happening quicker than we are ready for.

Today, I am feeling like the worst CAL ever. I am so ignorant when it comes to the medical side of this disease. I have let Steve convince me that everything is ok with him for to long and therefore we are not prepared at all. This has been one of those days for me. The ALS was cancelled due to storms, My kids and grandchildren left and they even noticed the changes in Steve. The minute they were gone I broke down and have been in a bad place most of the day.

*** update: While typing this post Steve noticed that I was upset (I so try not to let him know when I am upset) he came and sat down beside me. We talked and he told me that I have been a wonderful wife and I have made sure he has everything he needs. Sorry this post is so long. I guess I just need to let it all out and I know everyone here gets how I feel. I admire so many of the CALS here. I feel so inadequate compared to so many of you.

 

[vw-fl]

Hi Deb. I am so sorry that you are having a such a bad day. Please know that most of us CALS start off not knowing much about this disease. The members of this forum provide all of us with so much support and knowledge.

I don't know what your insurance covers but I would strongly suggest, if you haven't already done so, that you have the following local doctors for Steve's care and those doctor's should have privileges at whatever hospital you would take Steve to in case of an emergency : Primary Care/Internist; Pulmonologist, Gastroenterologist, Neurologist. We met with several of each of these so that DH could decide which was the best fit for him.

We go to clinics too but the clinic doctors are too far from where we live and they don't have privileges at our hospital.

I'm glad Steve was able to talk to you to let you know what a loving, caring wife you are.

Hope tomorrow is a better day. Hugs,

vw-fl

 

[lgelb]

Deb, it is only normal to want to shelter yourself from the reality of ALS (which includes not knowing the timing/order of progression except in familial forms to some extent) and that applies to both CALS and PALS. It is a truth that is so very hard to grasp, in the enormity of it, the unfairness, even if we knew the whole song up front, which we don't. You are neither ignorant nor unprepared. Just human.

Steve knows every day what you are doing for him -- it is a hard truth for him as well -- however seldom he says so. And so it is with all your PALS, for all you CALS.

Best,
Laurie

 

[patoyeah]

every cals that makes an effort to visit a site this is rare

Evening,

pat

 

[scaredwifetx]

Thanks you Laurie. You have helped us both so much. Steve is so grateful to you for helping him with his settings.

vw-fi. Thanks. We don't have any of these doctors. His primary doctor referred us to Texas Neurology and his ALS/Neurologist is there. We don't have any other doctors and the clinic is 45 minutes from our home. I had no idea that he is supposed to be seeing multiple doctors. His Neurologist did not tell us that. Hospitals? I never thought of that either. Our limited prescriptions and visits have all come from Texas Neurology. I am not sure I could even talk him into going to more doctors. He thinks they don't or cant do anything to help him.

 

[texastc]

"we talked"...savor these times...and believe what he said. Go with it. You are not inadequate in any form or fashion.

tc

 

[scaredwifetx]

Thank you Pat. I am unable to hit the thank you button.

 

[scaredwifetx]

tc, I always look forward to your posting on any thread and its a honor to hear from you. You were a wonderful husband and always have great advice. I am feeling much better and may even get some sleep tonight.

 

[sunandsea]

Deb, I can relate to your feeling of not knowing as much as I should or doing what I should be doing to care for our PALS. But I've read several of your postings and your words of concern about your husband and your searches for answers to problems as they arose. I also read your words of encouragement to others and in my (humble) opinion, you don't sound like one who is ignorant or unprepared. As already said, there is so much to learn and so much to handle emotionally from the beginning of diagnosis to each day this disease progresses, it can be overwhelming. From what I've read, Steve has been similar to my husband in that he doesn't want to know what is happening or what will happen and this makes it especially difficult. How special that he recognized and verbalized his appreciation for all that you have done! Remember and hold on to those words and that time together. With new knowledge, we make new decisions - but don't feel inadequate or guilty over things not done. (I've been given this advice and am trying to follow it.) I hope tomorrow is a better day. Hugs, Judy

 

[scaredwifetx]

Hugs right back at you Judy. I really appreciate your post and for making me feel better. At times it is so hard for me to accept what is happening. I have always been one of those who takes care of my family and friends. I always thought because of my childhood that I was strong in the face of tribulation. What this disease takes from us each day is strength in all possible ways. Steve has loved me and has always been so proud of the women I am, the battles I fought and my being able to come out the other side. I miss the hugs, happiness and the calm he brought to my life. These losses have a way of breaking me down every once in a while.

Tomorrow when I wake, I will put my big girl panties and boots on, go to work and come home with a smile. That's just what we do.