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Becky, Thank you so very much for taking the time to share your details to prepare those who are new to this journey. How I wish I could get my PALS and his wife to read these. I'm sister of PALS. Does that make me a caretaker? Am I allowed the honor of this title?
PALS was only diagnosed 3 months ago. They took two trips at the advise of all, though he was apprehensive about doing this. Two serious backward falls after the travel and resulting hospital stays (now in acute rehab for a couple of weeks) has them looking at the safety issues of their own house. We sibs are politely asked not to get involved. The realities of the beast are very very hard to accept, of course. But one has no choice but to accept those realities.
Here's my question for you or anyone else out there who knows: does travel speed the progression of the disease?
All best to you and your PALS and to all others here.
P.S. Hooray that NC finally is going to give teachers a raise!
Fayj
 
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Hi Fayj, and welcome to the ALS forums. I'm sorry you find yourself here, and I am sorry you are feeling like an outlier as far as being a sibling and not a spouse. I would like to emphatically voice my opinion that travel does NOT speed up progression, per-se. However, stress, falls, physical insults to ones body or psyche could at least make things seem somewhat worse, at least at the time. Travel or pursuit of whatever the PALS enjoys is worthwhile and makes the present time/life of the PALS more enjoyable and less routine. However, if the PALS (in your case, your brother) really does NOT want to travel & his anxiety level is heightened by the very thought of it, then travel (more than just day trips, etc.) may not be for him. If your brother/PALS used to enjoy travel, then it can easily be done safely - BUT he (brother/PALS) and his wife need to accept the fact that safety preparedness & anticipation of present and future safety equipment needs are paramount to lessen the risk for injuries. Unfortunately ALS is a progressive disease and your PALS & his spouse need a reality check that things will get worse, instability will get worse, dependency upon others and safety equipment will increase and they need to anticipate these needs and meet these challenges. Travel, when undertaken responsibly and with all equipment needs anticipated can be very enjoyable and give a PALS much needed escape and things to look forward to.

And, YES - you definitely can and do deserve to call yourself a CALS! You are interested and trying to be involved in your brother's care and I admire that so much! Do all that you can (if you want to, which it sounds like you do!) to try to convince your SIL to allow you to be involved. Try not to tell her what to do. Offer to be there, help out, etc., but ultimately your SIL needs to come to the realization that ALS is an extremely challenging disease and that she will be blessed to have you as an ally / now or later.

Blessings to you Fayj and I am sure you will get more responses, but you may be encouraged to start your own thread or your post may be moved. Wishing you the best!
 
Fay, welcome to our little family! Of course you are a Cals if you are interested enough to read here and ask questions in an effort to help your brother and sister-in-law.

The very thought of this disease is overwhelming, and sometimes having too many voices in the conversation can make things even harder. I do hope that your brother and sister-in-law find a way to be comfortable with your help sooner than later, because they will need it.

I agree with Buckhorn that travel does not need to speed progression, but the effort expended while traveling can. My husband traveled drove from NC to Colorado each year for the first 4 years after diagnosis. The first year he drove himself (against my wishes and with some hair raising experiences), and the last two years other family members made the trips with us to help out. He started in the truck with a the chair on a lift on the back, and we now have a very, very large van and an enclosed trailer for hauling all of his equipment.

I told him after last Fall that we are done traveling across country. He needs a hospital bed. I can get them put into hotels at our destinations, but arranging that all the way across country for one night at a time is too much. Unfortunately, I think that not having the trips to look forward to has done a lot of harm. People trapped in bodies that don't work still need to feel alive, and if travel is what does it for them, then they need it in some form.

Having said all of that, I'm sure that the last trip at least did speed things up for Matt. It was exhausting, but I would not change a thing.

One more tip, no need to quote the original post. Many of our PALS use eye gaze equipment and have trouble getting past them.

I do hope that you will start a thread and let us get to know you. Hopefully you can share this site with your PALS and his wife. Most of us have learned more here than anyplace else (including from Docs and clinics).

Becky
 
I'm almost afraid to say it, but things seem to be much better. This is day 10 of the antibiotics and other measures, and my guy's finally putting out something that looks like soft serve ice cream instead of liquid. He also had some actually move while he was lying in the bed (finished when we lifted him in the sling), so it looks like things might be working properly again.

We ended up taking him off muscle relaxers to help the bowels and we stopped several things that can irritate the stomach. Now if he stays on milk based formula we will go through this again, but now we've established care with the GI clinic at Duke and can call for an appointment and antibiotics when he starts to bloat up--hopefully in time to prevent another hospital stay for Ileus. I can't remember if I explained this here, but apparently his Diabetes, inactivity, and milk based formulas caused an overgrowth of bacteria in his lower intestine---which caused way way too much gas. Nothing was moving, so his stomach and intestines were all full of air.

Oh, the GI folks think his problem now is inactivity. Even turning him every two hours as we do for the butt will help the stomach and intestines. Laying in one position in bed for 24 hours is terrible for the body.

I got him out yesterday for a short walk, and he slept well and woke up refreshed. I had gone most of last week without a nurse because she was on vacation, and then she was out yesterday because she sprained her finger very badly (the doc wanted her out three days, but she's here today). Today I have taken three naps. It's a wonderful waste of time, but needed.
 
Glad you are getting some rest Becky and things are going better :)

Naps are never, ever a waste of time they are a gift from God.
 
Becky, I am so glad to hear that Matt has improved and things are "moving" properly. Thank you on the education/reinforcement of the fact that any movement (even simply rolling side to side) helps to improve motility of the bowels. While my PALS bowel program is far from perfect, I think his bowel mobility improved when we began using a probiotic formula from Amazon. If anyone is interested, go to Amazon and search "Hyperbiotics PRO-Bifido Probiotic Support for Ages 50 60 Time-Release Tablets". I only give Dave one per day. When I stop giving them to him, he is much less likely to have a bowel movement, regardless of 2 daily Colace, a daily Senokot and a fiber (psyllium) tablet.. In our situation, the Pro-Bifido seem to make a difference. Your mileage may vary!:smile:
 
Buckhorn/Becky;

Wife has been on probiotics for several years and her bowel movements have been regular, however, she stopped taking them for about a week (could not swallow them) and things stopped up for a few days. We started using apple sauce to help swallow the probiotics and it worked within hours.

About two weeks ago she stopped being regular again even with the probiotics. One of our care givers suggested warming prune juice and sending it through the tube. Worked. Had a bowel movement within hours.

We now keep the little cans of prune juice and use about one half a can periodically. Keep the other half in the fridge in a small glass. We throw this away if not used within a few days.

Ernie
 
Becky, I’m happy to hear you are getting into a good rhythm in more ways than one. Once you can spend a good amount of time at home, you’ll get into some good routines with the vent and care.

As to the bowel, I have found that every so often we have to switch things up to keep Brian even somewhat normal. As Buckhorn mentioned all the “medicines” don’t seem to do it. His body laughed at prune juice and an probiotics. Currently “Natural Calm” which is Mag citrate in powdered form is working. For how long, I have no idea. I give him 1-2 tsp in water through the tube each night.

Becky I think you’re doing awesome! And I know you needed those naps after a week without help. I’m happy you could get them in.

Hugs,

Sue
 
Go Becky and nap whenever you can! The rhythm of life is a powerful thing ;)
 
Tillie, you are so right about the rhythm of life. Fighting it only complicates things further. It's far better to recognize and adapt.

As Lkaibel says, those naps ARE a gift from God.

Sue, I think of you almost every time I sneak in a nap. I wish I could give some of them to you. The mag citrate is an interesting thing. I asked my DIL, a nurse, why they just refuse to use it in the hospital. She told me it often causes cramping and extreme discomfort. LOL---I can give Matt an entire bottle and have a normal movement an hour of two later.

Ernie and Buckhorn, I was giving probiotics, but then someone--I think it was Laurie--mentioned possible bad side effects for PALS who may have some infection brewing. That the probiotics would encourage growth of all kind, including the infection. So, I now have a box of probiotics. Our arsenal continues to grow, and I have also found the mixing things up helps enormously.

I thought we were headed back to the hospital last night and I must say, I had a terrible response. I am very, very tired of that trip. We brought more blood up with the cough assist and suction, and he had a slight fever that was rising, and he complained of his ears, throat, and head hurting. Crap crap crap crap crap. So, I consulted with Dr. Google who confirmed what the Docs at the VA had said--if it stops on its own there is nothing else to do. Bleeding can be an early sign of pneumonia, and one article said that early deaths from pneumonia are often from bleeding, rather than inflammation. Other than that, unless he's gushing, we wait it out. This morning there is no fever and no blood. Lots of secretions, even with the scopolamine patch, but I'd also stopped the Alka Seltzer (which reduced secretions but can irritate the stomach and cause bleeding--another recent problem), so we're just using the cough assist more and keeping an eye on things.

His lungs have been prayed and ct scanned and all they see is the normal gunk that comes from repeated pneumonias. Other things that an cause bleeding--well, I don't think he could tolerate the treatments anyway.
He is bright eyed and wanting to get up, so maybe we'll be home for a bit longer :)

I finally got the borders on the quilt I pieced for my niece's wedding, which was last May, and got it dropped off to be quilted. That will take another two months, but it will be beautiful. Another reason he got sick yesterday. I seems like every time I go upstairs to sew, something goes wrong. If I believed in a vengeful God, I'd be getting rid of my sewing machines!

No nurse today, so I'm off to the shower with him. His days and nights are turned around, so my goal today is to keep him awake!!!

Becky
 
Becky, good luck to Matt and you with the blood and gunk scare! Toughing it out at home seems like a sound game plan. Stay strong!
 
TOO late to edit my last post, but I meant we now have probiotics...
 
Becky, small tip. I always give a fever, unless extremely high 24 hours. If it doesn’t resolve, I call the Dr. I do use tylenol for comfort with a fever. Also, repeating suctioning and/or cough assist can irritate the lung lining and you can see some blood on suctioning. In those cases, I tell Brian we are going to slow down with both, as he’s just making things worse. As you may have been told, suctioning irritates and causes mucous, so you can get into a nasty circle.

The best thing in that case is to try and have them wait a little and spread the suctioning out as best you can. I’m sure you’ve been told some of this already, but it’s always nice to know that another person has gone through this.

Hopefully he is still awake and you can get his time switched.

Hugs,

Sue
 
Hi Becky,
Like Sue, when there was bleeding I would immediately back off the cough assist and suctioning as much as I could safely until there wasn't any active bleeding. My husband was on plavix and aspirin for multiple heart conditions so he bled easily and as a result we had numerous bleeding events in the airway. I categorized them as "above the cuff" and "below the cuff". Above the cuff, I would first make sure the cuff was up tight to help keep blood out of the lungs , typically they were caused by trach changes ( when he had the Shiley ) or his vent circuit tubing pulling on his stoma. The below the cuff events were usually caused by someone doing too rough or too frequent deep suctioning, the hospitals were the worst. After many of these events I came to the point that the law of the land was cough assist to get secretions out followed by suctioning only the trach tube and 1/4 inch beyond its end. Yes I actually measured a trach tube, added a quarter inch, and figured out what number on the inline suction catheter it equated to. Also, insuring his airway was well humidified helped. Wow, that was probably way more information than you needed as you probably know most of it. Hopefully this was a one off event for you.
One device that I can't recommend enough to anyone home on a vent, as it saved us from so many hospital trips , is this sterile secretions collector. We were able to get a sterile sample , run it to the lab, get a "sensitivity analysis " so the doctor could prescribe the best antibiotic for the given bacteria , all without leaving home. We also had sterile urine cups for the same purpose as my husband was prone to UTIs.
 

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I agree that mixing things up (re: the poop-patrol arsenal) is quite useful and helpful. We have used the magnesium citrate as a last ditch effort a few times now, when nothing else worked for 6-8 days. I nicknamed it "the bomb"! Regarding probiotics/prebiotics and intestinal flora, I have never read an association with consumption of these and increase infection in the bowel; quite to the contrary I believe. I am obviously not a GI specialist butt (HaHa) - what I have been told in the past from MD's is that if you have diarrhea/cramping AND a fever, you do not want to take something like Imodium that will keep you from expelling the nasties from your insides. You never want to block your body's efforts to expel infectious "material" (ahem) from your body, esp. when there is a fever present.

I'm sorry you are conitnuing to have these repeated scares regarding pneumonia/lung infections. It sounds like you are quite informed about how to best deal with it and are doing as well as can be expected. I can appreciate how tired you must be of the repeated trips to the hospital. I admire your fortitude (& Matt's as well). Big Hug1
 
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