What I snuck out and did today....

[rose]

What I did today...... I was told yesterday by a doctor that I absolutely could (I heard "should") not eat salad anymore. This is not so much choking related, for me the choking on liquids can still be controlled by leaning forward most of the time. This was because of my latest gift from ALS, the gastroparesis. The doc said, no salad, no raw veggies, not much fats, not much meat. Stick to smoothies, soup, more soup. Cornbread dipped in soup, other bread dipped in soup, mashed potatoes (not in soup LOL) Wine was good ~ no kidding, he actually said this~ YAY! .... I am to try to consume calories, add protein powder to smoothies.... So I replied, but what I want to eat is a big salad. He said, maybe a few bites, but its really a very bad idea.

I asked about my lack of sense of taste, and he too concurred with the other doctors that it is mostly the vagus nerve, (10th cranial) that two others, the 7th (facial) and 9th are the ones that sense the tastes, but the information is actually sent to the brain via the 10th. This is the best that I can relay this part. As I have pretty heavy involvement with those three specific nerves, it makes sense to me.

Well, that was yesterday. Today I was home alone. I thought WTF, how bad can salad hurt, I must be remembering incorrectly how miserable I was the last time. What would make me happy in this little spot in my lifetime, would be a nice big chicken quessadilla explosion salad from Chili's Restaurant. Who's going to know?

So, I gathered up my crossword to work on while waiting for my food, I went to Chili's, I ordered the salad (and a glass of red wine to be healthy LOL) I felt daring, like a true rebel.

I could not taste the salad, not the corn, not the tortilla chips, not the chargrilled chicken. There was a vague taste with the tangy dressing. The wine, thankfully still tasted nice. I could not eat much as my stomach started to hurt, I choked a couple of times ~ always popular to do while in public.

I brought 3/4 of the salad home with me, and its in the fridge. I'm thinking I learned my lesson, but it cost me like $9, so I couldn't just leave it.

Have I mentioned yet that this whole thing just sucks?

On a positive note, the doctor (a gastro who works with Hopkin's ALS patients) said that while it is true that I will eventually need a tube, that we are not there yet. He said when I do have to have it, it will be the type that goes through the stomach into the small intestine, a J-tube instead of the PEG due to my stomach not functioning.

In the meanwhile, after another diagnostic test, we may find that I qualify to have a procedure where he would dilate and stretch the sphincter valve in my stomach that opens into the small intestine, by inflating a balloon in it. After its stretched open, he would inject it all around with botox (it was hard, but I refrained from asking if he could shoot a little into my forehead while he was at it;-) ) He said that this might work for me, for a while at least. And that I need to start taking miralax every day to keep things moving through my intestines as well.

All in all it was an informative visit, it didn't even involve donning the cute little exam gowns we all love to model. He just talked to me and read my test reports from the other doctors. I have to have a gastric emptying test done to see how bad the slowing is, and that will determine if we can try it.

He said that the problem with putting in a tube before its needed, is that the process of getting nutrition in is very time consuming as the amounts are so tiny that can go in at a time. He wants to have a phone conference with the clinic when I'm there in a couple of weeks, and find out where my breathing is at, and what their feelings are on possibly trying a medication in addition to the procedure to help with it as well.

 

[BethU]

Glad you tested it out but it sounds like a bummer. At least you could taste the wine!

He's right about the time-consuming aspect of the tube, but it's not any slower than eating by mouth for me. It's mainly just another peksy chore. What I don't like with the tube is having to tape the 12 or 16" of tube to my midsection. Do you know when you'll be doing the tummy botox?

I do agree ... this whole thing sucks.

 

[BarryG]

I think that one of the cruelest aspects of this whole bulbar ALS experience is the loss of the enjoyment of food. While I can taste everything and I can probably (or maybe not) get something down but it's just so much frigging work and takes so long that me wonder if it's worth the effort. I can't imagine how it is for you Rose, to not only have it be difficult to eat and swallow but to also not be able to taste it. Thank goodness the wine still works. I am just about "souped out" and would die for a crunchy anything, especially tortilla chips. Thanks for the cornbread idea that you gave me a while ago btw. I wonder why my dietitian never mentioned it.

I am on a waiting list for A PEG tube and the doctors are telling me that it's better to have one put in while my breathing is still good and not use it that to wait until I can't get nutrition any other way. I guess that they're right but I'm not looking forward to having another hole in my body and having to tape up the tube. One thing that I don't understand is that some people are telling me that the food(?) goes into the tube from an IV bag and others are telling me that I will be putting it in a big syringe and pumping it in so I'm confused. I would appreciate knowing what others here are doing and what kinds of things they are able to ingest through the tube.

 

[kelly]

Beth..My Mom is making my hubby a g-tube holder tonight. If it turns out ok...I will ask her to make you one too. I know what a pain in the neck it is to do all the taping..my hubby is hairy..so it was painful as well. Rose.....you are a trooper..I am glad you drank that wine..and had a little bit of your salad. I know it is warped, but I laughed out loud about the choking in public. This has happened to us too...everyone looks so shocked...but no one asks if we need help. Yes..this is messed up. Hope you all have a restful night..just tucked in my hubby.

 

[Zaphoon]

Rose,

What are you going to do with the rest of your uneaten $9 salad? I'm hungry!

 

[sharonca]

Tape? What tape? I don't need no stinking tape!

I used press and seal (not my idea but can't remember who to give credit to). This was while I was healing. I put press and seal over the tube and site while showering. I did use gauze and tape while healing for a few weeks. Now I just tuck the top of the tube into my bra. Stays in place and no problems. Don't know what to say for the hairy male pALS.

Sharonca

 

[BarryG]

Tape, what tape?

Hi Sharon;
Thanks for the bra idea. I once had a girlfriend who needed to wear a bra about as much as I do and she wore one so...

 

[brendapals]

my, my, my,
the things I have missed with no computer for 2 days!


I'm not hungry, but gee rose, I hope you got to share the rest of the salad with someone! thank goodness for wine.

Yeah, this pretty much sucks, but it's the fun stories with our "cyber buddies" that will keep us going strong!
take care all,
-b

 

[BethU]

Barry ... I'm using tape to hold the tube in place. I also occasionally use the tuck-in-bra solution. (I guess guys could get the "man-zeer" that Kramer invented.)

It's only been a couple of weeks, but already my skin is getting irritated (and so am I ) from all the taping/untaping. The tube has a kind of nozzle at the end away from the body, plus a clamp half way down, so there are little, hard, bulky items to tape in place.

I use a plunger-type tube that fits into the nozzle at the end of the tube ... have never used the plunger part, as I'm only doing liquids with it and they said to just let gravity take over ... so my husband does the taping and pouring into the tube, and I hold the tube up like the statue of liberty. They recommend the feeding be done lying down. We tried it once with me sitting up, and it was a mess.

I took my first full shower with it yesterday, and had no problems. Just removed the dressing and let the tube dangle, and carefully washed around the opening (which looks to me like a bullet hole. I don't know if this gives me street creds or not). I'm not sure how long we're supposed to use the dressing. The gastro guy said it's mainly to protect your clothing, but I don't see how any food material could leak out. I had very minor bleeding ... just a spot or two ... the first week, but the gastro said that was expected.

It's not attractive, but it's also not gross. Just a boring chore. But it is a solution to one of the BIG problems with ALS, so more power to whoever invented it! I like simple solutions to complex problems! One less thing to worry about ...

 

[rose]

LOL bullet hole, only you Beth!

Thanks for all the collective support! It is a different world we've stepped into, isn't it!

Now for today (while my soup gently warms on the stove)

I thought about resurrecting Beth's vent thread, also considered that maybe we should just have a group gripe thread (actually thought this was a good idea) but, right now, just adding a tag onto this one.

I apologize in advance, it is long....

Today, I had to go see my glaucoma specialist because yesterday, and the day previous to that, I thought I had what were migraines, but was not sure because the headache did not respond as well as it usually does to my prescription migraine meds. And, as a narrow angle glaucoma attack is similar, and its been a while since my pressure was checked (sounds like I'm a set of tires) I was already thinking maybe I should go see her. But then yesterday, when I started to put in my contacts, I realized my eye hurt, like it was bruised, and it hurt to turn it in my head. I called and there was not time enough for me to make the drive and make the only appointment opening yesterday, so I went this morning.

Big sigh inserted here, as in: why can't anything be simple!

Background info: If one has narrow/closed angle glaucoma, the eyes cannot be dilated if there is a question of the drains being narrowed, because it can cause too much pressure.

My doctor came in, I gave her the spiel, and we talked about the ALS a little too because she hadn't seen me since 2007. The tech had already put some sort of drop in my eyes, then the doc put in those staining drops into my left eye that was the one which was hurting. She said later that the stain immediately zoomed in and coagulated on one spot of my cornea, pooling together there (although she used the technical medical jargon "it zoomed", with all of the doctors I've seen lately, I was able to get what she meant, LOL...she does not know why this happened as she did not see any evidence of a scratch, she said it was like a patch of an area. However, my eye also immediately ballooned up pretty much instantaneously, never had a reaction before, so, she put in an allergy drop and some other one to counteract the staining drops and get the swelling to go down. She looked in both eyes, looked under my eyelid of the eye that hurt, checked the pressure, checked the drains. Found that my drains had narrowed to the point where she did not feel it was safe to dilate. Tried looking in my eyes without dilation with the prisms. and guess what she saw then? My optic nerve in the hurting eye is enlarged. Its puffy. She said its not so bad that it has lost its definition, the edges are still defined, but it is either inflamed, or something is pressing on it from behind my eye. When was the last time I had a head MRI? etc etc. She did not feel comfortable letting me leave without first using the laser to deepen the drain she'd made in that eye a few years ago, because until this was done, my eye can't be dilated, and without dilation she can't get a better look at my optic nerve.

So, lefty got zapped again, and I go back in a week to get rightie done, and have my left one dilated and hopefully see that whatever was going on with my optic nerve has gone away on its own. That way I don't have to find a new forum for those who are afraid they have a brain tumor, although I'm sure there is one out there somewhere, but I'm certain that the members aren't as cool as the ones we have here.

Going to eat my soup now..... really sorry I can't share the salad, but for those of you that can actually eat salad, and taste things, if you haven't tried it, by all means stop by a local Chili's (if you live in the US that is) and get one soon. 8)

 

[ktmj]

Hate to interrupt the serious part of the thread, but if I ever have to have a PEG can it be tucked into my Speedo instead of a bra?:wink:

 

[rose]

Interruptions are the best part if it means getting away from doom and gloom ktmj!

 

[BethU]

ktmj ... you tuck a bra into your Speedo?

:razz:

 

[BethU]

GEEZ Louise, why does all this crap keep piling on ?!? Surely you have worked off enough karma for one lifetime, Rose. It's time for the universe to cut us all some slack.

Will be hoping and praying that there is no tumor ...

(and your idea for a vent tent is a great one.)

 

[BarryG]

Rose, stay with us, we need you, don't go to the tumor forum.

We have Chili's restaurants in Canada and I just checked out the menu and guess what? They have soup! The chicken salad looks good too :smile: