Bachelors Dream, no not that

[BarryG]

You know the old bachelor trick of eating over the sink so that there are no dishes to wash, well I am now at the point where almost all food is more trouble than it is worth. Because just about all of my nutrition goes through my peg I no longer need plates, bowls, cups, knives and forks, in fact the whole kitchen is pretty much wasted space. Except for my blender and one glass for my morning smoothie, all I need is my syringe, water bottle and my supply of formula and I'm all set.

With our son gone back to university there is only Beth here to eat real food so there aren't too many dishes to wash which is ok with me because as Beth works and I don't I am the official dishwasher. And, ironically, I still do a lot of the cooking (because I like doing it) even though I cant eat any of it.

There isn't really any point to this post or this thread but I just had to say something to mark the end of my mouth as a gateway to my stomach. Just feeling grumpy I guess. :(

[thelma313]

You have a right to your grumpiness, Barry. This not eating thing sucks!

So often I wish that I could bring my dad his favourite foods. This was especially the case when he was in the hospital. There's not much to do in the hospital. I remember when my grandpa was in the hospital we'd bring him all sorts of edible treats and his face would light up. It was so heart warming to watch him enjoy something he loved. What I would give to see my dad do the same.

On a different note, you sure do sound like an ideal husband, Barry! You cook and do dishes? What with that new avatar too, I think you doubled your female fan base this week. :)

[dldred]

Barry,

Sorry you have the grumpies today, maybe to make you feel better you could come to my house and cook for us. To show you how bad I feel for you I would even let you do the dishes. Hope you get over the grumpies and have a good day.

Dana

[MarianneS]

Barry,

I understand exactly how you feel. Monday was my husbands' birthday dinner with family and how I wished I could partake of the rib- eye steaks, baked potatoes and salad. I did have a bit of ice cream, whoopee!
The other thing that gets me, I never focused much on it before, is how delicious all those tv commercial meals look.

I share your grumpiness but then remember how they peg enables me to eat without the constanct choking. I've come a long way from never getting one, remember those posts?

Hang in there.

Marianne

[Blackpool]

Not eating is like loosing a friend who was with you everyday.How true when people say as we age we revert to babyhood (formular)Just to make you grumpier the weather is changing this weekend, I wouldn't be surprised if your neck of the woods gets snow. I leave for Niagra Falls Sunday, hope the weather is good there.Hope your day gets better soon and feel free to do my dishes and cooking at ant time.

[GlenBrittle]

Barry,

OK ... lets recap

You post your stud-muffin avatar and take away all of the ladies.

You say that you cook and clean .

And "Poor wittle Bawwie is gwumpy"

AND YOU WANT SYMPATHY FROM THE GUYS ???????

Not happening. Booowaaahahhaaahhaaaaaaa



All kidding aside , I feel sorry for your change in eating habits. I for one, do not look forward to the same issues, knowing they are in my future. Being the cook, you can still taste test though can you not ?

Glen

[KeeKer]

Barry, so sorry to hear that you are feeling down. But Beth is really lucky, cooking and cleaning? Where did she find you?

[DgtofTNfan]

You are definitely entitled to a grump day! My Dad was the cook at home as well. He loved to play with spices, etc. for a soup and watch NASCAR just for something to do and nibble before he got to the point where he was unable to eat. We would eat at his house often. He use to joke with us that since he stopped eating/cooking we were all gonna starve but at least he had his PEG.

It sucks that you can't eat as food can be comforting when your grumpy. Vicious cycle.

You are a great guy with such a positive attitude that you will find something else to occupy your mind.

It is about time for this weeks forum follies which is always a fun distraction.
Dana

[BarryG]

Thanks everyone for letting me grump, I am better today. The sun is shining and I am looking forward to spending some time with friends this weekend. We are doing a hawk watch which is where we go up to a forestry tower and watch for migrating eagles, hawks and falcons. It sounds silly I know but it is mostly just sitting around in a place with a fabulous view of the Rocky Mountains and foothills with the fall colours. Beth is really more of a birder than me but even I get into the big birds like eagles and hawks.

Marianne, I am glad you are doing well with your new peg tube even though you had a hard time with the placement. I was reading in the latest National Geographic in a section entitled "Human Limits, Starvation" and it stated "Lose 30 percent of body weight and death is imminent, though disease will likely kill you before you starve". Before I got my tube I lost almost 25% of my body weight so I was starving. Now I wish I had been more proactive and had kept better track of my weight because I didn't really realize how much I had lost and how it was affecting me.

I would love to do a cooking tour to all of your houses as long as you all have dishwashers (human or mechanical, I don't care). I don't do windows and like nature, I hate a vacuum.

Just for fun here is a link to one of my fantasies, don't worry it isn't too racy!!

FoodPornDaily (SFW) Extremely Tasty Food Photos (http://foodporndaily.com/)

Beverly, I hope that you have a great time at Niagara Falls!

Glen, thanks for your reality check (except for the stud-muffin bit :shock:) I needed that slap.

Barry

[GlenBrittle]

Barry,

All in fun my friend. Just pushing for a smile from your grumpy face.

Plans for the weekend ?

Glen

[hopingforcure]

The hawk is awesome. I think watching the hawk's sounds amazing. I had to laugh at the eating over the sink thing. My hubby will do that with deserts late at night. I always kid him that he thinks that the calories do not count, see you were one of those guys also. my husband sell's kitchens and me, well if the house did not come with one, I would not want it. I am not a good cook, the only thing I make well is reservations. Love food, hat to get the kitchen dirty..

[tdamess]

barry i could come cook for you ....but,....when you see it you won't want my cooking.. then you would say ( gladley ) oh i can't eat that i have a peg..maybe that will chase your blues away..as you wonder who taught this chick how to cook- they need to be shot

[BarryG]

Hoping, I love that saying "the only thing I make well is reservations"!! Your husband is right, if there are no dirty plates there is no evidence and nobody knows about the calories at least until the pants get too tight.

tdamess, right now if you were to make me something that I could eat you would be the world's best chef in my eyes. The only problem is that I can't tell you what that "something" is :confused::confused:

Marianne, I want to ban all food commercials on tv, they drive me crazy. All of the cheeseburger and pizza ads are now in the same category as the fancy car ads, totally useless cause I can't have any of them.

Can you tell I'm hungry? Time for another liquid snack, YUM YUM!!

[joelc]

Blend all those foods up, not all at once - LOL, and put them through your PEG. Then pray for a burp so you can taste them. It is not as good as through the mouth but it is better than nothing.

[BarryG]

Joel, I am getting closer to doing that. I am just not as rebellious as you ;) I have a clinic visit coming up and am going to have a serious talk with my dietitian and speech language pathologist about what I can and cannot eat and how I can "eat" it. You know how they are, "Never put anything in your peg but what we tell you to and that is only formula". Well that was OK when I could still eat but it is getting pretty boring now. Don't get me wrong, I really appreciate all that they do for me and all of the help that they have given me but I need more than vanilla burps.

[tdamess]

i really am so sorry you have to go Thur this , this may sound dumb but , if they come out with a device that helps you breath or does the breathing for you ( implant)maybe with some luck they can come up with a swallowing device maybe also and hopefully soon as there are a lot of people with this problem , ....wishing you the best

[joelc]

GRRRRR

I just lost what I wrote! I hope I can remember so I can recreate it.

Barry, yes, I am a bit rebellious when I have to be! I was also forbidden to do anything but using formula but my system could not tolerate it. So I did it anyway and when the dietitian found out she was not too happy but realized I was going to do it regardless of what she said.
Her concern was having the tube clog because most blenders are not capable of liquifying food well enough.
Once she saw how well our Vita-Mix blender worked she was okay. Now she just asks how things are going and we are really good friends.
I also told her that if my tube clogs I would go out to the shop and use the air compressor to clear it, just a short blast of air should do it! She shook her head and said she believed I would actually do it. Then we had a good laugh.
I also told her that if she thought the formula was really that good an idea then she should try one - she refused and the discussion was over.

[hopingforcure]

Joel,
I just had to send empathy for I have pushed the erase button one time to often. Had to share the pain.. It is always a good or long thought...

[BarryG]

Thanks Joel, I'm going to experiment with my blender and I'll let you know how it turns out.

[tdamess]

lol - good for you joelc

[GlenBrittle]

Hey guys , I am only "In Training" with my Peg right now. I am still a "fullface - feed the pie hole" person.

When you are pushing food through the tube , how fast do you do it ?

I suppose everyone will be able to handle it a different rates, but my flushing 4 times daily takes seconds. 50mil in that big syringe goes really fast.

Do you feel different when you are full ?

Can you get cold stuff in there ? I have a major ice cream habit.

[joelc]

You will know if you are pushing it through to fast so experiment and see what is comfortable. I have found you can put anything you want through your tube. Just make sure it is liquid enough to flow without clogging.

[GlenBrittle]

"Adventures in PEG Feeding" coming to a tube near you in the future.

Oooo has anyone had to pump in Pepto-Bismol through a PEG ? Look ma , its pink !

Check List:

Vitamix - not yet

Peg brush - not yet

Jack Daniels - not yet

I guess , the the sig says "Im not ready yet" :twisted:

[BethU]

Glen, you can use gravity feeding if the bolus (isn't that an appetizing word?) is fully blended and liquid. With gravity it goes in pretty quickly ... a few seconds a funnel full. I don't know why anyone would need to use a plunger except to squeeze thicker stuff through.

Yes, you can feel full ... but somehow not in the way you feel after an enormous meal by mouth. I feel a little queasy when I've taken too much, because I add a lot of extra water too.

Yes, you can take cold stuff. My stomach loves an ice cold Diet Coke in the morning, all fizzy and artifical chemicals.

[KeeKer]

Diet Coke? Why not the real thing?

[BethU]

There are some things ALS is not going to get, and the completely artificial chemical concoction of Diet Coke is one of them. It has a unique nasty zing! I don't even need taste buds for my tummy to know it when it feels it coming!

[KeeKer]

It doesn't work with real coke? How scary! That's a really neat thing to happen though! Take that ALS!

[GlenBrittle]

Keeker , I think Beth is just being feisty. Good for her.

I used "Real Coke" last night to clean my tube .

Glen

[Zaphoon]

"Real Coke" is a white powder and I don't know if I'd advise putting that thru the tube.

[KeeKer]

Now don't go getting all literal on me !:)

[BarryG]

So how do you snort Coke through your PEG tube? I don't seem to be able to get any vacuum going.

[Zaphoon]

You might try using the exhaust end of the vacuum to bow the stuff through. I'd try experimenting with powdered sugar first. Cheaper if you blow it a few times. Ha, ha!

[handinhand]

ok I am blond but I have to ask this question anyway???? What difference does it make what kind of liquid goes in the tube?? If you don't see what is going in how would you know what it is????? I went to play cards with the gals on the Ranch today and have lunch. I ate a litle egg salad out of the bread and some jello... Watching everyone eating homemade breads all kinda of chips and dips, apple pie.... I still wasn't done eating my jello when everyone was done. I felt REALLY REALLY sorry for myself. I took my apple ipod to try it out with my friends. I didn't even take it out. I am way too slow to try and keep up with conversation. Feeling really sad and depressed tonight.

[BarryG]

Linda, I really, really know what you mean and I am so sorry that we have to go through this. Yesterday I was feeling exactly the same as you felt today, I couldn't bear the thought of not being able to eat again and it got me very depressed. I don't get depressed very often but yesterday I was tired as I hadn't had a good night's sleep the night before and so for a while I hid away feeling very sorry for myself.

It is awful not being able to eat especially when you are socializing but that is the way it is and there is not much that we can do about it. At least with a peg tube we don't have to be hungry, not the same as actually eating I know, but it's not that bad.

Today was a better day and this evening I made some bran muffins for my wife and a friend and even though I can't eat them they smell good and it made the others happy.

I hope that your friends can learn to give you time to be part of the conversation because we are not the only ones who have to make adjustments. Keep practicing with your new "voice" and your friends will appreciate your contributions to the conversation. I have been speechless for a while now and am only now having somewhat normal conversations but one thing that I can say is that it is harder in a group and especially in a loud group.

In September I had the pleasure of visiting with Joel and his wife Christine at their home and we spent all evening talking, him with his real voice punctuated by the sound of his ventilator and me through my fingers to my artificial voice from my netbook. We talked until my fingers hurt but we talked just like normal people so when there is a will there is a way.

Do you have a speech therapist that you work with? My speech language pathologist is the most important person at my clinic as far as I'm concerned and we talk often with both of us learning.

I hope that you have a better day tomorrow and I know that you will stay strong to give all of us here your help.

Barry

[KeeKer]

I'm so sorry that you two had crappy days!:( But Barry is right! We will wait because we really want to hear what you have to say! We are happy you are sitting in the room with us!Sorry that you can't eat, but we understand and will wait for you. Any conversation, no matter how slow is better than none!

[joelc]

Sorry you guys had a crappy day, but I am glad things seem to be better today. It is quite natural for these times to happen, the trick is to get over them and not have them every day. These short periods of time are actually a healthy thing, and part of the grieving process. They help us adjust to the new reality of our disease.

Barry, Andrew, Christine and I had a wonderful time, I just wish more of that could happen.

I was reminded, yesterday at our support group meeting, how important it is to be considerate of others that can't talk as fast. We had a new person there and although she has ALS, bulbar onset, she absolutely monopolized the conversation and constantly interrupted others when they tried to talk. I can still talk but it is a bit choppy because of the vent. She would ask me a question and then interrupt me with a different question before the first was answered. She was doing that to everyone. I felt particularly sorry for another person using a light writer to talk because he would try to respond and by the time he did the conversation was 3 topics past where he was. We eventually gave up trying to respond. It was the longest 2 hours I can remember. We were exhausted by the time we left.

It is very important for people to be patient and considerate of others and wait for them to respond. What's the hurry anyway? LOL.

[BarryG]

Joel, I hope that "Chatty Cathy" can come to terms with what is going to happen to her. It must be very hard for a normally talkative person to adjust, maybe she is just trying to say everything while she still can.

One thing I have started to do is put the context or the topic into my replies so instead of saying "he did this", I say "Bob did this". The same goes for objects too, instead of "it", I say the name of what I am talking about. It takes a little longer but if the conversation has moved off of the topic then everyone knows what you are talking about and you are reminding them to not change the subject until you are done talking.

In E-triloquist www.etriloquist.com/ there is a preprogrammed noise that sounds like an elephant trumpeting which can be used as an attention getter, a conversation stopper or just for for fun. I have used it! :-P

[handinhand]

Hi Friends...smile! Today is a much better day for me. I have kept myself so busy this week that I think I was just worn out. Not a good thing to do... Finding out the hard way. We need to pamper ourselves and deserve to ..... My friends and family try really hard to stop and listen to me when I talk. They are really trying hard to adjust to this also. I just need to buck up and get a little stronger about the loss of my voice. Like that sweet little five year old boy said, { the machine wouldn't talk if grandpa wasn't making the words come out of the machine.] How true. Children are soooooooooooooooooo wise..... Thanks for all the good responses. appreciated more than you can know. Big Hugs, Linda

[BarryG]

Linda, I am glad that today is a better day for you. Take care and keep on talking.

Barry

[joelc]

Linda, it is good to hear today is better! I am finding that my biggest enemy is being tired so I try to make sure I have a minimum of 10 hours a night. If I don't that is when problems happen. Thankfully they are few.

[GlenBrittle]

Today has been a good day. I went grocery shopping for the first time in 8 months.

There were many people saying "Good to see you out" "Looking good" "Keep going".

People will back off when they see the chair coming.

But now I am tired. Need to do it more to build up some stamina.

Glen

[joelc]

Save your energy my friend, it does not work that way. LOL.

[GlenBrittle]

Ya , I know , its just the freedom is clouding better judgement. For now ;)

Thanks for the reminder my friend.

Glen