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NvrGiveUp

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Hi everyone... hope that all of you are getting ready for a Thanksgiving feast. I know it's a crazy american holiday that probably should be called "thanks-taking", but still a good holiday where family and friends get together to spend quality time and say thanks. So for those of you in Canada and friends to the south, hope you are having get togethers with family and friends. T and I and our little white maltipoo Beijo will be driving from here in FL to VA... 12 hours it usually takes us. We are really excited because we will be surprising my dad and stepmother Wed night, then on Thanksgiving afternoon we will be heading over to surprise my mom. It's really funny how the secret almost got out because my 7 yr-old nephew thought I was coming home for Christmas and told my mom that. Hope she doesn't get dissapointed when she realizes that we are coming home for Thanksgiving and NOT Christmas. :D
T feels bad that I will be the one driving the entire trip... we used to take turns. I'll be so excited to get there I'll be fine, and I'm usually good at driving long distances as long as I have some hot coffee beside me. Our dog is really good in the car too. :) As far as T goes, we are so happy that we have the DC adapter that attaches to the car cig lighter for her bipap machine so that we can use it for long car trips. We should be just fine.
An update on T: she can still walk but very dangerously so I try to get her to use her walker at all times. She fell a few weeks back and hit the back of her head when she was walking from the bathroom to our bed. She still is feeling some dizziness if she is laying down and moves her head to quickly... we were told this is normal and could last for months. Hope not. She seems to be doing better as far as the dizziness. She still defiantly walks from the bathroom to the bed when I'm not looking... I'll see her sneaking by out of the corner of my eye... just like a little kid doing something she isn't supposed to do. :D We usually use the wheelchair when we go out and about, or this little scooter that a nice lady has loaned her (the lady wasn't using it I guess). T's breathing test (lung function test) did look slightly worse than the last time, but it didn't decline as steeply as it had the time before. Her CO2 is a little high, but they said not too high to start worrying extremely yet. Her weight is holding steady at 119 to 120 pounds (10 pounds less than when she was originally diagnosed). Her eating and swallowing is fine, but when she brushes her teeth she does get that "want-to-thow-up" sensation. Usually she cannot brush her teeth after eating. We usually brush her teeth first thing in the morning. When she is done brushing and starts to spit, I will stand behind her and hold her stomach, almost like I'm doing the Heimlich maneuver, but with both my hands folded together. This is for when she is trying to spit/cough up flem that seems to get crazy when she brushes her teeth. I will push in on her stomach area to mimick what would happen if she coughed and it seems to work well to help her cough. After a few minutes of spitting out "stuff" she sometimes still really feels like throwing up, but I talk her out of it and seems to work. She rinses with some water and then I splash cold water on her face and dry her off. Later in the day she sometimes just brushes her teeth with water and rinses with mouthwash because it is too much to use toothpaste. As far as T's outlook, she is really staying positive and somehow I am too. We know God is helping us, and we still haven't given up. Her neuro keeps trying to promote her getting a feeding tube, but T doesn't want one just yet. Her pulmonologist told us that she could wait until she went on the ventilator to get the tube if she wanted to. He knows that T wants to push it as far as she can... go as long as she can without tubes. Everyone says "when you go on a ventilator...", but we still say "IF she goes on a ventilator", meaning that maybe she might never have to go on one. Rebellious? We know.... but we like being rebellious. We did discuss if T wanted to go on a vent or not, and as of right now she said she does want to go on one if that time ever comes. She does reserve the right to change her mind though.
Well that's a long enough post for now... I hope all of you have some Thanksgiving-like joy next week, wherever you may be.
Hugs,
Pam :-D
 

l2c

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We love Thanksgiving because it's about family and not about gifts! Unfortunatel, we will miss being with family this year as Don (PAL) just had a PEG put in and we must stay here in Florida for the post surgery check-up. And Thanksgiving is our 38th anniversary!
We'll drive to Chicago area on the 29th of Nov. and stay for the month of December.....packing up the bi-pap and the cough assist machines, the wheelchair and walker, some presents I've bought and maybe some clothes....LOL
 

Al

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We Canadians had our Thanksgiving in Oct. just to be different I guess. Happy Thanksgiving to all our American friends and anyone else that celebrates the holiday. Thanks for the update Pam. Good to hear from you and T.
AL.
 

brooksea

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Hey Pam!

Hope y'all have a wonderful trip and be careful on the roads! Hope T enjoys lots of turkey and cranberry sauce!
 

CindyM

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Hello Pam and T. Happy Thanksgiving to you, too. I also love this holiday because it is only about family and not rushing around buying gifts. Cindy
 

NvrGiveUp

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buying gifts

I love Christmas too, BUT I stink at buying gifts, especially since I've been broke as a college student. Luckilly there are too many siblings in my family that we all agree to just worry about buying presents for the little ones. As far as T goes, I have a mix of sickness (not knowing what present to get and worrying too much) and then excitement to put as many under the tree as I can. This Christmas she is going back to Brazil on the 26th and leaving at 5 AM. Too soon after Christmas for me, but she had to go with her cousin who for some silly reason bought the tickets for that day. She will be there for 6 weeks this time and is looking forward to seeing the Carnival that happens the first week of Feb. I will go again the end of January to see the Carnival with her.... (credit cards are evil, but we only live once as far as I know!)
Does anyone experience more anxiety with the holidays now that their partner has ALS? We try to keep a positive attitude, but part of me doesn't want these holidays to pass by. Kind of like I wonder what next year's will be like... will we be lucky enough to make it to them? I hope to God that we will be. It's a lot of pressure to face these holidays, I want to make them as wonderful as possible. I pray that all of us CALS will have a joyous holiday season with their loved ones without too much worry and pressure, and also that PALS have an even better holiday filled with love. PALS do you know how much your CALS love you? Probably tons! :-D
God Bless everyone,
Pam
 

Icanmanz

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Pam, nice post, don't worry about it being long, it's ok! Have a safe trip, blessed Thanksgiving, and God bless!

Irma
 

liz

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Hey Pam,

Thanks for the holiday wishes. Glad to see you and T making the most of things.

Liz
 

l2c

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Pam, I know what you mean about wondering what next year will bring. I wish we could spend our 38th anniversary (Thanksgiving Day) with our family....lasy year my dear husband fractured his hip two days before Thanksgiving Day and we spent it in the hospital. Now this year we have to stay in Florida for a post-op exam of his PEG. Hopefully he will still be with us next year but will he be able to go to the relatives home is another question.
Marlene
 

georgia

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To the brushing the teeth. What kind of paste do you use? My PAL found the gel type has less foam and the gag was better.
 

NvrGiveUp

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thanks everyone ...

Hi Marlene,
I'm sorry that you and your PAL won't be enjoying T-giving where you want to be, but I'm glad that you are brave enough to make the road trip to Chicago. I hope that the weather will be nice for your drive. How is the PEG working out for you? I hope that your PAL is adjusting to it well and that it is healing as best as it can. T hates the idea of it, and just wants to wait as long as she can. I will be keeping a watchful eye on her weight though. I hope you enjoy your time in Chicago, good luck with everything :)

Hi Georgia,
Thanks for the hint about the gel, we will try that out and see how it goes. :)

Thanks Liz, Irma, CindyM, jimercat, Al and everyone else who keeps up with the forum for the support and warm wishes. I seem to be good at talking a lot, but need to get better at listening too. Take care and catch ya later...
Pam
God bless
 

Icanmanz

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Pam, God bless you and yours. A blessed Thanksgiving your way. I normally cook up a storm every year, but this year I am not in the mood. mMy son and his family invited us over to their place. It's going to tear me up, because that is where I spent my last Thanksgiving with my Rudy. He used to love Thanksgiving and Christmas. I am going to try my best not to spoil the holiday for them. It wouldn't be fair. One thing I did learn how to do in those 15 months that my son was ill, was to cry in silence. You guys have a nice one. God bless!

Irma
 

hboyajian

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Irma, Cry as loud as you want here on this forum. Losing your baby has to be the most painful thing I can imagine.
 

NvrGiveUp

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holidays ... let's ban them!

Irma,
I'm so sorry that you have to have this pain. I sometimes wonder about the same thing and can't imagine what it would be like. I hope that somehow just being with your other son and his family will get you through this holiday season... and a Lot of crying (alone if you have to). I bet that Rudy will be looking down on you and hoping that you will find some joy on Thanksgiving and Christmas... especially if they were his favorites. I think he would want you to remember the good times that you shared together, and also that he is really happy now. I'm assuming that you are a spiritual woman, that's why I'm just trying to think about the comforts of knowing that this place "isn't the end-all, be-all". Right? That's one thing me and T talk about when we feel really down. This life is great, we're all so lucky to get this chance to be here on this earth and experience it. A lot of people have to go through horrible things for some reason that we don't know. T and I think that when we get to heaven that we'll say "OOHHHHH!" like we finally understand what this is all about and why. We also believe that it's going to be awesome to be there, especially for people that have suffered so much. Part of me doesn't "like" to think about these things because we're in no rush for it to happen (who knows... I might be hit by a bus next week?), but when I have imagined T passing away... I know she's going to be up there riding horseback and galloping as fast as she can. I know she'll be running and swimming and even flying. I know she'll be watching out for me too. I bet your Rudy is watching out for you right now. I hope God can give you some extra comfort and I'll say some prayers for you. You sound like you are an awesome mom, and I bet Rudy was lucky to have you for his mom. God bless you Irma, try to keep your chin up for Rudy ....
Hugs & prayers,
Pam
 

Icanmanz

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Thank you Pam, for your oh so wonderful post. Your sweet post, and kind words reall gave me a boost. LOL! Once I make it through these holidays, I am sure I will be able to get on with my healing process. My son asked me to join him Thursday morning, we are going to the cemetery in the morning. We are going to visit my son's grave, my son is taking his brother a plate, we are going to pray, and come back home. We just don't want to forget about him, we are trying our darnedest to keep his memory alive.. May you and T have a blessed Thanksgiving. God bless!

Irma
 
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