Old 08-13-2015, 06:20 AM #1 (permalink)
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Default Still walking!

First off thank you for being here! It is the only real place I have found I can go and be understood!

So we went to our 3 month check up. His breathing has worsened some. Feb We were at 81%, May 63% so doctor ordered BiPap, now 61% breathing function with 41% diaphragm strength. He has gone from almost 200 lbs last Oct to 143 lbs now. Of course I am very concerned. He is telling me all the time how exhausted he feels. Plus he can't catch his breath! He started with Bulbar onset. So his speech is impaired, swallowing too. That's why the G tube put in April. He drinks a lot, he is an alcoholic. With me being the messenger to the doctors I have shared this information as well. So he is not really taking the formula the way he should, he refuses sometimes 2 days at a time. I'm lucky to get 2 or 3 cans in him daily.
Plus it seems like it runs straight through him. I am afraid when he drinks he will aspirate, but he insists on drinking. So here's my issue, with all of this, the doctor says he's fine, he walked in here. Really? As long as he's walking I shouldn't worry? With that, does that mean people won't die from ALS unless they have reached the stage of loss of mobility? I guess I'm ranting and frustrated....sorry to be so long winded!

Bless you all, I know even the CALS can't really understand what our PALS are going through, but know we love you and we are here at your side!
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Old 08-13-2015, 06:40 AM #2 (permalink)
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Default Re: Still walking!

You can put alcoholic beverages through the tube. Whether you share that info is up to you. He won't aspirate but...

I am sorry the doctor said that bulbar people can walk and be very not fine.
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Old 08-13-2015, 07:44 AM #3 (permalink)
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Default Re: Still walking!

Chumpy, sometimes the only thing we can do for our PALS is make them feel good.
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Old 08-13-2015, 07:55 AM #4 (permalink)
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Default Re: Still walking!

Ditto Atsugi
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Old 08-13-2015, 08:24 AM #5 (permalink)
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Default Re: Still walking!

I agree with you all, trying to give him the moments he deserves! Nikki, we had joked about putting his rum or beer in the tube. But I chickened out as I'm not sure how much would be too much too fast........
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Old 08-13-2015, 08:57 AM #6 (permalink)
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Default Re: Still walking!

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I agree with you all, trying to give him the moments he deserves! Nikki, we had joked about putting his rum or beer in the tube. But I chickened out as I'm not sure how much would be too much too fast........
Here are my thoughts on "dosing" alcohol.

First, I consider everything I put into my body to be an "input" designed for a purpose: steak and potatoes for energy, wine to relax, pills to control irritability, etc. Alcohol is no different.

My guess, from my navy days, is one-third shot of liquor every 15 minutes for a maximum of one shot every hour. A total of three shots per evening ought to keep him plenty toasted for the night.

Be aware that sugary drinks can gum up the entrance of the tube. Clean it as your doctor ordered.

Remember, the alcohol content of mixed drinks (and even beers) varies. A Long Island Iced Tea is the same as FIVE rum and cokes.

But start out with beer. Beer, I'm guessing, would be best served into a tube at room temperature. Let the foam settle to nothing. Maximum one beer per hour for a total of three beers for the evening. That should keep him very close to drunk.

Watch out! You do not want him anywhere near vomiting as he could easily aspirate that.

Hopefully, some PALS drinkers with PEG's can come along and share their experiences.

Hope he's a pleasant drinker!

--Mike
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Old 08-13-2015, 11:49 AM #7 (permalink)
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Default Re: Still walking!

Chumpy, dang what a burden you have to bear. but no use taking alcohol away at this point--it would serve no purpose other that to make him more miserable and then you as well.

the doctor that said he was fine because he was walking--what kind of a doc is he? is he an ALS specialist? because that is BS! I know many pals who have died and could still walk. Bulbar is more serious than limb onset and a different animal all together. this disease is about breathing, the paralysis doesn't' kill anyone.

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Old 08-13-2015, 07:08 PM #8 (permalink)
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Default Re: Still walking!

Sadly he is one of the doctors from the ALS Clinic....
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Old 08-13-2015, 11:38 PM #9 (permalink)
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Default Re: Still walking!

Tell the clinic you don't want to see that doc again, or find a new clinic. Life is too short (literally).

Mike noted that the alcohol content is key; if he's not eating much, even more so, and more likely to have gastro issues on alcohol through the tube on an empty stomach. I'd try to develop a ritual of food first, alcohol as dessert. If he's not keen on the formula itself, there are threads about blending real food.
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Old 08-14-2015, 02:29 AM #10 (permalink)
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Default Re: Still walking!

It was the only ALS clinic that I found in the area. It's interesting you mention the swap for food idea. I did that last month. Actually had him up to 3 cans of formula a day. Then he started saying he felt nauseous. I argued that no food and alcohol wil be bad for nausea too. He didn't want to hear it! I think he is so mad at life and doesn't want to try, just to get knocked down by the next symptom or worsening issue. He has seen what this disease does, I don't think he wants to experience any of it. So he stays drunk on o not have to feel it. I get mad and think he is throwing away his days alive and able to talk , walk, etc. but that's the selfish me. I want to hold hands, snuggle, laugh and love each other! That's all I can the no of wanting to do.....nothing else seems to matter to me. But then I look into his eyes and he is so heart broken! He said he has had a miserable life, then we found each other. He told a friend of ours a while back before this horrible disease, that his life had been stuck going no where with nothing. Then we met and he realized what life was truly about. He had been loved truly by someone for the first time. Then this...this ALS..... He said to me it hurts to know he is leaving when he just started living. Some days he acts like a real ass, yes I said ass! I think he does this to push me away. Usually the day after he'll tell me you know I'd understand if you found another man. You deserve to have a life with someone. I told him I do have a life with someon, you! Of course we both end up crying! Geeszze like I am right now! I'm sorry I have done it again, rambling!

Goodnight all, and God Bless
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Old 08-14-2015, 05:33 AM #11 (permalink)
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Default Re: Still walking!

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the doctor that said he was fine because he was walking--what kind of a doc is he? is he an ALS specialist? because that is BS! I know many pals who have died and could still walk. Bulbar is more serious than limb onset and a different animal all together. this disease is about breathing, the paralysis doesn't' kill anyone.

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Oh how I hope to be able to still walk at the end.
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Old 08-14-2015, 05:43 AM #12 (permalink)
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He said he has had a miserable life, then we found each other. He told a friend of ours a while back before this horrible disease, that his life had been stuck going no where with nothing. Then we met and he realized what life was truly about. He had been loved truly by someone for the first time.
I can relate. My wife and where married just a couple of months before my diagnosis. We had been going to doctors for a year and a half before but did not expect this. I would understand if she wanted to leave, this disease and the way it progresses is awful.

The one thing I know about love is that it has nothing to do with me and what I want -it is NOT selfish. So every day is about her and how I can serve, honor, and cherish her. I fall way short of doing this but it is my desire. And I believe she tries to do the same for me.

My propensity for red wine is well documented here as are the struggles my wife has had with coming to grips with this disease. She is doing a lot better but is still learning how to cope as am I. The only thing I know is that she is there for me, and in what ever way I can be I will try and be there for her.
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Old 08-14-2015, 07:07 AM #13 (permalink)
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Default Re: Still walking!

What clinic are you going to? The one I go to is in Dallas.

I had the say problem with formula. We home blend, and it works great. See this post. If you want more info message me. Since I've been blending I have maintained weight, stabilized my blood pressure, and gotten of bp meds.

Tracy's Power Blend
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Old 08-14-2015, 10:13 AM #14 (permalink)
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Default Re: Still walking!

Chumpy you ramble all you want...another word for it is venting, something we all need to do.

I actually don't drink alcohol, except for communion (I used to take such a big gulp, Wayne would smell it on my breath and tell me there was no way I was driving home!), but I'm trying very hard to give up mocha. It's doing nothing for my waistline or wallet. It's very very hard, it's my only vice really. I'm glad that the decision to drink it or not is my decision, no one else's.

So, if you can figure out a plan of attack for a bit of plonk in the tube, awesome. It would be awesome if the decision was your beloved PALS...
God bless, Janelle x
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Old 08-14-2015, 02:22 PM #15 (permalink)
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Default Re: Still walking!

On my diagnosis day the Doctor gave me the news and the whirlwind of lectures from the all the specialists. At the end he came back and pressed the need to keep weight, and that there is nothing else but keep doing what I normally do. Great advice when all I could think is what I normally do got me here in the first place (they should interview PALS regarding how answers like that and your experience with the "walking" comment effect PALS & CALS).

I said I normally drink a few beers after work and with meals. The Doctor gave me a funny look, as he is Muslim, but said do what I normally do. I pressed if alcohol is OK, and he said yes.

They say a shot of 80 proof is as good as xanax. Both calm the notice of facilications, soreness, and anxiety for a while (for me, two beers usually works). I prefer alcohol to xanax. I have to eat, because I am no Monastery Monk that can live off beer alone, and the beer or wine adds calories and helps my appetite.

Alcohol carries calories but not nutrition. Nutrition is the other thing that seems to calm my senses (not as quick as alcohol but ask if a belly full of something helps). Discuss the need for nutrition, and other ways to relax, and a feeding schedule that keeps him going. Its his decision and he has to work at finding his way to keep weight and sanity.

The concern of alcohol and depressed breathing needs to be in the conversation, and compromised breathing awareness between anxiety and alcohol is something I doubt any Doctor can identify. Its part of the viscous circle of awareness and anxiety that never goes away (why alcohol helps, but can only be controlled by the PALS).
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