The "i appreciate bethu thread!"

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Interesting link ....
any opinions?
 
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Add me in as an admirer!

Beth...I am ever grateful for your very honest way of "tellin' how it is"! I would rather know....but I'm also grateful for your wicked sense of humor when it comes shining through!

I hope this rough spell doesn't hang on too long!

Thinking of you...

Tracy
 
Hi all I found this website...chinese medicine..chec it out an see what you think
 
Yes James I have an opinion and I am the one deleting your posts. No one can cure ALS and I resent new members coming here to post entirely false and misleading claims from a seller of false hope. If you would read the forum terms of service and rules you'd know how strict we are here about spammers. If you do have ALS and are looking for information then you've found a good place, if you're trying to sell crap, you might as well move on.

AL.
 
Someone with 15 posts trying to get in a link that says they can CURE ALS sure makes me suspicious.

AL.

Also James it is polite to not hijack someones thread with your own agenda.
 
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Omg..I am just putting something out there..And to be treated this way by you all as someone who have just been diagnosed is a shame.Western doctors dont know it all ok! coming fom a family of Drs.
I am sorry but yes I am new here and dont know how to post very well.I won't again.Sorry you feel that way.God Bless.
 
Don't make assumptions.I was trying to help in discussions.
 
Read my first post..and stop being so grumy....you know being happy is half way to a cure.Thankyou.I will not post again.
 
I appreciate BethU

Beth, you were the first person on this forum that I sent a message to. You were my first "real" contact with ALS. This is not a pretty disease but you have made it seem like someting I can find a way to live with. You said to me, after the horror of the realization (or something like that) you realized you were still living day to day and not that much had changed. It helped me calm down and realize that I, too was still alive and besides sounding like a drunk or drug induced zombie, I was still functioning. Really, I began to see that I just may be able to endure. I have my moments of panic, but for the most part I am accepting and willing to go on with the fight. For this I thank you.
I started a drug study for the emotional lability and last week at Mayo had a complete meltdown and all I could do is look at the Dr. and say, PLACEBO! But after 3 months I will get the real stuff. I find that I only have episodes when I have something to be upset about. So my plan is to try and not get upset over anything. Sounds good, doesn't it? But, when i do have a meltdown, I start yelling, the disease, the disease, and people back off. I wonder how long this will work? But seriously, if I have ever had a question, or problem and no matter where I search, here, google, or any other place, your name comes up right along with Rose. I don't know why we have this disease but I do know that when it is all said and done, you are there to answer any question or to point someone in the right direction to an answer. For that we are grateful.
Besides that you are a wonderful artist! You give so much. Thank you.
NancyS
 
Back on track

Ok then, now that we're over that I just want to say how much I have enjoyed and appreciated all of your wisdom, witticisms, advice and your rants since I have been coming here Beth.

You make a lot of good points but I want to ask you about #4, your losing weight since your PEG tube. The first week that I had my tube I lost about 3 pounds but I have gained it back in the last week. The formula that I use is called Resource 2.0. It comes in a 237ml tetrapack box (I don't know how many US oz that is but it's about the size of a juice box) and it provides 480 calories compared to 360 for Boost Plus Calories or 250 for Ensure in the same size. My dietitian said that I should take 2 or 3 of these a day so I have been doing that to supplement my regular diet and chocolate/banana/peanut butter smoothie breakfast. I order the Resource 2.0 through the government but it is made in the US by Nestle so it should be available there. I hope that you can get your tube to work better, it may as well be useful after the trouble that you went to to get it.

Take care and pound away,

Barry
 
James, something along the lines of Hey guys I just read on a site that they can cure ALS. What do you think. You would have got a warm reception. I'm not grumpy. I'm protective of my site and yes it is David's and mine. If you had any idea how many times in the past 4 years people have joined and did exactly as you did which was post a true scam site. Selling false hope and ripping people off. You post the link, people go there just to see what it's about. They now have your ip address and know you've probably got ALS. Then you get all sorts of crap mail from drugs to porn. I don't want to do that to people I consider friends. That's why we don't allow links like that, chinese or otherwise.

AL.
 
Forget it...there are actual hospitals ohr than western med. I'll leave it there Good bye.Don't take your anger out on people.do asyou say LIVE!
 
Everybody ... thank you so much ! I think we all have rotten days ... we wouldn't be here if we didn't ! But mostly, I'm really enjoying being alive like most of us here. I was just trying to accommodate those who felt I should vent more. As you said, Al, I can still stand at the counter and pound away, which not only lets me vent, but also gives me a little exercise. :lol: And screaming (when I'm alone in the house) is strangely satisfying, too. Let it out!

(Do you remember the scene in "Analyze This" when the shrink tells Robert DeNiro to get rid of his angst by hitting the pillow, and DeNiro whips out a gun and shoots it? That's my kind of venting!)

Barry ...that supplement sounds great. I'll get some. I'm trying everything to add more calories. (Which is a little ironic after a lifetime of dieting!)

Joel, thanks for your concern. The hassle with the BiPap is because I live in the good old USA where getting health care is a competitive sport. Getting the settings right is not difficult unless your doctor ordered the wrong ones to begin with, and it takes a month or so of arguing among the pulmonologist, the insurance company and the vendor as to whose fault it was!

'm sure your wife is not suffering, Joel. That was a joke ... although considering what our caregivers go through, there's a lot of truth in it, I think. Caregiving to a PALS can be hell on wheels, as many on this forum can testify.

As to ALS not being fatal, I have no issue with how you define cause of death. I do, however, kinda object to those who say to a terminally ill patient (no matter what the cause), "you'd get better if you only tried harder," which a friend of mine kept telling her brother as he died of lung cancer. A little blame the victim there. Mind and body are connected (or the same, actually) but sometimes all the positive thinking in the world cannot wish cancer cells away. It can, however, help give you the strength and the endurance to stick with the treatments until, hopefully, they work.

Al: About whether my glass is half empty or half full. If it had rum in it, it's completely empty.

You guys are the best, and I love you all.

Kim ... what a lovely gesture! Thank you. I think YOU need a Zaphoon Celebration Day !
 
Hi Beth....You 'are' the best. Along with the rest. Thanks for being our friend! :)
 
Hi Beth, please know that I love ya to pieces and have great respect for you and what you post!

I find myself getting protective and upset with the medical system when I hear that something like setting up a bipap to be comfortable for a PALS has to take so long! I hope you did not take it as a criticism of you because it sure was not meant to be.

I am very different than most people and have been around technology all my life so if something is not right I change it and then tell my RT and/or my pulmonary doctor.
It wasn't 5 minutes after the RT left me with my bipap that I had it all figured out how to change the settings. My first night with it was all it took to get the adjustments correct for me. I can not imagine having to wait for someone else to make changes. You don't know what settings are comfortable until you try to sleep with them, and they change between day and night use.
I have talked to a number of PALS and helped them with this.

I totally agree with what you are saying about the misery some PALS put their CALS through and I have also called some and reprimanded them for doing this! All PALS should be doing everything they can to make a CALS life as easy as possible - and tell them how much you appreciate them!

On all your other points I totally agree!

Thanks for persevering and continuing to share with us.
 
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