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I just wish we could see some results from all the publicity put into this. For some reason it makes me feel wrong...like it is a big commercial and although we desperately need people to be more aware of ALS I am just not sure this is the "right" way. But I am not very trusting anymore and maybe with time that will heal.
Didn't realize it was a sore spot with you. I will not mention it again except to point this out:
That's $62.5 MILLION dollars in just a month or so. I don't see how that is wrong, and people ARE becoming more aware of it, talking about it, finding out what it is. Many had no idea what it was, but now they are learning. I don't see that as a bad thing.
Anyway, I won't mention it again. Sorry to upset you.
I just wish we could see some results from all the publicity put into this. For some reason it makes me feel wrong...like it is a big commercial and although we desperately need people to be more aware of ALS I am just not sure this is the "right" way. But I am not very trusting anymore and maybe with time that will heal.
Dear cyn et all.
I think that we can all agree that the increased awareness of the disease is a good thing and the huge increase in donations to the national als association is a very good thing. At some point something good will come of it.
I do understand your frustration that its benefits are not immediately felt by those like your husband for whom it is "too little too late" and yourself who struggles daily with the expenses of having a totally incapacitated husband; too much to do just to try to keep your head above water, and very limited resources.
The recreational aspect of this fund drive....the "lol" are at times a unseemly.....and seem disconnected from the goal. There is no way that the dreadful seriousness of ALS or Altzhiemers or other diseases are fun, or funny, and that must be hard to watch, but the increased public awareness and increase in resources to the ALS association will be of benefit.....I trust it will.
That's $62.5 MILLION dollars in just a month or so. I don't see how that is wrong, and people ARE becoming more aware of it, talking about it, finding out what it is. Many had no idea what it was, but now they are learning. I don't see that as a bad thing.
Anyway, I won't mention it again. Sorry to upset you.
No, it is not a sore spot with me and I appreciate you mentioning it. At first I was excited about it but then I saw where the money is going nationally and not to the individual ALS centers where they do so much research too. You did nothing wrong and forgive me if I came across as upset--that is the problem with communicating on the computer and not in person. They did and still are raising lots of money and I do hope it will help find some answers for the future ALS patients. I know it's to late for my DH and maybe that hurts just a little too. This disease has been around over 70 years--that is a long time to not have anything at all to even slow it down. I am so skeptical of where the money goes but I pray it is going to find a cure! Thank you for your post and sharing some really good news and again I apologize for coming off as upset....times are difficult for me right now but you did nothing wrong!
I think that we can all agree that the increased awareness of the disease is a good thing and the huge increase in donations to the national als association is a very good thing. At some point something good will come of it.
I do understand your frustration that its benefits are not immediately felt by those like your husband for whom it is "too little too late" and yourself who struggles daily with the expenses of having a totally incapacitated husband; too much to do just to try to keep your head above water, and very limited resources.
The recreational aspect of this fund drive....the "lol" are at times a unseemly.....and seem disconnected from the goal. There is no way that the dreadful seriousness of ALS or Altzhiemers or other diseases are fun, or funny, and that must be hard to watch, but the increased public awareness and increase in resources to the ALS association will be of benefit.....I trust it will.
No, it is not a sore spot with me and I appreciate you mentioning it. At first I was excited about it but then I saw where the money is going nationally and not to the individual ALS centers where they do so much research too. You did nothing wrong and forgive me if I came across as upset--that is the problem with communicating on the computer and not in person. They did and still are raising lots of money and I do hope it will help find some answers for the future ALS patients. I know it's to late for my DH and maybe that hurts just a little too. This disease has been around over 70 years--that is a long time to not have anything at all to even slow it down. I am so skeptical of where the money goes but I pray it is going to find a cure! Thank you for your post and sharing some really good news and again I apologize for coming off as upset....times are difficult for me right now but you did nothing wrong!
I don't think it would be possible for you to feel any differently than you have expressed, Cyn. Absolutely no apologies needed...
From what I've read and learned, ALS research has been underfunded, probably partly due to the public in general's unawareness of this condition, and it may be that a publicity campaign such as this one will bring that awareness to light, an uptick in the funding, and some progression in finding a way to slow down or stop the progression of the disease. As Elston said so eloquently, that's all we can hope for..
I just wanted to mention that when they were talking about this Ice Challenge on one of our local TV stations, they mentioned that people could donate to the local ALS center ( or clinic, I'm not sure which it is), and they announced the pertinent information to be able to do so.
I know one can always donate to a local ALS clinic, or center, but I was glad to see that pointed out to viewers when they were talking about this Ice Challenge on the TV. And I keep wondering about the possibility of directed donations- so some of that money could go to individuals who need it?
In any case, ((((((Cyn))))), here's a little hug, along with some heartfelt hopes that you'll feel the presence and love of the Good Lord Who made us all, and some comfort from those who care about you...
My mother had a relatively fast turnaround, it was five months from the start of everything going downhill (in a serious way) to the funeral. I do not know if I would be strong enough to deal with the aftermath of ALS, you are a very intensely powerful person to deal with that.
I am so sorry for your loss Thalle. Yes, once ALS takes it's turn downhill it seems to gain speed and things happen very quickly. With many I know it's undergoing any kind of surgery that seems to weaken the body and a person with ALS does not bounce back like a normal person. So having any surgery when you have ALS should be seriously discussed before hand as it will likely lead to the end even faster. With us my DH was rapidly losing weight so he had to get the feeding peg. We noticed decline in his body and health after that but figured ok we can handle this.....then the trache and that was the straw that broke the camels back so to speak. Had he known he would end up in bed on his back from now on he said he'd have never had it done. The doctors told him he had about 3 days to live if he did not get the trache and ventilator. He "walked" into the hospital to get the trach, was using the computer with his hands and now a month later his hands are curling up and although his legs are still pretty strong his abdomen muscles are gone along with the neck. That was the first to go since he has bulbar ALS. So even though some parts still work the main parts don't and I have been advised not to attempt to move him with the hoyer lift because of the ventilator--we'll see. So he can think, move his legs and arms, use his hands very little and lay in bed trapped inside a body that is dieing. Of course it creates terrible panic attacks which will eventually harm his heart so I must keep him pretty medicated and he sleeps much of the day. He was so sad he missed his car races on Saturday night--just cannot stay awake without the anxiety. I will live forever seeing that fear in his eyes. I just want to do my best to keep him comfortable and let him know he is loved. We talk about God a lot--I told him how lucky he is to be going where there is no more pain or tears. We cried together. This is the hardest thing I have ever done--I would never choose to do it, was not asked but will do my best. Over the last couple of years I have gained a lot of passion for other caregivers and have a much better understanding of what they go though and gained so much respect for them. Some have been doing this for many years.
As far as the aftermath, for me personally it will be a relief not to see someone I love suffer so much, not to worry constantly if I am doing things the right way, to know he is in a much better place and eventually I will join him there. No it won't be easy and a part of me will die with him.
Last edited by cynwldkat; 08-25-2014 at 07:57 AM..
Reason: adding to it
What a beautiful post Cyn. Following you on this terrible journey made us all aware of how tough caregiving can be. My journey with my sweetpea seems so easy compared to what you and your husband are going through. I so wish there was a way I could ease your pain, unfortunately there is not. Big hugs.
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