Don't believe everything you read

[Al]

While we try to be a friendly group here sometimes people will try and post outlandish opinions and just plain wrong information as well as scams. David and I try our best to keep them out. We feel that you are dealing with enough that you don't have to listen to rants and rave reviews from disillusioned individuals. David started this site and I help with moderating as well as a couple of others. We have never taken anything from a drug company as suggested by one former member and are not pawns of them either.
Some disgruntled former members are badmouthing us on another forum. Strange that all the ones that have left here mad have gathered in one place to badmouth us here. I have ALS but David doesn't. That doesn't mean that he doesn't understand the disease or have compassion for us all.
We are not censors but do reserve the right to take out any post that we feel may be harmful to our friends on this forum. It is in the terms of service. If these individuals fail to read them and then cry to us that we are picking on them well I guess that's the way it has to be.
David and I feel we are doing a good job here and it dismays me to be badmouthed here or anywhere else.
I am not saying everything on this forum is Gospel but it will be as truthful and honest as David and I can make it.
My intro says don't believe everything you read But by God you can believe this.!

 

[MtPockets]

Right on AL

You and David are doing a great job at keeping this forum what it should be, a place to share, vent, and show compassion for what our friends here are going through.

Most of those touting these remedies always say, "well some hope is better than none". Well as one who has ALS I do not want any false hope, I want the absolute TRUTH. It is cruel to offer someone false hope and then they die thinking , "but you said I was getting better, that this would work".

How can you lie to a loved one like that? Yes that is what it is , it is a LIE. Pure and simple. At least be considerate enough to prepare them by telling them the truth, so they can prepare properly.

I know this disease is a living hell in some ways, but let's not make it any worse by lying to our loved ones. May God give you all the strength to face this disease honestly, with courage and Love. You are not alone we are in this together.

God Bless
Big AL

 

[Snowbird]

Thanks Al !

Hi Al & Al et al! LOL!

You guys are amazing! We, the family of ALS, thank you for such a wonderful site. This is a wonderful support system for all family members.

I know it is extremely hard to not get dragged into the muck at times, but save your energies for building good positive memories. WE LOVE YOU!

QUOTE:

"Well as one who has ALS I do not want any false hope, I want the absolute TRUTH. It is cruel to offer someone false hope and then they die thinking , "but you said I was getting better, that this would work".

As a person who did a lot of research when my husband became ill, I would have to agree with you. I knew that the Mantle Cell Lymphoma offered 3 yrs of life max, unless a miracle cure arrived.

My husband on the other hand, hung on to the hope that he did not have ALS because our neurologist said his symptoms were not typical. He never did get bulbar involvement. My husband hung onto those hopes until his 8 hr assessment at the ASL clinic in Winnipeg. Unfortunately it was quite devastating for him. He continued to fight, but did not have much left to fight with. By this time his bowels were getting very sluggish, his pain was increasing, and he realized that he was going downhill quickly.

HOWEVER, he loved company, laughed a lot, told lots of stories and jokes, and kept the nurses entertained. I often signed him out of the hospital for a few hours after the nurses gave him his pain meds, and took him downtown or to the drive-in for ice-cream. I attached one of the Basenjis to each handle on the wheelchair, and they marched along very proudly. Everyone on the street stopped to chat with us. Jack loved the outings, and was tired and exhilerated when I returned him to the hospital.

I fed him many of his meals, and even shared them with him. After being at the ALS clinic, mushy meals were recommended for Jack so that he would not choke. After 2 days of those, he told the doctor he wouldn't eat that crap any more, and to give him real food! He did not mind the risk, and the choice was his. He also drank a lot of BOOST.

Our doctor was amazing, as he allowed Jack to do whatever he wanted to do, and eat whatever he wanted to eat. We were also allowed to have the dogs on his bed between his legs. He loved the dogs, and they loved to visit him.

I likely spent the last 6 weeks at the hospital, almost night and day, because Jack wanted me there. I would only go home for a few hours for a break for myself, or to walk the dogs. We watched many movies together, and had lots of company. We did not talk too much about the future because that upset him.

I am sorry if this if 'off topic', but the point is JACK LIVED EVERY MINUTE.

And Jack still speaks to me every day, and influences my life.

He was so brave and so strong, like the rest of you who are LIVING WITH ALS.

I will still encourage all of you to LIVE WITH ALS. LIVE!

Get out of the house, or hospital, as often as you can, and experience life as much as possible. Even try new things. Ask your families to take you places where you would like to go.

I have been a patient many times myself with surgeries and 16 fractures, so I know what it is like to be laid up. That is when I did most of my thinking. LOL! I also worked in diagnostic health care for over 20 yrs.

Thanks for listening.

Pat

 

[buddyr]

a newcomer view

al....as you know i am new to als, and certainly new to reading threads...i'm not sure what prompted your note but it makes sense to me...from what i have seen, your balance of letting views be expressed, with some latitude, while being sensitive to your moderator responsibilites is well done... im my view there are few absolutes in life...much is "grey"...this is contrary to some people who view everything as either black or white...we're all different, but we're all gods children....the view of some is -- my minds made up, don't confuse me with facts or opposing views.....those people you cannot change....you are doing a good job, and i venture to say that alot of people would agree with me, even tho they don't write and say so...stay the course...many appreciate what you and dave are doing.

 

[paula B]

Al and David

Without this site i dont know where i would be. I was told i had als and then sent home to deal with it. Ok so there is a support group once a month in my area,,oh but wait,,they dont have it in the summer months. So this is april and im told wait til october and support group will start again. I am left thinking ok what do i do until then. So one night i am on computer and i find this site. This site has meant so much to me and has helped me thru the hardest time of my life.
I want you and all the rest of the people to know how much i appreciate everybody.
Your doing a wonderful job on here. Keep up the great work.

PaulaB

 

[Teej]

Al and David

I am new to all of this, and I am thrilled to be here. I have mentioned that my husband has ALS. Initially, his friend, who is in the medical profession came over with miracle cure after miracle cure for him to check out. My husband's philosophy from the beginning was, if it doesn't break the bank, or cause permanent damage, he would try it...He tried clays, and vitamin therapies, etc. etc., but these snake oil salesmen prey on the desperate hope of these people and their loved ones and they ought to be ashamed. In his research, he also found scam after scam. I knew of a man who went to a foreign country for one of these "miracle cures", and almost died from the process. One thing we do know for sure, is that overdoing it is not good for someone with ALS, and there is no known cure as of yet. That being said, we hope for one, we pray for one, and of course we pray that it comes before we lose our loved ones, but in the meantime, each day is a blessing. Don't work so hard looking for that elusive miracle, that you don't see what's right in front of you. Like the previous posters said, live your life.....see the blessings. Just the other day, my youngest daughter was begging me to drive with the window down so she could feel the rain on her face, and it made me think....why can't we all live that way? Regardless of a diagnosis? This illness does not define how you spend your time, you get to decide that...Use your time to basque in the beauty of your loved ones and live each moment to the fullest, receiving it as the gift that it is! Thank you so much for speaking TRUTH to people, Al and David. You are doing them the greatest service possible by not selling them pipe dreams. You are giving them the freedom to use their resources to LIVE....God Bless you both! Teej

 

[CindyM]

Hi Al. I think you are the person who welcomed me when I first joined. THank you for that. Thank you and David, too for maintaining a hopeful and positive site. I liked the way you handled the debate about what keeps us going. Tried to say so at the time but goofed on the "post" click, I think. Anyway, you are right that people of like mind will group together, so I wouldn't give much thought to the folks who left for another board.

A while back people were talking about how hard it is to care for someone who is totally dependant and fighting mad about the fact. Seems like we all have a choice in how we can respond, we just can't change what is happening to us. I know my time is coming when my family will have to help me. I'd rather they remember me as a person who is grateful for their support. Not to say we don't get down, but in order to carry out this goal I will have to keep the company of thoughtful, caring, folks who try to see the best in things, like those who frequent this discussion board.