View Full Version : Had enough!!!
Don't worry about the rambling Kelly. I have been living with this for 4 years now. I don't mind rambling or venting. I have come to the conclusion that I WILL NOT let this forum be taken over by miserable people that have no tact, no feeling for others and no social skills. YES YOU KNOW WHO YOU ARE! Ask a question, give an opinion, but if you start dumping on another , you will be out of here. We have the best ALS forum on the net. As long as I and David and Cindy are alive we will keep it that way. If you don't like our rules. Go somewhere else! There are a lot of less reliable places to get information. That's the way it is here. Love us or leave us.
AL.
Jamiet
10-17-2007, 11:04 PM
Thank you AL
Your still fighting fires, and darn good at it!!!
Rgds,
Jamie
Al, Thanks for keeping this a nice forum. I just joined yesterday, but I like what I see so far.
Well Jake there are some snakes in the woodpile this week. Hope you can see past the silliness and stick around. It really is a good place.
AL.
freddiesnetty
11-29-2007, 12:21 AM
Hi Al,
I am new kind of ( you couldn't tell because I ramble) and I throughly admire you and what you are doing. My husband is so depressed most of the time, sometimes I wheel him out here and read some of your posts to him....He gets a kick out of them....He could really play the guitar, some say the next Jimi Hendrix. He was signed to a major label and then this happened to him....I have spoke of you and your career to him frequently, your courage has made him now decide to get a puter not only for speech but to continue to write music, My family truly thinks of you as an inspiration!! God Bless You and thanks for the encouragement. :-D:-D
Hi there. I can understand the depression. If you don't have something to live for it can be pretty darn bleak looking. I have this forum and all the good people here to look forward to (most days). I have an 11 month old granddaughter that lives upstairs that I see most days and a 2 1/2 year old granddaughter that lives away from us but she just spent 6 weeks with us. They are a reason for looking forward to the day. It got cold last week and we have about 8 inches of snow. I don't like the cold but fresh snow is like a new beginning. It covers up the old. Something to look forward to. You tell your husband he just has to change the way he looks at things. Some good will come from the bad. You just have to look a little deeper sometimes to see it. Take care.
AL.
nspoc
11-30-2007, 03:13 PM
Hi Al and everyone -
I have been trying to follow the posts about the few bad things going on around this forum. All I can say is that You, David and Cindy are pretty darn fast at fixing whatever it is!
I don't post often - but I must chime in and say this IS the best forum. I am constantly using your links, Al, and yours, Cindy.
I am sorry you had to modify the forum to limit privileges temporarily, but it does seem to have stopped a lot of the problems of advertising and porn.
As far as the creeps and crabs go who occasionally show up - I do get offended. But they are so minimal compared to the astounding people here. I can only echo what Cindy says -
I NEVER engage them. If all the sick or disturbing comments were ignored and the subject changed - the posters would disappear. Or there would be time for Cindy, Al or David to ban them (or whatever it is they do).
I also have one more suggestion - when you have been hurt by these jerks -please seek out the support and counsel of all the incredible people here. Of course I see that being done - but don't engage the bad poster - engage the good ones.
One more time - this is the best place to get info and support I have ever seen.
Thanks a million to everyone!
Beth
And thank you. We are doing our best.
AL and the gang.
adjovi
12-13-2007, 12:36 PM
Hi there:
I have been lurking for a couple of days. I am neither a PALS or a CALS, but had been doing some research on ALS for my work and came across this forum. I am unaware of any of the issues you have been having with posters, but wanted to echo other's sentiments that you all have a wonderful forum here--offering stories of hope and providing support to each other. I have found myself tearing up as I read some of the posts and laughing out loud as well. You truly should be proud of what you have done here.
Thank you. We do have a good bunch of kind and caring members and we try to keep out the riff raff so to speak.
AL.
CindyM
12-13-2007, 07:34 PM
Yes- thank you. We are all volunteers and it is nice to know we are meeting our goals. Cindy
adjovi
12-13-2007, 08:49 PM
I would definitely say you are exceeding your goals. :) Hope you don't mind me lurking a bit longer. I am learning a lot from your members. Thanks again. And Al, sorry for the repeat post about your slide show--totally didn't mean to do that!
CindyM
12-14-2007, 07:27 PM
Stick around for as long as you like. The search feature on this site is very helpful, too. Cindy
snowbirdqv
12-20-2007, 02:46 PM
It has been 2 1/2 yrs since I lost my husband of 33 yrs to ALS. I have thought of this forum often, but could not find it. Today I made the effort and found it.
Two main things stick out in my mind about the old ALS forum.
1) A-L-S stands for "About Loving Someone". I love that one.
2) We all focused on 'living' with ALS, rather than dying with ALS.
That is so true. I am so glad to see some familiar people still on the forum.
God bless all of you, and I wish you all the best over the Christmas season. We have great memories of my husband over Christmas. He was such a kind, thoughtful, generous, and humourous man. We think of him every day, and we miss him more than most can imagine. We keep him very alive with our thoughts and our memories. :)
I remember you from what seems like an eternity ago. I have often wondered how you were. Thanks for letting us know that you are well.
AL.
snowbirdqv
12-21-2007, 01:52 AM
Hi Al! I have thought of all of you often. After I lost my husband in August 2005, I went into a deep depression and ended up in the hospital for 3 weeks in November. Much of it was grief, and much of is was caregiver burnout. Anyway, upon getting released from the hospital, I spent a good Christmas with my family, flushed all my meds, hooked onto my 5th wheel, and headed back to Yuma, AZ. I had taken my hubby there twice(2004 & 2005), and this is my 3rd year of returning by myself. I enjoy the break, and it keeps me close to him and our friends. I have a winter home on the Colorado River (www.hiddenshores.com), and was just there in November to get my 5th wheel set up. I plan to return in January. I would be happy to show anyone around Yuma if they can get down there. It sure beats our wretched Canadian winters and the ice.
My husband's ALS was combined with another rare disease, Mantle Cell Lymphoma. He lived for 3 yrs after the first signs of anything being amiss. His first sign was weakness in his one arm, and it progressed to his other arm and then his legs. He did not have any bulbar involvement, thank God. He chose to not have any life support, so when he finally got aspiration pneumonia which our doctor expected, it was his time.
Has there been any new research into causes, cures, treatments, etc.? I still believe that inhaled chemicals play a huge role. In MB it was claimed that the majority of ALS patients were rural, then automotive industry, and then firefighters. My husband ran an auto/ag dealership, farmed on the side, and was fire chief for 25 yrs. 3 strikes, you're out, I suppose.
On a good note, he LIVED every day of his life. In his short 62 yrs, he likely lived more than a lot of 80 yr olds. For that I am grateful, and I am grateful for our wonderful life and all of the wonderful memories that I cherish. We may not understand why things happen as they do, but we can choose to make the best of it. :)
Pat ..... aka snowbirdqv
Thumbs Up
12-22-2007, 09:33 AM
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Even with familial it seems that way. My cousin was a firefighter and my sister I think stress of our mom brought to on. Somethings seem to trigger it.
cheryllynn
02-25-2008, 09:20 PM
could you help me to post..i was just dx and can't seem to get on here
CindyM
02-26-2008, 11:24 AM
Hi Cheryllyn. You seem to be doing ok with the forum. One thing that helped me when I was new here is to always choose the "New Post" tab at the top of this screen. That will get you into the most current conversations. Cindy
CindyM
05-26-2008, 09:14 AM
This is a great question, Christina. If it does not get some responses, I'll make a new thread for you if you like. I think you can make a new thread, too. You do it on the main section.
But lets see if any of our CALS notice this request.....
REMSENBURG
06-02-2008, 07:33 PM
hi, how does one post on this site thanks Bob
REMSENBURG
06-02-2008, 07:37 PM
I been dia with ALS 2 1/2 years ago I am 70 years old , it started with my left foot draging, noe both legs are getting weaker. My ???????? its been geting harder and harder just to go to rhe john, what does every one do when you can perform getting up and down any more Ihanks Bob
CindyM
06-02-2008, 09:20 PM
Hi Bob- I see you found out how to post! I am glad you decided to join us. Most everyone will be happy to help both with the site and with your questions about ALS.
If you do not get a lot of responses here, I'll make a new thread for you so people will see your question faster. Meanwhile, you do not say if you have a handicapped-accessible toilet and a grab rail nearby but these measures will work for awhile. You can also buy higher seats to put on the toilet - around my town they sell them in medical equipment stores. The higher seats work as long as you can still get up from a seated position in a regular chair. toilet seats are lower, thus the difficulty.
You also might find more answers if you click on the search tab at the top of this screen and type in "toilet seat". I hope this helps...Cindy
