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May 12, 2006
Loved one DX
Dear Friends,

My family has supported the creation of a new ALS resources website,
We hope it will help "newly diagnosed" patients as well as anyone needing resource information. We welcome comments in order to improve the website.

Thank you ALL,

I've looked the site over and it has some good links and have ordered their brochure. They have a direct link from there to here. Good luck Leslie.
HI! Glad we found you!

I am very impressed with all the love and care given on this Web site! I'm Leslie's dad and have Bulbar (60). Diagnosed June 6, 2005 - one year ago. We had a very bad experience with our diagnosis and my family and I decided we were going to do something to prevent this. We formed "The ALS Patient Initiative" and now ALS Link is live and we link to this forum. We are mailing out 6 free brochures/videos to every neurologist in Georgia to give to their ALS patients and families - especially just diagnosed. You all have great hearts and ALS experience. We appreciate all the advice and help we can get. If anyone knows of someone/a team that may want to do in their state/region, please let us know.
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Hi Gerald,
Welcome to the forum! I checked out your website and it looks good!

Hope you take part in some of the discussions on the board, I look forward to hearing from you.

I enjoyed your video. It is very uplifting and ispirational. You have a great outlook on life. Kudos to you!
Hi Gerald. I've been emailing back and forth with Leslie. Welcome and congrats on the great site. Al. brochure/video mail out

We have decided to mail out six brochures with a video to every practicing neurologist (2,147)in the nine SE states in our brochure - @ 13,000 - to give to their ALS patients and families/primary care doctors. Anyone can get them free.

Note: The brochure and video is on the web site for you to see and print.

Build an ALS Patient Initiative Team in your your community/region and Make It SO! Click on "customized brochures." Wink! G
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Hello Gerald,

When my husband and I found out he had als we were both shocked and very frightened. We sat in front of the doctor and listened to his words. He spoke quietly and then handed us a pamphlet and said he would see us in three months to see how my husband was doing and that if we had any questions he would answer them for us. He said please call the number on the paper and they would be there for support. We left his office with tears in our eyes that would fill a bucket. I could barely see in front of me. My loved one was shaking, we held each other in the elevator. We left the hospital and went to our car not knowing where we go from here.
ALS, ALS, ALS, those three letters would not leave my brain, they got louder every second. I looked at my husband and said do you feel the way I do? Empty, scared, lonely, isolated. We just got handed this horrible news and now the doctor is on his way home to live his life and we are sitting here feeling lost and alone.

I truly believe there should have been more support that day. I believe that there should be people there to comfort those who have recieved this kind of news. Not a piece of paper saying what this is and who to call.

It took us a while before we could reach someone for support and at that time a manual was given to us to read. I picked it up, looked at it briefly and put it away and never again opened it till recently, after almost one year. The fear it brought was to much. Where is the hope in this manual? It is a journey they say, I am sorry this is not a journey to me. My husband and I searched for support and found very little. It was like being on an island. What do we do? I have to say this site gave us hope. Here the people are caring and very supportive but as far as other help it is very hard to find.

I believe there should be ongoing care and support, not just every three months. They should be giving hope. There needs to be more compassion. The symptoms of als are not the only thing that needs to be looked at, behind the symptoms is a human being with feelings. Those feelings are just as important. . Give patients hope, fight the fight with them and help others feel that the disease can be cured some day.

ALS Patient Initiative

Hello Sandy - PALS and families

JoAnn and I had the same terrible experience as you did. My family too when we got home. We were told to go home, take care of business and family and if I lived more than six months to enjoy every day. He gave us NOTHING and walked out. That is what created - information leading to support and care. I have heard this same story many times. Amazing...and frustrating.

We have a great ALSA of GA and MDA of Ga. Also two ALS Centers. All provide great support and care. Physical and mental. Very positive. If a patient is diagnosed in an ALS Center, they do receive excellent support and care before "the ride home" and after from what I have found out. But...we had to find them - all less than 20 miles from my neurologist office! If he had handed us the brochure and took time to explained it plus recommended we get a second opinion from The MDA/ALS Center at Emory, we would had a first step - not a brick wall. He could have played the video for us too. Emory ALS Center does this with just diagnosed ALS patients.

There are support meetings to go to. Religious organizations that will "adopt" your body and soul. Friends of PALS. Our goal is to find and link every PALS and their family to support and care in their community - whatever, however and wherever it is...physical and spiritual. Starting at the doctors' office. A lot of PALS do not have computers...but they do have telephones - names and phone numbers in the brochure.

Some PALS live where there is no close support and care. Thank God for and all of you caring and loving souls.

Way to Go

Way to Go Gerald and family:

You are not only an inspiration of great attitude to all of us, but you are also an excellent example of people who made a difference. I, like yourselves and Sandy, was really apalled at the amount of support after Gail's diagnosis. The Hospital where she was diagnosed was horrible, just a pat on the leg and that was it. She has since discussed this with the hospital and they have assured her that they are making changes of how they handle giving someone this kind of diagnosis. (She made a difference too)
I would like to see someone ( social worker or support person experienced with ALS) visit the newly diagnosed person's house within days of diagnosis to help answer questions, give info on where to find more info and most important, emotional support for the person diagnosed as well as family. I was there for Gail everyday at the beginning, but I was not qualified to help my best friend deal with such devastating news, I was in shock and grieving too. I did the best I could, but I would like to see more support in the future.
I hope that somehow, somewhere down the road, I will be able to make a difference too, one day.
I agree, thank goodness for ALS.Forums, and the people on it, as this is where I found my strength on those dark and gloomy first few weeks and months.

Barbie :)
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