Hi Everyone!

I want to tell you about the launch of my website. I was going to do this about a year ago but for one reason or another never got it started. FINALLY launched the start of it today.

It is a simple site giving my experience and opinion on things. I have tons more content to add to it so it will continue to be a work-in-progress. Your critique and suggestions will be welcomed and appreciated.

LifeWithALS (http://www.LifeWithALS.com)

:grin::grin::grin:

Love it...looking forward to more of your experiences and your wives :)

Looks very neat and concise! Thanks for putting forth the effort to help others!

Great website Joel! I think the Content Index section is very helpful and wish other websites had the same.
Great job and thank you for reaching out and helping others.
Dana

Lots of work for you and very helpful for others.

Way to go Joel!! The website looks very good and it really has a lot of useful information.

Thanks everyone! I welcome your suggestions for content and if you have contributions don't hesitate!

Thanks Joel - I really appreciate your perspective.
Dan

Hi Joel, Your website is terrific! I think it's easy to navigate through and I can see the potential for you to get lots of information out there. Way to go! -Pam

Well Done Joel.

Glen

very nice glad for the meanings of abbv. like cals and pals been trying to figure that out

Great website. Thank you for helping PALS and CALS.

Great job Joel!

I am so happy to see this site.........I have nothing but the utmost respect for you. You were always there for me when I was scared or just confused, I will never forget you. Keep up the good work and as Freddie would say "keep fighting the good fight". God Bless you and your family.
Thanks for always being there for mine

God Bless You!!

netty

Well done! I love the positive approach. I look forward to seeing your site grow!

Thanks for that! I finally figured out the difference between ALS and PLS from the doc on your site. I have googled and googled but everything I have found is so technical and never really gave me a clear understanding of how they are different. I also never completely understoon the upper vs lower motor neurons.

Of course you site could be detrimental to this forum, new responses will be: go read Joel's website LOL :)

He better not be stealing our business. Congratulations on your site Joel. Looks pretty good. Hope you still have time for us.
AL.

LOL. Don't worry Al. Nothing could replace this site! I spend more time here than it took me to put that together. No competition.

I figured you're here like me, for a good time, and a long time. Some days are just longer than others. LOL.

AL.

Joel - Just went to your website and found it very full of useful positive information. I'm going to give the website address to my dad - He is the one with ALS and is a little discouraged right now as he is just home from the hospital after having pnemonia - 2nd time. I will be also forwarding it on to my sisters as we are trying to coordinate his care. So I thank you for some very useful information that is easy to find and I think my dad (with his limited finger strength & mobility) will be able to get around the website easily.

I am very glad it might be helpful to you and your family! If there is anything you want to see on it please let me know.

I am adding to it daily so if you go back to check make sure you refresh your browser by hitting F5

Well done. Positive.

Great site! Thank you for sharing your story. My mom has ALS (dx May 209) and your story is so full of hope and inspiration. I tried to submit a question on the site, but it didnt go through-so I'll just ask here and maybe others will give some insight. I am wondering if the power wheelchair/trache/vent/feeding tube actually make the disease "easier" to live with? My mom is still in the manual chair, she is on the bipap 22 hrs a day, can barely talk, and chokes daily. Her life is a major struggle each day ( I know that is part of it) but will she get more freedom/peace of mind with these things? She is scheduled for her feeding tube next wed at WFU unless they determine tomorrow at the anesthesiologist consult that she is already too far gone to put her under. Thank you for your insight, your story has given me some hope- and our family needs it about now! Mom is the center of our workd and we want to do whatever we can to make her life the best it can be:)

I have to say that they definitely make the disease easier to live with. Once she no longer chokes on food and can get proper nutrition things will get better. Also, using the powerchair will save valuable energy. But the biggest help to me was getting my trache and vent. I was expending too much energy trying to breathe. People said I looked 10 years younger the next morning. I felt it too.

Joel, I like the work you're doing on your website.

Zaphoon

Joel..love the advice section..will be sharing with my hubby in the morning. What a great job! Thanks for sharing.

Joel I want to join in with thanks. You are an inspiration to me, with your positive and practical attitude. I really think the information you have can be lifesaving for people who are willing and able to follow your example in dealing with this disease. As my wife and I struggle to come to terms with what we may be facing down the road, it has been tremendously reassuring to know that there are concrete steps we can take, when the time comes, to extend my life and health, as you have demonstrated so well. I hope you continue to be around for a long time and continue to set an inspiring example.

Thank you everyone for the encouraging comments!
I had no idea when I started the site that so many could find it useful. I am deeply touched and encouraged.

I have been adding to it so have another look.

i have it bookmarked thank you so much

Joel, you are a constant source of positivity and strength. Kudos to you for putting your story and experience out there for the benefit of others. You're a truly generous and kind man. I look forward to reading more from you on this site!

Rosella

Joel,

This is great! I especially like your "My Advice" page. Perfect for the newly diagnosed trying to figure out how to deal with this, and also as a refresher course to keep the rest of us on track.

-Tom

I have added a few more pages and a search feature. I can't believe how many hits we are averaging! Thanks for all your encouragement!

You have done a great job on your new web site! Next to my husband George, you are the most positive and encouraging ALS patient! You are an inspiration to all.

Thank you for all your kind words to me. God is using me for His work now that my love is gone.

Take care and live well with your lovely wife and family.



Patty :razz:

Joel, I agree with Patty, you are an inspiration to all of us! Thanks for all of your work.

Barry

Awsome, Joel I can't wait to show it to Mom/

Amazing great job Joel. Keep up the good work. I really enjoyed your website.

Joel, I love your pictures. The ones of your work room are my favourite. You have that in common with my dad.
Keep up the amazing work! :)

Missed your pictures before. Great shop and loved the boat. I had to sale mine too. Seems I always had a boat. Guess someone else can enjoy them now.
You email reply form is not working on the site. It brought up a message to enter your email address, which I do not have.
I hope you and your family have a great week.

Thanks Al, I just tested the email and it worked for me. The email it is asking for is your email addy.
I am glad our boat is getting used, the person who has it uses it a lot more than we did.

Joel-

Your web site is great! I appreciate your positive outlook and your willingness to share.... Thanks ! Lora

I have finally uploaded the video we took last December. I have been trying to find a program to edit it since then. The video cuts in and out a bit so don't worry, it isn't your computer. When I find a better, free, program I will redo it.

I have added some other content as well. Suggestions are always welcome!

Suctioning Video (http://www.lifewithals.com/page39.html#top)

This is such a gift! Thank YOU for being you and showing the world that PALS can chose to LIVE!

Thank you Joel for sharing this with us. So many of us have wondered what it was like and because of the fear of it have shunned away from a trac. You have give n us the courage to maybe try it for ourselves when the time comes. Thanks again.

Looks like the spammers are back somehow.

It seems to me that someone has discovered a dictionary.

I've banned him so maybe he'll go away.

AL.

Round of applause to AL

Keeper of the forum
Defender of the faith

Knight of the Round Table

or is it NI ?

Glen

Good job Al. that was getting weird.