New? Introduce Yourself - Say Hello

[ChrissyWho]

Hi Barb,
My fiancee was just diagnosed two weeks ago. Any advice that you can give me would be appreciated.
Thanks, Chris

 

[Barbie4]

Chris

Hi Chris:

I am not sure how much advice I can give you as I am only 4 weeks into this myself. I have found alot of comfort, support and good info on this forum. You are in good hands here. Try and stay strong, but let it out when you have to.

Some of the advice I have received from being on the site so far is to check out the book "In his own words" by Morrie Schwartz. A lady named Marcia found it inspiring. So I ordered it. I also ordered a movie from the NFB website called "Bearing Witness. Richard Colley story" ( That isn't the exact title, but it is close. Al suggested it) so I ordered that one. I also emailed the ALS society of Ontario (not sure where you are from) and ordered an ALS Manual. I haven't started any of it yet, As I just received it yesterday.

Richard wrote a great post under the "new member with new perspective" Thread.You have to go down a few to find it. It was inspiring to read for me. I actually read part of it to my friend to help her one day. I printed it off so that I could re read it when I needed a bit of inspiration.

Some days are so unbearable to even think, some days are better. I am trying to find my strength in learning what I can do to help her and her husband and children. I am grieving too and very frightened of all this.

I am so sorry that you have had to be here, but hope that you will read the posts and find the support that I have.

Thinking of you

Barb

 

[Al]

Hi Chris. Sorry about your fiance's diagnosis. Probably the biggest bit of advice any one here gives is try to stay positive. Take one day at a time. If you go to www.als.ca you can download their Manual for Living with ALS. AS Barb said it is full of useful information about living and coping with ALS. It will answer a lot of your questions and the ones it doesn't answer we are here to help with those. Good Luck and welcome to our group.

 

[Granny]

Dear Chris,
Welcome to the forum. Sorry you have to be here, but it is a good place to come when you need comfort, information or a place to vent. There are lots of people here with good information, and lots of people to listen if you need to talk.
It takes awhile for you to get your head around this thing, then things seem to get a little easier to cope with.
Post whenever you need to.
Hugs and prayers, Leah

 

[ChrissyWho]

Hi Al, thank you for the advice I'll download that right now. My biggest worry is that it took so long for George to be diagnosed. He is diabetic so they kept saying that the drop foot was due to nueropathy which was caused by diabetes. I just knew that everything was going downhill too fast for it to be just the diabetes. Anyway, thankyou again for the link.
Chris

 

[ChrissyWho]

Good morning Leah and thankyou for the kind welcome. I'm sure that I'll be here quite often trying to get as much info as possible. You all seem like wonderful people.
Chris

 

[Melissa in Texas]

Hello David,

My name is Melissa and I'm having a little trouble understanding how this works. I think I posted a new entry but I don't see it anywhere.

I hope I'm smart enough learn this. I think it would be beneficial since my mom was recently diagnosed.

Thanks.

 

[Al]

Hi Melissa. I found your other post so you must have figured it out. At the start of this thread there are sticky's at the top of the page that give tips on how it works. Take a look if you haven't already found them.

 

[Bob Simpson]

Thank you from a new member

Dear all,

I just found out that my very best friend was diagnosed with ALS last week. We work together and have been close friends for years. I am devastated by this news and am spending much of my time to research what can be done.

Your forum seems to be fantastic. What a bunch of supportive people. I was lucky to have found you all.

Thank you,

Bob Simpson

 

[Al]

Welcome Bob. We do what we can.

 

[Barbie4]

understand

Hi Bob:

Welcome. My best friend was diagnosed recently too, so I understand for sure. I really like this forum. It is a bit of venting, learning and a bit of therapy too, I think.

Hope you are coping well. It is really hard to deal with.

Barb

 

[bella]

hello

Hello,
This is a great forum. I have been checking the messages for the past 3 months whilst trying to figure out what was wrong with me but finally joined today.

 

[Barbie4]

hello to you

Hi Bella;

I wanted to say "Chow Bella" like they do in Italy. just wanted to say hello!

Barb

 

[Granny]

Hi Bella,
Welcome to the forum. Did you find out yet what is wrong with you yet? Hopefully, you do not have ALS but if you do, you will find lots of support here.
Hugs and prayers, Leah

 

[bella]

Hi Barb4 and Granny

Thank you for welcoming me. Granny the diagnosis is still pending, I have had symptoms for 4 months now, everything has been excluded through MRI and blood work, my symptoms are getting worse and multiplying-mainly bulbar-swallowing + chewing, but the last EMG was negative so no diagnosis as yet.
Bella