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xsparklingwinex

Active member
Joined
Aug 14, 2006
Messages
36
Reason
PALS
Diagnosis
12/2004
Country
US
State
Rhode Island
City
Johnston
Hi. I am new to the forums here. I have been avoiding support groups out of fear. I feel like this little online community is a God send. Reading and posting makes me feel like I am not alone and I want to thank everyone that has made that possible.

Here is my story:

At 22 I was working at a job I loved, partying with friends and I felt like I was on top of the World. I was hoping to go back to school, get married and maybe have a baby. Unfortunately fate had different plans for me. From the day I was diagnosed (2 years ago) up until now I have said to myself, "better me then someone I love" and I still feel that way. It's amazing how strong you all are. It's admirable. I have so much respect for you all. Just try to keep a positive attitude and never give up. Sometimes it's hard to not get bitter (Trust me I know), but it's imperative that we try. If anyone ever needs to talk, don't hesitate. My thoughts and prayers are with you all. *Hugs*
 

gilly

Active member
Joined
Jul 24, 2006
Messages
56
Country
US
State
NY
City
New York City
hi holly.

you're so right. this forum is such a blessing for both people with ALS and for those family and friends of PALS. it's my aunt that has ALS and i actually enjoy talking with everyone on this forum. i find the same inspiration and comfort that you do - even though we have totally different situations. it's wonderful to have some "non professional" opinions on how to deal with the disease and the emotions that come along with it. somehow neurologists don't always cut it in the "comforting department!"

well, take care and talk to you soon!
 

xsparklingwinex

Active member
Joined
Aug 14, 2006
Messages
36
Reason
PALS
Diagnosis
12/2004
Country
US
State
Rhode Island
City
Johnston
Thank you for the reply Gilly. I agree with you 100% about the comfort of the forums. Though all of our situations are different, all of our hearts are in the right place. I'm sorry to hear about your Aunt's diagnosis. I'm here anytime if you need an ear or a shoulder. Take care hun.
 

rickmcmahan

Active member
Joined
Jul 14, 2006
Messages
48
Reason
PALS
Country
US
State
ms
City
batesville
Welcome Holly,

Yes this forum is a wonderful sorce for information and inspiration. I have only been aware of the forum few weeks now. But I assure you - It is the best internet site I have found yet to support ALS patients. I was diagnosed on January 25 of this year. My symptioms are bulbar onset. I have lost most of my ability to speek clearly and swallowing is a real challange. I had a PEG feeding tube installed this past week as a "backup plan" in case I cannot eat enough food to keep me healthy. But I am still able to get around by myself. But it is not much fun to not be able to eat all those wonderful foods my wife of 32 years can prepare. And I am a TAB addict! Have you ever heard of TAB diet drinks? I have consumed them since I first tasted them when I was a Senior in high school. They were the first ever diet drink for the Coke company. Anyway, I drink them slowly every day and hope I can for many more days. I also and in the ordering process for a AAC (speech computer device) to help me communicate with others.

So come on back to this forum every day like I do and enjoy being a part of this lovely family. Hope have a great day Holly. Rick
 
Joined
Aug 15, 2006
Messages
18
Country
US
State
AL
City
Henagar
hello, holly!

I believe I responded to you in another post, but I just wanted to say HI!
 

xsparklingwinex

Active member
Joined
Aug 14, 2006
Messages
36
Reason
PALS
Diagnosis
12/2004
Country
US
State
Rhode Island
City
Johnston
Thank you both for your reply's. Everyone seems very kind here. I look forward to getting to know you all better.
 

Barbie4

Distinguished member
Joined
Mar 26, 2006
Messages
139
Country
CA
State
Ontario
City
Everett
Hello

Welcome Holly and Rick Mc.

I just read a couple of your posts, as I haven't been on very much lately. too busy with summer stuff I guess. I love the way you type in purple, how did you change that? :) You both have seem positive in your posts. that is great. Welcome and glad to have you here. Congratulations on your wedding plans Holly. I don't think I have ever tried a "TAB" before Rick, to be honest :)

Barbie :)
 

xsparklingwinex

Active member
Joined
Aug 14, 2006
Messages
36
Reason
PALS
Diagnosis
12/2004
Country
US
State
Rhode Island
City
Johnston
Hi Barbie :) To color your font:

After you have finished typing, highlight it and hit the col button and choose a color.. then just hit post :)
 

Al

Moderator emeritus
Joined
May 25, 2004
Messages
7,960
Reason
PALS
Diagnosis
10/2003
Country
CA
State
On
City
NW of Toronto
Fire engine red for me.
 

Al

Moderator emeritus
Joined
May 25, 2004
Messages
7,960
Reason
PALS
Diagnosis
10/2003
Country
CA
State
On
City
NW of Toronto
Might be too hard on the eyes though.
 

MtPockets

Very helpful member
Joined
Jun 1, 2006
Messages
1,528
Reason
PALS
Diagnosis
05/2006
Country
US
State
Ms
City
Gulfport
Hard on the eyes?

Do you mean you AL or the color of the type? ha ha Just joking. I know I would be hard on the eyes.

Another one of those long nights when pain won't let me sleep. Oh well I'm just glad to be around still and have the pain. That sounded weird, but I guess I am kind of weird.

I think my wife just came up behind me and said are you all right, but when I turned around she wasn't there.........At least I hope it was her. Don't think I'm that weird YET that I would be seeing things that are not there, but who knows.. After 40 years of marriage seems like she's beside me all the time anyway.

Sorry just rambling. Better go before I say something really weirder.

God Bless,
Big AL
:?:
 

Al

Moderator emeritus
Joined
May 25, 2004
Messages
7,960
Reason
PALS
Diagnosis
10/2003
Country
CA
State
On
City
NW of Toronto
Myself and another person on the forum have talked privately about such things. Sometimes at night I think I see my wife or just the shadow of her going by in the room. Check her bed and she's sound asleep. Creepy. Guardian angel? Things that go bump in the night? ALS drugs and hallucinations or all them drugs we used in high school LOL. Didn't much go in for that in school. More of a drink man. The other day I was sure I heard the son in law holler something down to me and he wasn't even home. Just weird as you say. Strange things happen.
 

MtPockets

Very helpful member
Joined
Jun 1, 2006
Messages
1,528
Reason
PALS
Diagnosis
05/2006
Country
US
State
Ms
City
Gulfport
spooky

:?: Wife said it was her checking up on me since I was not inbed. Case solved.
God Bless:twisted:
Big Al:mrgreen:
:)
 

Al

Moderator emeritus
Joined
May 25, 2004
Messages
7,960
Reason
PALS
Diagnosis
10/2003
Country
CA
State
On
City
NW of Toronto
Nice guy. Suck me in to tell you all my secrets and then tell me wife is fooling with you.
 

southern lady

Member
Joined
Apr 24, 2006
Messages
28
Reason
PALS
Country
US
State
AL
City
Jackson
Husband hears cries in the night

For weeks Billy kept running to look in on me, thought he heard me calling him. I figured it was anxiety, so relented & let him sleep with me. Then I started hearing strange noises in the night. My startle reflex is on overdrive & whenever the rhino would snort, I'd jump 3 ft in the air. He's banned again! I love him & love to cuddle, but can't stand the sound effects. Love you guys! Mollye
 
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