Long term ALS survivors

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CindyM

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Sep 17, 2006
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Learn about ALS
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New England
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Anytown
My internet connection was out both at work and at home! Usually I can get on in at least one place.

So I hope your Holidays went well, Omar and Happy New Year to you and yours.
 

Peg B

Distinguished member
Joined
Nov 5, 2006
Messages
414
Reason
PALS
Diagnosis
10/2006
Country
US
State
Michigan
City
Flint
EXCELLENT Mike! Thank you. This could be in the Happy New Year thread too. Attitude seems to make all the difference. You give us all solid hope for goodness. Sincerely, Peg
 

Sandee

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Joined
Feb 20, 2008
Messages
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Reason
Friend was DX
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US
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Indiana
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New Castle
Oh God Bless You All You Have Done My Heart Such Good Today

My Best Friend Was DiagnoseD With Als Just Last Week And I Remember Telling Someone after i learned of the diagnosis That I Didn't Want To Say Goodbye To Him In 18 Months And I Also Have Done Nothing But Cried. Haven't Been Able To Sleep But I Also Had Been Doing Research And Just Kept Seeing The 2-5 Yrs. And All The Negative Stuff And So I Thought I Would Come To This Section And I Declare You Guys Have Just Made My Heart Leap With Joy As My Friend Is Very, Very Optimistic And Determined To Not let this dreadful disease Interfere With His Life. Maybe He Has Enough Of A Fighting Spirit To Be Around For A Very Long Time.

Thank You All Here Again For Making Me Feel Better Today And I Too Will Support Als With Everything I Have Until I Take My Last Breath.

Sandee
 

hopingforcure

Very helpful member
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Feb 14, 2008
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Diagnosis
09/2007
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Glad you are feeling a little better today. You are now another person on board for a cure for ALS, and that is a good thing. We all understand how you felt, and know that in time things will seem better, and even hopeful, the people on this board have a lot of life left in them, and we are all fighting the good fight.. Hope you join us often, and feel a place to voice questions, concerns, and whatever is on your mind. This board is a saving Grace to so many of us. Hoping
 

Lorie

Senior member
Joined
May 17, 2007
Messages
551
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Loved one DX
Country
Uni
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Alabama
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Mobile
Sandee

Don't give up hope. My brother Tim has had ALS for a total of 10 years including 3 year DX. We all know how you feel. We have just felt it longer. I don't think it gets easier.
Be there for your friend. That will mean more than anything.

It does take a lot of Will, Faith, Attitude. Keep his spirits up.

Tim is giving up now. But he has had his journey. I am there for him through it all!

Please Read: Tim

http://www.als.net/ffc/familyPage.asp?familyID=328

Mt Friend Bert for 25 years, Please Read: (he looks much different now)

http://www.bertwoodard.com/


Lorie:-D
 

Sandee

Member
Joined
Feb 20, 2008
Messages
24
Reason
Friend was DX
Country
US
State
Indiana
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New Castle
lorie, thank you and I just read about your brother and his courageous struggle. How amazing. My heart and prayers go out to your entire family. I do have a question and it's just because I don't understand how this disease works. My friend who is a university professor and knows sadly that he will have to eventually give his job up said it started or affected his heart muscle and I guess I don't understand it affecting or starting in the heart. Can someone explain?,

Sandee
 

Al

Moderator emeritus
Joined
May 25, 2004
Messages
8,083
Reason
PALS
Diagnosis
10/2003
Country
CA
State
On
City
NW of Toronto
Your friend must be mistaken. The heart is an involuntary muscle and is not affected by ALS. He may have had a heart problem before ALS but it had nothing to do with his condition now. I think you hold the new record for posts. More than 10 per day since joining Wed. Not that it's a problem but maybe you should ask your doc about some anxiety meds. We've seen this fixation before and it's not healthy. Getting all wound up doesn't help you or your friend.
AL.
 

arlie

Member
Joined
Dec 18, 2007
Messages
15
Diagnosis
10/2007
Country
ca
State
ontario
City
toronto
hi everyone --this week has been extremely hard as i have become weak as toast and my biggest concern is my left eye which keeps vibrating-looked in the mirror and can't see any movement-so it is like the vibrating in my body all week-anyway the weakness and vibrating in my body slowed down finally yesterday but the eye didn't
would wearing the eye patch help by keeping my eye closed-would it slow down the vibrating and slow down the als in the eye-i love to read and do puzzles

thanks arlene
 

Sandee

Member
Joined
Feb 20, 2008
Messages
24
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Friend was DX
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US
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Indiana
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I'm very sorry I didn't mean to post so much.

Sandee
 

Lorie

Senior member
Joined
May 17, 2007
Messages
551
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Loved one DX
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Uni
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Alabama
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Mobile
Sandee/Al

Sandee,
I agree with Al about the heart muscles. Al you can be blunt. She is scared and looking for answers, just as we all have. After three years of Tim's Dx. If I wasn't on Paxil, Buspar, Valium, Clonazepam. And I didn't have all the responsabilities I have, this would probably be a LORIE FORUM (lol).

Stress an Anxiety does not help. Agreed Al!

Lorie:-D
 

vmd

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Apr 27, 2007
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arlene:

I am sorry to hear you are not doing well. I'll pray for you. Are you saying that your eye is twiching? By "vibrating" do you mean fasciculations? I wasn't aware that PALS had such problems with the eyes.
 

Al

Moderator emeritus
Joined
May 25, 2004
Messages
8,083
Reason
PALS
Diagnosis
10/2003
Country
CA
State
On
City
NW of Toronto
18 posts in less than 30 hours. Of course I'm blunt. If I wasn't the inmates would be running the asylum.
AL.
 

ZenArcher

Senior member
Joined
Feb 22, 2007
Messages
676
Reason
PALS
Diagnosis
02/2007
Country
US
State
PA
City
McEwensville
Does that mean I can take this fancy jacket with the sleeves that tie in the back off?
 

Al

Moderator emeritus
Joined
May 25, 2004
Messages
8,083
Reason
PALS
Diagnosis
10/2003
Country
CA
State
On
City
NW of Toronto
I love your sense of humor man. Seriuosly though. !8 posts plus the couple I deleted because they were duplicates and asking the same heart question on 2 different days which I answered both times makes me think someone isn't bothering to read their own posts and replies or is extremely agitated and needs meds or someone to tell them to settle down. Seeing as I am not licensed to prescribe meds it is a kick in the butt you get. Lorie, I am surprised you would jump on me like that. Obviously you didn't read her 18 posts. You know I don't get on someone's case unless they need it.
AL.
 

Lorie

Senior member
Joined
May 17, 2007
Messages
551
Reason
Loved one DX
Country
Uni
State
Alabama
City
Mobile
Al

Al,
I don't see where I got on you. I have nothing but respect for you. I think you do a great job. The Lady told me her computer was slow and may have duplicated her post. She is scared and has compassion for her friend. Atleast she had th nerve to come on the Forum to try to learn about ALS. Her friend is under suicide watch, because he cannot accept his DX which has come so fast. She said she would not be on here for a while, if at all.

I told her she can E-Mail me all she wants. I have picked her up, as I have done may on here.

Speaking of posting, no offense, if I was a Moderator on here. There is a person I would have already shut off. I am tired of hearing about his Soap Opera Life. That shouldn't take much to figure out. I have even had other people PM me to ask if this guy is for real!

On that note: I think I am signing off for a few days.

Lorie
 
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