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gecc4

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Joined
May 18, 2006
Messages
9
Reason
PALS
Country
US
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PA
City
Gap
I just discovered this site and found it pretty interesting. I have just been diagnosed with als, April 5, 2006 after having the second emg. I never even heard of als until I started having all kinds of symtoms and was tested for everything under the sun. My neurologist said he was trying to rule out als or possibly pls. I immediately started searching the internet to find out what it was, and was terrified of the possible diagnosis. Eight moths later, I had the second emg and was told I have als. I was floored. I felt like I was in a boat in the middle of the ocean without a paddle. I am now going to an als clinic and found there is a lot of support for people with als. I am probably dealing with this much better than my spouse, which took it very hard. I look forward to hearing from you. Thanks
 

Mike27

Distinguished member
Joined
Apr 19, 2005
Messages
280
Diagnosis
10/1993
Country
CA
State
Alberta
City
Edmonton
Hi and welcome to the forum...
The forum is kind of a conundrum; too bad that there is a need, but thank goodness for it being here!

I'm sorry to hear of your diagnosed. It is like a kick in the stomach, just takes your breath away!
We're here for you if you need advice or just to sound off.

Good luck!
 

hope

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Joined
Oct 1, 2005
Messages
230
Welcome to the site. I am sorry you have ALS. My husband was diagnosed in September and I know how you both feel. We will admit that we are still in shock and disbelief. It is truly heartbreaking. Everyone here is very kind and very supportive. My husband and I felt very alone also and we found the site and it makes you feel that you are not alone. Some days we do not know how to feel, emotions change all the time. Please know that we all care and we are here for each other. My husband has posted a couple of times, he is not sure what to say because he is still trying to come to grips with this. I try to read the posts to learn how others cope and when we can we try to support others. They are all kind.

Sandy.
 

Barbie4

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Joined
Mar 26, 2006
Messages
139
Country
CA
State
Ontario
City
Everett
gecc4

gecc4, sorry you are here.
THis site has been a haven for me since my friend was diagnosed in March.

Sandy is a kind a wonderful person who seems to know the right things to say in every post she writes.

I hope you find comfort and friendship here as i have.

Sandy, thanks for your strength and comfort. I hope you know what you give to others. A big hug to you and your husband.

xo Barbie xo
 

ladave

Distinguished member
Joined
Feb 12, 2006
Messages
136
As everyone else has said, and it is the standard line, glad you found us but sorry for why you're here. This is a good support community, so let fly with any questions or opinions, the rest of us sure do:)
 

hope

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Joined
Oct 1, 2005
Messages
230
Barbie,

Thank you for your words of kindness. It is hard to describe sometimes how one truly feels. My husband always says that he gets his strength from me because I myself have been battling a very serious illness for the past few years and he says I have shown great courage and strength to keep going. Every day I read the posts here and I learn so much on ways to cope. I am grateful that I have met people like yourself and others who are very kind and caring. It is frightening to be in something you do not understand. Every morning I make coffee for my husband and I say to him okay honey today we are not going to think of ALS, we are going to think of what we can do today to bring a smile to our faces, and a giggle in our hearts. Yes even though we visit the site we try hard to focus on what we can do today. There is not one day that goes by that we do not cry, but we do laugh also. In our struggle we have found very little support in our community which is sad but we are thankful for this place.

Sandy.
 

gecc4

New member
Joined
May 18, 2006
Messages
9
Reason
PALS
Country
US
State
PA
City
Gap
Thank You All

Thanks all for your kind words of support. I already feel like I have some new friends. Today I'm feeling a bit down because my legs just don't seem to want to cooperate. I'm afraid it won't be long till I have get a wheel chair. I just can't get used to idea of being bound to a wheelchair. :(

So long for now
Gordie
 

hope

Distinguished member
Joined
Oct 1, 2005
Messages
230
Gordie I hope what I am about to say will help you feel a little bit better. As I watch my husband slowly loose the use of his hands I feel so frightened. My heart breaks everytime I see him struggle to do things. I help him dress, buttons,zippers and opening things, holding things have become a problem for him. I lovingly help him with all these things. We try not to focus on it to much, we just do what has to be done and keep going. I understand how you feel, it hurts. Try not to focus on having to use a wheel chair and try not to look at the wheel chair as a bad thing. The way we are going to try to look at things is that my husband just has to use a different way to do things. Live life, even though there are hurdles there, just hang in there and look at the glass half full instead of half empty as they say. I know this is hard to do but you will learn to do this. I never thought a few months ago that I could bear seeing my husband struggle like this but even though it is painful I take care of him and we have fun, we learn to laugh at some of the situations we get into. I stumbled one day and he said oh dear it is contagious, I looked at him and cried then I laughed, we held each other and moved on. Gordie, in life we are all dealt something, I have an illness that has tore at my heart and soul for a long time and have learned to face it every day with the attitude that okay today I am here and I will live the best I can, I will love the best I can and I will help others the bes I can. I am disabled but I am alive and I have love in my heart for my husband and that is what keeps me going. Hang in there, in time you will see that there will be days you feel awful but there will be days that are wonderful with lots of sunshine.

Sandy.
 

wewillbeatthis

Distinguished member
Joined
Aug 10, 2005
Messages
185
Gordie,

Finding this site is a God Send... I can tell you that before I found this site I felt lost in a very big world. I am so sorry that you are dealing with this disease. I believe that this site will make this whole situation easier to deal with. Each and everyone one of us will be with you every step of the way.

Hope your posts always bring tears to my eyes but a smile to my face. You are so correct when you state that life brings us all something. Life has not been easy these past couple of years. Dad going for tests for a few years and then finding out almost a year ago that he has ALS. Mom having an auto ammunie disease for 25 years and finding out last year as well after a bad flare up that landed her in the hospital that she has a very mild case of Lupus. This is all very hard but I am handeling it the best I can. Mom is doing great now on medication. Dad is doing good but not great. He has good days and bad days like everyone else. I find that I watch him like a hawk and this is getting to him I can tell. So with everything else comes adjustment. I think that one thing that does make your situation so interesting to read is the fact that the two of you are together and in love dealing with serious issues. This in iteself is hard but to do it and be in love is wonderful. My parents are divorced. My dad lives with me and my soon to be husband. Mom lives with my brother. However, my brother will be moving out within the year cause he is just about done with college. Please keep up the good posts. Once again thank you for being you :)

I do believe that we will all be celebrating a cure or at least a way to hault this disease soon enough. This is my one and only wish in this world.
 

mimi

New member
Joined
Mar 30, 2006
Messages
9
Reason
Learn about ALS
Country
US
State
New York
City
Dover Plains
Hi Gordie,

I am so sorry about your diagnosed. I am still going through the process of elimination, but my neurologist was telling me last week that he is still leaning toward als but will continue to do more testing to rule it out. I know how you feel. When the doctor started discussing this with me It was like the wind was knocked out of my sails, but when I came to this site and had all these wonderful supportive people respond to me it was like a weight lifted.

I don't post a lot but I do read every day and get such positive feelings and education from this site that I really would be lost with out all the input everyone gives here and that I can't thank them enough. Thank you all.

Hang in there Gordie, my thoughts and prayers are with you,
Mimi
 

gecc4

New member
Joined
May 18, 2006
Messages
9
Reason
PALS
Country
US
State
PA
City
Gap
Hey JoeJoe

Gap, PA. is about 35 minutes south of Reading, PA. Gap is on Rt. 30 between Lancaster and Exton, pretty much in the heart of Amish country. If you can still get away, it is a good place to visit.
 

Syndi

New member
Joined
May 13, 2006
Messages
2
Reason
PALS
Country
US
State
Florida
City
Fort Walton Beach
hi

Im new to this site too. My man of two years who I intend on marrying just got diagnosed with ALs 3 weeks ago. So many emotions so many questions. His symptons came on quick. Muscle twitching constantly in arms started end of Feb. His left side of his body is really weak. He is already in a wheel chair. Perfectly healthy 3 months ago. :cry: He has hard time breathing. When they diagnosed him on his paper work they have sever rapid progressive. The doctor basically gave him advice to take care of his personal papers, family etc. To call hospice and his door was always open but there was no treatment. Ive been reading on this site and I will continue. Do you know what Rilutek is and how it helps. Thank You
 

Jane

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Joined
Feb 7, 2004
Messages
168
Reason
Lost a loved one
Country
CA
State
ON
City
St Catharines
Rilutek

Rilutek is a drug approved for use in ALS patients. It slows the progression of the disease is some people.
My sister took it for several months until swallowing was so difficult that she gave up on it.
I hope it will help your friend
Jane
 

Syndi

New member
Joined
May 13, 2006
Messages
2
Reason
PALS
Country
US
State
Florida
City
Fort Walton Beach
Hi Gordie

I feel I owe you an apology. I replied to you and made it about my situation. I posted something else on this site and cant find it. So replying to someone I figured that out and Jane answered my one of many questions. I havent completely figured out how to use this site. I could relate to you cause we just found out too. Dave can still walk but not far cause of his breathing. We borrowed a wheelchair from my Mom. But in one way I think the wheel chair takes away from him doing more walking while he still can to keep those good muscles working. I dont know what your Doctor situation is but we dont have one right now. This morning though we are going to get on the phone and find a Doctor, phyical therapist and a food nutritionist, hopefully. We have been so overwhelmed at the illness. He was 180 lbs 3months ago now 130. So anyways Im still making this about us but my point is to get some opinions about a wheelchair. Should you walk as much as possible even though you get so winded and out of breath? Sandy that posted to this I liked reading what you said . The smiles are so important I keep thinking I will run out of tears eventually but so far I have plenty left. So much to say Ill stop for now.
Syndi
 
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