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mimi

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Joined
Mar 30, 2006
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9
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Learn about ALS
Country
US
State
New York
City
Dover Plains
Hello everyone, today my neurologist talked to me about ALS and my possible diagnosis of this. I literally almost fainted with fear. When I got in my car I was so angry I was stamping my feet like a child. As I came upon this site I immediately felt comfort with all of you.

I was trying to sleep and just could not with todays event looming in my mind. so I hopped on the pc to begin to educate myself when I came upon this site and found it so positive and sharing.

Fear is a horrible thing and do not want it to take over me. I am set up for a barrage of tests over the next month.

I hope you don't mind me sharing these feelings.

Thank you for listening.
Mimi

PS: I think I will become a bailer (I liked that terminology one of the members used at one of the forums site. Just keep ahead of it.)
 

Countrycouple

Active member
Joined
Sep 24, 2005
Messages
53
Reason
Loved one DX
Country
CA
State
Ontario
City
Lanark
Welcome Mimi..
So sorry about your news.. But THIS is the place to be.. Everyone here is VERY VERY helpful.. and will help and support where ever they can..
Mike
 

TBear

Distinguished member
Joined
Nov 4, 2003
Messages
430
Country
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State
ON
City
Uxpatch
Hi Mimi:
Sorry you need to access this site, but, over the years it has been a good one for many people. If bailing means keeping ahead of sinking, that's good. In my business it means baililng out!
Good luck,

CHeers

T.
 

Elo

Active member
Joined
Mar 16, 2006
Messages
41
Hello

Hi Mimi, I know what you are going through. Just hang in there. My husband and I went through a trying time when he was in the process of doing all these tests and even to this day, but be strong everyone here is very encouraging and have such a positive attitude in dealing with this illness, who knows, you may not even have a motor neuron illness, just take it a day at a time. All the best. Elo
 

hope

Distinguished member
Joined
Oct 1, 2005
Messages
230
Mimi,

Welcome to this site. As the others have said it is a wonderful site. Everyone hear is kind and caring and very supportive. I wrote an article in a paper recently stating what it felt like the moment we were told my husband had this illness. I wrote, time stopped for a moment, we were frozen in time which I am sure many people have said. We looked at each other and truly fell into each others arms. There was not a word spoken for a short bit. I wanted us to never pull apart. I remember saying oh dear god, please please make this be just a mistake, it is not real. Six months later it still has not sunk in, we are still struggling to accept what is going on. I guess we are in a shock state that will be there for a long time. We go through the motions of living each day and we are trying to face this with great strenghth. I love my husband with all my heart and soul and we will wear the face of hope for the weeks, months and hopefully years ahead. He is my best friend and I will take wonderful care of him but I have to say knowing there are people here who care so much gives my heart more hope.

Sandy.
 

rcharlton

Moderator emeritus
Joined
Jun 20, 2005
Messages
610
Reason
PALS
Diagnosis
11/2005
Country
CA
State
Ontario
City
Toronto
Hi Mimi,

I was diagnosed with ALS in June 2005. I nearly fainted too when I heard - the blood all rushed up to my head - everything became foggy.

That first day - I figured my life was over. I thought that I would never be able to be happy again - no matter what I did - I would have the unbearable weight of this diagnosis on my head - and that it would taint every aspect of my life.

Well it's been 10 months since my diagnosed - sure there have been some tears - but I've still been able to have lots of laughs as well.

For the first few weeks I was so completely overwhelmed with emotions and information that all I felt like doing was curling up into a feotal position. Do this - don't do this - don't waste your time and just give up - pretty crazy stuff - everyone has a different opinion - no one being able to say for sure whether it makes any difference. Whew!

But I then adapted to a new normal. ALS became part of my life - but I was not consumed by it. The human mind is an amazing thing - you will adapt to a new normal very quickly.

Just take a while to hug yourself - your family members - a dog - a cat.

Then start sifting through all the advice out there. Just remember - don't substitute somebody else's common sense for your own. You will become the best judge of what works for you. Every case is different.

Just remember, we are all in this together!

Richard
 

mimi

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

I cannot tell you all how welcomed you made me feel and not so alone. Thank you, Thank you soooo much!

When I heard what the Doctor was saying to me I thought WOW! I am alone! But with all your encouragement I know I'm not.

With much gratitude,
Mimi
 

Carol Deboer

Distinguished member
Joined
May 7, 2003
Messages
343
Hi There,

I agree with the gang. Hang in there, you will be alright. It does not seem so right now, however, new normals will come and you will adapt. I know, it was not easy for us either, but, we made it through almost 8 years. I think back and wonder how we overcame such obstacales, but we did. You just learn to roll with the punches, and when you are down, allow yourself to be sad and angry, that is normal. In our everyday life we carry a variety of emotions anyway, so when you need to vent, we are here. Good luck, and with any luck maybe the final diagnosed will not be als. Lets pray it isn't. I am glad that you found us, and remember you are not alone.

Hugs, Carol
 

ladave

Distinguished member
Joined
Feb 12, 2006
Messages
136
Hi,

I can't add much to what's already been said. My reactions were almost idenical to RC's, I remember literally lying in bed and yelling at the world to "go away". I also wondered if I'd ever smile again. Well it is two months later and I'm smiling plenty- even went to a dance competition today and didn't cry once!

Look I don't want to sugar coat this, it is awful for all of us (the frustrations connected with getting dressed are alone enough to drive one mad). But you will get through it, and this community will be here to help.
 

hope

Distinguished member
Joined
Oct 1, 2005
Messages
230
mimi welcome to this site. I am so sorry you are going through this. I wish I had the right words to say to you that would take away the fear. I remember when my husband was diagnosed I too was so angry. I could not believe what we were hearing. It is hard to know what to feel. Your emotions will be all over the place. Please know that everyone here is very kind and caring and we are here for you. Always hold hope in your heart. Never give up the fight. When you feel scared and sad know you can post and someone will be there to help. I have asked myself so many times why, why, why. I cannot find an answer to that and I could be asking that question forever and never have an answer. Support of loving and caring people are very important. Let your family and friends be there for you.

Sandy.
 

spud01

Active member
Joined
Apr 4, 2006
Messages
37
Reason
PALS
Country
US
State
Maryland
City
Millersville
Mimi,

I know how you feel. I am going through the process now of diagnosis. It is so hard waiting and wondering. I too am new to the site. Already I find support just reading other posts. I am full of fear due to the unknowns. But, I believe on this site your unknowns can be answered and you will find support. This is a wonderful site. This disease is so scarey. Like I said waiting is horrific.

Spud
 

Michael FM

Member
Joined
Apr 15, 2006
Messages
12
Reason
PALS
Country
US
State
oregon
City
corvallis
Hello Dear Mimi,
I just signed up today and this is my first interaction. I want to share with you that when I found out I had ALS, I was actually delighted! How can this be? The previous evening, I was over at my ex-girlfriends and we were reading a book by Rudolf Steiner about illness and karma. I'd learned that the dieases we acquire are here for us to learn valuable life lessons although the lessons may not be known to us intellectually. However, the suffering we experience will make us stronger spiritually which will show up in our next life. I regarded the news about having ALS as a gift from God to further my spiritual development which is why I'm here. My focus now is to deepen my spiritual growth through studying spiritual science which is incredibly uplifting. I also hold onto the possibility that I may become cured of ALS by way of my growth. The ALS is here to wake me up spiritually so if I can wake myself up, I can turn off the alarm! I'm not attached to being cured - - if I die from it, I'm all the better spiritually. I hope this perspective of having a disease can be appreciated by more people. It would surely add to the spiritualization of the world and we could use that. Mimi, you are loved and cared for more than you will ever know. Be at peace, Michael
 

Al

Moderator emeritus
Joined
May 25, 2004
Messages
7,960
Reason
PALS
Diagnosis
10/2003
Country
CA
State
On
City
NW of Toronto
Hello Michael. That certainly is a different perspective on the disease. We each have to deal with it in our own way. My wife sometimes tells people she thinks I got this disease to offer hope and friendship through this forum. Some might call that karma as well. I don't know why I got it but I guess it was in somebody's big plan for the universe I guess. Who Knows? We just take it day by day and try to have as many good times with family and friends as we can manage.Sorry you had to be here but you're the second new person from Oregon on the forum. Welcome to all.
 
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