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andyvaughn

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CALS
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ca
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thousand oaks
Well, my husband and I spent the day at the ALS neurology clinic at Cedars Sinai hospital yesterday. After a very long day of testing, consults, etc, the doctor told my husband that she couldn't find any other possibility, so it is ALS. He has nerve damage in his arms and torso, also his hip flexors. He has non stop visible fasciculations of his left arm and beginnings of it on his right that are visible, as well as recordable fasciculations of his back muscles, but aren't visible. Needless to say, we are both overwhelmed, afraid, sad. She gave him a prescription for the medicine that is supposed to slow progress, and she is starting a clinical trial next month that she will put him on. We are both very scared, sad, etc. I don't know what to expect from here, or really what to do. There are some really obvious things, she suggested he not work more than 4 hours a day, he is a contractor so we are putting plans in immediate place to help him there, we are going to sell our multi story house for a smaller, cheaper single story. Other than that... we are just lost and scared in dark dark woods. I must say that I feel in good hands at the clinic, the doctors and staff were compassionate, and gave us a lot of info, maybe too much. We do go back in 2 weeks to go back thru with the msw, dietician, speech therapist, etc just to reinforce what they told us and also see the docs again. .... Thank you all for the feedback you provided prior. You are all my heros... God bless us all...
 

hopingforthebest

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Joined
Feb 20, 2007
Messages
355
Diagnosis
02/2007
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US
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NJ
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Mays Landing
So sorry! You will go through so many "feelings" and emotions. Let the tears out and know that with so many people affected by this horrible disease a cure HAS TO BE NOT too far off. That is my hope. We will hang on to the hope and to God keeping us all strong.

Take care,
Patty
 

vmd

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Apr 27, 2007
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idaho
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andyvaughn:

I will keep your husband and your family in my prayers. One good thing about having found these boards is that you will see PALS handling the challenges that ALS throws at them.
 

Al

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Joined
May 25, 2004
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Reason
PALS
Diagnosis
10/2003
Country
CA
State
On
City
NW of Toronto
Andy I think you know you have found a good place here. We will help you find a way out of the darkness. It may take some time but we'll help in any way we can.
AL.
 

rick/Wpg

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Joined
Jan 4, 2008
Messages
149
Reason
Lost a loved one
Diagnosis
02/2008
Country
CA
State
Manitoba
City
Winnipeg
We are so sorry about the diagnosis! We understand the shock of it all! Thank God we have Him to help us walk through this valley and darkness! Our thoughts and prayers are with you both!
 

Shatzie

Active member
Joined
Nov 12, 2007
Messages
86
Reason
PALS
Diagnosis
02/2008
Country
US
State
OK
City
Tulsa
Even though this is something I would not wish on anyone, I am happy that you, too, received a quick diagnosis. Some people are in limbo for years waiting to get one. I was encouraged by a close friend who is a family counselor to journal. That's why I started my blog here. At this time I am the only person who is blogging, and sometimes I think, "Does anyone really want to hear about my life?" but I started by writing in a bound journal and I found that I enjoy my journaling better when I type it. So I thought maybe someone else would be helped by hearing what I am going through, to know they aren't alone.
 

Icanmanz

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Joined
Jul 14, 2007
Messages
947
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PALS
Country
Uni
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Texas
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Tomball
andy, I am so sorry about your diagnosis. I know the feeling. It is not good. He will help you through this journey. This board is very helpful, lots of caring folks here. Feel free to ask whatever you wish. May God bless you, and your family.

Irma
 

hopingforcure

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Joined
Feb 14, 2008
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1,420
Diagnosis
09/2007
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Any
You are among like hearts here, like others have said, this is a sad time, but I think you will come out of this time, and like Hoping for the best put it, a cure has to be in the future. Let your love guide your heart, and you will have that. We are all here in this journey with you. Hoping
 

andyvaughn

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Joined
Feb 12, 2008
Messages
138
Reason
CALS
Country
US
State
ca
City
thousand oaks
Thanks to everyone

Thanks to everyone here. I promised my husband not to look at anything else on the internet for a while, but couldn't help a quick visit back to you guys. You are all shining examples of courage and hope for myself, that gives me the strength to face another few minutes of this day. My prayers are with each and everyone of us... my husband asked that I just stop reading for a while, and that we let the journey be a day by day course and stop looking towards what the future will hold. In his honor I will step back off the internet for at least the 2 weeks he asked, (he said at least until after our next doctor appot) and we are just going to do what we need to do for now.... with much love and admiration of you all....Andrea...
 

hopingforcure

Very helpful member
Joined
Feb 14, 2008
Messages
1,420
Diagnosis
09/2007
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US
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USA
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Any
Andrea understood, we will be here, and remember what Augie Nieto said in his book, it is something that always sticks with me, and now seems a good time to quote it.
His wife Lynee says. "The worst day of our life was the day Augie was diagnosed, the best days have been since then." I take heart in that statement everyday... Hoping
 

CindyM

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Sep 17, 2006
Messages
3,543
Reason
Learn about ALS
Country
US
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New England
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Anytown
Hi Andy- I know you are on break from the internet - you probably need the rest after so much worry and now this DX! But I wanted to say I am sorry your hubby is joining the ranks of our PALS. we lose some PALS every month, and gain new ones too. Neither situation is good. Peace, Cindy
 

northerngirl

Distinguished member
Joined
Jan 9, 2008
Messages
106
Reason
Lost a loved one
Diagnosis
11/2007
Country
CA
State
BC
City
Kootenay
Andrea,
Life is s journey, I know you will be back here sneaking peeks, for several reasons , support, understanding, knowledge, and hope. And when you come back we are here. you will go through a process and it will be all over the place fear, anger, sadness and importantly hope. There is some ugliness with ASL but there is some very inner restrengthening stuff too. ALS is a kind to alzheimer's but over many years you loss you strength you do not loose your mind. (LOL OK at moments!) so you have years to say those things, give those hugs and you can smile and mean it. Mom could maybe had ALS for 3 years before a diagnosis. and life goes one and we have good days:-D
More people are saying prayers for you that you can imagine!
Luv Laurie
 
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