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pmbenb83

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Hi Everyone,
I just wanted to let you know that my husband, Eric, had his 3rd appt at UVA yesterday, and our fears were confirmed. He does have ALS, but they said he has a slow progression. I guess that it is a slow progression is good; if there is such a thing as something good with ALS. Sounds like an oxymoron to me. The doctors said that they have a few patients that they have been seeing for 15-18 years, which gave us hope again. Eric turns 46 this month, so to reach 66 would be great!

We asked about the lithium treatment, and they (his 2 docs) feel that they want the therapy to be out for a while longer before considering it for him. Their reason is that another drug that was successful on mice caused the progression to speed up in humans. Since Eric has a slow progression, they don't want to risk something possibly causing it to speed up. I'm glad to hear they are cautious with him, but disappointed, because I want this to stop so badly! They did give him Rilutek, which I'm not sure how much benefit this will be, but anything is better than nothing that's for sure.

Monday, he will turn in his paperwork to retire early on disability, and we will go from there. We do know that once he is retired and his checks start coming in (an important factor) we will start traveling. We have a lot of living to do and memories to make! :)

Thanks for all of your suggestions and help over the past few months. I'm sure we will have a million more questions as we go along, and I know this is the place to turn to get honest opinions, which is a great comfort to us. :)

Take care.
Pam B in Va
 

CindyM

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I am sorry to hear it, Pam. Let's hope the disability come through soon so you guys can start making those memories!
 

Peg B

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Hi Pam,

Slow is good. You also have a final DX so it will speed up the disability process to where you have almost no waiting time. If your husband gets disability from work then you will have the money coming in until SSD kicks in and they cannot deny you with the final DX of ALS. It is in the law.

I was first DX Oct. 31, 2006. But the second opinion was possible MMN or "Atypical ALS" and SSD said NO, but if I had only the ALS DX they could not. I go back for another EMG and will probably get the ALS DX in May. But as my Doc. said - either way I "have decades" because it is slow. I am 59 and plan to live until I die of something else.:-D

So congratulations - Have great travels. God Bless You real good. Sincerely, Peg

ps. I do have a lawyer and will eventially get SSD.
 

sisgldnhr

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CALS
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03/2008
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OHio
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NW
<< But the second opinion was possible MMN or "Atypical ALS" and SSD said NO, but if I had only the ALS DX they could not. I go back for another EMG and will probably get the ALS DX in May. >>

Peg,

I wonder what will happen with my husband after reading about your situation. His DX does not say ALS. It says 'severe denervation atrophy'. And the neuro just told us that this isn't a diagnosis. All the terminology makes me crazy!

So did you get the second opinion on your own? or did SS request it?

sis
 

pmbenb83

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Cindy - Thank you. He works for the Fed. Gov't, so I think we will be taken care of nicely financially. Since he has slow progression, I think we are going to have many years of making wonderful memories. :)

Peg - Thanks for the info. Eric has had many friends at work helping him with the paperwork for his early retirement/disability. It's funny that you said that you are going to live long enough to die from something else, because that is exactly what I said to our kids who are in their 20s. I'm not sure that they found that very comforting.

I hope you both are doing well. :)
Take care.
Pam
 

northerngirl

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Jan 9, 2008
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Pam,
So sorry to hear about Eric. There will be lots, and lots of good days ahead, embrace them. Your in my prayers.
 

Peg B

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PALS
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Hi Sis,

I am on long term disability. It is part of the LTD insurrance that you go for the lawyer if she are turned down by SSD. I am very lucky as LTD pays me almost as much as DDS and they will pay the lawyer fees. I applied first on April 11, 2007 and the appeal went in in August or so. (can't remember) the U of M Doc, wrote me out as "permanant disability" at the Dec 20 visit. Lawyer says should take 3 to 4 months now or possible more. So it is another waiting game.

Hi Pam,

My kids (25 and 28) were comforted a bit by my statement, but I have lost 2 sisters (car accident - my youngest at 22 and my oldest sister at 58) and the other too are cancer survivors. All the grandparents are gone so my daughters have had some pracftice at this. We are all just grateful as we are more used to "one day at a time" living than those who have not experienced this. So my situation, I assume, is different and so is our daughters. God Bless, Peg
 

Big Mike

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PALS
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12/2008
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re: also recently diagnosed

I am going to get a second opinion next week at the als clinic in Portland, Oregon. If it is als, I certainly hope it is of the slow progression as well!

From what I understand, the lithium trials have not panned out very well after the initial excitement from the Italian study a year ago. Rilutek and the IGF-1 growth hormone are also getting some mixed reviews as of late.

However, Neuralstem, Inc. has recently filed an application with the FDA to begin a clinical trial at Emory University in Atlanta, Georgia sometime this year using stem cells that can be differentiated to become motor neurons and glial cells in the spinal cord. I am hopeful that this treatment could prove to be very therapeutic in the near or relatively near future.
 

kellee107

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Aug 24, 2008
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Loved one DX
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Pam,

Sorry to hear of your husband's diagnosis, but having a slow progression is good. I have found that there are a couple of very important things to keep in mind during an ALS journey:

1) Focus on the positives. There are a lot of awful things about ALS. BUT, three of the GREAT things are that it doesn't mess with your head (dementia), there is no chronic pain involved, and those with the disease still enjoy healthy sexual function. Though those may not seem like much consolation now, I have found solace in them over time.

2) Although none of us live like this day to day, it has helped me to remember that any of us can die at any time. Four "healthy" friends who have been crushed over our present situation and offered extensive condolences in the past year have all died suddenly: three from a heart attack, one from an aneurism. This diagnosis can be your wake-up call to enjoy each and every day with your wonderful husband. Many people go through life not realizing that, and then they lose someone suddenly and wish they had more time....

ALS is a hard journey, but there can also be many blessings along the way. I wish you all of those!

Kelley
 

pmbenb83

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Thanks

Kelley - Thank you for your kind words and inspiration. It has been almost a year since his diagnosis, and we've been doing exactly what you have suggested. I'm sorry to hear about the loss of your dear friends. It is a reminder to us all to be thankful for every day that we are given.

Big Mike - Good luck with your clinic appointment. I hope you get good news! One similar disease that has a known treatment is MMN. If you haven't done so already, maybe you could be checked for this also.

Take care and good luck.
Pam B in Va
 

ahpeditor

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Jan 15, 2007
Messages
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CALS
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US
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IA
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Des Moines
When my wife Lisa was diagnosed in Jan 07, the first thing we did was purchase an RV and traveled every chance we got. Unfortunately, that was only for a year. She lost all use of her extremities after a year and the RV was just too much work. I wish you the best.

Joel
 
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