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BlueSeattle

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May 7, 2011
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CALS
Country
US
State
WA
City
Seattle area
I hope nobody minds... below are somewhat random jumbled thoughts....

My wife was officially diagnosed with ALS about 3 weeks ago... though she's asking for a second opinion. We first learned about ALS about 2 years ago when she went into the dr about her leg. It was smaller than her left and it would get tired after walking a lot, but there was no pain. They did a bunch of tests and saw no progression in the muscle loss so we thought we'd dodged a bullet. Then in the span of only about 6 months her mother went from being totally healthy to passing away of ALS. We were already planning to get married and she didn't make it to the wedding. :-S

Her doc is one of the best on the west coast our only hope is that he's so focused on ALS that he's being narrow minded and missed something. Unlikely, but at least it's hope and that's what I look for now.

Looking back my wife says the first symptoms started about 4 years ago when she was in a workout class and couldn't stand on her toes... She didn't think much of it then. That was before we'd met. I'm 30, she's 38.

Right now she can walk, but with a limp. We just moved into an ADA apartment from my 3 story townhouse as stairs are beginning to be a problem.

My wife is an athiest while I was Christian who's now lost his faith. Even if he does exist, I'd only want to meet him to strangle him for this torture. Funny, she asked me the other day about going to church... Her words "It can't hurt."

I don't know what to think... her symptioms aren't typical, it's moving very slow, but it is progressing. Every time I see her stretch her right arm, inside, I freak out thinking it's spread. When she hands me a jar to open, I question to myself if she's getting weaker. How much longer can she drive? Should I get a hand operated car? Having to short-sell my condo, my credit is wrecked so I can't even afford one. What do I do in the future when it's worse? I can work from home from time to time, but she's going to need full time care and I can't afford that. We've got family in the area but even then.....


Anyway, before I drive myself crazy, I just wanted to introduce myself.
 
you need to apply for early Medicare, it becomes effective quickly based on the ALS.
Is she being seen at an ALS cllnc? If is not,she needs to. There she will be treated by a multi disciplinary incuding a social worker.Many ALS clnics are funded by the MDA/ALSA. They have grants for care as well as loaner closets of equipment. The ALS clinic can help you anticipate needs before they become urgent. As far as a belief in God, none is required,"but can be a source of support for you both".I am glad you found the forum, we are here for support,info.
advice and yes, prayers.Hope the slow progression continues.
blessings,Pat
 
Sorry that you are so stressed.All you can do is take one day at a time.& PRAY it doesn't hurt.God Bless you both.
Sharon
 
Sorry, I didn't mean to bash on anyone's faith... I'm just so angry right now and who else can I focus it on. It's such a senseless and terrible disease...

I've prided myself on being a good person and as a logical person I've always found faith a bit trying but if you'd asked me 3 years ago about my faith I'd have said it was rock solid. Today I cringe when my mother says her whole chior is praying for her and I fear the day she asks me about how I'm handling it because of what I might say. I'm the type of person that usually takes time to choose my words cafefully as I know what the impact can sometimes be.... but sometimes I slip and then it can be like opening the flood gates.

Lately I've been thinking about the story of Job and I understand the story from the point of view of Job, what about the senesless killing of Job's family. What did they do? Did God not care about them?



As for pain, one of the odd things that the Drs can't explain is that she has no pain. A cramp here and there, but that's it. It's also skipping muscles in her leg. She feels twitching in her butt, yet even today she doesn't have drop foot and most of the musclues in her upper leg are still working. (her lower leg, where it spent the vast majorty of the last three years still as a muscle or two left as well.) I don't know if this part is normal or not... I honestly kept myself from reading up on ALS until now as I just felt "hoping" it was something else would make it true....
 
you need to apply for early Medicare, it becomes effective quickly based on the ALS.
Is she being seen at an ALS cllnc? If is not,she needs to. There she will be treated by a multi disciplinary incuding a social worker.Many ALS clnics are funded by the MDA/ALSA. They have grants for care as well as loaner closets of equipment. The ALS clinic can help you anticipate needs before they become urgent. As far as a belief in God, none is required,"but can be a source of support for you both".I am glad you found the forum, we are here for support,info.
advice and yes, prayers.Hope the slow progression continues.
blessings,Pat

Not sure by what you mean by ALS Clinic. I work for a company with excellent benifits and she was seen by Dr. Wiess at the University of Washington Medical Center's Department of Neurology. Her second opinion is hopefully going to come from one of his co-workers who's retiring soon. From there I guess we go to the Mayo clinic. Is the ALS clinic something we do once we've exhausted all other options or should we be doing this in parallel?
 
Blue.. check online for the ALSA nearest you. They will be able to tell you where the nearest ALS clinic is... they are frequently attached to medical schools or teaching hospitals, and as was already said, will have a multidisciplinary team to help address your questions. They will also help connect you with support groups.

Also.. don't feel the need to apologize to anyone for your own faith crisis! I was talking to a dear friend.. who happens to also be a Jesuit priest AND a licensed family therapist. He also just lost his mom to dementia. I mentioned that I was just MAD at God right now and not really on speaking terms. His response was "That's totally appropriate. You'll work it through in your own time." I pass that on simply as a reminder that it is ok to feel what you feel in a horrendous situation, and what works for someone else is not necessarily what works for you. As with all things in ALS, "It is what it is."
 
I don't mean to be doom and gloom, but you said your wife's mother died from ALS. Has your wife been tested for familial ALS? That is done with a blood test, and is definitive. It would save you the hassle and expense of going to more doctors and having more tests. The ALS clinic is sponsored through the ALS and MD Associations. The Neuroscience Institute at Virginia Mason, (206) 341-1900, looks like the place to go in your area. They have a dedicated ALS research facility there.
 
Yes, we did the genetic ALS test at it was negative, however, it's our understanding it only detects about 20% of familial ALS cases. I'll check about Virginia Mason.

As for medical expenses, so far I we haven't had to pay for anything... I have very good medical insurance through my work and they've paid 100% for everything including the IVIG treatments we tried as a last resort before the diagnosis. From a cost perspective, I'm more worried about things like buying a powered wheelchair, a car that can carry it, in home care, etc... stuff insurnace won't cover (or maybe I'm worrying abot nothing... maybe it is covered)


Stupid question.... I've always been a very healthy person. Who do I go to at my work to ask about stuff like this? HR? I doubt my boss would know...
 
Hi Blue, I'm sorry you find yourself here. If your wife has had symptoms in her legs for 4 years and is still walking, you both can take some solace in knowing she has very slow progression. Generally, after that period of time with that rate of progression you can be fairly confident that it will remain slow. I walked for about 6 years after my first leg symptoms and now nearly 11 years later am still driving a wheelchair van with hand controls. I don't think you will need to rush into anything. BTW, most any car can be adapted to hand controls for a few hundred dollars.
 
Has your wife working or has she worked enough to have social security disability insurance? If so, medicare will cover 80% of durable medical equipment. My guess is that your insurance will cover at least that much.
 
She was working up until she first saw the Dr in 2009. She'd actually quit her job and went in to see the Dr about her leg before her benifits ran out.... The whole time she'd planned to go back to work, but it wasn't a priority. Right now she's just doing after school care for a family nearby. More just to keep her busy than anything

John
That's good to hear about the progression.... Maybe there is hope yet.... hell, maybe I have time to go to medical school :) (as a software enginner, I like to think I can figure out anything...)

Funny I've always thought she'd outlive me. My grand-father died at 45 of a heart-attack and my father died at 39 of an aneurysm inside the pericardial sack that caused a heart-attack.
 
If she already has a diagnosis of ALS, she needs to apply for SSDI, that would give you extra money and extra medical coverage. You may be able to use your insurance coverage from your work to cover what Medicare won't (copay and misc).

Your best bet on finding out what your insurance will cover is to look at the coverage manual that you should have gotten. If you don't have one, ask HR. You will need to sift through it and look at the Medicare website. That will educate you on what future expenses may be out of pocket.

I'm sorry this is happening to y'all!
 
Hi - I sent you a visitor message with some links for a clinical trial at UWMC that you may want to look into.
 
Hello

If you're going for a second opinion; which I'd recommend, get it from an ALS specialist. The ALSA website will give you a list of them in your area. It's always best to get a confirmed diagnosis from a doctor that specializes in the disease in my opinion (and I was also told this by the ALS group where I live)

ALS is only diagnosed after all other possible causes are eliminated, so I'm assuming she's had all the blood tests, EMG/NCV, brain and spinal MRI's etc.

Slow progression is good! There's no reason to think it won't continue to be slow. Usually for a confirmed diagnosis of ALS they need UMN and LMN signs--is it just the LMN in her leg that they've found?

It would be rare for a parent to have ALS, then a child--and have it still be sporadic ALS--though I suppose anything is possible.

As others said, have her apply for SSDI and medicare. Don't worry about the expenses of things like wheelchairs and such. When or if they are needed, either your insurance or medicare will cover them. If they won't--there are loaner closets in most larger ALSA chapters.

The large centers have multi-disciplinary clinics with everything from speech therapists to pulmonologists to social workers. They will give you both support as well.

Most would suggest getting equipment sooner rather than later--it's much better to learn to use any assistive devices before they are required.

The folks here are wonderful for answering questions. Your wife, should she want it, will find support here as well.

Our thoughts and prayers are with you both.
 
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