Old 12-06-2018, 03:48 AM #1 (permalink)
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Default Just found out - please help.

My husband is in his late 40s. We were told yesterday by our regional ALS specialist that he has ALS. I am in shock and devastated. They started him on drugs already and we are getting him a second option in Boston soon. Hopefully next week.

I need help putting the next few weeks together. We have younger children. I donít know how Iím going to work and deal with this. Please, I need practical advice and some encouraging words.

I cannot sleep or eat as i have been worried that we would be on this path and now we are. Itís surreal. Thank you. Iím so scared.
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Old 12-06-2018, 04:33 AM #2 (permalink)
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Default Re: Just found out - please help.

Good that you are getting a second opinion, always recommended. I’m so sorry this has happened to you. I remember how I felt in the time leading up to Brian’s diagnosis. It was wretched. You will find a lot of great practical advice and support in this Forum so glad you have found us.

This is one tough disease, but if you for now just give yourself a little time to breath and absorb this together with your husband it will help. His life is not over now, even though your lives will change a great deal. At the moment avoid falls, avoid weight loss, Avoid over exertion and give yourself a little time before you start planning for the things ahead. Do read the stickies here about what to do after a diagnosis, but read at your own pace.

Don’t read too far all at once into the Forum. Just give yourself a little time. The first few months are naturally some of hardest. Thinking of you.
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Old 12-06-2018, 05:46 AM #3 (permalink)
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Default Re: Just found out - please help.

Thank you. I’m trying. I just don’t know how to deal with the fear.
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Old 12-06-2018, 05:56 AM #4 (permalink)
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Default Re: Just found out - please help.

It does get better from the panic of first finding out. I am FALS so have been on both sides

I go to MGH. Are you going there for your opinion? They are the best!

All of us progress differently so what you need and when you need it can be highly variable

Please feel free to ask anything but as Lenore says take a deep breath and give yourselves time to absorb this.
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Old 12-06-2018, 04:57 PM #5 (permalink)
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Default Re: Just found out - please help.

There are so many lovely helpful people here to give support. I'm a bit new here myself, and have gotten some great help.

Just as one human to another, I'd say, try to breathe deeply, try not to anticipate things that may or may not happen, especially things that you don't know about yet...and take every day as it comes. Your health team will be there for you, and local ALS Society people are wonderful helpful people too. We seem to all find strength when we need it, somehow, with good days and harder days.

Big hug.

Kathy
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Old 12-06-2018, 05:31 PM #6 (permalink)
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Default Re: Just found out - please help.

A sad welcome, Thomas.

It's unavoidable that you'll have fear that at first goes past beyond your ability to reason and plan. Get through that first, and you'll regain those abilities, well as the ability to speak compassionately and honestly with your kids. After you inform them, if they are in school, it would be wise to inform their principal, teachers and counselor. We're here for you.

Best,
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Old 12-06-2018, 06:24 PM #7 (permalink)
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Default Re: Just found out - please help.

Surround yourself and your husband with family and friends. Getting a second opinion is recommended.

Try not to absorb everything at once. I worked for nearly a year throughout my diagnosis process and it was too stressful. Getting financial affairs in order is necessary but everything doesn't have to be done at once. Pace yourself.

Your husband is going to need you so you must eat, exercise, and take care of your health as best you can. The same goes for your husband.

I'm so sorry you are here but this place is a great resource for both caregivers and people with ALS.
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Old 12-06-2018, 06:32 PM #8 (permalink)
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Default Re: Just found out - please help.

Welcome to the worst club on the planet. But if you have to be here this is a good place to be. Feel free to ask anything and everything, there is a wealth of information here. Rant and rave, if you have funny stories we like those too. As time goes on you may have tips and tricks you have figured out to share. This is a weird time and there is a lot to process. Eventually you will realize you are still yourselves and have the strength to do this. There are some really challenging times coming, but it isn't all happening today. Focus on today and what you can do, and do it! You are among friends.

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Old 12-06-2018, 08:12 PM #9 (permalink)
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Default Re: Just found out - please help.

I would like to thank all of you for your words and your thoughts. I just had a difficult hour or so (I was letting him process with me a bit) because my heart is breaking for him . He is resting now and I am taking deeps breaths and trying to take all of your words to heart.

This is day 2 and we are okay. Thank you all again for taking the time to offer some comforting words. They mattered.
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Old 12-07-2018, 03:05 AM #10 (permalink)
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Default Re: Just found out - please help.

Welcome. My Dad was diagnosed at the end of 2017. I can't even imagine where we'd be without the advice we found here from others going through the same thing. You're going to both need time and you will likely process things at different speeds. It will take time to get through the second opinion. We'll be here. For now concentrate on living every day to the fullest.
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Old 12-07-2018, 11:42 AM #11 (permalink)
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Default Re: Just found out - please help.

Thank you. I am trying to focus on the fact that we need more information about how long he has. He started in his legs -- can't run anymore but can still walk. However, it was quick -- at the end of August he noticed a limp or dropped foot, not he has trouble in both legs.

The only arm they performed an arm emg on was abnormal. His chest, chin and neck emg were normal. His lungs are fine - he had a test yesterday.

What I need to hear from someone is that we are, at least, looking at years (like 3 - 5) not 1 - 2 (or less). Then, we can plan and pave a path to acceptance (whatever that means) for us and for our kids.

It's crazy that I am hoping that someone will tell me my husband will live for 3 more years. I need to think that we are going to be able to live with this disease for a little while before we die from it.

That's what I need....3 years to my youngest is a long time. So, if you can provide some reassurance about time left from where we are now, that may just get me throught today (my youngest child's birthday).

Peace to you today, thank you.
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Old 12-07-2018, 12:03 PM #12 (permalink)
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Default Re: Just found out - please help.

Honestly no one can tell you. The things that kill us directly are breathing if not vented and malnutrition if no feeding tube. Otherwise falls, blood clots and infections can happen as well as the things that non PALS get
Doctors aren’t going to give estimates either - at least not right away. It is possible after observing for some time they might make a general statement about how things are going. My Mgh neurologist did after 6 months but it wasn’t specific more that she thought very slow progression

My sister had arm and leg involvement at diagnosis and lived 4 years but others have had a different experience

Where are you going for your second opinion?
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Old 12-07-2018, 12:19 PM #13 (permalink)
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Default Re: Just found out - please help.

Unfortunately, Thomas, no one can calculate that with precision. Limb onset and younger age are as a whole associated with slightly longer survival, but from what you describe early progression in the legs may be rapid, and progression tends to be rapid as a whole if it's rapid in the beginning, though there is often a slower middle.

If you read threads here, you will see strategies that can improve both quantity and quality of life, such as using mobility devices early to prevent falls, using BiPAP as soon as needed, keeping up with nutrition/hydration, including a feeding tube when needed, etc. Getting the necessary legal/financial documentation in place early, including end of life wishes, can also provide peace of mind.

No one here can offer the expectation of at least 3 years, but you can strive every day to provide him with the ability to accomplish what he can in whatever time he has. In other words, don't chase or worry about "how long," but about "how well." Your kids will be guided in their response by that attitude as well.

I think it's safe to say that most of us here fear(ed) prolonged suffering more than the day of death. The goal to minimize the former while not stressing about the latter -- kind of the "hope for the best, prepare for the worst" clichť -- is a framework for the family to move ahead with life.

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Old 12-07-2018, 12:43 PM #14 (permalink)
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Default Re: Just found out - please help.

Thank you. We are going to MGH. We are trying to be seen as soon as possible.

They are telling us they don't have anything until January.
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Old 12-07-2018, 12:50 PM #15 (permalink)
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Default Re: Just found out - please help.

I'm sorry to also be welcoming you.

I so remember the feeling of wanting to know how long, but as has been said we truly can't guess. The average is just that, but how it plays out in any given individual is wildly variable for so many reasons.

For now, just allow yourselves to be in the shock and do that together. Honestly that first month, even two, are the worst because of the shock. I hope you can get an appointment fairly early in January, just to help get past the whole shock thing.
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