Old 10-31-2011, 12:46 PM #1 (permalink)
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Default Looking for some advice

Just a quick question for you all -

I was diagnosed in June, and obviously it's been hard on everyone close to me. My question (and I guess it's mainly directly to the women out there, though anyone fee free to chime in) is what I can do to try and ease the stress/burden for my wife, who's 7 months pregnant. (side note - we found out she was pregnant about 3 weeks before my diagnosis - how's that for highs and lows!)

I'm still fully functional - some weakness, twitching, and cramping, but otherwise totally "normal". we're both 32, and it's a hell of a lot to deal with, trying to figure out how to handle what's going on with me as well as preparing for a baby in 2 months. Any suggestions would be really appreciated - I guess I'm just kind of at a loss with how to make the best of it all.

thanks,
Mike
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Old 10-31-2011, 01:24 PM #2 (permalink)
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Default Re: Looking for some advice

Gosh, Mike! That is a lot to deal with. I think Danjela and Becca would be the ones with the most experience with the pregnancy/babies/spouse with ALS situation.

I can only hope you have a very supportive family that lives close by or real stand up friends. Perhaps tap into both those groups to prepare for the baby and help your wife. Then in the meantime, you can concentrate on SSDI, private disability, Medicare, house remodel, equipment, etc...

But, of course, when the time comes for baby, I hope you are able to forget about ALS and celebrate your wonderful new bundle of joy!
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Old 10-31-2011, 08:12 PM #3 (permalink)
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Default Re: Looking for some advice

Hi Mike,
Sorry for your diagnosed and your age,most get it lot older.Are you a Vet,major question because if you are the VA will help you in a big way and pay for all,contact the PVA asap.Also contact the MA. ALS chapter,tell them you story and ask what you should be doing,get the info on your local ALS support group and go to the meetings,you will learn tons of info.Prayers are with you and your family,good luck,slow progression!-----------------------------------------------------Ken
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Old 10-31-2011, 08:21 PM #4 (permalink)
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Default Re: Looking for some advice

Mike, welcome to the club that no one wants to belong to...but glad you found us. I would say just take everything easy... do not push yourself physically.....no heavy exercise, running , ect....because that may bring on the symptoms faster. Stress is bad too, so relax and enjoy life. Let go and take one day at a time. Celebrate the new life coming to you! I am praying you have a very slow progression...hope for the best..
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Old 10-31-2011, 10:02 PM #5 (permalink)
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Default Re: Looking for some advice

Just be nice to her and be patient. Good advise for all us CALS and PALS

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Old 10-31-2011, 10:58 PM #6 (permalink)
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Default Re: Looking for some advice

Do you have disability insurance?

Would you be able to survive financially if you stopped working?

I retired from work just before my wife gave birth to our daughter. We were both home together for a year with our beautiful daughter before my wife had to go back to work. It was amazing.

I would recommend doing everything you can to maximize your time at home immediately.

Good luck
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Old 10-31-2011, 11:33 PM #7 (permalink)
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Default Re: Looking for some advice

Hi Mike!
Congratulations on the new bundle of joy ready to join your family! One of the things I like to hear is "We are going to take this one day at a time", "We are in this together", "We will get help when you want", and of course, "I love you"....maybe those are things I told my PAL, but as a CAL I like to hear them too and he has said them recently. It was also nice to know we could try and take a little trip or time together--my PAL Jim was not up for that at first---there were a lot of things to do and he wanted to hurry and get all of our finances, paperwork and house in order....but over time he came around, we could talk about some of the emotional distancing that was happening and now we're back to "normal" joking around, etc... It also helped to share how we were feeling because we weren't grieving at the same time or in the same order so we could chat about where we were at (it's called anticipatory grief).

The fact that you are asking tells me that you're a sensitive soul who cares deeply about his wife and new family! Hold eachother close and take one day at a time. Sometimes it feels like the rug is being pulled and things shift---get your bearings, hug, talk and pray together--it's powerful. Hope that helps a little!
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Old 10-31-2011, 11:53 PM #8 (permalink)
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Default Re: Looking for some advice

It's a tough thing to wrap your head around but I always lived for the day even before this diagnosis.
You have something wonderful happening in 2 months. Enjoy every second, not because of your diagnosis, because they grow up so fast
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Old 11-01-2011, 12:23 AM #9 (permalink)
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Default Re: Looking for some advice

Thanks so much everyone. It really is such a bizarre situation - we had been trying for over a year, finally got the good news, and then got my bad news. I've accepted that I've got this disease and that things are going to change, but as of now things really haven't. The day after my diagnosis I ran a 5k, and I really haven't lost much in the way of strength or stamina - (I'm in the dex trial, so that may be part of it, if I'm getting the drug). Aside from the visits to Columbia and the meds, my life really hasn't changed... It's like I'm just waiting for the other shoe to drop. I guess in the meantime all I can do is wait for my little girl to get here and enjoy her when she arrives.

I'm not a vet, but I've got solid insurance coverage through my company - not really a point where I can take time off, but it's nice to keep things normal, I guess.

Thanks again everyone for your suggestions - here's to hoping the dex works, the progression is slow, and they finally figure out a cure to this thing already...
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Old 11-01-2011, 09:39 AM #10 (permalink)
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Default Re: Looking for some advice

Mike

There are a good number of people on disability who suffer from depression. So if you are thinking you won't qualify yet - you will.

Also check to make sure everything is in order with your insurance. Maybe you have some options to increase the amount that you can exercise.

I had some crazy issues with my insurance that if I had not looked into would have invalidated my policy.

Also the benefit amount is based on your income, and can go up and down with income changes. So if your income is performance based, you will want to retire on a high note.

Chances are, with a baby on the way and your diagnosis, your work performance will suffer. And trying to stay at work as long as possible may actually result in a lower disability benefit - which could be devastating in the long run.
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Old 11-02-2011, 03:57 PM #11 (permalink)
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Thumbs up Re: Looking for some advice

Mike

I am sorry that you had to find this site... but glad you did.

Congratulations on your new little one! You will be very busy as a new Daddy... just enjoy the time with your family! Sometimes concentrating on someone else will take your mind off what is happening to you ... if only for a little while.

I know we will all wish you a very slow progression and hope for a future cure! Don't keep your wife out of the loop... let her know how you feel and ask for her help in deciding everything! It will help in the future when she might have to make decisions for you and your family!

Visit here often... many on here are very wise and some of the best advice you will find...
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