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Alana

Active member
Joined
Jun 25, 2015
Messages
51
Reason
CALS
Diagnosis
05/2015
Country
US
State
CA
City
Long Beach
Hi Everyone out there,
This is the first ever forum for me so I'm learning as I go. I truly wish it wasn't but that's what we've been dealt. My husband of 20 years is only 54 and was diagnosed in May this year. We had the second opinion of course with UCI of Urvine in Ca, the best in there field. It has been like a train ride that has not stopped yet, the wheels keep running down the track and we don't know yet how to make it slow down.

We went to our first ALS meeting and reality set in when we met other people that have the same condition. I've also been to a caregivers meeting which helped as well. These brave, gracious, kind souls made us feel welcome and I hope for us to do the same in time.

It's a lot of stress for the first few weeks as you really have to do so much! Very overwhelming! Living trust and will, social security issues, figuring out when to say no to work, getting your insurances line up, and informing your family and friends. Blah!

I've already booked that family vacation to Hawaii and many other adventures we can have together. I call it early retirement because my hubby deserves every moment enjoying his kids. I will take every advantage we are allowed and I can get away with to see a smile on his face. I was born and raised in Australia with an attitude that will serve me well in the coming years. My hubby knows I vary rarely stand down from most situations, I'm sure I've peeved off a few people in my time, this will test me further.

So too the men out there can you advise me on how I can be supportive with getting him to leave work and enjoy. He is a mechanical engineer/project manager, who bids jobs in construction and visits the sights. But most of all he is very proud man, being the sole supporter for his family he wants to make sure we are taken care of for the future. He is the best husband and father we could ever have.

And that's our story so far. Oh yeah his stage of difficulty is in his arms and hands, loosing there strength, he can still type with a couple of fingers but he gets tired easily. Lots of twitching and legs cramps.

Thank you all for taking your time to read our story, I look forward to reading and learning to help us through this journey.

Ozzychick ( Alana):|
 
Hello, Awful sorry about your having to be here. I've been a member now for six months, having been diagnosed this past December. You asked for some advice from a man's point of view.....that's a wide bell curve, depending on too many variables to list. Your husband however sounds like somebody like me, a fella who is proud of himself, expresses the love of his family freely, and has a solid work ethic. I'll try and help.

If he's like me, his top priority is you, his kids and his responsibilities. At his age, as the sole breadwinner, getting his financial ducks in a row have to be one of his top priorities. Just because he's been dealt a ugly hand does nothing to stop realities of life. That topic must be addressed. While he's still able to work, I'm sure that's where he'd rather be. I believe what I'd suggest to him is to sit down and have a frank discussion as to how you'll survive once his income stops. Before doing so, research organizations that offer aid, brainstorm with other family members that might be able to offer assistance.....be ready to offer positive ideas to him.

Remember, you going out and finding a job, is the last thing he'd be willing to accept. As his physical needs become more labor intensive, he'll need you there with him anyway. Bottom line, from a man's point of view.......him quitting early, and spending money on Vacations, would on it's face would be preposterous.

I'm sure the thoughts of the future are banging all around the inside of his head. A solid workable plan that will get you two through the next 2-5 years is what he needs before he'll be comfortable with any talk of smelling the flowers. Don't avoid that topic......help him through it.

I sure hope this helps.

God Bless Us All................................Glenn
 
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Hi
Sorry you are here
You posted in an appropriate area but I moved this as it will get more views and you asked for some specific advice.

I am not male so can't give you that view point. From my experience making memories is important so good for you in booking that holiday.

Only you and your husband know your financial situation so you are the only ones who can possibly assess how your financial situation will be going forward when he stops work- which he will do sooner or later. Of course look into ssdi any long term insurance policies he has. You did not mention VA so guessing he is not a vet. Once you know all that you can see what the options may be and discuss. The site visit aspect of his job sounds like it might be the thing that is going to be the first big issue. My former job had an out of the office component as well If he really needs/ wants to work he should start looking at what can be modified and what can't. Several of the people here managed a telecommute option for all or part of the job. He probably does not want to think that way but being proactive might keep him able to work longer.
But pushing himself to exhaustion is bad and likely will accelerate things. If he expends all his energy working and has nothing left for his famiky that is not good. He is on an energy budget now. He only has so much to spend each day. He needs to spend it wisely
 
>I was born and raised in Australia with an attitude that will serve me well in the coming years.

another bossy Aussie :) -- you will find a lot of friends here! where from?

------ snip, can't type too well ...

like all the others, sorry to meet you here but welcome!

The next weeks, months will be an emotional roller coaster. Try to go with the flow, expect

fear, anger, bitterness, and a new awareness of life. I have found that being active here on

these forums has helped me in way I cannot explain, but you will see.

before trying miracle cures, etc., ask here, go to alsuntangled dot com.

Lastly, anxiety can be debilitating so beware.

Lastly, lastly DON'T FALL, take vitamins, keep your calorie intake up, and stay away from sick

people, especially w/ respiratory problems.


> I do know it is healthier to be thankful for what still works than to resent what doesn't

(easier said than done :))

also remember the rules:
------
#1 don't fall
#2 don't hang around sick people, at 1st sign of respiratory issue go to doc
#3 conserve energy, rest, never push it, try to relax
#4 stay warm
#5 take vitamins
#6 power off pwc when not driving, don't ram wheelchair into immovable objects, Never allow

the pwc to get into a position with the potential to trap the joystick or otherwise cause it

to self-actuate.

ALS is about living, not dying!
-----
ok well, we take what we get and be glad for what we have :)
------
If you have not yet, go to youtube and search "ALS ABC" and watch all 3. I sent those to

friends and family, too.

Try to go with the flow, expect fear, anger, bitterness, and a new awareness of life. I have

found that being active here on

everyone progresses differently, so don't plan for 'stage' -- take it as it comes.

there's always someone who's got it worse...

find good thoughts to shift when the bad thoughts slide in ...

Max

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Ok max, I'll accept that one...I will let you know however we call them prawns...sorry! I reckon me mate paul hogan only said that so you got the lingo...:):)
 
All good stuff, thank you. And thank you for the move, I'm a little clueless right now with forums. Where is the LIKE button!
Yes, who knew shrimp could be put on a Barbie! Prawns people!
Cheers Alana
 
Nothing wrong with where you posted originally. It is just so far down the page it gets missed by some. If you have not yet start looking at the stickies at the top of the general discussion subforum
 
Alana, sorry you are here, but it is SO good knowing you aren't walking this journey alone. You sound like you have already been proactive in making the best of a sh....Ty situation. The work question will probably take care of itself when he is too tired to do anything else. The other tough one is giving up driving when he becomes less able to do it safely. And depending on his type of ALS, eating can be a difficult issue. Be sure he considers the peg tube while he is still reasonably healthy, as it will make his life easier.
Good luck as you navigate all the pitfalls and know you will find help,support and understanding here. Donna
 
Welcome to the family Alana.
 
Welcome to the family, Alana (or Dittio Tillie).

You're doing fine!
Sherry
 
Thank you (all) for the tips and encouragement.

I will introduce myself, Alana's husband with ALS.

So far the anxiety has been the worst. So many things to do, and the time factor being unknown. Everything is amped up with each new pop, spasm, or cramp. Better living through chemistry is proving to be more than an Advertisement slogan.

I have lots of reading to do here. I need to make the font larger to read.

Thanks (again),

Ed
 
Welcome Ed glad you spoke up. Looking forward to getting to know you. Ask anything you do not find in the stickies or by search function. The first weeks are tough and it is never easy but it is easier after the shock wears off
 
Ed, Alana, sorry to welcome you here.

Nikki mentioned this but it's important so I'll call your attention to it: Ed, are you a vet?
 
Sorry you have to be here...but welcome to a wonderful, caring, and informative community.
 
No. I am not a Veteran.
 
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