Mrs. W in IA

[Cubfan06]

Hang in there Gary. My thoughts and prayers go out to you guys in this difficult time. Stay as positive as possible. Miracles and good things do happen.

[Penny Lane]

My thoughts and prayers are with you and your family, GW.
Fingers crossed for the experimental drug, though!

[beantownbubba]

Thinking of you guys.

[AprilTwister]

Very sorry to hear this terrible news ~ sending love and positive thoughts some good will come at that "second opinion" appt.

Hang in there and thank you for reminding us to do something very important:

"love your people a little more today"

[Sterling Big Mouth]

GW, I'm real sorry to hear the news. I hope you're both during well, and smiling every chance you get. You're both in my thoughts. I hope we all get to meet at a Rock Show soon!

[GW in IA]

Its clear that I'm no good when left alone. Mama and both kids went off this morning to see family for a few days.(funny ho family is crawling out of the woodwork these days) With them gone I don't have any motivation at all.

Thought I was doing good for awhile but things have been kind of gray around here lately.

It has been brought up that I should maybe look into antidepressants, but I really hate that idea.

Interesting sidebar: we are still just a regular married couple, and we still have our regular, petty, married couple disagreements, but it's a lot different being upset with her now than it was a few months ago.

I feel like I might have given the wrong impression of the experimental around here. Best case with this drug is that it will slow the progress of the ALS. As of now, I don't think there is anything in the works as far as stopping, or curing it. (Stem-cell research is out there, but seems to be a distant dream for now)

I love that I come home every now and then and see a new post of support on here.

A little too drunk/tired to make much sense right now, but just wanted to check in, and let you know just how much your support means.

[beantownbubba]

Its clear that I'm no good when left alone. Mama and both kids went off this morning to see family for a few days.(funny ho family is crawling out of the woodwork these days) With them gone I don't have any motivation at all.

Thought I was doing good for awhile but things have been kind of gray around here lately.

It has been brought up that I should maybe look into antidepressants, but I really hate that idea.

Interesting sidebar: we are still just a regular married couple, and we still have our regular, petty, married couple disagreements, but it's a lot different being upset with her now than it was a few months ago.

I feel like I might have given the wrong impression of the experimental around here. Best case with this drug is that it will slow the progress of the ALS. As of now, I don't think there is anything in the works as far as stopping, or curing it. (Stem-cell research is out there, but seems to be a distant dream for now)

I love that I come home every now and then and see a new post of support on here.

A little too drunk/tired to make much sense right now, but just wanted to check in, and let you know just how much your support means.

I hated the idea of anti depressants for a long time. I still do. The difference is that I take them anyway. They work for me to an extent and they make a difference in my life. This is complicated stuff w/ no easy answer, but there is a right answer for you. It may be taking the drugs, it may be not taking them, but u owe it to yourself and your family to consider it more carefully than "that's not for me" (and feeling justifiably annoyed w/ and distrustful of people who think that there's a drug for everything even if it's totally normal and rational that you're depressed). PM me if u want to talk about it.

OMG, G i feel for you so much re the daily ups and downs and trying to figure out and adjust to the new reality. Every family, every person, is different but here are some thoughts. I hope they help.

For those times when you've got to be strong and suck it up for everyone else, but there's no place for u to dump it, dump it here.

Guilt is a waste of time. You'll make mistakes, she'll make mistakes, everyone makes mistakes. Don't agonize over them, just move on and if nothing else, don't feel guilty about feeling guilty.

You're human. You'll fight for reasons good and bad. You'll get annoyed over stupid stuff. You'll feel guilty about it. But it's a mistake to try to be somebody you're not in order to act the way you think u should. It can work for 10 minutes or 2 days or a week, but eventually it becomes untenable and causes more problems than it solves. But OTOH, there is a time and a place for everything and not every complaint or argument has to be aired or pursued "right now."

That's different than trying to be the best person u can be. That's always worth the effort, even if u regularly disappoint yourself.

What you're going through is fucking hard. Really fucking hard. It's ok to sometimes need to get away from it or to have thoughts that make u feel bad or guilty or whatever it is that's got u down at any particular moment. But the bottom line is that you've still gotta do what you gotta do (whatever that may be at any given time), and we both know you will so cut yourself some slack on the other stuff (don't judge yourself too harshly or by an impossible standard).

People want to help. Let them. Ask for help. Tell them what u need and let them do it.

"A day at a time" can sometimes sound like a tired cliche or a punchline and it doesn't necessarily fit all circumstances at all times, but on the whole, it's not a bad approach.

{{{GW}}}}

[pearlysnaps]

I imagine how you are feeling is completely normal, GW. I mean "doing well" has to be given the qualifier "relatively" because of the situation. As btb said, what you and your family are going through is fucking hard. It's alright to fall to pieces once in a while or to vent. Just think of 3DD as the pressure-relief valve, buddy. Feel free to come here and dump the excess shit you need to get out. Hang in there.

[Lurleen McQueen]

GW - hang in there buddy. This is just a temporary downward dip on your roller coaster.

I don't know if you would find antidepressants helpful, but it might be helpful to enlist a therapist at some point - just for talking things out...Remember that we are here too.

In an attempt to get a handle on ALS, I went to the ALS association website and found this guide for newly diagnosed folks. I'm sure you've already found this resource and have read it cover to cover.

There is a page about "Caring for the Caregiver."

I know that I may be looking through extremely rosy glasses, but there also seemed to be a few folks who actually have had ALS for 20+ years and are managing with it. I'm just hoping and praying that Patty falls into that category.

http://issuu.com/alsassociation/docs/guide_to_living_fuller_life_with_als?mode=embed&layout=http%3A%2F%2Fskin.issuu.com%2Fv%2Flight%2Flayout.xml&showFlipBtn=true


Above all else, take care of yourself...it may be good to use the time when your family is away to explore some of your gray, funky thoughts, but be sure to be kind to yourself, be patient with yourself and find small ways to nurture yourself through this...that will allow you to rebound and be there for the family when they return. Don't ever forget that we are here to help -- whether it's sharing in a small joy or sharing in the worry.

Love ya man.

[GW in IA]

I know that I may be looking through extremely rosy glasses, but there also seemed to be a few folks who actually have had ALS for 20+ years and are managing with it. I'm just hoping and praying that Patty falls into that category.

I don't think this is rose colored thinking at all. All of the national averages are of course pretty low as far as lifespan, mobility, Etc... But every Dr. we have talked to has told us that she is in a possition to beat these odds pretty easily. She is younger than most, and healthy, so its not like the ship is going down right now. In fact she has full plans on being famous for being the first person totally cured of the disease Plus, she knows full well what a low life I was before we met, and has no intention of letting me raise her kids alone, so she'll be around for awhile.

[Clams]

Plus, she knows full well what a low life I was before we met, and has no intention of letting me raise her kids alone, so she'll be around for awhile.

Not only is she keeping her sense of humor, but she seems pretty smart to boot.

[beantownbubba]

she knows full well what a low life I was before we met, and has no intention of letting me raise her kids alone

Now that's what i call incentive!!

[GW in IA]

Exactly.

[Lurleen McQueen]

Exactly.

[Slipkid42]

GW - It is I who should feel guilty. I look forward to posts from you, apparently as much as you enjoy ours. Reading about you & your wife (and the topsy turvy mindfuck that you must be living through); has given me renewed resolve to face my own petty & seemingly overwhelming problems. Bills, road rage, missing the Preakness & the Belmont, sports teams that suck, no DBT shows since Feb...I could go on & on. Often, these mundane little setbacks or obstacles come in bunches. I am embarrassed now to tell you that I let them get me down sometimes. Hearing from someone who has an actual problem; has helped me put into perspective my own daily irritations.
I can't tell you how to deal w/this shitty news. I know my own lack of willpower, when it comes to drugs & alcohol. I would be too afraid of becoming dependent upon that type of relief to solve my problems, for me to go that route. Therapy is something that I also probably needed (and still do). I could never bring myself to dump my burden on some shrink, who may or may not even really care how I feel, though. This is a place, perhaps, where even I would feel comfortable seeking guidance. Hell, if y'all can't see the tears streamin' down my face, then it's like I'm not even cryin'. This forum didn't exist when I was really down & out. If I had found it back then, maybe my healing process wouldn't have taken 25 years. So tell us when you're down. Keep us in the loop. We are here for you & your wife.

[one belt loop]

Let's get this straight. Therapy isn't there so you can go sob to some stranger about what a hard life you have. That's a sophomoric assumption. Therapy is there to help you develop coping mechanisms and skills, so that you don't do something like throw your life away with drugs and alcohol instead of actually dealing with the issues you have. It's a perfectly reasonable option when life hands you a big fucking problem to deal with, should one choose to exercise it.

[Smarty Jones]

GW,

My grandmother was placed in the position of caregiver when her 40-yr-old husband was diagnosed with polyarteritis nedosa, a disease that eventually left him without feeling in both his hands and feet, sometimes made him lapse into psychotic frenzies where he'd try to kill her, and eventually killed him when my mother was a senior in high school. Needless to say, she was confused, angry and bitter to be thrust into her new role as a live-in nurse, and there were times when she was terribly depressed and frustrated.

She told me that the way she was able to let go of all the stresses that she was feeling from having to care for him and seeing him deteriorate, was to walk out by herself into a clearing that was in the woods surrounding their house and stand there and scream her head off. It must have worked, because it always gave her the strength and courage to turn back and head to the house and continue on.

Never let your feelings get bottled up inside of you, where they can fester and go bad really fast. Just let it all out - yell if you need to. It's perfectly understandable that you're feeling this way. It''s not going to be easy, but we're here supporting you every step of the way.

[GW in IA]

I've already been in touch with the ALS support group. Meetings first Tues. of every month. I doubt we will be starting anytime soon. but its nice to know where and when they are for when the time comes. Oddly enough, there are 3 support groups in IA, one is in Des Moines(4 hour drive, good size city), the second is in Cedar Rapids(4.5 hour drive, another good sized city) and the third is in Algona, the little town I grew up in, and where my parents still live. about 30 min. drive, and a town of about 5,000 people.

[Slipkid42]

I was merely telling GW that therapy wasn't a path that I could see myself taking, obl. Sorry I wasn't more clear about that. GW (and his wife), should seek out any assistance that they feel would help.

[sg207]

Plus, she knows full well what a low life I was before we met, and has no intention of letting me raise her kids alone, so she'll be around for awhile.

That's a damn funny line!

And listen to Beantown and Lurleen, both are much better with words than I ever could be.

[Erdlivz]

And listen to Beantown and Lurleen, both are much better with words than I ever could be.

X2

...and GW knows he can "whomp" me in the head if he ever needs to release some energy/frustration.

[lynne]

Still thinking about you all and sending postive thoughts and love your way!

[one belt loop]

I was merely telling GW that therapy wasn't a path that I could see myself taking, obl. Sorry I wasn't more clear about that. GW (and his wife), should seek out any assistance that they feel would help.

Sorry, sweetie, I was in a mood.

[beantownbubba]

I was merely telling GW that therapy wasn't a path that I could see myself taking, obl. Sorry I wasn't more clear about that. GW (and his wife), should seek out any assistance that they feel would help.

Sorry, sweetie, I was in a mood.

They have therapy for that.

Hey, SOMEBODY had to say it.

[sg207]

And listen to Beantown and Lurleen, both are much better with words than I ever could be.

X2

...and GW knows he can "whomp" me in the head if he ever needs to release some energy/frustration.

I totally agree. GW, you can absolutely whomp Erd in the head if it helps.

[scotto]

Let's get this straight. Therapy isn't there so you can go sob to some stranger about what a hard life you have. That's a sophomoric assumption. Therapy is there to help you develop coping mechanisms and skills, so that you don't do something like throw your life away with drugs and alcohol instead of actually dealing with the issues you have. It's a perfectly reasonable option when life hands you a big fucking problem to deal with, should one choose to exercise it.

Mood or not, very well put.
Since I'm in the bizness, I hate to sound pushy about therapy, but, yes, it's another option for folks who need one. I know it has its detractors and has certainly caused some problems, but it's also helped scads of people who needed another place to turn. Therapy's not for everyone, but neither are antidepressants.
GW, thinking of you and your family; feel free to shoot me a PM if you ever need to vent, sob, scream, or just BS.
Cheers.

[Jonicont]

...and GW knows he can "whomp" me in the head if he ever needs to release some energy/frustration.

I totally agree. GW, you can absolutely whomp Erd in the head if it helps.

No argument from me

[Erdlivz]

Hope all is going well in GW and Mrs. W in IA Land.

[GW in IA]

Yeah, smooth sailing around here.
I guess you can gage how things are, by how little you hear from me

[lynne]

Yeah, smooth sailing around here.
I guess you can gage how things are, by how little you here from me

Good to hear it been smooth sailing. Keeep your smiles and positive attitudes. Never forget we are all here for you.