Intro to me, Orlando caregiver and military veteran

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Atsugi

Moderator emeritus
Joined
Jan 11, 2011
Messages
5,921
Reason
Lost a loved one
Diagnosis
12/2010
Country
US
State
FL
City
Orlando
Just wanna say hi and maybe make a closer relationship with anyone who wants to. We never seem to connect with the local ALS monthly meeting, but I'm not sure I'd want to go, anyway. Too many sick people. We'd rather spend our evenings at the Wing House, where the happy people meet to eat.

My PALS/wife is a veteran of the first PGW and VA is treating us well. She's rapidly progressing and I doubt she'll see Christmas. Gonna be interesting for the boy, 16, but really tough on the girl, 13.

We live in the Orlando area, sleeping in the living room. Just received an eye-ball following computer and just bought a Honda Odyssey with a Braun ramp.

I apologize up front for my posts. I tend to be practical and get to the point without mentioning any empathetic emotions. I figure there are plenty of other people who will pray for you and cry for you--I just want to answer your questions and hopefully get an answer to mine.

Any vets wanna announce themselves? Anyone in CF wanna share local tips?
 
I am a vet 24 years Army. I live in the pan handle of Florida. I am going to attend my 1st support group meeting this month, I will let you know how it goes. I am sorry to hear of your wives rapid progression. That is my bigggest fear. Everyday I can walk and talk and do things puts me a little further on the denial side of things and then I get a reality check.
 
I highly recommend going to the ALS Group Meetings and contacting ALSA for support and information. They are very knowledgable, have access to loner equipment, tricks to make things easier for you and your wife and your kids, can expidite the process regarding Social Security and Disablilty benefits, not sure if they know about Veterens benefits but they may.

Also, sick people know a lot of tricks to make things easier and what to watch out for to avoid problems as well as how to solve problems. Who better to understand what you and your wife may be experiencing and give good advice as to how you can make your wife's final time more comfortable. It's just flat not going to be fun, but it can be more comfortable and less stressful. Good luck.
 
Funny thing about ALS is that most often, the PALS don't feel sick. Support group meetings tend to be just that - support groups. We laugh at meetings far more than shed tears. What we do get is lots of practical information - which should be right up your alley!


My husband's progression has been extremely fast, too. However, don't be surprised if there is a plateau of sorts. Late last summer, I didn't think my husband could make it to spring. Now, I fully expect to spend Christmas with him. In the beginning, it's hard to imagine that someone could live through the rapid progression. You do, and the PALS does, too.

My husband is a vet, too. We have a 19 year old daughter and a 16 year old son. If you have any questions, don't hesitate to ask.
 
Atsugi, Welcome to the club no one wants to be in... as Missy said, there could very well be a plateau, so hopefully your wife will have one. I've gone to several MDA meetings, and though we're there for a bad reason, we do have many lighter moments, and it could be helpful to you, even if your wife doesn't choose to go.

That said, there are many knowledgeable folks on this forum, so feel free to ask away!

Helen
 
HI

There is a very sweet social worker with the ALSA here in Orlando. She will do home visits. There are all kinds of benefits available via the VA for those with ALS. You can get an allowance for a vehicle and even for renovations needed in your home, I believe.

You might contact Courtney and ask her if there are any support groups for the kids to go to. Sometimes they need someone other than mom and dad to talk to. I can send her contact info if you're interested.

Sounds like the VA has you set with materials--but if you need any other practical help, The ALSA here is very helpful. With a post titled "VA" something or another, you'll find more info on what the VA can help with.

Welcome to the forum--sorry you need to be here, though.
 
Hi Atsugi,
I grew up in Narcoossee outside Orlando but we now live near ATL. My vet was diagnosed in February and his lower limb progression has been very rapid to us He is now losing muscle tone in his arms and shoulders too. He is still able to slowly get in and out of a vehicle but we'll need a van very soon. He uses a military fatigue belt to lift his leg in and out. At least he hasn't fallen down this week!

We've found the ALS Support groups to be helpful and this forum is wonderful way to get specific answers to questions that we have in between doctor visits. We'll be going back to the Emory ALS Clinic in August.
 
Not veterans, but I am a military brat.

You may or may not want to go to the support groups (we don't), that's your and your wife's choice. I do understand that FLA has one of the best awareness campaigns going in the nation! It's called "Stealing Pieces." Check it out if you are not aware of it. The national ALSA has not supported this campaign, unless something has changed.

We have an eleven year old boy and I can tell you that things were ok when he was younger, but as things have gone down hill, so has his resentment. Keep an eye on your 13 year old, for sure.

Good luck to you and your family. And, thank you both for serving our country!

Hope to see more of your posts, when you get time.
 
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And as an aside, my husband was afraid they were all going to sing Kumbaya and hold hands at the support group. It hasn't happened yet and Tina has been a great resource to answer our questions and feature interesting programs.
 
I'm a 20 year navy vet and participated in the 1st gulf war. Mainly road a party barge up and down the Red Sea and eastern Med. for 8 months. Oh, what manly men we all were!

Anyway, I don't have ALS, just a differential diagnosis of PLS, for which, I've found no support group outside of this fine forum. I've been thinking about forming my own PLS support group, we could meet in my garage on a cooler day, sing Kumbaya and see what good it does. (We'd forgo holding hands. I'm not a touchy feely type.)

I guess we could sit around a table, pop some baclofen and chase it down with a soft drink and pretzels (I like the soft kind).

I'm of absolutely no help...
 
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Kim, is that the truck in your avatar that holds the secret formula to the cure? And who is the guy with the glasses?

Sorry, don't mean to get the thread off track!
 
The truck is from PZ laboratories, Inc and the little man is Caroline's suggested version of PZ, himself. I liked the little guy and went with him but did a poor job of mixing the 2 pictures together.

Oh, the truck totes the latest and greatest elixors factory fresh to a neighborhood near you!

Remember, each elixor comes with our "almost" 100% guarantee!
 
Hi , I'm not a Vet but I'm sorry about your wife. I live in Palm Harbor which is between Tampa and Clearwater. You'll find friends here. I know it's tough on the kids, I have an 11 year old daughter that is attached to my hip.
Take care,
Susan
 
We have an eleven year old boy and I can tell you that things were ok when he was younger, but as things have gone down hill, so has his resentment. Keep an eye on your 13 year old, for sure.

What I meant to say was as things have gone down hill, the level of resentment has risen.
 
I knew what you meant. ;)
 
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