Question & 3/4 of a diagnosis

[lgelb]

H'town, if you need a BiPAP and don't get one, the feeding tube is unlikely to have much of an impact. If you don't want your husband making decisions, designate another health care power of attorney, but having a machine that helps you breathe -- doesn't breathe for you-- (that's a different setup, that most people here don't opt for) is as much about quality as quantity of life.

If this is not your husband's usual style, I'd be hopeful that by having frank conversations with him, like the one you're having here, you can help him find more positive ways to express concern and help you.

You can respond to multiple people in one post -- probably easiest.

 

[IslandL8dy]

@affected Thank you, you bring up a good point. I want to protect my loved ones throughout this (it’s really all I want), and I realize it would haunt them to watch me struggle with breathing. It already does, and I’m not even bed-bound. I’ll have to really think about that.

Will change out my avatar image soon, but yeah, it’s meant as a joke. I’m wheelchair bound and we have twisted senses of humor around here.

 

[affected]

oh don't change your avatar - as I said we say that all the time here, so I loved seeing it in picture!
my husband suffered several serious falls with awful injuries that never healed, so I'm known to harp a bit on not falling (probably why the great image caught my eye).
I'm glad you can talk things out here and get prepared for talking to your family.

 

[IslandL8dy]

@lgelb Right now his words are along the lines of how I need to fight this tooth and nail and stick around as long as I can. And when I show any resistance, he just falls apart. I’ve never seen him like this before and I can’t bear it. I understand now why some cancer patients don’t tell their families. They don’t want to extend their grief beyond what’s necessary.
But even as I write this I know that I *can* bear it and I need to be strong for his sake, esp. when we’re both confused.

How do I respond to multiple posts, btw? Is it just by doing the “at” thing? I feel like such a doofus.

I will try it with @affected : Very sorry about your husband. I took many falls, too. I wound up with a manual scooter, but then after a few months I started falling off that. Now I have a power wheelchair and love it. Getting into all kinds of trouble.

 

[Nikki J]

You can reply however you want. It is probably easiest to do it in one post and if you need to address someone individually @ is fine or just their name / user name. Sometimes people have a username but sign off with a first name. Whatever works

from what you have said I think your relationship will get its equilibrium back. You have both had tremendous shocks and reacted in opposite ways. You might want to stick around a little longer than you think and he will calm down a bit too. Ultimately it is your choice of course.

revisiting the push for diagnosis. Another reason is your being a vet. Those benefits can make your life easier and if you have 90 days active duty ( not for training) and an ALS diagnosis you should get them. Many of our members have worked with the PVA who helped expedite.

it occurs to me that one reasonable thing you could suggest to your husband is trying TUDCA. You will find threads here on it and Amylyx. There was a phase 2 trial of a combination of TUDCA and sodium phenylbutyrate which is a prescription that demonstrated slowing and increased longevity. We are waiting to hear if there will be a phase 3 or if it will be approved. TUDCA can be ordered online. My neurologist recommends nutricost brand. The target dose would be 2 grams a day but best to titrate up slowly starting with 250 mg a day because it can upset your stomach. Some people are getting the prescription too but it is very expensive and even with a diagnosis it requires an appeal that doesn’t always succeed

 

[IslandL8dy]

Thank you, @Nikki J , that is very valuable information about the VA and especially TUDCA and Amylyx. Those sound like the very type of thing he wants to sink his teeth into. I will look them up.

 

[rmt]

@IslandL8dy My husband is a veteran and the VA benefits are incredible. Our local PVA helped us with the paperwork (they did all the work and he just had to sign things). It is definitely worth the effort. The monetary compensation is great but the access to so much free equipment is even more helpful. The VA has made getting things that improve his quality of life so easy. If you have any questions about how to get things going with the VA, please let me know!

 

[IslandL8dy]

Thank you, @rmt . I admit I don’t know where to start. Well, I suppose first step would be getting a copy of my DD-214, which I lost many moons ago. What is a PVA?

 

[Nikki J]

Paralyzed veterans of America. Don’t start the process without a definite diagnosis. Did you call the neurologist?

 

[rmt]

Nikki is right, you will need a diagnosis (from a VA physician) before you can get anything going with getting a VA disability rating (which will be 100% disabled if you have an ALS diagnosis, which means they cover EVERYTHING for free including medications, BiPAP, house retrofitting, etc). When we got the diagnosis from the VA neuromuscular specialist, they gave us a packet with all the numbers for the local groups (Paralyzed Veterans of America, ALS support groups, etc). One call to PVA and they took over and did all the paperwork. It was amazing.

It may be a good idea to get an appointment at the VA to get the ball rolling. They may also be able to get you in for an PFT and EMG more quickly. When my husband needed a PFT last December, they got him in within a week! We go to the VA in Portland, OR, which is affiliated with the other hospitals in the area and they share resources (like EMG facilities). Not sure about the Houston VA, but there are so many great hospitals in Houston, I bet they do the same.

Even if you end up not have ALS (fingers crossed!), the VA may be a good resource to have. My husband still sees some non-VA doctors at times, but the VA has been so helpful for us.

 

[Wilson2009]

You don't need a diagnosis from a VA doctor to file a claim for benefits. You just need a diagnosis. It is important to file your claim with the assistance of the PVA as soon as ALS is confirmed. The VA will begin the review process as soon as the paperwork is filed and if necessary have one of their neurologists do a second opinion, but benefits will be retroactive to the filing date regardless of how long it takes to get your P&T, 100% service-connected, rating. Under the Military Veterans and VA forum, go to the first post, otherwise known as a 'sticky' and download the Guide to Veterans Benefits.

 

[affected]

@IslandL8dy you are doing it perfectly, so glad you are getting lots of support and suggestions here 😊

 

[KimT]

IslandL8dy,

Thank you for your service.

I have to second what Tillie says in regard to Bipap. It will give you more energy in the day if you use it at night. It’s totally optional when and where you use it. I know one guy who just uses it to sit and puff.
It really is no different than a CPap except the pressure reduces on exhalation.

 

[Clearwater AL]

Wilson, thank you for setting the story straight. (rmt)

I did not need (use) a VA doctor filling my claim with the PVA.

It went through in a matter of a few weeks.

And mine was retro active also.

But... it has to be a confirmed/verified ALS diagnosis

 

[IslandL8dy]

I’m so overwhelmed with gratitude to everyone here. This is feeling more like something like I can navigate. Thank you so much, @Nikki J , @rmt , @Wilson2009 , @affected , @KimT Also, with a clearer understanding, I think I’m in a better headspace.

I reached out to my neurologist through the portal and asked to expedite scheduling with the MN Unit. Waiting to hear back.
My friend is helping get set up with the VA in terms of DD-214. I won’t apply for actual benefits until I have a diagnosis.
I spoke to my parents. It was difficult, but we got through it. They’re wonderful.

Another question, I think this one is for Laurie @lgelb , and forgive me if this is gross: Regarding the BiPAP, what if there tends to be a bit of spit leaking from the sides of the mouth on an ongoing basis? It just seems like it might make it that much weirder/less amenable/appalling/more liable to choke in one of those devices?