Hello from Colorado!

[wendybridges]

Hi everybody! I haven't posted too much but I've come to this website many times over the years whenever I wanted to see how other people have dealt with the same issues we've faced.

I'm a CALS for a (as of Monday) 45 year-old man who was diagnosed right around this time of year 2011. This means we're on year 5 and still going strong! O2 sats are getting kinda low (high 80s, low 90s) but other than that, he's not even on the biPAP or any other breathing-assistive machines.

A little about us: J was an electronic engineer/skateboarder and I was a little lost, career-wise when we started dating. That was when he was just starting to experience symptoms and didn't know what was going on. When the diagnosis finally came in, I kinda went "Well... I'm not doing anything better, what do you need help with?" I grew up around this stuff; my mom is a PT-turned-CNA and she's had ALS patients before. At first it was little things, like he couldn't put his socks on anymore. Then it was supporting him when he was having trouble walking. Then came the wheelchair and the PEG tube and blah blah blah.

I struggle with caregiver burnout (especially since our home health nurse just quit and now I have to find some new people, blerg) and Jason has various health issues I keep an eye on. They keep popping up like Whack-A-Moles and I keep knocking 'em down with extreme prejudice.

As we start off Year 5, he's been plateauing (for the most part) for several years now and I'm feeling cautiously optimistic. He fits the profile of someone who can live for years with the disease- diagnosed young, previously healthy and athletic, no other preexisting conditions. We actually recently got engaged (whoo, congrats to us!) and I think he's excited about being a husband. For all the weird, crazy ways we got to this point, we're stupidly in love.

He went through a tough time getting adjusted to this way of life, but eventually he learned to listen to the medical professionals. He uses the eye-gaze (computer nerd, the first thing he did when we got the first Tobii was criticize the design), he's accustomed to the feeding tube, and finally agreed to home health after four years of ignoring the issue. Life is improving and he smiles when he sees me cuddling the cat, or when I tell him about the backyard squirrels that I've named and the adventures they get up to.

Sorry again for the long speech, but I had a lot to say. I'm a writer, I write long. Good to finally be on the site, hello to all!

 

[GregK]

Hiya Wendy.

There are at least two more of us from CO.

 

[JimInVA]

Squirrel...

We put in a bird feed, recently. Affixed it to the window near where Darcey's PWC is most often placed. We've both enjoyed getting acquainted with the variety of birds that come to visit... and who, with time, have become more and more comfortable with us on the other side of the window. Initially, the squirrels were content to catch the seed that the birds scattered to the ground. But that would change.

The first attempts for gaining access to the bird feeder was from above. One particularly determined squirrel would shimmy over the edge of the roof and hang from the gutter. He'd look, imagine the perfect landing and then launch himself at the bird feeder (hereinafter referred to as BF). I know it had to be a boy squirrel as only a guy would launch himself through the air without realizing the consequence of missing the target. Time after time, he tried... sometimes coming close... but mostly just bouncing off the ground, below.

Determined to succeed, he changed up tactics and began with a long, loping run towards the wall just below the window holding the BF. With a mighty leap, he'd climb frantically looking to catch the bottom edge of the feeder. Leap by leap, he'd edge closer and closer. And then it happened. He'd grabbed an edge of the BF and was hanging by one foot. With a surprised look through the window, he smiled at me and put up a second foot. A moment's rest for a couple of quick breathes... and another sideways glance at me... and he pulled himself fully up into the mecca of food. You could sense the excitement surging through the conquering beast. Yet before he could take that first taste of the bounty, I pounded on the window and sent him scurrying away. I will admit it was entirely reactionary on my part. Immediately, I felt guilty that for all of the effort, I didn't even allow him a moment of tasty victory.

But "Buddy" now knew that he could get up and into the BF. He had the "key". Mere minutes later and he was back. This time, I allowed him time to feast. In fact, I took that moment to take a "selfie" of the two of us.

I could continue to write pages (I, too, tend to get carried away when writing) about the events that have happened since then. But there's always room for another addendum on another day.

Squirrel...

Sometimes I just get sidetracked. Darcey calls it "CALs Brain".

Squirrel...

Anyway... just wanted to say "hello" and to let you know you are not alone and there are many among us who understand and a really do get what you're trying to say.

Squirrel...

When we can keep our thoughts on track...

Jim

 

[faithandlove]

Welcome Wendy! The people on this forum are super knowledgeable about ALS, and they are very kind and caring. Congratulations on your engagement.

Hugs,
Deb

 

[lgelb]

Wendy, if his sats are into the 80s, I would add BiPAP to the agenda. All best wishes on your impending marriage and happiness.

Best,
Laurie

 

[wendybridges]

@JimInVA: Where is Poquson (sp?) I lived in Fairfax County from ages 7-19. Also, squirrel! My fave is Robbie, who used to do somersaults off one of the trees in the backyard when he was a kit. There's also Tatiana (his girlfriend), and one other that just barks at me every time I go outside. Unfortunately, we have privacy-hedges outside our window, so we have to rely on verbal descriptions and phone videos for entertainment. Eeesh, I had a subcontractor come out to do an estimate on tree-branch removal and he advocated shooting the squirrels. Needless to say, he was not invited back.

@Laurie: Thank you. He consistently refuses the biPAP, which eloquently ties into your other post. I agree, I was kinda out of line and shouldn't have spoken. I'm glad quality-of-life has improved for him, but it wasn't my place to say anything. If I haven't already said so outright, I apologize. Thank you for the wishes!

@GregK: Nice to know! CO is a beautiful place and I'm so glad to live here. We went on a skate trip to Colorado Springs a few years back and I saw my first-ever baby bunny in the wild.

 

[GregK]

Regarding the bipap, please read this post from Laurie: https://www.alsforums.com/forum/als-research-news/32734-early-bipap.html

 

[affected]

squirrel!

I would so love to see a wild one!

I however daily spot and name the koalas here, so I can definitely identify

I agree those sats are a call to bipap. All we can do as a CALS is give the information then support them as they make their own decisions. Still if he wants to be around to be a husband, he should look seriously at this as the ability to breathe or not, is what takes the PALS out.

 

[wendybridges]

Regarding the bipap, please read this post from Laurie: https://www.alsforums.com/forum/als-research-news/32734-early-bipap.html

*Heavy sigh* I agree. Unfortunately, we were referred to a doctor who waited far, far, far too long to prescribe the biPAP for us and by then, J hated it and refuses to use it. We've missed the early window by several years at this point. It is what it is, I guess. I believe that if I'd been more of a B and tried to force it through when we actually wanted it, it would have helped a lot in the early days, but it's simply too late now. Well. A lesson, I suppose, in that being nice and easy-going is only an advantage up to a point.

 

[lgelb]

We have had others here who hated it and learned to appreciate the benefits it brings. There is no one-size-fits-all approach to it. With the right machine, mask, settings and encouragement, most anyone can deal.

If you can tell us why he hated it, there are probably solutions. The alternative of possibly prolonged respiratory insufficiency (which becomes more irreversible as time without support goes on) is at odds with what I believe from your posts you are trying to achieve.

 

[JimInVA]

Wendy,

Poquoson is near Newport News & Hampton and across the Chesapeake Bay from Norfolk/Virginia Beach. Yesterday, one of the squirrels discovered my 10x10 offset umbrella that is up and covering my cooking deck. He'd run up onside and slide belly down and head first on the other side. Sliding to the edge, he'd twitch his tail, turn and repeat... running back up and sliding down the other side. He must have done this a dozen times before resting in a corner to catch his breath.

My PALs quality of life would be very low without her BiPAP. Before using it, she was groggy and falling asleep at odd times. For her, it is the CO2 buildup that it helps keep low... a necessity when the lungs can't do well on their own. And during the day, the pressure from the Trilogy helps her to speak... such voice used for social networking via Dragon Naturally Speaking... and to respond to my constant queries as to "How are you doing? What body part can I move? Do you need anything?"

I put up a squirrel feeder the other day. I figure if I can fatten them up, they won't be able to get to the bird feeder any more. We'll have to see how that plan works...

Jim

 

[Nuts]

Hi Wendy. I tried to great you yesterday, but, well, had to close the IPAD and respond instead

How wonderful that you've found love in the midst of this mess!

My guy wears the bipap at night, but won't use it during the day, and he refuses to believe that it might have anything to do with his napping... Oh well, they get to call the shots, so I encourage but have stopped hounding him about it. Please do talk with Laurie about what it is your guy hates. Settings can be adjusted and different masks can be used--we rotate them here. Laurie is a wiz at this and may be able to help.

Becky

 

[wendybridges]

I hear what everyone is saying about the bipap. God knows, it's nothing new, and I will talk further on the subject later, but right now it just cannot be a priority for me. I'm back to being to the sole caregiver and after 3 years of 24/7/365, I'm exhausted. I realize from my posts, I might sound saccharine and obnoxiously happy but that is far from the truth, it's only a fairy-tale I tell myself to get me through the day. For instance: Today the cleaners are coming and I HAVE to sit with him, because he'll get paranoid about dust in the air. I HAVE to schedule interviews with home health candidates, because I need/deserve a break. I HAVE to get the spare room ready for when my mom visits. I HAVE to monitor his feeding tube, formula, and bowels. I HAVE to have the next round of drugs prepped and ready to go. I HAVE to remember to eat, so I don't end up in the ER myself. And that's only the tip of the iceberg, there is so, so much more, oh and have I mentioned that a beloved family member died a few days ago? Even posting on here, I shouldn't be doing because this is time I could spend on other things. Tomorrow, I'll get up and figure out what I HAVE to do, and hopefully at some point I'll be able to sit down and read my comic book. I would like to get set up with the bipap again... if someone else can deal with the whole freaking thing. Maybe in a couple months when the thought of taking on another project doesn't make me want to fall to my knees and sob. Especially as he doesn't want it in the first place.