wendybridges
Member
- Joined
- Jul 31, 2016
- Messages
- 11
- Reason
- CALS
- Diagnosis
- 08/2011
- Country
- Uni
- State
- Colorado
- City
- Boulder
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!
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!