kwmechelle
New member
- Joined
- Jan 17, 2022
- Messages
- 3
- Reason
- CALS
- Diagnosis
- 10/2020
- Country
- US
- State
- VA
- City
- Norfolk
My husband and I got married 15 months ago. He was diagnosed with PBP 4 months later. It's been a nightmare. I'm depressed, even suicidal at times as I think about having to go on without him, having to start over in life, being both a newlywed & a widow at the same time.
His FVC measured at 27% last week in his clinical trial. He just completed the Healey trial and is now on pridopidine- or drug D. He does use a trilogy at night while sleeping. We've been told to learn all we can about a tracheotomy. He was put on a feeding tube about 4 months ago. His speech has been gone for sometime now.
Occasionally, I see traits of him that are so different from the man I fell in love with. His personality has changed a lot but I've learned that this is likely the disease and not a new personality. He has chronic asthma. We only dated for 2 years before we got married. Feels so much like we had a wedding and now a long funeral. We never really had a marriage. Some how, I'm supposed to pick up the pieces once he's gone and keep on living life.
I'm in therapy. We meet every two weeks through zoom. I have never felt more defeated in life. We're each only 44 years old. His birthday is next month but I'm really not even sure he'll live that long. And the lake of fire that I feel like I'm burning in just gets hotter. Glad I found this site yesterday. Glad to connect with people who know exactly what this feels like.
Before the Healy trial, he participated in the AT-1501 trial where each patient received the medication and not a placebo for 6 months. We actually believe that the infusions in the trial slowed down the progression. And once it ended, he began to take a nose deep dive that's not letting up.
I feel defeated. I feel like the wind has been knocked out of me. I feel like I'm hemorrhaging. And deeply traumatized. I feel knocked down. And I don't want to get back up. :-(
His FVC measured at 27% last week in his clinical trial. He just completed the Healey trial and is now on pridopidine- or drug D. He does use a trilogy at night while sleeping. We've been told to learn all we can about a tracheotomy. He was put on a feeding tube about 4 months ago. His speech has been gone for sometime now.
Occasionally, I see traits of him that are so different from the man I fell in love with. His personality has changed a lot but I've learned that this is likely the disease and not a new personality. He has chronic asthma. We only dated for 2 years before we got married. Feels so much like we had a wedding and now a long funeral. We never really had a marriage. Some how, I'm supposed to pick up the pieces once he's gone and keep on living life.
I'm in therapy. We meet every two weeks through zoom. I have never felt more defeated in life. We're each only 44 years old. His birthday is next month but I'm really not even sure he'll live that long. And the lake of fire that I feel like I'm burning in just gets hotter. Glad I found this site yesterday. Glad to connect with people who know exactly what this feels like.
Before the Healy trial, he participated in the AT-1501 trial where each patient received the medication and not a placebo for 6 months. We actually believe that the infusions in the trial slowed down the progression. And once it ended, he began to take a nose deep dive that's not letting up.
I feel defeated. I feel like the wind has been knocked out of me. I feel like I'm hemorrhaging. And deeply traumatized. I feel knocked down. And I don't want to get back up. :-(
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