MystiMarie
New member
- Joined
- May 25, 2016
- Messages
- 4
- Reason
- Loved one DX
- Country
- US
- State
- Pennsylvania (PA)
- City
- Williamsport
My husband has been having speech issues for almost 10 months and swallowing issues started within the last 9 months. His speech is almost completely unrecognizable, except for a few words here and there, and his recent complaint is feeling congested off and on for the past week. I have heard the congestion a few times several weeks ago, and asked him about it. Until today he did not admit to having any. His diagnosis is Bulbar Palsy onset ALS
He is retired navy, we have an appointment with the VA Thursday. He is going to get a computerized text to speech device to communicate, that can be upgraded to one that uses eye movement. He breaks down in tears every week or so, and it is so hard for me to handle. He did it again today at the speech therapy office. There didn't seem to be anything any of us could say.
We have 5 children. 3 are grown, and 2 we adopted, who are 10 and 11. The younger girls do not know this is terminal, I dont want to take away what time they have left to share with their Dad, and keep them as scared and upset as I am. I also wonder if this is Lymes, even though his test came back negative. Is that even possible? I know I am reaching for straws here.
This seems to be moving towards his lungs, but I can see no major weakness in his limbs or issues with his walking. I dont know what to expect as far as time frames go.
I feel like my hands are tied and I have to be strong for him and our kids. I'm afraid there isn't much time left, and I'm not ready to loose him .Im hanging on by a very thin thread.
He is retired navy, we have an appointment with the VA Thursday. He is going to get a computerized text to speech device to communicate, that can be upgraded to one that uses eye movement. He breaks down in tears every week or so, and it is so hard for me to handle. He did it again today at the speech therapy office. There didn't seem to be anything any of us could say.
We have 5 children. 3 are grown, and 2 we adopted, who are 10 and 11. The younger girls do not know this is terminal, I dont want to take away what time they have left to share with their Dad, and keep them as scared and upset as I am. I also wonder if this is Lymes, even though his test came back negative. Is that even possible? I know I am reaching for straws here.
This seems to be moving towards his lungs, but I can see no major weakness in his limbs or issues with his walking. I dont know what to expect as far as time frames go.
I feel like my hands are tied and I have to be strong for him and our kids. I'm afraid there isn't much time left, and I'm not ready to loose him .Im hanging on by a very thin thread.