Elkhorn3
Member
- Joined
- May 24, 2020
- Messages
- 23
- Reason
- CALS
- Diagnosis
- 05/2020
- Country
- US
- State
- MT
- City
- Helena
Hi friends,
My husband was diagnosed with Bulbar onset ALS this June, along with FTD. Over the summer he deteriorated so quickly - from hiking and doing major home projects to shuffling, then a walker, then a wheelchair. Now he is in his final days, bed bound with only a few minutes a day upright in a wheelchair. He hasn't been able to speak since May, but he can still do thumbs up and thumbs down.
He's been through every imaginable state on this journey - rage, anxiety, craziness, withdrawal, mute adjustment - the whole whitewater stretch of River.
And now we are in a peaceful place, surrounded with family and friends, music and love. He sleeps most of the day, and we are watching his body slowly play itself out.
I am sorry for his anguish, proud of his spirit, baffled by his FTD, and unspeakably grateful for the life I have had with him.
For those of you in the midst of the struggle with this brutal disease, I hope you too will find this place of peace when the time comes. It is so precious.
And thank you all for your support and suggestions throughout this Cannonball Run.
- Krys
My husband was diagnosed with Bulbar onset ALS this June, along with FTD. Over the summer he deteriorated so quickly - from hiking and doing major home projects to shuffling, then a walker, then a wheelchair. Now he is in his final days, bed bound with only a few minutes a day upright in a wheelchair. He hasn't been able to speak since May, but he can still do thumbs up and thumbs down.
He's been through every imaginable state on this journey - rage, anxiety, craziness, withdrawal, mute adjustment - the whole whitewater stretch of River.
And now we are in a peaceful place, surrounded with family and friends, music and love. He sleeps most of the day, and we are watching his body slowly play itself out.
I am sorry for his anguish, proud of his spirit, baffled by his FTD, and unspeakably grateful for the life I have had with him.
For those of you in the midst of the struggle with this brutal disease, I hope you too will find this place of peace when the time comes. It is so precious.
And thank you all for your support and suggestions throughout this Cannonball Run.
- Krys