Janis J
Active member
- Joined
- Jan 7, 2016
- Messages
- 54
- Reason
- Lost a loved one
- Diagnosis
- 05/2015
- Country
- US
- State
- Oregon
- City
- Portland
Hi, I've finally joined after lurking for a few months to get lots of useful information and inspiration.
My husband Douglas was diagnosed with ALS in May 2015. His arms and hands were affected first and are now mostly useless. He's now having trouble swallowing and talking and had a PEG tube placed last month. He still eats for pleasure but gets most of his nutrition through the tube. Douglas can still walk, although that's very tiring; we have a power wheelchair from the local ALSA loan closet and are working on getting one that he'll be able to operate when his hands no longer work. His breathing is still fine, but he's been using a CPAP machine for a few years for sleep apnea; I hope that will make getting used to a BIPAP easy for him.
Douglas and I are both 62. I retired a year ago hoping to spend my time on fiber arts, particularly weaving and spinning, but it's been very valuable to have the time and money to spend on Douglas and preparations for the progression of his ALS.
We're very fortunate to have access to a truly exceptional ALS clinic, extremely helpful local ALS Assocation, and loving family and friends. Douglas appreciates all I do for him and is horrified that's not true of all PALS and CALS.
Thanks for all the help you've already given us; I hope to return the favor.
Janis
My husband Douglas was diagnosed with ALS in May 2015. His arms and hands were affected first and are now mostly useless. He's now having trouble swallowing and talking and had a PEG tube placed last month. He still eats for pleasure but gets most of his nutrition through the tube. Douglas can still walk, although that's very tiring; we have a power wheelchair from the local ALSA loan closet and are working on getting one that he'll be able to operate when his hands no longer work. His breathing is still fine, but he's been using a CPAP machine for a few years for sleep apnea; I hope that will make getting used to a BIPAP easy for him.
Douglas and I are both 62. I retired a year ago hoping to spend my time on fiber arts, particularly weaving and spinning, but it's been very valuable to have the time and money to spend on Douglas and preparations for the progression of his ALS.
We're very fortunate to have access to a truly exceptional ALS clinic, extremely helpful local ALS Assocation, and loving family and friends. Douglas appreciates all I do for him and is horrified that's not true of all PALS and CALS.
Thanks for all the help you've already given us; I hope to return the favor.
Janis
