bythesea
Active member
- Joined
- Aug 6, 2009
- Messages
- 82
- Reason
- PALS
- Diagnosis
- 02/2010
- Country
- US
- State
- NJ
- City
- Bergen County
My thoughts and best wishs go out to anyone with ALS
Of course the less than 10 miles to Columbia ALS took more than an hour and a half. I think we (wifey) averaged 15 miles an hour. Thank God for our new spend-down gift, a spacious and comfortable, automatic Honda
Irismarie, eat your heart out, I had a bevy of beautiful, young therapists. When I asked my wife why, she said it was just like her work everybody is younger (but, he doth protest, I am only sixty!).
Granted I’m not yet tube fed or sleeping with a mask but some signs were ominous. That test; " blow harder, harder.. ", was sixty something percent down from ninety percent last visit but it didn’t seem to alarm anyone (strange) but I now seem to have a persistent soft cough. Two nights ago here it was muggy and hot and I had the AC cranked high. I woke up in the middle of the night and couldn’t catch my breath, really scary. Thinking it was too cold I turned down the AC, took my Singular and sat up for an hour before falling asleep. Fine and dandy but my first asthma like symptom in many years.
The doctor wrote a script for a pulse-ox?
The dietician said I was nice and stout. The pt ordered a rollator-like walker to replace the clunky one I’ve become dependent on in just over a week. I had a manual wheelchair eval. for a better fitting loaner. Asked several times if I wanted a power chair and declining same, I finally broke down and tried the one they had. To make a long story short they are delivering my custom-fitted model in three days! Watch out world, but first we will probably have to buy a lift.
On the way home we stopped for MacDonald’s, (isn’t American fast food depraved but glorious). I promptly ate too fast and choked. As if to remind me of my fate I glanced at the building next door. It was the mri place I had driven to on my lonesome only several months ago, can no longer drive or even make that walk with just a cane. LIFE IN THE FAST LANE.
When they wanted to schedule next visit for three months I took somebody’s advice on the Forum (joel?) and asked for one in two months. The future will always be scary but it was good to get so much material support.
Love all you pals and gals
Of course the less than 10 miles to Columbia ALS took more than an hour and a half. I think we (wifey) averaged 15 miles an hour. Thank God for our new spend-down gift, a spacious and comfortable, automatic Honda
Irismarie, eat your heart out, I had a bevy of beautiful, young therapists. When I asked my wife why, she said it was just like her work everybody is younger (but, he doth protest, I am only sixty!).
Granted I’m not yet tube fed or sleeping with a mask but some signs were ominous. That test; " blow harder, harder.. ", was sixty something percent down from ninety percent last visit but it didn’t seem to alarm anyone (strange) but I now seem to have a persistent soft cough. Two nights ago here it was muggy and hot and I had the AC cranked high. I woke up in the middle of the night and couldn’t catch my breath, really scary. Thinking it was too cold I turned down the AC, took my Singular and sat up for an hour before falling asleep. Fine and dandy but my first asthma like symptom in many years.
The doctor wrote a script for a pulse-ox?
The dietician said I was nice and stout. The pt ordered a rollator-like walker to replace the clunky one I’ve become dependent on in just over a week. I had a manual wheelchair eval. for a better fitting loaner. Asked several times if I wanted a power chair and declining same, I finally broke down and tried the one they had. To make a long story short they are delivering my custom-fitted model in three days! Watch out world, but first we will probably have to buy a lift.
On the way home we stopped for MacDonald’s, (isn’t American fast food depraved but glorious). I promptly ate too fast and choked. As if to remind me of my fate I glanced at the building next door. It was the mri place I had driven to on my lonesome only several months ago, can no longer drive or even make that walk with just a cane. LIFE IN THE FAST LANE.
When they wanted to schedule next visit for three months I took somebody’s advice on the Forum (joel?) and asked for one in two months. The future will always be scary but it was good to get so much material support.
Love all you pals and gals