kylisa
Distinguished member
- Joined
- Feb 11, 2008
- Messages
- 195
- Reason
- Lost a loved one
- Country
- US
- State
- KY
- City
- Stanford
Below is something many of you may have already found while researching ALS. I was struck by the sheer logical approach this man had to dealing with the disease. I only wish my mother would have taken this approach, instead of fighting everything tooth and nail.
This is an excerpt from a blog by Tony Wallace.
"I would like to share with you some of the ways in which I have dealt with the milestones in this disease. My philosophy was to prepare myself in the best way possible for each succeeding stage. Does this make me a micro-manager? Borderline OCD? Yes I guess so. It’s probably partly genetic and partly because I worked for a guy who didn’t like surprises.
1. Before I fell hard enough to break something, I "graduated" from walking to a walker and then to a wheelchair.
2. Before transfers because difficult and risky I chose to use an Easy Pivot device
3. To avoid the possibility of waiting too long, I got myself a feeding tube.
4. To avoid locked muscles, I had the baclofen pump implanted. My range of motion remains good.
5. In advance of a sharp decline in my breathing function, I got a BIPAP machine and use it at night. I am convinced that it has slowed down the deterioration of my breathing function.
6. Anticipating the decline of my speaking, I first purchased voice-recognition software allowing me to speak to my computer.
7. As the volume of my voice dropped, I got an amplification device, which makes speaking less tiring.
8. To get ready for the time that I would not be able to speak at all, I got a speech communication device that I can operate by headpointing.
9. I moved early to a condom catheter, which removed all of the stress dealing with that bodily function. I also prepared for the loss of bowel muscles by using a wonderful recipe I found online; a natural blend of fruits, which keeps things moving. I call this Tony’s TNT. (I'll post the recipe shortly)
10. To get ready for the point where accummulation of mucus and saliva would result in aspiration, I got a suction machine and a cough assist device.
11. To deal with pseudo bulbar I got a prescription for Zolof. Now I don’t cry at concerts anymore.
12. I enrolled in hospice while my breathing function was still fairly good because I strongly believe that the palliative care services they offer are a great comfort to ALS patients."
This is an excerpt from a blog by Tony Wallace.
"I would like to share with you some of the ways in which I have dealt with the milestones in this disease. My philosophy was to prepare myself in the best way possible for each succeeding stage. Does this make me a micro-manager? Borderline OCD? Yes I guess so. It’s probably partly genetic and partly because I worked for a guy who didn’t like surprises.
1. Before I fell hard enough to break something, I "graduated" from walking to a walker and then to a wheelchair.
2. Before transfers because difficult and risky I chose to use an Easy Pivot device
3. To avoid the possibility of waiting too long, I got myself a feeding tube.
4. To avoid locked muscles, I had the baclofen pump implanted. My range of motion remains good.
5. In advance of a sharp decline in my breathing function, I got a BIPAP machine and use it at night. I am convinced that it has slowed down the deterioration of my breathing function.
6. Anticipating the decline of my speaking, I first purchased voice-recognition software allowing me to speak to my computer.
7. As the volume of my voice dropped, I got an amplification device, which makes speaking less tiring.
8. To get ready for the time that I would not be able to speak at all, I got a speech communication device that I can operate by headpointing.
9. I moved early to a condom catheter, which removed all of the stress dealing with that bodily function. I also prepared for the loss of bowel muscles by using a wonderful recipe I found online; a natural blend of fruits, which keeps things moving. I call this Tony’s TNT. (I'll post the recipe shortly)
10. To get ready for the point where accummulation of mucus and saliva would result in aspiration, I got a suction machine and a cough assist device.
11. To deal with pseudo bulbar I got a prescription for Zolof. Now I don’t cry at concerts anymore.
12. I enrolled in hospice while my breathing function was still fairly good because I strongly believe that the palliative care services they offer are a great comfort to ALS patients."
Last edited by a moderator:
