Status
Not open for further replies.

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."
 
Last edited by a moderator:
Joined
Apr 21, 2009
Messages
23
Reason
Loved one DX
Country
US
State
CA
City
Eureka
WOW! You are on it my friend. Good for you, that is awesome. Your words emanate energy and optimism. I admire you and your strength. I only wish my father would be more open to utilizing the things out there on the market to help ease the symptoms and prepare for the loss of each bodily function. As it is right now he can still do nearly everything except open zip loc bags, light a lighter, make food, or button his pants. But as far as using the bathroom, talking, walking, and eating (with a special fork) he can still do things. He's been diagnosed for a year, does that mean his progression is slow?

Anyway the voice recognition thing sounds so cool. My dad's speech is deteriorating and its obvious. I would love for him to record himself so we can always hear his voice. I will never forget it, but that technology sounds so great.

Okay, that was long winded BUT I just wanted to respond because you sound so motivated. (Oh and I can relate to the genetic OCD thing as well, hehe)

Stay strong friend, you are amazing!
Chelsea
 
Joined
Apr 21, 2009
Messages
23
Reason
Loved one DX
Country
US
State
CA
City
Eureka
OH! I just noticed it wasn't you kylisa that posted it! It was a quote of someone else...sorry! Hahaha, but THANK YOU for sharing it, I love it.

Chelsea
 
Status
Not open for further replies.
Top