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 (http://www.saratoga-intl.com).
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.
I believe that avoiding the rocks and shoals prolong your life expectancy. Do you agree or disagree? I'd like to hear from others.
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3 comments:
Tony,
Your preparations are genetic all right; I can see the influence of John Wallace at work. It is not only about rationalization and organization, but it is also the right thing to do, both in doing what you can to take care of yourself, and doing right by those you love. And you have succeeded admirably. I hope that you will inspire many. I am speaking to my boss about coming to visit soon, and I'll be in touch. Love,
Simon A. Steiner
What wonderfully sound advice. I am forwarding this to my MIL to share with my FIL, who is also a PALS. Keep up the fight, Tony!!
Tony,
Thanks for sending me here to your site from Living with ALS. You and I seem to have the same approach. My bride and I have tried to stay ahead of progression almost to a tee we have done what you have done and when you did it. Thanks for your site and insight.
Are you active as an advocate for ALS? I would invite you to join the ALSadvocacy Yahoo Group. We need more folks dedicated to looking for solutions. God bless.
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