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Active member
Aug 11, 2006
I'm the recently diagnosed journalist --- and I will have a first-person story about my experiences running tomorrow (Sunday, Aug. 27) on the following website:
There will also be a video, the link for which should be adjacent to the story. You'll need Quicktime to view it. If you don't have Quicktime, you can download for free at the following site:
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Great story, great video, Leo--I've saved it on my computer. It was good to see you driving and walking so well. My understanding is that progression in ALS tends to be linear and your relatively slow progression since symptoms started three years ago should bode well. I'm surprised your doctor didn't offer you a more encouraging prognosis than the usual "2 or 3 to five" years.

I'm curious--your initial symptoms were bulbar (like mine) but your speech continues to be very understandable (same here) and your limbs are showing signs of weakness and lower motor neuron damage (ditto). Is your official diagnosis bulbar ALS or limb-onset? (I am bulbar.)

The doctor never said which type and I didn't ask. My first symptoms involved the voice and swallowing --- and I developed a cough and regurlarly choked on food. But that reached a point and stopped and then it went into me legs and arms and neck.
Great stuff Leo. Make sure you let us know when there are updates. This type of publicity just can't be bought. Great idea and thanks for sharing your life with your viewers. I know how hard it can be sometimes to talk about it. Thanks again. AL.
I enjoyed your article; you are a gifted writer. The film was also very good - any chance that you will continue to video tape your progress and thoughts ? (Maybe one day it could be a full lenght documentary). Thank you for sharing.
Leo you did a great job

I think your story and video were great. Thanks so much for getting the message out there for those of us who are not able. I really enjoyed your message.
God Bless,
Big AL

Brilliant writing. Thanks for helping raise awareness through publishing your own experience. Yiou miught want to do a web search on Rob Borsellino, another journalist (from Iowa) who wrote about his fight with the disease. Unforunately, he is gone now, but his writings endure--a path to his immortality I suppose.

More stories

Sometime in September, I plan to do a story and video profiling four people with ALS. Putting human faces on this is important (and getting the focus off me). I plan to use it also to help promote the October fund raising walk at USC. I've asked my parent company to sponsor the walk. I hope they do. I also contacted the local ABC and Fox affiliates and had the local ALS Association send them sponorship applications.
This is all theraputic for me. It keeps my mind on work instead of wondering if I'm a little worse off today.
I also appreciate all the supportive comments.
Hi Leo. That's an excellent article and and a hard hitting video. The 150,000 figure is a good one to use rather than the low prevalence figures that are more commonly used. I like to tout that about 1 person in 450 will die of ALS. Not so rare, just that its victims don't last long and, because of mobility issues, are not often seen. Perhaps with your writing skills, you are the one to take the ALS case to the Gates Foundation. Warren Buffet has willed them 44 BILLION dollars and made the first payment this week. What a tailor-made opportunity for ALS research.

Your symptom history reminds me of my own. My first symptom was the inability to pronounce the first "L" in "lily". I was so shocked I backed up and tried to say it again with the same faltering result. I had never had a speech problem. That was in the fall of 1994. From there my speech got worse and choking issues began as well. These, accompanied by the first limb weakness in 1999, led to my diagnosis the following year. Oddly, my speech is still fairly good although quite variable over the course of a given month and my choking episodes have lessened. Not so lucky with limb weakness and I now use a scooter most of the time but still drive and work full time.

Looking forward to seeing your next production.

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