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Re: My dad is dying of ALS

Re: My dad is dying of ALS

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Posted by donna on November 28, 1999 at 13:25:55:

In Reply to: My dad is dying of ALS posted by Em on November 11, 1999 at 06:29:41:

I quit a job of 19 years to move in with and care for my friend RJ. RJ will be 52 1 week from today. In Jan. '94,he was diagnosed with ALS after approx. 1 year of slurred speech, coughing, choking, some drooling and unsteady gait. Everyone "thought" he had had a stroke. He continued to work as an accountant for 3 years. He used a hand held speaking "computer" for his verbal communication. He probably should have stopped working sooner than he did, but he loved his job & wanted to work as long as he could. He had to start using a wheelchair and soon needed 'round the clock care; to help with dressing, medications, food via g-tube, using the remote control, moving any of his extremities... EVERYTHING.
In November '98, he was aditted to the hospital with pneumonia. Two days later, he had respiratory arrest. It was his wish to be resuccitated. He spent about 3 months in a hospital/nursing care facility that specializes in ventilator patients. We found out that you can go home on a HOME ventilator and had been making plans to do that during his last 6-7 weeks in the hospital. Barring a few "problems" or scares at first, all is going well and he has been at home now for 9 months!!
He does take supplements: Grape seed extra, DHEA, CoQ 10, Vit A, C, & E, and we are going to add Methylcobalamin and Selenium. Are they helping?? Who knows? Given the fact he has bulbar ALS & probably should have died 1 year OR MORE ago, something is working!
He spends his days tracking investments on the internet, adding to his collections by buying through eBay, watching movies, and obviously battles bouts of boredom and occasional depression. DON'T GIVE UP ON YOUR DAD AND REMEMBER TO BE AS PATIENT AS YOU CAN BE, the days ahead will be trying times. God bless & good luck

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