ALS What next?
After beating around the health care system for over three years, and going through painful cervical spine surgery I was diagnosed with amyotropic lateral sclerosis or ALS. It is called Lou Gehrig's disease in the US and motor neuron disease in Europe. What a shock. Sent home with a prognosis of having only 3 to 5 years to live, probably paralyzed for a portion of that time, my wife and I were beside ourselves with fear. Suddenly our lives which had me falling frequently, slurring my words, and having twitches in my muscles, all of which were disturbing but not life threatening, were turned upside down. It was October and we were living with our son during our four or five months up North from our home in Florida. I mean would I be here for Christmas? If I was here, would I be paralyzed or bedridden? This was not good news, it was terrifying news.
We had a very comfortable life. Our health seemed pretty good, we both were retired with comfortable pensions from the federal government. We owned our small home in Florida where I spent most of my time working as a volunteer for a museum that I had helped to found to preserve the history of the American Era of the Panama Canal. We had sold a much larger home we had built on a golf course in Central Florida to buy a smaller home which would allow us to spend five or six months each year in Maryland where our son and our two grandchildren lived.
We had our own rental apartment in Maryland and were blessed with the time to spend with our two young grandchildren as they experienced their school and after school life. We got to spend a lot of time with the two young ones, and our son, who had his own company and traveled quite a bit. As winter began to creep into Maryland, we were able to flee to our home in Florida where we enjoyed the relative warmth and renewal of friendships with our Florida family and friends. As I think back on it, it was a pretty idyllic life.
Now we had this terrible news. What should we do, how long did we have, how would we be able to pay for the health care that would be required as my body slowly shut down? What next?
We had a very comfortable life. Our health seemed pretty good, we both were retired with comfortable pensions from the federal government. We owned our small home in Florida where I spent most of my time working as a volunteer for a museum that I had helped to found to preserve the history of the American Era of the Panama Canal. We had sold a much larger home we had built on a golf course in Central Florida to buy a smaller home which would allow us to spend five or six months each year in Maryland where our son and our two grandchildren lived.
We had our own rental apartment in Maryland and were blessed with the time to spend with our two young grandchildren as they experienced their school and after school life. We got to spend a lot of time with the two young ones, and our son, who had his own company and traveled quite a bit. As winter began to creep into Maryland, we were able to flee to our home in Florida where we enjoyed the relative warmth and renewal of friendships with our Florida family and friends. As I think back on it, it was a pretty idyllic life.
Now we had this terrible news. What should we do, how long did we have, how would we be able to pay for the health care that would be required as my body slowly shut down? What next?
posted by gamboachuck at 5:46 PM
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