Posted 10/29/2013 11:56 PM (GMT 0)
http://neilsbucketlist.blogspot.com/2013/10/a-helluva-ride.html
Neil's Bucket List
In 2013 Neil was diagnosed with Progressive Supranuclear Palsy (PSP). Before the disease robs him of all mobility, his wife of thirty years, Deidre, decided to dip into their retirement savings and buy a motorhome to take Neil on a cross-country adventure through the United States and Canada to help him check a few things off his bucket list.
In hindsight, we believe Neil was showing signs of PSP in 2008. His thoughts and movements had slowed. In 2009 he was falling off ladders, and falling backwards, and he looked like he was zoning out; he also did thumb-to-finger rolling, throaty speech, and his voice became very quiet and his writing very small. He would fall into a chair rather than sitting himself in it. By 2010 he was walking around like he was drunk. At this point we had talked to many doctors trying to figure this out. In 2011, he was seen by a neurologist. His comment? If it's still happening in six months, come back. Neil was also seen an ear specialist, and in May of 2011, another neurologist who put him on Mirapex. In April 2012 he was taken off the pills, slowly, as it was very apparent they were doing nothing for him.
Neil was getting worse by the week; head tremors, falling, tired. He was able to get an appointment at UBC Hospital neurologist, who put him on Sinemet (Carbidopa-Levodopa) until the max dose was achieved within a year. The pills did nothing for him. At that point, April 2013 he was confirmed as having PSP.
Neil's balance, thoughts and movement has declined, and in October 2013 he is starting to have coughing and swallowing problems. Neil was also diagnosed in 2006 with prostate cancer. He had surgery; it did not work, resulting in 33 radiation treatments in 2009 that also did not work. His PSA levels rose—an indicator of the cancer returning—and he started hormone treatment in 2012, finished HT treatment in June of 2013. We have for now stopped all treatments for everything, and are going to try to go about the business of living. ONE DAY AT A TIME Thanks for reading Neil and Deidre Wanless from BC CANADA