BENEFITING: ALS IN WONDERLAND Foundation
Hello. My name is Scott Patterson and I was diagnosed with ALS in 2002, the day after my 37th birthday. I celebrated my 50th birthday in April of this year (2015). The following is a brief look at ALS and how it affects PALS (persons with ALS).
It costs approximately $200,000 a year to support one PALS. I am sure that you can imagine the financial burden put on ALS patients and their families. I have been fortunate that my ALS has been progressing much more slowly than it usually does. There is typically a three to five year life expectancy. I am not sure why my case has progressed so slowly and no doctors can tell me why either. ALS attacks the motor neurons - this disease degenerates muscle while at rest. Motor neurons usually stimulate muscle while at rest to regenerate muscle and maintain strength. It is not known what causes the disease and there is no cure for it. Most of the drugs I take every day simply help control symptoms such as cramping, muscle, neck and back pain, excessive saliva, depression, anger, etc. The only reason I think my case of ALS has progressed slower than normal is due to my age when I was diagnosed. Most are diagnosed after they are 50 years old. Being only 37 when I was diagnosed, I was in pretty good physical shape and probably had more muscle to degenerate than most of the older patients with ALS.
In the last couple of years, I have had to hire someone to come to my home daily to help me with everyday tasks and/or activities such as showering, dressing, toiletry, etc. Even loading me in my truck has become much more difficult. Getting into bed has become an issue as well, so I have been sleeping in my chair about half the time. When I slept in bed, I would wake up many times during the night to take pain medication and gripe about how bad my back hurt. The hospice nurse recommended a fully adjustable air-supported bed to alleviate some of the back pain. I researched and shopped around on the internet and spoke to others and came to the conclusion that the Sleep Number bed was going to meet my needs. The model I chose has sensors that track how many times I wake up and monitor my heart rate and breathing. It is easier to get in and out of bed as well as it reduces the need for pain medication and I wake up virtually with a pain-free back. It took about a month to adjust different features, but now if I wake up one time during the night, it is unusual.
Thank you for your time.