Dana R. Spencer
I am Dana R. Spencer presently living in Blacksburg, VA. I have had A.S. since Dx in 1965; however, I think it came on earlier in my life. I was Dx with having a shorter leg to which I wore an insert in my right shoe, also an infection of the back and other conditions that I cannot remember. It disappeared until I was in the A.F. for about 1 ½ years came back as a nightmare. My hip would hurt one day, and the next it might be the neck or shoulder. Nothing over in drugs stores would help and it would come and go. Little was known at that time, and I think some doctors thought all in my head. I was stationed in Germany, and one day they did x-ray. I was told by the radiologist not to undergo x-ray therapy which was one prescribed method at the time along with gold treatments. I could function well some days and others it was horrible. To this day I can’t remember all the medication I have taken and time period. It has changed greatly over the years because of the pain, the sleepless night, and the exclusion from many things I wish I could have done. Social contacts with others have been a nightmare also because when I walk into a situation such as a restaurant, everyone turns to look at me by tapping their partner or whispering with hand over mouth. I have been called a hunchback openly and laughed at to my face. Many times in the past I was too young to have this condition or asked when it was going to be resolved. It has caused me depression especially when I started the other side conditions such as Iritis, Crohn’s, Mitral Valve Prolapse, Sjogrens Syndrome, Leukocytoclastic Vasculitis, Scleritis, suppressed Breathing which requires oxygen, and other perhaps unconnected health problems. There seems to be no one that understands.
I immediately after being Dx I went to a medical library in a hospital to determine the situation for myself. I was told by a foreign doctor who was difficult to understand and kept saying “little old man”. The library was not helpful because it contained about one paragraph of material and called the disease Marie-Strümpell disease. It was discussed as a bamboo spine and showed a picture of a man in at fetal position curved nearly in a ball. It sent shocked into my mind, and I cried because of the natural of the disease and the pain I had at that particular time. They the terrible spazium developed which always seemed to hit when I went to bed—I got to be afraid to sleep and often stood up motionless a good part of night waiting for it to hit again. Some of the medication during the 1970s and 1980s would eventually depress the pain after a few days but the side effects were terrible. It might cause bone marrow suppression or other complications. One time I was on a high regime of aspirin which gave me an ear ringing. I often felt like life was passing me by and I had a lot to do. I tried to keep a happy appearance, and I was afraid to discuss this with other. Parents were left in the dark and it was only my wife that saw on a day to day basis my condition. I don’t think my children fully understood what was occurring, and sometimes their comments today indicate this best—“Dad you are always dying”. I received cruel remarks from strangers, and people just couldn’t understand. It was like some sort of plague to them, and they reacted as such. I felt very alone and misunderstood by family and friends—when it was not noticeable I was often told it was in my head and I should receive treatment. I would be in a grimace at the time due to a spasm. There were no support groups out there, and it was later I was thankful for the Spondylitis Association of America. I could easily tell that some doctors were clueless on the disease and would ask questions that I realize I was training them. I was also afraid to take some of the pain killers at the time because it was always in my mind that I might need them down the road, and I would built a tolerance for them. Would they work when I needed them was always there and it may have saved me grief if I had taken them back when offered.
I tried to be active and I had various jobs over the years. I returned to college to take courses over the years and I found that younger people were more tolerate of me than people my own age. Someone about my age told me that if they had what I had, they would put a pistol to their heads. I found others offered the same strange remarks. Socially it was difficult and because I had lost about 9 to 10 inches over the years, it was hard talking to people taller than myself—it just hurt! At dinner gatherings, I always tried to place myself at the head of the table, which gathered negative remarks, but there was a reason. If I were to sit side by side with a person on each side, it was very difficult to talk to either because I just could not turn my neck in either direction. I would ask for a hard chair over a soft sofa, and this usually spark the host or hostess to find me exactly what I didn’t want. As my chest started to lack expanding breathing became more difficult and I went on oxygen about 10 years ago. One of the most promising things in the early day, given to me by a physician, was the promise it would “burn itself out” in about 15 years. 1980 came and went and nothing changed except it was getting worse.
Up to about 10 years ago, I never met personally anyone with this condition. Doctor’s would tell me that they had similar patients. I learned also that they were discovering it in females as most physicians in the early days told me only frail young men got it—there was no genetics that I was aware of in the 1960s other than it ran in some families. As I did family genealogy, I could account for no one in either side of my family—heart disease was the major problem among my ancestors. I was always trying to find the trigger point—I recall various illnesses of the 1950s and a toboggan accident before this was diagnosed. Could either be the cause? As mentioned, I always worked and tried to keep active, but the pain was mind stopping and some days were horrible—I was always afraid to admit too much in worry that I might lose the job or be tagged as unemployable. I developed the curvature of the back and my neck was nearly without motion. It was always on my mind and life was quality for 45 years. I could remember the early life I had up until the disease struck, but it has gone more and more distance as the years went by. As medication advanced since the 1960s there was some encouragement especially with the gene research. However, many of the modern medications have passed me by as physicians tell me today that if so and so exist 40 years ago, things would be better for me today. I am beyond any help from such medication. I am very positive that with the work of the Association and research, the answers will be found, and this gives me great hope for those suffering in the future.
About 20 years ago, I discovered that daily exercise helped me the most. While it did not stop attacks, it made me feel more positive and stronger. Around 1987, I joined a gym where I managed weights, walking a treadmill, and spinning (stationary biking). I developed a system where I went daily, and day’s missed were made up in double and triple exercise to catch up. I did two of these exercises daily and a mixture and including stair climbing, Ti chi, and jazz exercise along the way. It was difficult and some days I couldn’t even get on the bike. But over this time period I managed two exercises a day at a set standard. For example one mile counted as one of the two. Since Dec 1911, due to breathing problems, it has been hit and miss, and I struggle to want to get back into such a program.
Dana R. Spencer
Captain, USAF, (Ret)
Virginia United States of America
Sadly, I must report that Dana R. Spencer, 0703, passed away on October 28, 2013. He appreciated the opportunity to post his story on this site, and my heart goes out to all of you who suffer from this devastating disease. Thank you, Cookie, for allowing all of the wonderful Faces on this blog to tell the world who they are. Marilyn (Dana’s wife)