Kennedy’s Disease (KD), scientifically known as Spinal and Bulbar Muscular Atrophy, is what what I’m trying to get tested for. This article on Kennedy’s Disease has excellent information on the disease. I have many of the symptoms. The chief disease that it is confused with is ALS (Lou Gehrig’s). ALS has already been ruled out in my case.
I’m currently a member of a national level support group on Facebook that has members from the National Institute of Health and personalities that are fighting for information using tradition media.
Their introduction into my life has been beneficial. Even if I fail the DNA test for KD, I understand that I am not alone. I have learned that there are a number of “rare diseases” in this world that are difficult to diagnose, categorize and thus, treat.
I think I a moving into a different phase of my journey. It appears that we have gained enough intelligence about my condition that we can do somewhat normal activity. However, the activity extracts a cost to me physically and medically. However, paying this cost is after we are able to do what we planned to do. There is no sustainability in these actions. When my body has enough, the crash is rapid and severe.
An example of this was this weekend. My wife and I traveled to an incredible friend’s place. The drive was about 2 hours. To make the trip, I drugged myself up heavily. Friday night and Saturday morning was not real good, but I rose and in the afternoon we were able to briefly go to a festival. I was in the chair at the festival and for the remainder of the evening. We made it to three breweries and a restaurant. I had some rather awesome beer. Dining at Carreta’s was beyond amazing. We then made it back home and I, essentially, dumped myself into bed. I slept until 11 am the next morning.
Today is Monday and I feel as though I could sleep for another day.
My muscles are very rigid this morning. I don’t want to take any more meds as I heavily medicated myself for the entire weekend. However, I need my muscles to loosen, lest another spastic event begins. The last one lasted from Monday night last week until Friday night. I think the heavy medication I ingested for the trip, broke the cycle of spasms.
All movements this morning are slow and deliberate. I feel like a “Tin Man.” The “Tin Man” feeling is something that I have characterized to my wife for almost a decade. I wake up and all my muscle feel like they need to be oiled. In the beginning, we assumed this was due to osteoarthritis, which I also have. However, the tests have shown that I don’t have osteoarthritis bad enough to cause the stiffness. It wasn’t until I was unable to move that a rheumatologist told me these were neurological symptoms and not arthritic symptoms that we were placed on the right tract. He refused treatment until I went to a neurologist. That really began my journey, in the early spring of last year. I will never go to a different neurologist. The man was the first person to correctly identify the manner of the disease. I owe him deeply. I have since returned to him and he is treating me for osteoarthritis and osteopenia (precursor to osteoporosis).
Osteopenia, primarily affects women. I must look into if there is any evidence of this being disproportionately represented in KD patients.
I’m fighting the urge to say KD is it. I don’t want to get my hopes up that we may have found a name for this evil. But, man, the chips are stacking up.
We should find out this week if the test has been approved. Then two months, we will have to wait for the results. It will be such a relief to give it a name.
Jay C. “Jazzy_J” Theriot