Progress on the Kennedy Disease DNA Test

My neurologist, primary care, insurance company and lab are all coming on line.  The neurologist’s office faxed a letter of “Medical Necessity” to the insurance company today requesting a DNA test for Kennedy Disease.  The test is only $800, which is cheap for a DNA test. However, it does use the lab’s resources. Thus, the test is not administered without a bit of scrutiny.

I am experiencing what I can only describe as anxiety whenever this topic comes up.  I have been reticent to write about it.  I have multiple conflicting feelings at different levels.

On the front-side of it, I don’t want to get my hopes up that this will be a positive test and we will finally have a name set to my Hell.  We have been aggressively fighting the symptoms for over a year now.  The idea that we may be able to shift to fighting the disease is massive.  I don’t want to think about it.

On the back-end, after the test, it will either be a “yes” or a “no.”  A “yes” means shifting my treatment plan into something that should not only halt the progression, but could possibly reverse some of the symptoms. The other side of that sword is that my yet-to-be-borne grandchildren are implicated.

A “no” means we wasted a considerable amount of resources in time, money and effort and we have gotten nowhere.

Still, we have to try.  The concept of putting a name on this disease is overwhelming.

“The beginning of wisdom is to call things by their proper name.”
― Confucius

and

In the world of ideas, to name something is to own it. If you can name an issue, you can own the issue.
— Thomas L. Friedman

In addition to this development with the KD DNA test, I had a checkup with my primary this morning.  According to her, we are primarily monitoring my system for side-effects from the large number of medications that I am taking and praying that nothing gets screwed up.  I am basically taking a considerable amount of poisons that will shorten my life, but make it livable for the short-term.  I’ve maxed out the NSAIDs I can take so any swelling of the legs I am to report immediately.

I am very likely causing damage to my liver.  I’ve got a full panel of blood tests coming that will show me the progression of that decay.

I am blessed that I have such a wonderful wife and mother-in-law.  They have been through a similar thing with my late father-in-law.  His problem was considerable arthritis.  I had the honor of calling his TOD.  I miss him.  I could use his guidance.

I am beginning to enjoy the efforts of my nesting.  My macro photography acts as therapy.  I have an inversion board that really helps in the middle of the night. I have a recombinant stationary bike that helps me get exercise with zero impact. My Amazon Alexa integration is moving along. And a myriad of other technology integrations and modifications are helping get the most of what abilities I have.

My wife and I are planning to break free next weekend and head to my happy place in Kentwood.  I cannot wait to see the lake.

These things in Christ,

Jay C. “Jazzy_J” Theriot