All Posts Tagged ‘Wilson’s Disease


My absence…


I have not been blogging lately.  The reason why is that my wife, Marla, had to have surgery recently.  She had a total shoulder replacement done.  I have not had time to do any blogging due to helping her with things.  Perhaps I will be able to blog once in a while soon; we will see.  The surgery went well… and she is recovering better than expected.  Marla has a very delicate constitution and is extremely fragile.  A lot of this has to do with the Wilson’s Disease that she has.  Wilson’s Disease is a rare disorder; it is genetic and involves the inability of the body to metabolize copper.  The copper can then act as a poison within individuals who are not properly treated for the disease.  Related to the Wilson’s Disease, Marla has very severe neck dystonia… wherein her neck muscles become extremely tense and rigid; she gets botox injections to help treat the dystonia.  For a long time, Marla was on penicillamine to treat the Wilson’s.  However, that medication had so many side-effects that it was almost as bad as having the disease itself.  Marla, likely due to the penicillamine, developed ARDS and almost died.  Then she had to have neck surgery for collapsed neck vertebrae, a surgery that took 11 hours and caused her to have very limited swallowing ability.  Now she mostly receives nutrition via a gastrostomy tube that goes to her stomach area.  I help her with the enteral feedings and various things, and it is time consuming.  These days, Wilson’s Disease is easily treated with zinc; the zinc has, fortunately, little or no side effects.  Marla bravely contends with her physical problems; she often helps others (who have Wilson’s Disease or dystonia) to better understand things about those ailments; she, as a person, is as sweet as can be and is an extremely wonderful and very understanding person.  I am honored to be married to her and want to make sure that she does well throughout the recovery process.

 Photo by Thomas Peace c. 2015

Photo by Thomas Peace c. 2015