Official Diagnosis

Well, it’s official – Cervical Dystonia is what’s making my neck go all wonky.  Basically a part of my brain called the “basal ganglia” is not working right.  This quote from a Mayo Clinic article explains it more clearly – “The basal ganglia are structures deep in the brain that are in part responsible for controlling movement. They regulate the numerous muscle contractions that are necessary to move the body. If this part of the brain is damaged in some way, the wrong muscles contract when we try to move.” I also learned that women over 30 are affected more than men and that it can be genetic.

How did this happen to me?  I have no idea.  Apparently, the causes are basically unknown.  Is it curable?  Most say it isn’t, but my neurologist claims to have seen people cured of it.  So, for the next four weeks we are embarking on a journey to find out if I can be one of those people.  I see the neurologist once a week and have a laundry list of homework to do the rest of the week.  I’ve been given four different neurological “exercises” to do every day.  Some three times a day and some five times a day.  My husband has informed me that my “job” for the next four weeks is to try and get better.  He is a sweetheart of a guy and totally supportive of me.  I am incredibly blessed with that man.

This condition is frustrating, painful, and quite honestly, embarrassing.  I’ll be trying to talk to someone and look them in the eye and, unless I’m holding my head, it drifts down and to the left and I have to fight it to bring it back.  Checking out at the grocery store is particularly uncomfortable because my hands are busy working my wallet and the card machine, and can’t hold my head.  So, I find myself talking to people with my chin in my shoulder.  Awkward!  A neck brace is helpful, and I’ve been advised to not come to rely on it as that would result in weak neck muscles.  Not something I want.  The temptation is to avoid social situations altogether, but the thought of becoming a hermit doesn’t really appeal to me.  What to do?

I’m still not entirely sure other than to take it one day at a time while giving it to God.  Do my “exercises”.  See the neurologist.  Pray for healing and pray for God’s grace to get me through each situation.  I am extremely blessed to have some awesome people in my corner; friends who are praying for me, a loving and supportive husband, and medical professionals who truly care about helping people.  One professional in particular has been amazing.

I’m not sure she could be considered a “medical” professional.  Maybe a therapeutic professional?  I’m not sure there’s even a difference.  Whatever the case, my massage therapist – McKenzie Reeve – has been invaluable to me.  With the way my neck turns and spasms, my neck and shoulder muscles get very tight and sore.  I started seeing McKenzie before we even knew for sure what was going on.  She did everything she could think of to try and help me.  She asked colleagues, did research, collaborated with my chiropractor, and took extra time with me if needed at no extra charge (she charges extremely reasonable rates to begin with).  This woman has just gone above and beyond and I love her to death.

Cervical Dystonia is not widely known.  My chiropractor didn’t even know about it. We were originally on a muscular trail, thinking maybe the problem was stemming from a pre-existing condition in my neck.  It wasn’t until I started doing some research of my own that Dystonia even came onto my radar.  When I shared my findings with my chiropractor, she referred me to the neurologist.

I have no idea what the future holds, whether I will be cured or not.  I do know that God holds me in the palm of His hand and whatever happens, He has allowed it for a reason.  Regardless of the outcome, I choose to be hopeful.  😊💕


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