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Five Months Later- Still Moving

Posted Sep 19 2011 6:43pm

A year ago I was living in our old house, and was bound to it by the physical challenges of illness.  Today I look out the big beautiful windows of our new home and feel overwhelmed at the fact that often I can walk out into the view… independently.  A year ago the reason for my illness remained a mystery.  Today answers to why my body struggles, are clarifying.

My last post was five months ago.  I was waiting to share until I had my follow up appointment with the Movement Disorder Specialist out of state, who prescribed me the medicine that for me is a life changer.  I did not want to write my speculations or guesses.  I also have not been writing much as I have been in the moving moment and putting my renewed function into “moving” into our new home.

I want to clarify my last post, as I know I left readers “hanging”.   Had I been given a new treatment for ME/ CFS?   No, I haven’t.   The diagnosis of my illness has taken a direction away from ME/CFS.

I have a Dopamine Deficiency… a Parkinsonian Condition.  I hoped after waiting these five months for my second appointment with the Movement Specialist to be able to share an exact diagnosis, but the doctor is still in process of narrowing it down.  She is testing for Dopamine Responsive Genetic Conditions and Early Onset Parkinson’s Disease.  I will see her again in four months and hope to learn more.

Mirapex is the medicine that I take.   It is a Dopamine Agonist, which means it helps the brain make and process Dopamine.  Dopamine is necessary for the brain to communicate with muscles and for normal movement and coordination to take place.

Mirapex is also helping my Autonomic Nervous System to work more efficiently.  I am tolerating heat better and am able to stand up in one place for much longer periods of time.

I am able to exercise!  Those of you with exercise intolerance I know understand the absolute joy of this.  I walk about two miles five times a week.   I am also starting to cycle on a “trainer”—makes a road or mountain bike stationary so you can work out at home.

When my medicine is working efficiently, I often feel like my old self from twenty years ago.  I have energy and can be as hyper as I used to be.  Then there are “off” times when the medicine isn’t working as well, because I have a UTI, or did too much the day before, or walked too hard or far that morning.  Also, being new to this, it will take awhile to get the dosing just right.  When my medicine is “off”, my left leg doesn’t want to come off the ground, my left arm stops swinging, its hard to smile because my face muscles are stiff…and I feel slow, tired and uncomfortable.

A good lot of my time, I am enjoying what I can do that I haven’t been able to in nearly two decades.   We hosted a “thank you for helping us move” party Saturday night.  I was able to have a great time and tolerate, being in the midst of fifteen wonderful guests, music and a lot of stimulation.  Last week my daughter took me to the Shakespeare Festival.  We picnicked in the outdoor theater.  On my birthday, my parents came out for a visit.  With my husband, my daughter and my parents, I went for a hike in the mountains.

A year ago, I hadn’t a notion that I had a Movement Disorder.  I had grown into an acceptance that my journey was living with a mysterious illness and that my life would be lived within the walls of my home.

Though there is much to be learned about Parkinsonian conditions, and though there is no cure, there are treatments that help symptoms.   I have medicine as well as physical therapy and speech therapy.  I have a physical Medicine and Rehabilitation Physician, who I like very much.

I have a “Care Team”—and I am grateful.   This is what I wish for all who are chronically ill, be it with an illness that is well known, rare, not yet understood, diagnosed or undiagnosed.

Take good care, and never give up seeking good care,    Kerry

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