I saw my neurologist more than a month ago. He didn’t say as much, but in the midst of his attempt to talk his way around my questions, providing me with no real answers, I could tell that he didn’t have any, and that my “case” was beyond his level of expertise, and comfort for that matter. His solution! He referred me to the ONLY movement specialist within a 4 hour drive from here.  Great, I thought, someone who deals with these types of rare (at least to this state) conditions all the time. Someone, who won’t dance around my questions, who knows what needs to be done, and isn’t afraid to prescribe me whatever is going to help me. ME!!! Yeah, ME, I am a person, a fellow human being.  Sound too good to be true. It may be, considering that I’ve already hit my first catch. From the time of referral it will take 6 months to a year to get my first appointment.

I got some bad news yesterday. My physical therapist informed me that my insurance changed their coverage of my physical therapy, and that I only have 1 more visit allotted for this year.     My dystonia is “generalized” on my left (parky) side, and am also dealing with rigidity so bad that it has literally pulled my hip joint, shoulder joint, and sacrum out of their usual positions. Add the over-curvature of my spine, and extended periods of muscle spasms to the stiffness and bradykinesia, and let us just say, it’s hell on earth.

I was having a famously bad day with my Parkinson’s symptoms and excruciating pain yesterday. So, I called my doctor in tears and all he had to say to me was “once we get your Parkinson’s under control, you won’t be in pain anymore which should be a lot easier once you can get in with the movement specialist. JUST HANG IN THERE.” [Where I live, doctors won’t prescribe any pain medication unless you have surgery or you are literally on your death bed.] My many doctors have me on Requip, Artane, Naproxen, Flexeril, and Klonopin. The Flexeril and Klonopin are supposed to help with my dystonia, muscle spasms, and pain, but I might as well be taking a multi-vitamin. That is how effective they are. My physical therapist suggested that I should have my doctor switch me to Soma (another muscle relaxer but not a narcotic), because other PD patients have had some relief with it. I asked my doctor and he said NO… because “when it breaks down in the brain, IT MAY HAVE ADDICTIVE QUALITIES … FOR SOME PEOPLE”. Really!?! For SOME people it MAY have addictive qualities… that is your excuse for not prescribing me something that may help alleviate some pain and discomfort.

I have days that are so bad that I can’t button my own pants, or that I am so stiff, and in so much pain that I can barely get out of bed. I need help just to get up to use the bathroom. This is no kind of life right now, and no one seems to want to help me. It isn’t as if I go to the ER every other day complaining of a headache or sore back, just to get a fix. I have a legitimate disease, with a legitimate diagnosis, and legitimate complaints. I am so sick of not being heard, and being treated like a drug addict. I am feeling so disenfranchised, and marginalized by the whole medical community, that I am getting depressed and desperate.

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