Love and Other Drugs

I feel safe using the title above for this entry.  My husband and I watched this movie the other evening.  I knew the main character had Parkinsons  but I thought it was a matter handled with humor based on previews I had seen.  Instead, the subject was handled with a pretty heavy hand and stressed the gloomy outcome.  There’s a scene where a husband speaks frankly to the lead male about what might lie ahead if he stays with his girlfriend.  He spoke in “stages”, a term I’d never even heard before.  I don’t know how my husband processed it; I’m sure we should have discussed it.  It’s the single thing I dread from this disease – making my husband my caregiver, screwing up his life.  How much should loving someone cost you?  What are your responsibilities?  I’ll address that in my next post.

I finally had the appointment with the neurologist who is a Parkinson’s disease/movement disorder specialist.  I had built up to this day by trying to make my situation the best I could – adding exercise, reaching out to a PD group, and learning more about the disease.  I don’t know what I expected; I guess that he’d enter the room like SuperDoctor, and set me on a whole new life course.  I built it up too much.  In fact, he was a nice man who evaluated me very much like my previous doctor had, agreed with him………and actually added a new prescription.  That, I didn’t see coming.  He’s adding a drug which is supposed to improve the effects of what I already am taking and extend how long I can continue at this dose.  He’s asked me to come back in a month.  Maybe that’s when he’ll unveil his superhero powers.

Fighting Back!

That’s the plan, anyway.  It was June, 2009 when I finally discovered what was making me weak when I stood, why I could only clap with one hand, why I couldn’t sleep and often just prayed to pass away quietly.  I was so relieved to have a diagnosis that seemed treatable and was planning to be open with the news.  Soon I discovered the downside.  While most of my family and closest friends accepted the news and offered support, I discovered that for some, I vanished instantly and became A Walking Picture of Parkinson’s.  No conversation began with anything other than, “How are you feeling?” and nothing short of a long recounting of current symptoms and misery would satisfy.  Lacking the desire for that sort of communication, I stepped back from those relationships and began to more carefully guard my health information.  As I stopped talking about my Parkinson’s and, as the medicine kicked in, I looked, for the most part, like myself again.  It was easier for the family to forget that things weren’t normal, and, being the mom, I’ve tried my best to make that the truth.

So that’s where I’ve been for over a year now.

One problem.  I’m not the same.  Even though the medicine has greatly improved how I feel, I still have symptoms.  I feel foggier and weaker as it gets closer to time for the next dose.  There are times when I just feel off-balance, like constantly walking aboard a ship at sea in turbulent waters.  Because I often don’t feel good, it’s easy to NOT do the very things that might help, like exercise.  I work half-days and am often bone tired when I get home, another excuse not to work out.  I haven’t educated myself as well as I should about Parkinson’s, haven’t gotten involved with a local chapter to learn and get support.  I work for a non-profit that helps people with another disorder and completely ignore my own.  I have felt like I was just giving in and going along, prepared to accept my situation.

No more.  I’ve made a decision.  I have, with my husband’s support, decided to quit my job and fight back.  I’ve spoken to my neurologist and he’s sending me to physical therapy to learn exactly what I need to work on when I join a gym.  I’m seeing a neurologist soon who is a specialist in Parkinson’s.  I’m going to learn more and get involved.  If I do all that and my health still deteriorates at the same rate, I’ll accept that.  But not now, not anymore.  Starting now, I’m fighting back and keeping a record.