I'M AFRAID

I'm a reader.  If there is something I want to know, I research it and read about it.  So, you might imagine when I was diagnosed with Parkinson's Disease in 2008, I started to research it.  What caused it?  What can I do about it?  What can I expect from it?  How is it treated?  How will it impact my life?  When will it impact my life?

When will it impact my life? "Now" is the answer, but it's also a really the big unknown.  Parkinson's is divided into 5 stages.  I can't even tell you what stage I'm experiencing right now.  I suspect it's like every other thing I know about Parkinson's.  Nothing is the same for everyone.  Each person progresses at his or her own rate.  Some may suffer from dementia and some may not.  Each will have a different level of muscle stiffness.  Some may never experience swallowing difficulty.  Others may have swallowing problems early, but never deal with many tremors.  Other may experience tremors no matter how much carbidopa/levodopa they take.  

Even the medicine, itself, poses uncertainty.  Here's what WebMD says, in part, about Levodopa:

                 Levodopa does not slow the disease process, but it improves muscle movement  and delays severe disability. . . . levodopa allows people with Parkinson's . . . to stay independent and able to function for longer periods of time. But the majority of people taking levodopa develop [movement] complications caused by long-term levodopa therapy within 5 to 10 years.

So here's what I really want to know. The information I read is peppered with words like "disability" and "independent."  When is someone else going to have to help me do things?  I tremor, but not much.  I have a strange swallowing thing going on, but not such that it affects me in any way.  But, gosh, I ache.  I ache all the time.  I don't know if it's Parkinson's or being 54 years old.  I know it sucks.

I'm afraid that if I don't start doing those things I'm supposed to do, I'm going to need the assistance sooner rather than later.  I get that.  That's why I'm afraid.  But I'm so tired and so achy, I don't have the gumption to get up and do it.  I wish I had a Parkinson's Coach: a person who will come to my house and wake me up in the morning at a healthy time and push me through my day.  Exercise with me, fix meals with me (not for me - with me), and then push me to go to bed.  Oh, and help me clean my bedroom, so I'm more inclined to go in there and go to bed.  If it goes right, it won't be a full-time job.

I suppose a Parkinson's coach isn't very practical.  So, I don't know what I will do.  I'll talk to Bob.  I'll figure something out.  I'll let you know.

If you come up with an idea, let me know.

G