Going Home Again

Ok, so I know it's been a LONG time since I posted.  In the past few months we bought a house and have been moving and renovating.  We are hoping to be done very soon, but it has been a long process.  So there's my excuse.  ;)

Last week we went back to our hometown for Thanksgiving.  It was the first time I was there since my diagnosis.  It turned out to be more stressful than I had anticipated for a variety of reasons including a 2 day trip in a tiny car with 3 little girls in the back.  (Besides a family member being extremely ill)   I expected someone to say something or ask questions, but no one did - not even when the stress of the week caught up to me and I had an awful tremor during one of our Thanksgiving meals.  I know there are probably a hundred reasons for it - not the least of which was the thoughts for our ill family member.  I have had generally one of two reactions to my diagnosis:  "are you gonna die?" or "I don't want to talk about it".  I really hope one day we get to the answers:  "not necessarily a lot sooner" and "I need to talk about it. Please try to understand what is happening to me."  

I am still processing this whole thing.  The move has been a great diversion and has mostly taken my mind off of it.  However, as the move winds down, reality is setting in and I am having a hard time wrapping my thoughts around it.  

So far, here's my reaction...

1.  when the first doc said "pd might be a possibility - take this pill and make sure it doesn't work" and then it worked I was shocked and mostly kept my feelings to myself - crying when no one else could see.

2.  then the specialist confirmed the pd and I went into research mode - looking for all the information I could find, meeting others on the internet and even going to Atlanta to  a YOPD conference.

3.  then we moved and I let myself go into denial for a while.  I was too busy to think about it.

4.  Now, I am realizing I really do have Parkinson's, I will be on medication the rest of my life, any little bit of stress or any strong emotion sets my arm into tremors, I will continue to lose control of my body (and possibly/probably my mind) little by little, brain surgery is a pretty good possibility, and worst of all my husband and my little girls will have to watch me slowly deteriorate.   

Fun stuff, huh?

Any of my super smart friends wanna find a cure?

Coming Back to Life

There is something that I do that I am very passionate about. It is spiritual and personal and an expression of how I worship. I sign to music - particularly praise music. I've done it since I learned my first song, Silent Night, in first grade. Since then, I have taken every sign class I could find. From girl scout camp to the very first time my high school offered sign as a foreign language, I was there. When I went to college and found a sign language choir to be involved in I was hooked. This is where I found my passion. I was blessed when I was able to lead the group the second year I was there. God did amazing things in my life during that time. After college, I was disappointed when I came back to my home church in a large metropolitan city and wasn't able to do regularly what I had come to love. Eventually, I had the wonderful opportunity to interpret for a deaf couple and was even invited to sign to music at their wedding. I did occasional interpretation (of services and music) after that, but it wasn't on a regular schedule.

Then, we moved to Wyoming last year. We found a church that we loved and they even had a place for me on the praise team to sign as much as I wanted. I was so excited to have the opportunity to share the passion that God had put in my heart. I had about 6 months of signing nearly every week. Last fall, I started having with joint pain again (I had seen docs before and no one could tell me what was wrong). I really didn't think anything of it until mid-December when I started having nerve / muscle pains in my arms. When I was in church one Sunday morning, I realized my arms were not lifting up like they should. They hurt and I couldn't get them up to form the signs for the music. (I wasn't on the praise team that day.) The next week I informed our music leader that I would have to take a leave of absence until I figured out what was going on. A few months later I was diagnosed with Young Onset Parkinson's. Now, I was on medicine that helped with the pain and stiffness. But I was also dealing with the emotional side of being diagnosed and just couldn't get myself to worship with all my heart. It was the first time I had ever had such a hard time worshiping.

So, now we come to August and I still hadn't done it since I started having problems last December (I checked my file on i tunes where I keep my church music - the last music on there was Christmas music). That is, until Friday night in Atlanta. I was fortunate enough to receive a scholarship to attend the Young Onset Parkinson's Network conference in Atlanta, Georgia. I was rooming with a couple friends (wonderful Christian ladies) I met online while I was there. I knew that it was time to sign again and I couldn't think of a better time or place. It was very emotional for me. I had to take a few minutes before I could start the music and get started. (I chose "You Never Let Go" for my first song. At my very first brain MRI that song was on the mix CD that they let me listen to inside the tube.) They were very understanding and encouraging and even requested more after the first song. After that first song, it got a lot easier and I actually enjoyed it again. We went through several songs before we decided we really had to go to bed. I think I am starting to come back around. So, it turns out my time at the conference was so good for me for more than just the information I received and the friends I got to meet in person and the great big hugs I got to give and receive. (not to mention the Blue Bell ice cream I got to enjoy!!)

I got a part of me back.

Here I go...

Ok, so I guess I have to start somewhere. So far, this year has been very much a blur. Long story short, I started this year (actually last December) just not feeling right. My muscles were giving me pain and I was having "joint pain" again. So I saw the rheumatologist. When I was at the rheumatologist the tremors were constant and I asked for a referral to the neurologist. I saw a regular neurologist for a couple of months who ended up suspecting "early Parkinson's" so she sent me to a Movement Disorder Specialist. On June 4, 2008 the Movement Disorder Specialist confirmed a diagnosis of Young Onset Parkinson's Disease. I now feel that the "joint pain" I've had since early 2001 was actually stiffness due to PD. (I also had tremors start in 2006). In other words, this has been coming for a long time. It is a relief to have a diagnosis, but frightening to wonder about the future.

So now we move forward. I don't know what it's going to do to me. I don't know what the future looks like. I've thought about it and dreamed about it but now everything I've thought and dreamed about will have to adjust to this new reality. Some things will stay the same (my faith, my husband, and my girls), some things will change (how I do things and the speed at which I get them accomplished), and some things may have to be eliminated (yet to be determined). I don't know where everything fits yet. I have to trust that God knows my future and I will be able to trust and hope in Him.

I will try to keep this up to date. They say writing is therapeutic. I guess I'll find out how true that is.