My interpretation of JJ Heller's "Your Hands"

I'm tired....

I know - I know. It's been a LONG time. So here goes. This June I completed my first year after diagnosis. It was not fun. I took it pretty hard and I am still trying to come to grips with everything. I have continued to progress and am now on the "gold standard" for Parkinson's. The beginner stuff was no longer working for me. After beginning treatment, I finally started to feel almost "normal" for the first time in years. However, I already feel that it may be time to increase dosage again. It is very exhausting to have to take a pill just to get through the next few hours. All the time... For the rest of my life... If I miss a dose, my body quickly reminds me that it needs that little yellow pill to continue. I have had more freezing incidents. It's like every muscle in my body forgets what it is supposed to do and just stops. It is painful and annoying and frustrating.

We just spent a week as a family in Disneyland and Universal Studios Hollywood. Walking every day all day was nearly unbearable. It was quite embarrassing for me to be walking so slow that I couldn't keep up with my family while toddlers and old folks with walkers were passing me by like I was standing still. My legs are still tired. At one point, I even had a worker ask if I needed a wheelchair. I was almost back to my vehicle so I declined but it was a serious consideration near the end of the trip. I was not able to run and play and climb with my girls. I was able to endure the rides (even though I had an unpleasant reaction to the motion sickness medication I was prescribed) but I couldn't climb with them or explore caves or go across unstable bridges. There was one day I had to spend the afternoon napping and missed all the fun. What was supposed to be a short nap turned into 5 hours of sleep. All in all it was a good trip - we had lots of fun. But I missed out on more than I would have liked and I am still trying to recover and I fear that may take a while.

In a few weeks I will be going to Texas to spend some time with old friends and new ones. The first weekend will be the 15 year reunion for TAMS. I will see friends I have not seen in years. I really want to just enjoy the time, but I am afraid of how tired it may make me and how symptomatic I may be. Will I be able to get through the weekend without stumbling or falling or shaking uncontrollably or worse yet freezing? Will my friends freak out when I give them the list of what to do if I get stuck? Will they stare if I start trembling or shuffling my feet? Will they look at me with pity?

The next weekend is the Young Onset Parkinson's Conference. I am blessed to have my best friend going with me. There I will not have as many of the concerns as the first weekend and will be able to relax more knowing people there understand. I am looking forward to seeing friends there that I have met online. I went last year to Atlanta and it is so nice to have the instant camaraderie at an event like that. We know when to ask "have you taken your meds yet?" and understand that everyone is having similar struggles. I just hope they don't pull a silly stunt like they did last year and try to get a roomful of Parkinson patients to run across the floor playing a game and then see if they can pull off an African dance... Not a good idea. (Not to mention the fact that I obviously am too "white" to shake an African drum - "No girl, the 'black' way".)

I am looking forward to the trip and the special time I anticipate having with my friends - old and new.

My position on stem cell research

I generally try to stay out of these controversial topics and this will be my one and only post on this topic. However, I can no longer remain silent. You may disagree with me (and I know many of my friends on here that do) and that is fine but I need to let my voice be heard.

I will not accept any treatment obtained through embryonic stem cell research. Here is where I stand on the whole issue:

IVF is a miracle for those who need it. Do I think an infinite number of embryos should be created to have on "standby"? No. I believe as few as possible should be "made". If there are any "leftovers" that are not to be used by the biological parents, I believe they should be put up for adoption just like any other "unwanted" child. There are plenty of people who are unable to have children "created" from their own eggs or sperm. I believe this should be understood before any procedures are begun. If this is unacceptable, IVF should be removed from consideration. Only a minimal amount should be implanted. Should "too many" be viable, that is a risk that is part of the situation. We all take risks when we plan for a family (or engage in sexual relations outside of a loving marriage). No one knows if they will have a full term pregnancy or if the child will have problems as a child or as an adult. (my parents surely did not know I would have Young Onset Parkinson's Disease)

Do awful things happen? Yes, absolutely. Are children conceived through rape or incest? Unfortunately, yes. Should those innocent children be murdered because of someone else's crime? Absolutely no.

Do I believe in stem cell research? Yes - adult stem cells and umbilical stem cells are showing great promise. But I believe these "embryonic cells" are life and should not be destroyed for mine or anyone else's benefit. And no they should not be "thrown down the drain" either. And yes I am outraged that this does happen. There is no excuse for that. Before we "play God" ALL the consequences should be considered. Do I have all the answers to all the questions? No, but I do know life is life is life and in my mind there is no other way around it.



Like I said, this is my one and only post on this topic. You are free to disagree with me - that is your right, but I will do all I can to prevent the murder of innocent life. (And yes I do believe all those embryos are "life")

for more information, please see www.stemcellresearch.org

Please see their links to organizations that do research on stem cells without using human embryos.
www.jp2sri.org (general stem cell research)
www.hartmanfoundation.org (parkinson's specific research)

(Any negative or inflammatory comments will be immediately deleted. There are plenty of other places for you to share your opinion. This is just mine.)

An update coming soon...

So it's been awhile. I would write more but I'm working on getting over a cold that just doesn't want to go away. I'll try to update more later....

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.