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....