I have been meaning to write this now long overdue post about how I became a participant in the Parkinson's PPMI study. Finally - here it is!
https://www.michaeljfox.org/get-involved/parkinsons-progression-marker-initiative.html
Things happen in my life that many would call coincidences. But I know differently and that they are truly just God showing his love for me. I wrote about a few examples before:
http://cmfalling.blogspot.com/2011/06/strange-coincidences.html
I have had several more experiences specifically connected with my Parkinson's journey, and in fact just had another one recently that I will write about in the next post. I call these incidents "God's Tender Mercies" for I know that is what they are! I don't deserve them, yet he is merciful and continues to bless me anyways.
If you have followed this blog since the beginning or if you are one of my Daily Strength support group friends, you know already that I struggle with deciding to go on the meds. While each new drug recommendation sparks another struggle within me and probably always will, these struggles are nothing compared to the struggle I went through the first several months after being diagnosed and my neurologist recommended I start on a neuro protective drug. I wrote about some of my struggling thoughts here:
http://cmfalling.blogspot.com/2011/08/my-dilemma.html
That post was written in August 2011, I had already been struggling with the decision of that drug for 2 months previous. While most of those concerns were eventually resolved by my research and by my doctor, I still could not make the decision to go on the drug - even though everything pointed out that it would be a wise thing to do. I struggled, to the point of obsessing about it. I went back and forth with yes I would go on then quickly changing my mind to no I won't go on it - driving crazy my husband and everyone else who would listen with my wanting to discuss it over and over. This went on for even more months after I wrote the above post in August.
Finally, sometime the end of October or early November 2011, I came to the conclusion that I really should just go on the drug and quit worrying about it. So I sat down to the computer and wrote an email to my doctor to go ahead and write the prescription. I went to press the send key and I could not press it. A very real irrational uncomfortable feeling came over me and I literally could not send the email. I was beginning to wonder if I was nuts, or if it was just Parkinson's caused panic attacks, as I had experienced some of those over the past months. But this felt different.
A couple of nights later I was talking on the phone to my sister who is a nurse and described the dilemma of the drugs. After sharing the email experience, I said to her "i can't figure out if this is just an irrational Parkinson's freakout or if God is telling me for some reason not to go on the drug." She told me to stop worrying about it and my answer would come.
The very next day I was reading discussion posts on the Daily Strength site and there was a new post from a John Hopkins medical center nurse saying they were looking for new participants for their PPMI Parkinson's observational study. I had read about the study before and thought I should look into it further, but never did. One of the requirements for the study listed on this particular post was that the PD patient couldn't be on any Parkinson's drugs yet. (Yeah - you all know where this is going!) Shivers ran up my arm and I immediately called the number given in the post and left a message. Arita McCoy, the nurse, called me back almost immediately. We discussed the study, I asked her about the not being on any drugs requirement and when she told me it included the neuro protective drugs, I immediately felt calm and peaceful. The hair on my arms continued standing straight up as I realized I had been given my answer, for whatever reason, I was suppose to be in this study. So I quickly signed up and met their qualifications which allowed me to participate.
I can not begin to tell you the numerous benefits and wealth of information that I have received from the amazing doctors and nurses at John Hopkins medical center who are conducting this research. While some of the tests and procedures are not the least bit fun (including lumbar punctures), I have been given so much more from participating than I will ever be able to give by being a participant.
Those months of indecisive agonizing were awful, but I am slowly - oh so slowly - learning that I need to be more trusting, have more faith, and be more humble - for God is there for me and will guide me, comfort me, and teach me if I will only let Him. .
And now you know - the rest of the story!
