A wasted snow day! How sad!

My boss told us yesterday that if it's snowing today he was going to close the office.  It did snow, not that bad, so I thought maybe I would go in to work anyways and get caught up while it was quiet.  Hubby had to go in to work early this morning for something very important (not), but said he would come home around noon.  So I decided not to go to work and spend the day with him instead.

Did some laundry, got caught up on some of favorite blogs and Internet sites, read, watched some TV, and waited.  No Hubby!  I waited and waited and waited some more.  Took a nap and piddled away the rest of the afternoon.  Still no Hubby!   Finally at 7:30 p.m. he showed up (his normal work day time to come home). 

Such a waste of a perfectly good snow day!  :(

At least I had a relaxing (not to mention very non-productive) day.

One of God's Tender Mercies - Finding the PPMI study!

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!  

   

Happy 2013 - already?

Another year finished and a new one rapidly approaching!
Gee - I was just getting use to writing 2012. 

Happy New Year Everyone! 



May this one go by a little slower, please!!!

Family Traditions passed down

Tonight we sat around the beautifully decorated Christmas tree, the children in their new Christmas p.j' s and the fire crackling in the fireplace.  The children were antsy with excitement, it is Christmas Eve after all.  We had a full day of playing games and baking cookies, including the peanut butter balls recipe my husband's mother passed to us.  Our tummys we're stuffed, the dishes we're done and lovingly we gathered together in their family room while my son read the Christmas story from the New Testament, just as his father did when my son was a child, and just as his grandfather's did when hubby and I were children.  My heart was full, my eyes brimmed with tears threatening to spill as I watched my child lead his young family in some of the same activities that we did with him and his siblings.  He is a man now with little ones of his own.  All of our children are grown and tonight they all sit with their families carrying on many of the same traditions.  We are not with them physically, but we are with them in spirit and love.  I am proud and I am blessed!

Merry Christmas!

Blindsided

Just when I think I have everything under control (a joke indeed), I suddenly get blindsided. The other day while driving to work, I was channel surfing the radio. One channel was giving their headline topics that were planned for the next hour. My ears perked up when I heard the word "Parkinson's". You know - I can't even tell you the topic. Strangely, something in my mind triggered and all I could think was "Damn it! I have Parkinson's Disease - I really have it!!" Then the tears started flowing...to my chagrin. 

"What is wrong with you - seriously???" I thought. "You've known you have it for awhile now- get a grip!!!" "Yeah, but I really really DO have it and it's not going away!!", I answered myself while wiping the trickling tears from my cheeks. "Crap - where is this all coming from and why now? Good grief girl - get a grip, you're almost at work." I managed to pull myself together and arrived at work with red eyes and an "allergies are acting up"excuse.

I don't get it! What's up with this blindsided feeling? It's not like I don't think about Parkinson's all of the time as it is these days. So how is it that it can just hit me hard out of the blue like that? :(

And really - in comparison to all the horrible and truly sad things going on in the world today - my having Parkinson's is nothing.  So...Self - are you listening?  You are hereby given notice, if you need to have a cry, at least do it for something more than hearing the word Parkinson's on the radio.  Have I made myself clear?

Where can I Turn for Peace?

While snuggling with my 2 year old grandson during a much needed nap (for both of us), I looked at his sweet little face and wondered what I would do if this precious little guy's life was violently taken. I can not even comprehend the pain of the many families in Connecticut during this very tragic and heart breaking time.

I dedicate this song to all those in Connecticut and throughout the world who are suffering - for whatever reasons.

JOHN 14:27 -  "Peace I leave with you, My peace I give to you; not as the world gives do I give to you. Let not your heart be troubled, neither let it be afraid."

In Paradise - Bucket List #1

I have died and gone to paradise!!!

Actually, I am very much alive in paradise.   Hubby and I decided to start checking items off our bucket list (the things we want to do or see before we kick the bucket).   We don't plan on kicking the bucket soon, but since we have a long list, we decided to get busy crossing some of them off while we are still young enough to enjoy them to the fullest extent. 

So... here I sit...on a balcony...gazing at the ocean...in paradise...and enjoying every moment!
Now I can cross off #1 on our list.  (Except, I think we have already decided to add it back on as a "do it again" item).  This list may never get shorter.  lol

Can you guess where I am?
You want some hints?
OK...
1. There are beaches everywhere. In fact we can go in any direction and find a beach within an hour.
2. It's a very popular place and probably on many people's bucket lists.
3. There is a historical site here from WWII (that hubby turned into a full long day tour).
4. The fresh pineapple here is amazing.

Yup - you guessed it - I am in HAWAII. And it's just as wonderful and as beautiful as I thought it would be.

 

Aloha!!

 

(Sunset beach)