Parkinson's Journey

The verdict has been handed over and it’s final… I am blessed.

Ken (my husband, for those of you who don’t know his name) and I returned from visiting his mom and dad about a week and a half ago, that right after returning from visiting my mom and dad in Montana two weeks before and that right after spending a week again at Ken’s mom and dad’s.

It felt good to be home.

And then the phone rang.

But I didn’t hear it. So, the woman who called left a message.

Her name was Liz. What can I say? She spoke the words I have long-waited to hear since April 29, 2009.

I am calling for your wonderful doctor to make an appointment for you to see him. Please call me back at this number. And, of course she left that number. And, of course I called.

Now, I bet my favorite garden flowers that it is not every day you long to hear those words. In fact, I bet most people would cringe to hear those words. Not me. For instance, take the adjective that she chose to use to describe my doctor.

Wonderful. May I point out that she’s known him only a couple months—at the most—and she’s already referring to him as ‘wonderful’? I didn’t even have to coach her on that. She just figured it out all on her own. Not hard to do, I must add.

And the word wonderful puts it oh-so-lightly.

Though I’ve talked of my doctor before, let me bring you up to date.

For those who aren’t aware, my fine doctor was not able to, for reasons we shall not disclose (for they would serve no earthly good other than to do nothing more than to‘re’-irritate those of us who had formerly been under his care in eastern Washington), was told that his practice as a Movement Disorder Specialist would no longer be able to function, due to lack of funding by its ‘headship’. So, if you understood that very long run-on sentence, you understand that over 600 patients lost care under one of the finest neurologists this side of the world (and most likely the world in its entirety—just ask Liz).

Upon returning her call, I discovered he was back in practice, ready to roll and take patients once more. Problem? I live in Oregon. He’s now in Arizona. You know what my fine hus-a-bind did? He said to find out when he was going to begin taking appointments. So I did. Mind you – this is Thursday and Liz answers my question with, ‘Monday’. So my hus-a-bind says, take it. So I submitted to his authority. I figured I would panic later.

Which I did.

Over the cost. Over the distance. Over the company we had staying with us. Over all the things to do on my ‘to do’ list which would not get done were I to leave.

I scrapped the to-do list. Our company would be leaving the same morning. We could make it in time and God would work out the little things like providing the means to get us there. But… I began to feel selfish—

How could I justify spending the money we don’t have to see him in Arizona? I told my husband that it was too far. I felt guilty. You know what he said? He said he wasn’t too far and we were going. That was that. I didn’t argue.

So, Saturday morning, our company left at 9 a.m. and we left at 9:10 a.m. We didn’t even stop at the donut shop. Ken didn’t even stop for coffee ‘til Yreka—45 minutes south. That, I tell you, is a great sacrifice.

We hit Santa Cruz in time for dinner with my in-laws and stayed the night. They wished us well before going to bed, as they had chosen to stay asleep when we left at four the next morning.

We drove until six that evening when we finally reached Phoenix, Arizona.

The next day, Monday to be exact, we found a Starbucks and had breakfast. It was already 102 degrees at 10 a.m. Finally, at 12:30 p.m. and 115 degrees, we walked into the air conditioned Muhammad Ali Parkinson’s Research Center and I filled out all that fun paperwork that you get to fill out when you’ve never been there before.

Shortly afterward, we were ushered to the blood pressure machine and the weight machine. Fun stuff.

Then ushered into the exam room, we were told that he would be in shortly. He was true to form. I waited no longer than five minutes (as usual) and he walked through the doorway (with short hair!). He set his doctor bag on the exam table (which he never made use of, nor did he make we wear a gown as I had on one occasion been made to do by another neurologist that went to an entirely different neurology school altogether, where they’re trained to make their patients feel very uncomfortable [my apologies for another run-on] ). Reaching past me, he shook my husband’s hand and afterward, opened his arms for a hug, which I gladly gave him and you know what settled in my heart right then?

HOPE.

A hope I hadn’t had in over a year.

I knew before I left there that day that my meds would be brought up to date. I knew my exam would be thorough and professional and be completed without the necessity of a backless gown. I knew he would ask things I would want answered but would forget to ask. I knew that from this day forward, at least for now, I would be back on track and under someone’s care who knew what compassion was made of and viewed his care for his patients as a high calling and not a job. I knew this was a gift from God.

And, I was right.

He did the normal PD exam. You PD’ers know the drill. The touching your nose, tap your fingers, stroll down the hall and let’s see if your arm sways drill.

Then onto filling out the numbers, adjusting the dosages of my drugs and asking those questions I forget to bring up or feel they’re too ignorant to ask. He made me feel like I’m not going crazy—again.

He makes you feel normal while you sit there and shake as if you had just put your finger into an electrical outlet. He offers sympathy for the physical pain and understands what it’s like. He encouraged me to no end. He asked about my granddaughter. He asked about my kids. He had no helps to prompt him on their names. He remembered them. Again.

Two and a half hours later, we were done. For the time being. Eight or so weeks from now, I’ll be back down there to begin prepping for the DBS procedure that we started a year and a half ago. Before we left, he introduced us to a woman who operates the resource division of the center, who I’ll talk more about later and another hug before he was off to his next appointment.

I tell you all of this for two reasons…

God is good and gives us what we need. He knew better than anyone how much I needed my doctor back. God gave me a gift over five years ago and had asked for it back last year. I cried. I grieved over that loss but two days ago, He handed it back and I accepted it, with a heart of thanksgiving.

The second reason I tell you all of this? This gift is too good—too valuable—to not share. Doctor’s of such caliber are few and far between.

If you need a Movement Disorder Specialist you can trust completely, one who listens with understanding and whose middle names are compassion, care, and kindness—if you are willing and can make the trip—call and see if he has an appointment open. I can guarantee that you will have no regrets. However, I can’t guarantee that he’ll have an opening. If he can’t get you in, I’m sure the other physicians in his group will be just about as good or he wouldn’t be practicing there with them. Just ask Liz (see below)—she’ll know. After all, she saw that my doctor is wonderful and I didn’t even have to say a word.

*Dr. Santiago is now at The Muhammad Ali Parkinson’s Resource Center in Phoenix, Arizona. If you’d like to make an appointment, you can call wonderful Liz at (602) 406-6103.