Heaven’s Gift Re-Given

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.

Update on Judy by Judy… and A Friend Named Tom

Hi everyone!!!!

Maybe some of you who follow this blog are wondering, “Why hasn’t Judy told about climbing the mountain yet?” or “What about ‘da Coat–we hear there are some changes happening? Well, I have no excuse except that it is taking me longer to figure out just what is most important to tell you about and how to go about it. So I’ll try writing about something else. It is no less significant and in many ways of thinking about it, I wish I would not feel so compelled to go where the rest of this writing will lead me to look at and share with you.

If you have read much of my writings before, you probably have concluded that I’m trying  to make the best of this situation that I live in with Parkinson’s disease. And as part of that, and as part of who I was for 40 years before I was diagnosed with PD, I am typically a optimistic person (or so I like to think). And for this reason, I believe I intentionally want to write about things that don’t dwell on the ‘dark side’ of PD (I’m getting carried away with the Star Wars theme, just because one person told me I was a Jedi in their way of thinking….see there I go again…the good thinkin’), But even the Jedi’s must face a dark enemy.

I will be the first to tell you that I think I have had many good things come from having Parkinson’s disease (just go back and read some of my posts here, and Sherri’s too to see). And recently I have been involved in an awesome event (More to come on Mt. Washington and The Army of Change, soon…I promise) and the ongoing saga of ‘da Coat that I had and used to bring some personal awareness to others about PD. But even Judy with PD has to face and discuss the stagerring impact that PD can have on one’s life.

So I hope I can express what is on my heart and mind and you not think I’m giving in or giving up. But I sit and remember last Monday afternoon, as I returned from Nashville and a visit to the PD movement disorder doctor I see there twice a year, a phone call I got. A dear man’s sister (the man had PD and was in our local support group) called to tell me her brother had died. She was brief and had to go quickly to phone some others and take some calls. Her brother is Tom. I don’t remember how old he is, but my friend Peggy and I had visited him within the last month in the hospital where he had some gastro-related problems. Not only did he have to suffer from that, he had to suffer severe Parkinson’s symptoms particular to him because he could not keep down his medications. I’m not sure, but I would say his body suffered a set-back from all this and just could not fully recover. When I called to tell Peggy the news of his passing, she told me she had been at the hospital just hours before to visit him. She said his lungs were full of fluid. I’m not sure Parkinson’s killed him, but I have to believe the accumulated toll if it and his other recent medical problems made his body less than adequate to fight increasing medical problems.

As I sit here and think of Tom Smith’s life and his battle with Parkinson’s, I also think of several others in my local support group who have passed on since I have become involved there in the last 6 years. Yes, many of them were elderly. Not all died from direct complications from PD, but some have. I can think of about one a year, out of a group of 50 or so who have PD in our group, who have died. I can think of several who can no longer get out and attempt to come to meetings. And who knows how many are out in the community where I live who live in silence about their PD and how it has changed their lives.

I want to tell you a little bit more about Tom, because… if for no other reason, he had determined deep within his heart that he was not gonna let PD rob him of the joy of life. He proudly told Peggy and I how he had turned a corner with his PD. He called PD ‘the monkey on my back’. Tom always invited everyone in the support group to come out to his place and fish in one of his 3 ponds. I never went fishing at his place, but earlier this summer, Peggy and I ventured out in the beautiful east TN hills to Unicoi and to the restaurant and store Tom had purchased and started as a business to keep him moving and ‘the monkey’ off his back. Tom told us “A year ago I was in the nursing home due to PD and now look at me!” We went into his new restaurant and chatted with him and ordered some food. Tom had already eaten, but he intented to stay with us and share more of the ‘good things’ that were happening. When our food arrived I somehow got the honor of blessing the food. When I said “Amen”, Tom continued and briefly said a few things. I say this being somewhat unsure of the rest of his prayer after hearing him say “God, please don’t let Parkinson’s get my friends, Peggy and Judy, down.” How Peggy and I both kept from filling our plates with tears I will never know. We spoke of his sweet prayer in the car on the way back home.

Tom graciously insisted we follow him over to his place, so being good friends we went. That visit is worth a whole other story. But I’ll just tell you this….when and if I get to that same point in life….oh heck, to be honest, I’d like to have Tom’s attitude now. He was recounting some of his work days, his accomplishments, his hopes and his desire to help others. He also clued us in on a ‘concoction’ he made on his basement that he felt was instrumental in his new effort to keep “that PD monkey” off his back and from keeping him down. And he graciously offered us a few ounces each in a cup from the cupboard upstairs. I only drank it when I saw Peggy give the look of ‘it can’t kill us’ and she downed her dose first. Tom said it was a mix of several fruit juices. He took great delight in sharing it and I was honored to partake, and I was happy that my response of declining ‘seconds’ was not met with dismay!

I know for myself and many others living with PD that we need to revel in the good days. Those days often turn into a few good hours or minutes a day. And it seems that time comes much sooner than we anticipate. It becomes so very hard to reveal in such fleating time on your own. Those times are when we need a ‘lil help from our friends.

I used to throw out this little saying that I thought I had coined….”I will endure for a cure”. In these days following my mother’s death, I have experienced an alarming increase in my ‘off-times’ (when meds just don’t work like they have and the PD becomes a monkey on our back and we shake more or we can hardly move) and I sometimes wonder : “Will I be able to climb that mountain terrain as confidently as Enzo says I can? Will I believe and last till a cure happens?” More days now after 8 years of PD, than ever before ….some doubts slip in and bring me down. But I thank God for a family, and for many friends, and an awesome support group who seem to know just what I need to turn that attitude around!

Besides having that, the greatest thing we can do is to help fund research for a cure. If you want to know how, email us and we would be glad to send you links for online donations or suggestions for other means of support.

Oh, and by the way,…. I made it to the top!!!!!!!!!!!!! 6,288ft high in New Hampshire on a rock hill called MT Washington….with some help from angels and friends on July 31, 2010!

Judy aka in10city

Parkinson’s Journey Update, Stardate 8-1-2010

Seems we’ve been gone a while… I think we’re back.

I think it started when Judy lost her mom. She was busy with all that a tragedy like that entails – details for services, in-town guests, dealing with grief. She still is trudging her way through that sorrow. She will be returning home to Tennessee tomorrow after making an epic climb up Mt. Washington in New Hampshire.

Some of you are aware of the Regulars and their quest to end Alzheimer’s and Parkinson’s Disease by bringing awareness of these chronic diseases by way of climbing mountains. Those of us who couldn’t make it to the climb, for whatever reason, were there in spirit and praying for the safety of those who did. Knowing Judy, we’ll have a photo recap soon. Until then, she will be having a great week entertaining and being entertained by Jeanette, who will be flying back to TN with her to play for a week.

As I was saying, I think our absence began when Judy’s mom passed away. Judy is the first friend I’ve had to lost a parent and it got me pretty somber and deep in thought over many and various things. I also got my medicine out of whack, and that made for some very long, down days. Boy—depression is the pits with a capital ‘P’.

There were days when I wanted to just climb back in bed and sleep ‘til it had passed. The problem was, it felt like it would never pass. I am happy to report, it has passed and I am awaiting the opportunity to see my doctor and get back on a good, steady path.

Meanwhile, the tremors have worsened, my balance has worsened, it’s spreading to my left side and other stuff is going on, but my outlook is good. I take one day at a time.

I visited my in-laws the first of the summer and that was followed by a trip with my son and daughter in-law (and of course, Boo), up to Idaho where I spent, basically, one day before going to my mom and dad’s for almost two weeks.

While in Idaho, I stayed with my daughter in-law’s parents, who happen to be dear friends. While there (which happened to be Fourth of July weekend), we took in the annual parade and enjoyed a barbeque. In between the festivities, I made two trips to the hospital to visit another dear friend whose six year-old son was on his fifth day there, having just been diagnosed with childhood diabetes. After spending some time with her, I went upstairs (it might have been downstairs) and checked on another dear friend whose grandson had been in an accident, and as a result, just had surgery to fix a collapsed lung.

On the morning after Independence Day, I met up with my parents in Sandpoint (north of Coeur d’Alene) and went to spend time with them in Montana before everyone else arrived four days later. We played Hearts each night for seven days. [The scores are not important for this update.]

While there, Grammie and Boo shared a room and were awakened each morning at 5:30 to the train choo-chooing across the river. Boo enjoyed that much more than Grammie. Grammie preferred the afternoon trains. It’s hard to stay up late playing card games and then be awakened at 5:30 the next morning by a train whistle. Unless you’re two.

Also while there, we were also able to celebrate my mom’s 75th birthday, complete with birthday hats for all.

I was feeling good while there and was actually able to help my mom and dad a lot with the mowing and yard stuff and they were deeply grateful, as my mom has had to pick up the load since my dad’s back surgery in late December. I am happy to report, however, that since we all left, he has been able to do more. Perhaps we inspired him. Perhaps we made him crazy and he figures if he starts doing it again (the mowing, the watering, etc.), we won’t come back. Ain’t gonna happen…

Next week Ken and I will be making another trek back to Santa Cruz to help out with a few maintenance things for my in-laws and hopefully see a couple friends. Last trip we had the blessing of going down and seeing Tamara for one day. It was a short trip but a wonderful visit.

Since being at home, the zucchini has started producing, tomatoes are ripening, strawberries are sweetening, flowers are blooming and going to seed, we’re spending a great deal of time sweating (90’s-105 degrees), or shall I say ‘glowing’. No, sweating is definitely more appropriate. Gardening has always been my joy, my therapy, my passion. However (and this added to the aforementioned depression), I can no longer do it for more than 30 minute increments due to the pain. What a pain!

I also had a nice surprise waiting for me when I got home—I’m in a book. One of my stories (true story) was accepted by Guideposts and can be found in the newly published hardbound copy of ‘In Times of Need’, page 74, titled “Angels Wear White Shoes”. Too cool. For those who might get it—yes, I had permission granted by my son to have it published—just in case you’re wondering. It’s part of series of books on the different aspects of prayer. Good stuff.

So, all this to say, there are plenty of good reasons Parkinson’s Journey has been silent. We are coming back, however. Meanwhile, check out the comments on the Haloperidol article—it’s worth your time and just might save a life—yours.

Until the next post, which will hopefully be tomorrow, I’ll leave you with these thoughts from this morning’s message at church…

If you truly wish to be free, you must forgive. Forgive everyone who has hurt you. Forgive yourself. Let go of the garbage that keeps you bound to bitterness. Let go, forgive and move on.

It’s not so easy to do, but so worth it once it’s been done. It also happens to be what my book is about and yes, to all those who keep asking so diligently, it’s almost ready to send off. My next project… to finish the book I’ve just about got done on the fears of Parkinson’s disease. It ended up taking a whole different path than I expected. A good path.

I hope this update finds you traveling your journey well. Leave a comment and let me know how you’re doing, what’s new and/or anything you want to share with your other PD friends. To those who have offered encouragement, support and hope during this time, a big hug and a bigger thank you to you all. Your kind words have been taken to heart and made a difference.