Worth the Wait

May 16th, 2010 Posted in Misc
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My husband says that persistence pays off. I would have to agree.

The other day my phone rang. I answered it and the caller asked if I knew who I was speaking to. The voice was vaguely familiar, but I couldn’t place it.

“This is Dr. Santiago.”

Can you imagine my surprise? The elation taking place within my spirit? I was in shock. A very good shock.

I had located my fine doctor about two to three weeks ago, finding out that he will now be practicing in Arizona at the Muhammed Ali Parkinson’s Research Center. A bittersweet finding. Sweet because he’s in a place where his gifts can be used to their fullest and bitter because he’s so far away. But, I am determined to make it work (as is my husband). Why? It’s worth it to me.

Worth it to know he cares.

Worth it to have someone who knows my history.

Worth it to know he cares.

Worth it to know he takes his role in my care seriously.

Worth it to know he cares.

Worth it to know he keeps up on the latest research and advances.

Worth it to know he cares.

I know I reiterated ‘he cares’ more than I probably needed to or more than you wanted to hear it. But the fact is, it is so important to feel like your physician is more than just a professional who is overseeing your care. I’ve had ‘professional’ doctors oversee my care in many areas, and for the most part, I felt like they didn’t care at all. If you asked my fine doctor my husband’s name, he’d know it. If you asked him how many kids I have, he knows. If you asked him my fears, he knows them. He knows how I’m feeling before I tell him. He has taken the time to know.  Now, you may say, “That’s easy.  They shuffle through their notes before they enter the room to freshen up on the next patient.”  (Yes, doctors, we know you do ‘cuz we can hear you out there looking longer than it takes to review the b/p and weight stats.)

Not my fine doctor.  And I have listened to see if he does.  He removes the folder and immediately comes in.  He goes over the b/p with me as he pulls his stool in front of me.  He goes over my weight (unfortunately).  And then, in the course of the visit, you know what he does?  With no notes, no shuffling back to three years before, not looking at cheats he wrote on the palm of his hand, he asks…  “How’s Tamara doing?”

Tamara is my beautiful daughter who went with me once during the first year of my seeing my doctor.  That was over five years ago.  Then he asks the next question.

“How’s that little granddaughter doing?”

He asks if I’m still struggling with this or dealing with that.  He needs no notes.  And I am not special in this regard.  I can guarantee he does that with all his patients.

He isn’t superdoctor with super memory skills.  His advantage?  He cares.  Enough to know who his patients are.  Enough to get to know them and where they hurt not just physically, but emotionally as well.

So, I’ll be seeing my fine doctor once again in August.  Because it’s worth it to me.  Because he cares.

Thanks for the phone call, my fine doctor. 

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Why I’ll Wait For My Doctor

March 19th, 2010 Posted in Daily Walk with PD
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Last year, I lost someone in my life that I loved, admired, and adored.

My doctor.

Now, I know I’ve harped on this subject plenty of times, but I can assure you I’m not harping today and this post will not be one about wishing he was back, but rather – it’s about a discovery I made – in my brain, of all places.

As I’ve said before, my doctor (I still refer to him as ‘mine’, as – if God wills it, he’ll be my doctor again) was/is the best. If you question my authority on this subject – don’t. It’s just a plain Jane fact. No arguments allowed.

Now, this discovery will incorporate all neurologists who have become Movement Disorder Specialists – young and old, tall and short, round and skinny, blonde-headed or brown.

If you watch TV on Monday evenings, it’s more than likely that you’ve come across a show called ‘House’. It’s a show about a doctor (yes, another doctor show) who is basically, nothing short of a genius. His specialty is solving cases that the regular GP’er can’t even begin to figure out. He’s the Mayo Clinic doctor of all doctors. Rarely do any of his patients pass into the next life.

That’s the ‘job’ of most doctors, right? To determine the source of the symptoms, pinpoint the pain, find a cure for the cause. Most doctors watch their patients walk in, walk out, and don’t wonder when they’ll be meeting up with them again.

This is just not the case with Movement Disorder Specialists, which is why, after my epiphany moment; I now have an even greater respect for these people.

An oncologist has a tough job. That goes without saying. Yet, while they do see many patients breathe their last breath, they also have many patients under their care who are given a new lease on life. An orthopedist is fortunate to have the specialty of fixing up their patients and sending them on their way with say – a new knee. But a Movement Disorder Specialist? Have you ever thought about this? They chose to get into a specific field where they know that the patient referred to them to now be under their care, is another life they will have to, even under the best of care, watch deteriorate and/or eventually come to an end.

I know this is a difficult thought, but please bear with me. When I thought about my doctor (the infamous Dr. Anthony Santiago – superhero Movement Disorder Specialist of the northwest and beyond), I realized that he literally sees his goal as a physician, to try to give the best possible care to those who will most likely not get ‘better’, but rather – get worse with time.

The reason this hit me like it did is that these specialists choose to do this work. They choose to walk beside patients that they know can’t take a pill or undergo chemotherapy or radiation (not that it works for all cancer or other patients with life-threatening diseases) to see if their disease will be eradicated. Instead, an MDS operates with the knowledge that their main purpose is to try to give their patients the best quality of life they possibly can. (I hope this is making sense!)

I guess that’s just another reason Dr. S- was/is so great. You knew, (being his patient) his greatest concern was to make your life the best possible while he fought Little Monster with you. All to say, hats off once again – not just to Dr. Santiago but to all MDS’s out there who have a tough job of not only caring for us PD’ers. Thanks to all of you who care for us and do it so incredibly well.

We appreciate you.

Sherri

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Parkinson’s Disease and the ‘D’ Word

March 15th, 2010 Posted in Daily Walk with PD
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Many people don’t want to talk about it.  Fewer want to admit to it.  All would choose to live without it.  It’s the ‘D’ word – depression.

Much to my surprise, on my first visit to see my neurologist over five years ago, I was asked if I struggled with depression.  I could honestly answer ‘no’.  My doctor proceeded to tell me that depression was/is one of the first signs of Parkinson’s disease.  Today, however, if he were to ask me if I struggled with depression, I’d have to say ‘yes’.

I’ve had several people in my life very close to me who fight this disease – not PD, but depression.   Most of them try to hide the fact that they have it or the fact they struggle with it on a regular basis. We’ve come to believe that if we are battling the monster of depression, something must be wrong with us mentally.  We can’t control our emotions.  We’re going crazy.  Life becomes a journey of living live under an umbrella of black clouds and gray days.

I’ve never struggled with depression personally – until recently.   A few weeks ago, I thought perhaps I was just tired.  Parkinson’s disease can be so odd.  You hear about one person’s journey and it sounds nothing like your own.   I’ve heard PD labeled as a ‘designer’ disease, meaning that it affects each individual so… individually.  We all wear it differently.  One may shake from tremors and not have much else going on (though highly unlikely).  One may deal with excruciating pain that is hidden and unseen.  Another may struggle with many aspects of the disease all at once – speech, swallowing, shaking, pain, depression, sense of smell and more.  Yes, it is definitely a designer disease.

I realized I was battling depression one morning when I didn’t feel like getting out of bed.  I’ve heard that’s normal for someone who is depressed but it wasn’t normal for me.  Especially on a day when my granddaughter is expected to come.  Days with my little Boo are precious to me, but on this one day, even that fact wasn’t helping me to get up and get going.  However, there comes the point when reality gets in your face and drags you out of bed so that you can at least operate like a robot throughout the day.

As the day wore on, I thought about how hard it was to get out of bed that morning and what was wrong with me lately.  Then it hit me…  I have been working on a book about living with this disease and the fears we face because of it.  Doing something like that makes you face the realities of the disease and the many ‘what ifs’.  It also can make you feel as if you’re going to become useless, worthless, and burdensome.

Yes, that was how I began to feel.  But – when I realized what was going on, then I was able to do something about it.  I began telling myself the truth and quit listening to the lies.  Yes, I have Parkinson’s disease, but I am not useless.  Who else feeds the cat?  And I am not worthless – just ask God.  And burdensome?  Not yet.  Hopefully not ever.

Sometimes on the dark and cloudy days that we’ve allowed umbrellas to be over our heads so that we can’t look up, we need to leave the umbrella inside and go and jump in the puddles instead.  Get wet, look up, and let the rain pour down on us – literally (it’s quite fun).  We need to let go of the pride that holds us back, call a friend, and get out of the house.  Isolation breeds depression and if we’re spending a lot of time alone, it’s time to change the game plan.  If you’re feeling down in the dumps, do something constructive – take up painting, scrapbooking, photography, writing, dog walking, whittling – something to get your mind off your feelings and onto something good and healthy.

And, if you are having a difficult time dealing with depression and have PD (or don’t), talk to your neurologist (or doctor) about it.  That’s what they’re for – to make life a little easier in the midst of this disease.  Depression is nothing to be ashamed of, whether you have PD or not.  It’s only something to hide if you’re listening to the lies of reason instead of the truth that’s telling you it could be better if you’ll just ask for help.

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