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

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.

I would love to give credit for this post, but I can’t identify who wrote it. It appeared in this months Northwest Parkinson’s Foundation newsletter.  Enjoy!

My Parkinsons’ Disease Diary

OK, we already know that caffeine is supposedly neuroprotective and has a role in preventing Parkinson’s disease. I’ve been drinking coffee since I was 14. I have Parkinson’s.

We already know that nicotine is supposedly neuroprotective and has a role in preventing Parkinson’s disease. I’ve been a cigar smoker since I was 17. I have Parkinson’s.

Here’s a NEW reason why I can’t possibly have PD.

People who regularly take the over-the-counter painkiller ibuprofen may have a lower risk of getting Parkinson’s disease, a new study says. Researchers from the Harvard School of Public Health studied more than 136,000 people over six years and asked them about their use of aspirin, ibuprofen and acetaminophen, which are all classified as non-steroid anti-inflammatory drugs, or NSAIDs.

During the study, 293 people developed Parkinson’s disease. That’s 0.2 percent of the people. The researchers said in a news release [that people who took] ibuprofen were 40 percent less likely to develop Parkinson’s disease than people who didn’t [take it]. Also, people who took higher amounts of ibuprofen were less likely to develop Parkinson’s disease than people who took smaller amounts of the drug. The results were the same regardless of age, smoking and caffeine intake, they said.

I’ve been a regular taker of ibuprofen since my late 20s when I first developed arthritis in one of my knees. So, if this is all true…

I can’t POSSIBLY have Parkinson’s disease.

So, what the heck is my neurologist talking about?

I have a new doctor. No, I didn’t dump mine and contend for another. As most of you know, mine lost his practice because of lack of funds, and cutting back on Medicare closed the doors. I can say with certainty that he was most likely the best in the west.

A patient never waited more than ten minutes, tops. His nurse was the best. He spent time with you as if you were all that mattered on his list of patients for that day. You knew he cared and could understand first hand what you were dealing with, having a similar physical fight of his own to deal with. He explained things in such a way so that you felt educated when leaving and could understand yourself what was going on inside of you. He was compassionate and so kind. And he’s not there anymore.

So, I have a new doctor. And while he was ‘okay’, the difference between the old and new was blaring. This new doctor (new to me but near retirement) was kind, smiled at the right times and all the rest, but he was not Dr. Anthony Santiago, MD. MDS. VIP. Didn’t even come close.

Today’s doctor wasn’t bad – he just wasn’t Dr. Santiago. I didn’t know him and he didn’t know me. I am quite confident that I am not going to enjoy these ‘new’ visits, unlike those I had with Dr. S- who always had a smile, a laugh, a genuine concern for his patients. And, I NEVER had to strip down to my skivvies for an exam. What is up with that?

Survey: How common is that (for PD patient exams)? I’ve been to three other neurologists and have never had to do that. (Leave a comment, please.) Weird.

I came home and cried. I just want Dr. Santiago back but I know I have to face this. Problem is – I don’t want to.

Meanwhile, another reason I want my doctor back is for another situation the doctors are looking at. They’re wondering whether the lupus that they thought was a brain tumor and then MS and then ruled it all out by mere lack of evidence and then thought perhaps it was the PD starting in my early 30’s instead of 2004 – well now they’re back to looking at lupus since my ANA is off the charts. I’m curious, however, to find out what it is and if that’s what’s causing so much of the pain. Time will tell.

Until then, we are promised today only and I am so grateful I know Jesus and the unrelenting fact that we don’t go through anything alone.

A friend so timely emailed a link to a beautiful song today. It was waiting in my inbox when I arrived home after my appointment. I clicked on it and listened. God is sovereign and knows just what we need, just when we need it. I hope you’ll listen to it and be as blessed.

http://www.youtube.com/watch?v=diUhGip85U8

Are you tired of the cold northwest dumping more than snow on you? Awaiting you is a warmer yet wet little area of the northwest not commonly mentioned.While browsing the internet two days ago, I came across a phenomenal breakthrough in opportunities to fit your specialty.

The Best Job in the World

By clicking on the above link, you will be connected directly to the site where awaiting you is an opening needing the greatest neurologist in the world who also specializes in movement disorders, among other specialties.

Let’s take a quick look at the magnitude of this opportunity, as stated in the job description:

Premier southwest Oregon private practice is currently scheduling interviews for a board-certified / board-eligible Neurologist.

You will have the opportunity to sub-specialize in the following areas (fellowship training preferred): Cerebrovascular Disease/Stroke, EEG/EMG, Epilepsy, Movement Disorders, Multiple Sclerosis, Neurophysiology, Sleep Disorders, Pain or Pediatrics.

-Enjoy a competitive starting salary, comprehensive benefits, pension plan, and partnership track when you join this dynamic clinic (Please note they said ‘dynamic’ – I didn’t have to entice you with big words)
-Be busy from day one (I will be your first patient to guarantee this benefit!)
-Large catchment area of over 600,000 offering a solid patient base (I can also guarantee a solid patient base as Parkinson’s Journey has several of your past patients patiently waiting to hear that you’re not too far away from landing nearby, and ready, if need be, to welcome you at the newly renovated Rogue Valley International Airport, with two baggage turnstiles and all on one convenient level!)
-Well-established physician referral network (I’m not sure how I can guarantee this one.)
-Collegial practice environment (I can guarantee this, as the university is so close and think of all the young minds you could mentor.)
-Terrific work-life balance (I can guarantee this by stating that your drive to work will not be anywhere near what you had to drive to get to Spokane / Liberty Lake – unless of course you find a home that far out again!)

The Medford Neurological & Spine Clinic has a 44-year history of offering comprehensive neurological services. As the only full-service clinic in the surrounding area, our clinic staffs both neurologists and neurosurgeons and specializes in adult and pediatric neurology, electro-diagnostic studies, stealth frameless CT- / MRI-guided cranial surgery, skull base surgery, microsurgical spinal surgery, transphenoidal adenomectomy and stereotactic radiosurgery consultations. (Isn’t that just so exciting?!!!)

Would you consider joining our team? Apply today! (Please!!!)

If the above weren’t enough to entice you, get your wife and read on (I will highlight the strong points for you):

Medford, Oregon is surrounded by beautiful mountains and offers moderate temperatures year-round. (Consider the lack of snow shoveling you’ll have to do!) You will appreciate our outdoor recreation, such as golf, mountain biking, fishing, boating and skiing, as well as enjoy our first-class day spas, outdoor concerts, award-winning theatre performances, and monthly festivals. Medford, Oregon offers affordable luxury homes, excellent public and private schools, and LOW PROPERTY TAXES; plus there is NO SALES TAX in the state of Oregon! And, for those who enjoy the beach, the Pacific coast is a short 2.5 hour drive from Medford. Come home to Medford! Apply today!

And now, if that still hasn’t convinced you, consider these pros (cons are of no concern here):

~ Gardening in Medford cannot be compared to anywhere else on earth. Prize winning pumpkins, world famous pears and more await the avid gardener and his/her spouse.

~ Cultural activities are as diverse as the world famous Ashland Shakespeare Festival or the Jackson County Draft Horse Pull.

~ Guided tours of Harry and David, where free samples of raspberry shortbread cookies are handed out when the tour ends.

~ Holiday events galore to welcome the Christmas season and more – Gingerbread House Festival, Ashland Christmas Parade with the spikey head snowmen and fun beyond belief.

~ Farmer’s Market through the summer months with fresh fruits and veggies. Dogs have been banned which takes away the fear of being devoured while shopping.

~ Discounts at the supermarket Friday mornings on old breads and meats.

~ Nearby and historical Jacksonville offers a peaceful atmosphere and the Britt Festival with world famous musical artists such as James Taylor.

Now, some may think I’m being selfish and that I just want my doctor back (which I cannot deny as being true and don’t relish the thought of anyone else messing with my brain), but really I’m just worried about you not having the opportunity to touch other’s lives with your calling. At the very least, with all attempts of humor set aside, I hope you know just how much you are missed.

Sherri

Often when you read about those who are suffering with Parkinson’s disease, the article refers to those who are a tad bit older, over 60 usually.   We don’t often see articles, information, etc. on people under 50 who are fighting this little monster (often harder because it tends to hit the younger crowd a bit harder).

Thought you all might enjoy this article…

The Young Faces of Parkinson’s Disease

Enjoy!

Sherri

Several years back, there was an extremely popular software game called Where In the World Is Carmen Sandiego? Originally the game focused on teaching geography and history. It had a catchy name. It was educational. It became popular.

Today, I’d like to introduce you to ‘our version’ of Where In the World Is Carmen Sandiego.

Many of you know that a couple months ago, my doctor and his staff were elected by their overseers at Deaconess Hospital in Spokane, WA, to be shut down, due to lack of funding from Medicare. Over 800 patients who were cared for by this outstanding specialist were left hanging. Due to legalities, he and his staff were unable to comment or answer questions regarding his future plans.

So, here’s what I want to do…

I am in limbo. I don’t know one neurosurgeon from the next in the area I now live in. I know I am not the only one in this predicament. There are many people seeking a quality neurologist and/or movement disorder specialist. Scanning the columns in the phone book doesn’t give you an idea of whether the doctor your finger lands on is quality or not.

If you currently see a neurologist and/or a movement disorder specialist that you consider quality, how about sharing? Please use the comment box and leave their name and city/state and a couple sentences as to why you’d recommend this physician.

People move, doctors leave, etc. and to find a new specialist can be frustrating. I will compile a list of physicians that you think give great care to their patients who continue to battle a movement disorder or neurological disease.

And, if anyone knows where in the world Dr. Anthony Santiago is now practicing – inquiring minds want to know.

Leave information in the comment box. Please include doctor’s name, city and state (complete address would be better, including phone number), reason why you would recommend this physician.

Thanks for the input!

Sherri

I’d like to recommend Dr Anthony Santiago. He is both a Neurologist and Movement Disorder Specialist practicing in Washington, inthe Liberty Lake area. He diagnosed me with Parkinsonism several years ago. He tested me and then diagnosed me for over 45 minutes. He had my records from all the doctors I had seen previously and it seemed as we were talking that in some aspects of my medical history he knew me better than myself. Together with my wife, we really appreciated the thoroughness and patience he displayed while together with us. I wouldn’t hesitate to recommend him to anyone looking for a neurologist.
Tony Mack

Post note: Thank you, Mr. Mack for your recommendation. I would have to agree with you, as my neurologist is also Dr. Santiago and although not an expert in neurologists, I’d say he has to be the best!

Do you have a specialist that you’d recommend from personal experience? Let us know by sending their name, why you’d recommend them and their location to: sherriwoodbridge@hotmail.com

INLAND NORTHWEST AREA
Anthony J. Santiago , Movement Disorder Specialist
Liberty Lake/Spokane Washington area
Recommendation submitted by S. Woodbridge

“Dr. Santiago, a Movement Disorder Specialist. As a doctor, is the utmost in professionalism and yet practices with compassion and respect for his patients. He becomes a friend while maintaining a doctor/patient relationship. Very knowledgeable in Movement Disorders, he knows first hand the illnesses associated with that division of neurology.

Dr. Santiago will not make you feel rushed. He is thorough and concise, patient and understanding. I highly recommend him if you are in the Inland Northwest area and in need of a doctor specializing in Movement Disorders.”

WESTERN WASHINGTON

After 11 years and bad experiences with doctors, I finally got fed up and went in search of a doctor and or a place I could get good and caring help. I was just getting worse and my doctor seemed to not really be interested in anything I had to say.

…I live in Western Washington State. …It’s been a whole new world for me. I found the Booth Gardner Parkinson Care Center at Evergreen Medical Center in Kirkland, Washington.

They have three MDS doctors there, all of which are highly qualified. They have Physical Therapy, Speech Therapy, Occupational Therapy, and Neuropsychologists all in one place. They are a real team working together to be sure you are getting the best possible care. …they talk to each other and listen to each other – it’s amazing! And with all of this, you feel like and know they really care about each and every patient.

From day one, the minute you arrive you feel welcome and like a part of a special family. They are just one terrific group of caring people.

To give you an example of the quality of doctors they have, I’ll tell you about mine. Her name is Pinky Agarwal. She is a Board Certified Neurologist, fellowship-trained in movement disorders at The Neurological Institute at Columbia Presbyterian Medical Center in New York. She is interested and has experience with most movement disorder diseases. …she has been the principal investigator on numerous clinical trials and was previously Directer of Clinical Research at The Colorado Neurological Institute. And the other two doctors that are there are just as well qualified, …plus they are all real people that you can talk to, ask questions and actually get an answer you can understand.

For anyone in Western Washington, who is looking for good doctors caring for Parkinson’s Disease, check this place out. I can’t recommend them highly enough. They have helped me so much and have given me new hope, I will never be able to thank them enough!!!!

You can reach them by phone at i-425-899-3123 or at their web site at: www.evergreenhealthcare.org/neurosciences/parkinson

Hope this will help someone out there as much as it has helped me.

Submitted by: Joanee63, October 21, 2007
Thank you, Joanee!!!

Tags: MovementDisorder Specialists, Booth Gardner Parkinson Care Center, Anthony J. Santiago