Alamo Area Parkinson's Support Group

A Whole New Way To Be Wired

2011-04-30T12:56:00.002-05:00

My decision to have deep brain stimulation (DBS) surgery was not easy, but there's nothing easy about any of the elements of this disease for the person with Parkinson's (PWP) or their care partners, families, and friends. There are always tough decisions, trade-offs, and hard choices between unpleasant options.

For me, there were two facts to consider that confused the issue: the fact that I'm still very young (48 is young, isn't it?), and the fact that I have been diagnosed for such a short period of time; it's only been about two years since my initial diagnosis. Those two facts come up repeatedly in conversations about my decision to have the surgery. “REALLY? You're having brain surgery? On purpose? You look fine to me–why would you want to do that?”

The last comment is one that most PWPs must repeatedly address, even with family members or close friends. On some days, we do look and feel better than on others, and I think we're all grateful for those days. I'm still new enough at this that responding to those well–meaning comments is difficult. It doesn't seem right to say, “thanks very much for saying that; however, let's not forget that I'm not better, I'm not likely to get better, and tomorrow I'm going to look like hell again.” There's a very fine line between reminding people that this disease is variable, capricious, and still here, and just accepting a nice compliment and the good wishes and concerns that lie behind it at face value. It reminds me of the Saturday Night Live skits that featured Debbie Downer–she never had anything good to say. It tends to stifle the conversation when you feel the need to say, “Yes, it is an absolutely beautiful day, and I've never seen the sky so blue and the sun so bright. I have Parkinson's disease, you know.”

So, those two facts, coupled with the fact that sometimes I appear to be relatively unaffected by the disease, plagued me as I weighed the pros and cons, sifted through the mountains of available information, and talked to dozens of patients, doctors, experts of all types, family members, and friends. I am very much on the young side for having DBS surgery–as a matter of fact, one of my neurosurgeon's nursing staff happened to mention that I was the youngest person she had ever seen to have the surgery. In addition, I've only been diagnosed for a short time; many people who have had this disease for years are managing their symptoms and treatments well, and have no interest in or need for DBS.

I've mentioned my initial belief that DBS is a choice of last resort; when everything else stops working, you have the surgery. This perception is fundamentally wrong, and part of my decision-making process was to understand that. My neurosurgeon explained that DBS is for people who still benefit from medical treatments, but with unacceptable side effects. “Unacceptable” is different for everyone, and there's no checklist-oriented cut-and-dried approach to deciding when it's time. He told me I would know, and he was right–I do.

Although I have problems with dyskinesia, the sleep disturbances are the main factor driving me toward DBS. It's true that I arrived at this point relatively quickly; much more quickly than most DBS candidates do. However, as I've started to say more and more often, “it is what it is.” The plan is that DBS will eventually help me to reduce the amount of medication that I'm taking, which will reduce some of the more significant side effects, which in turn will help me sleep (and not just in the car driving to work in the morning).

The process is now in motion, and I'm past the first milestone. It was somewhat anticlimactic–a full anesthesia MRI (the last that I'll ever have–MRI machines and metallic objects embedded in your brain and chest apparently don't go together). I wish I could tell you more about it, but all I saw was happy smiling faces in the MRI room, the IV in my arm, and a chemically-induced black curtain that came down momentarily and then came up again in the recovery room, with the nurse asking me, “well, welcome back. How are you feeling?” All I could think of to say was, "I think I was abducted by aliens for a moment."

I experienced no ill effects and no post-anesthesia nausea (hard to believe coming from me, I know; once again, go figure). Best of all, they collected good data–that's a real compliment coming from an engineer. It's particularly important to me, because the map of my brain that the neurosurgeon obtained using this procedure will allow him to plan a very precise implantation path for the electrodes in the DBS system, avoiding some of my favorite parts of my brain and finishing in EXACTLY the right place in my subthalamic nucleus. I didn't even know I had a subthalamic nucleus until recently.

According to my neurosurgeon, DBS is really not a very difficult procedure. In his view, the key to success is to perform the procedure exactly the same way every time, with the same equipment and the same processes, in the same order, with the same team, carefully and without fanfare. He doesn't want to get famous, or to write a paper on a new process, or to try new equipment - he just wants every procedure he does to be done as well as he and his team can do it, with predictably excellent results. Coupled with his experience level (over 1000 successful implantations) this approach made my choice of surgeons easy.

Next up in my process is something called a neuropsychological exam. Some people are better candidates for DBS surgery than others, and one of the major contraindications for DBS is signs of dementia. The neuropsych exam will look for those signs, and also will give me a baseline of cognitive function, memory, coordination, and several other things. With this information in hand, we can compare the before with the after and see which symptoms improved and which did not.

The surgery is scheduled for June 9. It's a moderately lengthy procedure, perhaps 3 to 4 hours long, and I'll actually be awake for a significant portion of it. I've always heard the saying that the brain itself has no pain receptors; I think that's a fascinating concept. What concerns me more is that they have to get to the brain first–past experience with wildly pitched baseballs, tree branches, cave ceilings, and open kitchen cabinets makes me quite confident that my scalp and skull enjoy no such freedom from pain. I'm sure that the surgical team will have thought of that.

Here's what's going to happen, as I understand it. I'll arrive at the hospital bright and early on the 9th, and I'll receive a new look that I haven't had since I was a baby–I will have my head shaved. I can't recall ever having seen my own scalp before, except for brief periods in the Air Force when I was overenthusiastic at the barber shop. The surgical team will then install something called a “frame" - a metal ring that's actually screwed into the bone of my skull that will serve to keep my head completely still during the procedure. They'll then perform a CT scan to validate my alien-abduction MRI, as a double check that I haven't done something to change my brain since then, and to verify that the surgical plan is still correct.

I'll then proceed to the operating room, where the team will prepare me (liberal local anesthesia please), and then do those things that are needed to provide access to my brain (I'm being circumspect here so none of us passes out reading this, including me). At this point, all of the careful preparation and exact planning becomes very important–they'll implant two electrical leads in my brain, following a predetermined path and ending at a predetermined termination point. I'll be awake during this process, perhaps so I can provide color commentary and tell jokes. Feel free to send me jokes that are appropriate for this particular situation–I got nothin'.

To make sure that the electrodes are in the right place, the surgical team will measure electrical signals at various places, and do some stimulation to test the response. Once they determine that all is well and everything is where it should be, I get to go to sleep. I'm really looking forward to that part of this procedure.

When I wake up, they will have anchored the electrodes to plastic plugs in my skull connected to long electrical leads. Those leads will have been placed under the skin of my scalp, neck, and upper chest, and will terminate in a new battery pack and stimulation computer that will be implanted under the skin of my upper chest below my collar bone. The system is entirely internally contained - when my hair grows back and the incisions heal, the most you will be able to see is a slight bulge in my upper chest. I'll spend perhaps two weeks or a little more recovering from the procedure, and then after 6 to 8 weeks my neurologist will begin to program the device. When we get the programming right, I'll start experiencing the beneficial effects.

As someone who works with engineering and science, and as a self-proclaimed "geeky guy," this procedure fascinates me. I am amazed at how much DBS has improved in the 10 years since approval by the FDA for Parkinson's disease, and I'm optimistic that it's only going to get better. One of the significant benefits is that the system can be upgraded, and can even be removed if necessary.

My colleagues think this is a significant opportunity to push the boundaries of science and experiment a little with the man-machine interface. One of the types of work we do is to look at how complex technical systems can be made to do things their designers didn't intend (we don't use the term "hacker" - it's just rude, and inaccurate as well). We take our work seriously, and I have the sense some of my team may take it too seriously. I've learned to smile and nod at the comments about the "Six Million Dollar Man," questions like "so, will you be Borg after this? Will we be assimilated?" and even my new nickname: "One of One" (a play on "Seven of Nine," a half-robot/half-human character from one of the Star Trek series' - I think I mentioned we're all geeks, some more than others). However, I draw the line at questions like, "what did you say the control system signal looked like? Do you know anything about the effective range of control? What kind of processor is in the stimulation system? Do you mind dropping by the lab for a few minutes when the system is installed? We'd like to test a theory." Engineers are just hilarious, in an incomprehensible kind of way.

If you're interested in more information about deep brain stimulation, a good place to start is the Medtronic website at:

http://www.medtronic.com/our-therapies/neurostimulators-movement-disorders/index.htm

Medtronic manufactures the DBS system that I will receive, and they provide a comprehensive description of how it's implanted and how it works. The Mayo Clinic website is also an excellent resource at http://www.mayoclinic.org/deep-brain-stimulation/. Finally, the AAPSG website at http://www.aapsg.org includes a list of links to a variety of information sources. Those links also have information about deep brain stimulation.

On a different note, I'd like to remind everyone of the 5K/1K Walk/Run for the Cure for Parkinson's taking place on May 14, 2011 in McAllister Park, San Antonio, Texas. Proceeds from this fundraiser will benefit Parkinson's research and the search for a cure. I'd love to see you all there, but if you can't be there in person, you can still have an influence by donating to the cause. Go to http://www.aapsg.org and click on the “Donate Now!" link on the bottom left.

Next time I'll describe the neuropsych exam, and talk about the changes and challenges that those who are "wired" have to face. I welcome your feedback, either publicly as a comment to the blog or privately to my email address at seeNOSPAMking@aapsg.org. Replace the first word with the right letter, get rid of the spammy stuff, and there you have it. Bad guys everywhere - you gotta fight back :-).

Next Steps

2011-04-05T19:17:00.000-05:00

My long journey to a Parkinson's disease diagnosis was confusing and frustrating, but there was some comfort in having an answer. After years of wondering what was happening to me, I finally had a label and could develop a plan of attack. I was briefly relieved, until reality began to set in.

Dr. Elisabeth Kubler-Ross describes grieving as a five-stage process: denial, anger, bargaining, depression, and acceptance. I've been in all five of those places, sometimes all on the same day. It's not a steady progression, and I'm certainly not finished yet - I've really only just begun. Although Parkinson's disease tends to shorten expected lifespan slightly, it's not a fatal disease - many people with Parkinson's live long lives after diagnosis, with slow progression and years of good function. Unfortunately, although the speed of progression and the details are different for everyone, the direction and result is always the same.

With what I now know about this disease, I am amazed and awed by PWPs and their care partners, families, and friends who have been fighting back for decades against this slow thief of health and vitality. Parkinson's steals not only the ability to move and communicate effectively, but it also damages self-esteem, destroys relationships, halts promising careers in mid-stride, and sentences both PWPs and their ecosystems to a seemingly eternal cycle of medication, daily struggles with the basic activities of living, and a slow decline in spite of heroic efforts. A friend and fellow PWP once told me that Parkinson's is like, "being stuck on the railroad tracks in front of a slow-moving train - you know it's coming, but even though it takes years to get there, you can't get out of the way and you can't make it stop."

Since my diagnosis, I've worked to get the medications right and fought my way through debilitating side-effects just as every other PWP has at some point. I've lost friends I've known for years who just stopped responding to attempts at communication, and I've made many new friends in many places, including our AAPSG support groups (if you want to meet some really fascinating people who don't quit and who usually have a joke or story to tell, come to a support group. Sometimes the jokes are agonizingly bad, but we're all forgiving people). My family and I have also worked (and are still working) through the fear, uncertainty, and anxiety that comes with a diagnosis of a progressive, incurable illness. How long will I be able to continue working? What happens when I have to stop? How fast will the disease progress? How will our family change? Will we be OK?

The AAPSG, APDA, and other organizations can provide excellent resources, guidance, and referrals to help families answer these questions, but like the disease itself, the answers are different for everyone. In my family, we don't have these answers yet, and we're struggling to find them. However, what we do have is mutual love, commitment, and a dedication to finding the answers together. In this, I'm very fortunate.

It's become apparent over the last two years that I am particularly susceptible to side-effects from PD medications. I've described my problems with nausea (perhaps to the point that you're saying, "I GET it - stop, already."). I also have significant nighttime insomnia and daytime sleepiness, including sleep attacks from the dopamine agonist. Recently, I've begun experiencing other effects from the agonist (when you see a squirrel run across the living room floor and your cat on the couch doesn't move, that should tell you something). I also have the most well-equipped home theater and home automation system in the neighborhood, and I can't really tell if that's just because I like electronics and gadgets, or if Requip XL's notorious "compulsive behavior" side-effect is rearing its head. And, although it's a little unusual, I've begun having on-off problems and beginning-dose/end-dose dyskinesia from the levodopa.

With this spectrum of side-effects, increasing the dosage of my medications isn't an option. At this point, I can't go up in medication without more severe side-effects; I can't go down without being off most of the time. According to the advice of my neurologist, my neurosurgeon, and multiple alternate opinions, it's time to consider deep brain stimulation surgery (DBS).

I've only had a PD diagnosis for about two years, and I'm on the young side for having the surgery, so I've been resisting the idea for some time. When my neurologist first recommended it, I said, "You've got to be kidding - that's for late-stage Parkinson's, after everything else stops working, isn't it?" I apparently have a limitless capacity for being wrong, and I was this time, too - DBS actually works best for people who are still getting some benefit from medication, but perhaps with unacceptable side effects. It also seems to work best for people who are relatively early in the disease, who don't have other complications or significant cognitive impacts, and who are not falling often. Me, in other words.

So, after weighing the risk factors and evaluating the data (did I mention I'm an engineer?), I've decided to have DBS surgery in early June. Between now and then, I have a neuropsychological exam and a full-anesthesia MRI to do, and a few other things to get organized and put in order. We're talking brain surgery here - no matter how you look at it, there are risks. Even though the likely outcome will be very positive, my family and I have to prepare for all possibilities. This situation gives my typical approach of hoping for the best and preparing for the worst a whole new intensity.

Hope is good - it keeps you going when you might not otherwise. I'm hoping for the type of outcome I heard about from a new friend I met in Istanbul this month (thanks, Shelly and Warren :-), from a friend I met in DC last month (thanks, Greg:-), and from the experiences of people like Davis Phinney, the Tour de France cyclist who was brave enough to have his DBS surgery filmed for the benefit of our community. I have a great health care team, people I trust to give me advice, one of the most experienced neurosurgeons in the country, an outstanding neurologist who always tells me the truth (even if it stings a bit), and friends old and new that regularly bring tears to my eyes with their kindness and caring. I'm also surrounded by a loving family who are willing to do whatever it takes, even if we don't know what that means yet. With all that going for me, what's a little brain surgery?

So, onward through the fog. Next time - the lead-up and a description of the procedure itself.

The Search for Answers - "Be careful what you ask for..."

2011-03-22T22:27:00.006-05:00

In my last post, I talked about my initial diagnosis, and my reaction to a new medication. The dizziness eventually did depart, but the obvious therapeutic benefits never did arrive. After six weeks, I visited the neurologist again and reported the news. And over the next three months, so it went with Azilect, Sinemet 25/100, Sinemet CR, and Stalevo. As an added benefit, the levodopa drugs (Sinemet and Stalevo) caused violent nausea and vomiting within 20-30 minutes of every dose. Side effects were no problem – I had those by the truckload. But still no therapeutic benefit – I still had the same stiffness, slowness, unsteadiness, and lack of fine motor control that had brought me to this point to begin with.

After a very unpleasant trial period with Stalevo, I called the doctor’s office again and asked to speak to him. I needed information. The drugs don’t appear to be working; what does this mean? Is the diagnosis a mistake? Do I have a brain tumor after all, or do I just need to eat more green vegetables?

The doc called back quickly, and as I stood in the outside patio area of a Taco Cabana restaurant, he gave me his rundown.

1. I clearly had Parkinsonism. The physical symptoms were unmistakable; the cause was undetermined.
2. It didn’t appear that I was responding to medication – that was called drug-unresponsive Parkinsonism.
3. There were several things that could be the culprit. “Space-occupying defects” in my brain had been ruled out, as had several other odd possibilities such as normal pressure hydrocephalus.
4. There was something called “atypical Parkinsonism” that could be responsible. Only time would tell. We would have to wait.

New unfamiliar technical-sounding terms are almost irresistible to me, so I went to the Web again (I hardly remember anymore what it used to be like to use a library). This time, wanting to go upscale, I hit the Mayo Clinic website. I found new terms there like “corticobasal degeneration,” “multiple system atrophy,” and “progressive supranuclear palsy.” All these are atypical Parkinsonian syndromes that don’t respond to anti-Parkinson’s meds well or at all. And their common characteristic is a rapid degeneration of physical and mental function, ending in death.

I was stunned (again; you’d think I would be a little less shockable by this point). Only months ago I was happily unaware, spending time on the weekends with scuba classes, enjoying my family and my work, and living a relatively normal life. Today, I “would have to wait” to find out if I had a disease that would steal my health, my mind, my body, and then my life. I did the only thing I could think of to do – I sought another medical opinion.

I did some research to find out who I should see. There were multiple options, including road trips to the Mayo Clinic(s), Washington, Cleveland, Houston, Dallas, and many other places. There were excellent referrals right here in San Antonio, though, and I had learned enough to know I wanted to see a movement disorder specialist (a neurologist who is board-certified in movement disorders like Parkinson’s), so I made the appointment.

At my first visit with him, he listened patiently as I gave him a rundown on my life up to that point, and he asked a number of very pointed and probing questions about my previous drug challenge, my symptoms, and my history. He asked questions that I found a little strange, such as, “does your arm or hand ever do things on its own, or feel like it doesn’t belong to you?” and then administered another “hokey-pokey” exam, this one more comprehensive than any other. I walked up and down, tapped, dragged, clenched, and twisted as directed, wishing for a little music to make my timing better. He also snuck up behind me and pulled on my shoulders suddenly – I didn’t realize at the time that it was part of the exam, and just thought he had a unique way of interacting with patients.

We then sat down for a discussion. He was very clear, very straightforward, and very direct.

“Well. It’s clear to me that you have Parkinsonian symptoms, and they’re markedly asymmetric, which raises some questions. There are some possibilities we have to rule out, so here’s what we’re going to do…”

I left his office with an order for a SPECT brain imaging scan, an interesting specimen collection process to rule out Wilson’s disease (my refrigerator will never be the same), an additional blood test to eliminate several metabolic possibilities, and an extraordinarily detailed day-by-day plan for conducting a drug challenge with standard generic carbidopa-levodopa 25/100 on steadily increasing doses until I saw an effect. He was clear that, given my history, I would probably have nausea and vomiting problems from the carbidopa-levodopa, but that I should just bear it as well as I could in the interest of conducting an effective challenge.

He was absolutely right on all counts – the SPECT scan showed no brain blood flow abnormalities, the test for Wilson’s disease showed no excessive copper levels, and the other blood tests showed nothing more significant that a Vitamin D deficiency (which, according to some, is correlated with Parkinson's). All that remained was to judge my response to levodopa.

For some, levodopa is like flipping a switch – the effects are clear and obvious. For me, the effects were certainly clear and obvious, but the problem was that the only effect I saw was horrible nausea and vomiting after every dose. The doc added extra carbidopa to my daily regimen, which made a radical difference. Carbidopa keeps the levodopa from converting to dopamine prematurely in the body – when it does, it stimulates a region of the brain outside the blood-brain barrier called, unsurprisingly, the “vomiting center.” Go figure. I wasn’t getting enough carbidopa, which resulted in the predictable effects that I was experiencing.

As an interesting aside, a neurologist who came to speak at one of our support group meetings told a story about drug names. Apparently, for many of the drugs that we take, the name has significance. Since it was first used therapeutically, it’s been known that levodopa by itself causes violent nausea and vomiting. When it’s added to carbidopa, the combination has the brand name Sinemet. The doc pointed out that the name was composed of two parts–“sin,” which means “without,” and “emet,” which means, “to vomit.” Interesting, I thought; and even more interesting that it works for everyone but me.

After a long, careful increase in medication dosage until I reached 1200mg of levodopa (12 tablets of 25/100 mg carbidopa/levodopa per day), I saw my neurologist for another hokey-pokey exam.

His assessment – I was clearly much improved in motor function from the levodopa. He guessed that my previous violent reaction to the medication didn’t leave enough of it in my system to be effective. He also said that the more structured test approach to the drug challenge which gradually raised the medication to moderately high levels was much more effective for assessing my responsiveness.

The upshot of all this activity was that I apparently had “young-onset idiopathic drug-responsive Parkinson’s disease.” Nothing is ever sure in this new world I found myself in, but that probably meant I didn’t have PSP, CBD, MSA, or any of the other Parkinson’s Plus syndromes with the much more grim prognoses. Never able to leave well enough alone, though, I had to ask him, “what’s the possibility that this isn’t really even Parkinson’s? “

His response will stay with me for the rest of my life: “You need to come to terms with the fact that, if you don’t have Parkinson’s disease, the only other possibilities are much worse.” I had moved from being a normally healthy middle-aged man into a place where Parkinson’s disease was the best I could hope for. What was I supposed to do now?

Next time – family, friends, and colleagues: the ecosystem of the newly diagnosed PWP.

Additional note – On the advice of my neurologist and neurosurgeon, I’ve decided to have deep brain stimulation surgery. I’m young for it, but it makes sense, given where I am with the progression of the disease and the way I respond to medication. I’ll be writing about my journey with the DBS process over the course of the next several months, both before and after the surgery. I’d welcome your comments or observations –

So, What Happens Now?

2011-03-02T21:09:00.007-06:00

Last time, I described the long, crooked path I walked to finally arrive at an initial diagnosis. It was a slight relief to finally have a label for the things that had been happening to me, and as I was leaving the neurologist’s office from that momentous diagnostic visit clutching my little bag of Azilect samples, I remember thinking to myself, “Well. Parkinson’s disease. Maybe that’s not so bad. Michael J. Fox has Parkinson’s, and look how cool he is. And if I only have to take one of these pills a day, I can do that. Yeah – Parkinson’s; at least it’s not a brain tumor.”

My wife was out of the country on an extended academic trip to Africa, so I had time, I told myself, to do a little research and find out how I was going to manage this thing. One little white pill a day and some minor lifestyle changes – no problem, I figured. I’d done harder things before.

My sense of relief lasted until I got home and sat down in front of the computer. I mentally flipped a coin and it came up “Wikipedia,” so off I went, typed in “Parkinson’s disease,” and started reading.

“Neurological disorder…progressive…degenerative…incurable…cardinal symptoms…tremor…bradykinesia…akinesia…cogwheel rigidity…balance disturbances…autonomic nervous system…substantia nigra…dopamine deficiency…striatum…executive function…cognition…depression…apathy…digestive disturbances…sexual function…oily skin…keratitis…levodopa…carbidopa…COM-T…MAO-B…rasagiline…selegilene…entacapone…dopamine agonist…dyskinesia…amantadine…artane…dystonia…side effects…compulsive behavior…hallucinations…vomiting…blood-brain barrier…on-off…dose failure…aspiration pneumonia…disorientation…Apokyn…freezing…Lewy bodies…dementia…deep brain stimulation…isolation…fear…loneliness…quality of life…”

I went from web site to web site for hours, scarcely believing what I was reading. I finally stepped away from that session with the computer after about 10 hours, with a myriad of new terms and concepts buzzing my head and a deep sense of unreality. How could this be? What had I done wrong? I was even surer that this must be a mistake – Parkinson’s disease was serious, and except for minor illnesses and middle age, I was healthy. This can’t be right.

I had received direction from the neurologist to “titrate up” (the first but not last time I heard that term) by taking ½ of a 1mg tablet of Azilect each day for a week, and then taking a full tablet every day for four weeks. Then I should call him back and we’d see what’s what. Simple and easy, I thought, and this certainly will show I don’t have this thing.

I didn’t have a clue what to expect, so I took my first ½ tab with a mix of trepidation and anticipation. I half-expected my left hand to just suddenly start working again, and for the whole day after that first medication, I wandered around the house, periodically sitting at the computer and typing a few lines as a test to see if things had changed. No changes; no effect.

The doctor had given me a warning about possible side effects – he said some people were susceptible to disturbances from Azilect, and I should let him know if they were too bad. With that in mind, I took the first dose on a Saturday morning, with the thought that if there were going to be side effects, I’d see them Saturday or Sunday, and would be on top of it by the time work rolled around on Monday. Reasonable, logical, and wrong.

All day Saturday, I felt fine (no changes in what I had begun to think of as “my symptoms,” though). Sunday I repeated the process – still no changes in the hand and arm, but I went to bed feeling just a little out of sorts on Sunday night.

On Monday morning, the alarm went off at the normal time, and I got up out of bed and promptly fell down as the room turned on its side. I had read that dizziness and disorientation were possible side effects, but this wasn’t dizziness – this was a carnival Tilt-a-Whirl ride missing a few bolts in strategic places. I decided to hang out on the bedroom floor for a few minutes and think this through.

I discovered that the disorientation would fade a bit if I kept my head still and moved very slowly. So, looking like Al Gore on a bad day, I made my way to the couch to rest up from the process of getting out of bed. After a few minutes, the dizziness faded somewhat and I was able to eat something. I made a couple of telephone calls – one to my office to let them know I would be working from home, and then to the neurologist to ask, “so, what is THIS nonsense all about?”

He called back later that day, and it was a short conversation:

Me: “I’m very dizzy.”

Doc: “Yes. That’s one of the potential side-effects.”

Me: “I’m sorry, I wasn’t clear. I’m VERY dizzy.”

Doc: “Yes, we discussed this. You may experience some unpleasant side effects at first. They will likely fade over time. It’s important that we determine how well you respond to medication.”

Me: “Dizzy. Very dizzy.”

Doc: “Is there anything else? No? Feel free to call anytime.”

I had started down the path that all PWPs walk at some point: the balancing act between the therapeutic benefits of various treatments and the unavoidable side-effects that, at times, can be worse than the disease. And this was just the first few days of a simple drug challenge to see how I reacted.

Next time - theres a reason it's called "Sinemet"

The Crooked Path – My PD Diagnosis Story

2011-02-03T23:45:00.003-06:00

As I mentioned in my first blog entry and in the newsletter, we’ve all got stories to tell. I’ve come to learn that the story of my diagnosis process for PD is typical, especially for young-onset PWPs. It might have been nice to know that during the seven years that it took to finally arrive at the answer, but it seems that often a diagnosis of PD makes sense only in retrospect – from where I am now I can look into my past, and armed with a knowledge of the signs and symptoms of Parkinson’s, I can say, “oh, ok, so that’s what was happening.”

My crooked journey began so gradually that I have a hard time pinpointing a specific time or event as “the beginning.” I was an avid skier and scuba diver, and as I began to get a little older I had a tendency to forget I wasn’t 18 anymore. I had the normal aches and pains of a man approaching middle age and pretending that he isn’t, and I tended to discount those pains. However, about six or seven years ago, I started to notice a pain in my left shoulder, elbow, and wrist never seemed to go away. I dismissed it as muscle strain from over-enthusiastic pole-planting on the ski slopes or carrying scuba tanks, but was a bit concerned that it didn’t improve, even with rest or over-the-counter painkillers. I was busy with work and family, though, and continued to ignore the pain – it was irritating, but not debilitating.

I began to notice other things over the next year or two. I found that my left hand and arm sometimes felt stiff for no apparent reason. While driving, I had the odd sensation of not being able to find a comfortable position for my left arm; it wasn’t exactly painful, just irritating and distracting. I also began to notice that, because of the stiffness and rigidity in my forearm, the little finger and ring finger on my left hand would sometimes just “lock up”, and I’d be unable to bend them. If I forced them, they would finally give with an audible crack and a spike of pain. They say that ”if it hurts when you do that, then don’t do that,” so once again I just tried to ignore it and attribute it to advancing age and overuse. However, I finally began to become concerned, and decided to go see my family doctor about it.

Going to the doctor is not among my favorite things to do, so perhaps six months passed before I made the appointment and went in for a checkup. In that six months, I noticed still other unusual physical issues – I began to have difficulty tying my necktie, and I noticed that my left thumb and fingers would sometimes twitch and shake, especially in the mornings or on my drive into work. I finally went to see our family doctor, and by that time, I had a significant concern that something was wrong. As it turned out, there was, but not at all what I thought.

My doctor’s appointment was actually for an annual physical (which I hadn’t done in three years), and the doctor went through the normal process of poking and prodding, lab tests and EKGs, and medical history. Toward the end of the office visit, I mentioned almost as an afterthought, “oh, I’ve also got this weird thing going on with my left hand and arm – it hurts and feels stiff, and my hand shakes sometimes. And when I try to move it fast like this –“ (as I rapidly clenched and unclenched my right hand), “I just kinda lose control of it.” As I demonstrated, my left hand began to jerk and twitch, and I couldn’t force it into a rapid, smooth clenching movement. It was almost amusing – it looked like I was holding a hand-shaped fish that was trying hard to get away from me. “So, what do you think THAT’s all about?”

We discussed several possibilities, all having to do with orthopedic or joint problems. I had injured my neck in college, and I have a minor amount of injury induced arthritis there – the doctor suspected that. In addition, I had injured my shoulder in a skiing accident (I wish I could claim that it was something spectacular like jumping out of a helicopter onto an untracked snowfield; the truth is that I fell over in the liftline), so that was a potential culprit as well. The doc gave me a referral to see an orthopedic surgeon about my neck and shoulder, talked to me about referred pain and the wide-ranging effects of neck and shoulder injuries, and off I went to get it checked out.

I ended up seeing several orthopedic surgeons for my neck, shoulder, elbow, and hand (I had no idea that they would be different people – the level of specialization is amazing), received many cortisone injections, had a series of MRIs and x-rays, and finally was referred to a neurologist for an electromyelogram. This joyful procedure involves electricity and needles, and even though it was done by a very pleasant and competent neurologist in a modern facility, I kept imagining I heard screams from the dungeon.

The EMG turned out to be “unremarkable.” I discussed the results with orthopedic surgeon #4, and asked what I should do next. He told me he thought I had cubital tunnel syndrome (a nerve problem in the elbow that’s similar to carpal tunnel syndrome in the wrist/hand), and that I would improve with a type of surgery to reposition a major nerve to reduce irritation and pressure. By this time, I was feeling a little irritation and pressure myself, and I asked if the surgery would address the shaking and stiffness as well. He said, “well, I really don’t know what that’s about, but I think you should consider the surgery.”

I still didn’t know what was really going on, but I had the sense that elbow surgery wasn’t the answer. By this time, other weird symptoms had begun to emerge. I noticed that I had stopped swinging my left arm when I walked, which I attributed to the supposed shoulder injury. And on a business trip with a colleague, as we were walking back to the hotel from dinner, he asked me, “why are you limping? Overdo it at the gym?” I hadn’t really noticed, but I had begun to walk with an uneven gait, and to drag my left leg slightly. I also noticed that my left hip had begun to ache like my left arm.

Even as all these physical signs began to emerge, I had a tendency to explain them away individually – the shoulder was from the ski injury, the neck was from the college injury, the tingling and clumsiness in my left hand was due to nerve damage from either the neck or shoulder, the elbow pain was from carrying scuba tanks for a class (I was a scuba divemaster by this time) , the leg pain was from muscle strain at the gym or maybe from the new shoes that didn’t quite fit…and on and on.

Finally, my wife suggested (as wives do) that I go see an internal medicine specialist. Her recommendation to me was that I stop seeing specialists about supposed self-diagnosed problems, but that I let a broad-based physician look at me from a whole-person perspective. I was reminded yet again that my wife is much smarter than me, and I forget that at my peril.

The internist ran me through a series of detailed tests, and conducted a physical exam that included what I would later recognize as the neurological “hokey-pokey” exam. You know the one – tap your fingers, turn your hands, tap your heels, put your left leg in, take your left leg out… He also arranged for an MRI of my brain, since, as he put it, “with your symptoms, a brain tumor is always a possibility and needs to be ruled out.”

Brain tumor? Brain tumor?? Elbow surgery isn’t looking so bad after all – let’s go back to that. I spent an hour in the tiny, noisy tube, and collected my MRI films and x-rays when they were ready. The internist had arranged an appointment with a neurologist to discuss the imaging tests, and so on July 7, 2009, about 7 years after I first noticed the persistent ache in my left arm, I met with the neurologist.

As it turned out, it was the same neurologist who had done my medieval torture test (the needles and electricity). We reminisced, and he spent some time looking at the brain images and pronounced them “unremarkable.” I thought that was a good thing. Then he ran me through a much more comprehensive “hokey pokey” neurological exam, which took ten to fifteen minutes. Then I asked The Question.

“So, what do you think is going on here?” I wasn’t sure what I expected to hear, but it certainly wasn’t what he said.

“I’m sorry, but your symptoms, tests, and medical history indicate parkinsonism, most likely idiopathic Parkinson’s disease. We’ll need to do more tests, but I’m fairly confident that’s what it is.”

My first thought wasn’t the most complex one I’ve ever had – it was something like, “Naaaah. Can’t be. Too young.” I raised several objections, which he patiently addressed:

- “I’m too young.“ Parkinson’s affects people of all ages, although it’s more common after age 60. I likely had something called young-onset PD.
- “It’s only on one side.” Parkinson’s starts that way, and for some people stays that way.
- “I don’t shake all that much. Isn’t Parkinson’s about tremors?” Not every person with Parkinson’s has a significant tremor, especially in young-onset cases. Most will eventually develop at least some tremor (mine has gotten worse in the last two years).

He talked with me about my objections and concerns, and then told me he wanted to start me on a medication to verify that I was dealing with Parkinson’s disease, in something called a “drug challenge.” At that point, I heard the word “Sinemet” for the first time, not realizing what a big part of my life it was to become.

Looking back, the crooked path that I followed and the symptoms I experienced (and others that I had but didn’t realize were associated with PD) are all very common. In the words of a movement disorder specialist I saw in Houston for what would turn out to be a fourth opinion, I am a textbook example of young-onset Parkinson’s disease. It’s almost impossible to see it while it’s happening, but in retrospect it fits together like a puzzle.

I have all four of the cardinal motor symptoms of PD – tremor, bradykinesia (slowness in movement), rigidity, and balance problems (also called postural instability). However, a diagnosis doesn’t require all four. In addition, I have other motor and non-motor symptoms that are a part of PD that I didn’t associate until after the diagnosis. Some of them are unlovely and a bit difficult to talk about, so I’ll spare you the details (come to one of our support groups and I’ll talk your ear off). Somewhere along the line, however, I lost most of my sense of smell – I used to be an enjoyer of a nice glass of wine, and over the years I lost interest, because I could no longer smell or taste it. Much of the sense of taste is actually smell, and a very common Parkinson’s symptom (often one of the first) is loss of the ability to smell.

My path was convoluted and frustrating for me, but not at all unusual. PD is sometimes difficult to diagnose, especially in younger people, since the symptoms can be subtle and gradual and there are many other things that can cause similar effects. In addition, doctors have a saying that I’ve heard a lot in the last couple of years: “When you hear hoofbeats, think horses and not zebras.” PD is something of a zebra, and is unusual enough in a younger patient to not be an immediate conclusion. I think that’s why I saw so many doctors, including my own family physician, without arriving at a diagnosis for so long.

That’s the end of one part of the story, but the beginning of another. In a future blog entry, I’ll talk about the first year following diagnosis, and dealing with the shock, disbelief, outrage, fear and depression that follows the diagnosis of a degenerative, incurable neurological disease. However, I’ll also talk about new friends and acquaintances, new sources of support, and a growing sense of mission.

What’s your story?

A Message from the President of the Board of Directors for AAPSG - Living with Parkinson's

2011-01-11T11:12:00.000-06:00

My name is Corey King, and I’m fortunate to have just been elected president of the board of directors for the AAPSG. I’m very excited to be part of this organization, and to work with you all to help ease the burden and find the cure for Parkinson’s disease.

I’m a Texas native and I’ve lived in San Antonio for the last 16 years, following a 10-year career as an Air Force officer. My family has roots here in south Texas; both my children grew up and graduated from high school here, and my wife teaches in the public school system here. Although we’ve lived in many places as a former military family, we all call San Antonio home. I manage an engineering organization at a non-profit research and development institute on the west side of town (not the one with the monkeys, the other one), and I’m very pleased to have this opportunity to support the Parkinson’s community in south Texas. Our focus is on outreach, advocacy, education, fundraising, and enabling the many support groups in our region that serve people with PD and their care partners.

I also have a more immediate, personal reason for being involved – I was diagnosed with young-onset Parkinson’s disease about 18 months ago. I’ve experienced first-hand the disbelief, anger, fear, and confusion that a PD diagnosis can bring, and I’ve also experienced the sense of community and mutual support that AAPSG support groups can provide. I began attending the Young Onset Support Group shortly after being diagnosed, and the friends I’ve made through shared experience have made a significant difference in my life. AAPSG support groups are not only a source of information about this insidious and debilitating disease, but they help remind people with Parkinson’s and their families, friends, and loved ones that we are not alone in fighting back.

I hope to be able to share information with you through this blog about the triumphs and challenges of living with and managing Parkinson’s, and to help put a face on this disease. It’s my face, but also the face of a 24-year old mountain climber I met at a PD conference in Atlanta, an 89-year old great-grandmother who just wanted to know what her medications were for, a middle-aged business owner whose plans for the future are being radically altered by this unwelcome guest, and all the others of the more than 1.5 million people in the U.S. alone that fight this disease every day. As a chapter of the American Parkinson Disease Association (APDA), the AAPSG is giving people weapons for the fight, and working toward the day when Parkinson’s can be identified early, treated, and cured. I’m honored to be a part of this work.

Ease the Burden, Find a Cure: Fundraising, A Call To Action

2010-04-23T15:50:00.000-05:00

Written by: Stephen Chavez, AAPSG Chairman of Publicity

On May 22, AAPSG will hold its annual 5k fun run and walk-a-thon. Last year we had over 120 register and participate in the morning's activities. This year we are making a call to action! We are asking for each person that registers to ask your friends and co-workers for a donation. If you can't walk or run, make a pledge on our Web site, www.aapsg.org. All proceeds benefit finding a cure for Parkinson's Disease.

Here is your challenge, if you choose to accept it:

Dianne Johnson RN, who is an Advisor to the AAPSG Board, has single handedly raised over $13,000 for the upcoming run! Who can come close to Dianne?

April is Parkinson's Disease Awareness Month

2010-04-05T14:29:00.001-05:00

For the first time in history Congress has recognized April as National Parksinon's Disease Awareness Month! We want to thank Congress for recognizing the need for Parkinson's support in America. With an estimated 1.5 million Americans living with Parkinson's Congress' announcement shows they are ready to support finding a cure for Parkinson's.

In San Antonio, at 2:00 p.m., Tuesday, April 6, at the Bob Ross Senior Services Center (2219 Babcock Rd) the Alamo Area Parkinson's Support Group will hold a press conference to announce San Antonio's recognition of Parkinson's Disease Awareness month. Thanks to Mayor Julian Castro for signing a proclamation making April Parkinson's Disease Awareness month.

Look forward to spreading the word and increasing the awareness of Parkinson's disease in San Antonio.

Welcome to the Alamo Area Parkinson's Support Group Blog

2010-02-26T16:46:00.000-06:00

Thank you for taking an interest in the Alamo Area Parkinson's Support Group. This blog will serve as an a way for our organization to get the latest info about Parkinson's Disease and fundraising events.

Stay tuned for the latest info and please visit our Web site or email us for more info on what we do for the Parkinson's Community in San Antonio, Texas.

www.aapsg.org
210-450-0551

Regards,

Stephen Chavez
Board Member
Chairman of Publicity