Shawn McPike Life. Activated. (A blog) from the perspective of a geo-nerd.

How to Save a Life with Parkinson’s Disease

Shawn — Mon, 30 Apr 2012 19:52:11 +0000

I was officially diagnosed with Parkinson’s Disease when in 2004. At thirty-four, the thought that I could have such a disease was the furthest thing from my mind. I thought of it mainly as an “old person’s disease” even though the only ones I knew with it were Muhammad Ali, Pope John Paul II and Michael J. Fox. But there I sat there at the neurologist’s office, waiting to see if the L-dopamine that he had me take would take away my symptoms, thus confirming that it was Parkinson’s.

“Fifteen minutes,” I thought to myself. “Fifteen minutes and my life could be forever changed.”

Two years prior I had noticed what I now consider the very first symptom. I was a web designer and developer and typed all the time and loved it. But one day I noticed the pinky finger on my right hand twitching ever so slightly. It would continue to do so periodically and got worse over time. Soon my entire right hand would seem to tire and get stiff, making it very difficult to type, write or do any other fine motor skills with my right hand. Naturally, given my occupation I assumed that I was experiencing Carpal Tunnel Syndrome, but was ruled out after a battery of tests and I was diagnosed with Dystonia, a non-progressive neurological movement disorder and prescribed Requip to treat it. But the medicine didn’t improve my hand and it began to cause acute abdomen pain.

When a thing like this happens to you, sometimes your mind focuses on the worst things it could be. This is what I did, as I spent hours upon hours online reading about what my symptoms could mean. Wilson’s Disease, ALS, Multiple System Atrophy and Multiple Sclerocis were some of my top candidates as well as Parkinson’s Disease.

“But I am so young,” I thought. “Can’t be Parkinson’s.”

So there I sat waiting at the new neurologist’s office to see the results of taking this L-dopamine pill was. The doctor suggested that it might be Parkinsons when I walked in and that taking the L-dopamine was the single best test for final diagnosis. If I felt better and could move my hand as a result, then it was PD. If not, it would do nothing.

Fast forward to today, eight years after learning I would have to deal with this disease the rest of my life. In those eight years of living with YOPD (Young Onset Parkinson’s Disease), for which only 5% of people with PD get it before the age of 50, there have been many highs and lows. I experienced some dreadful side effects of medications like Mirapex, and saw the disease continue to progress over time as I needed more and more medication to maintain the same level. I made the decision to have DBS STN surgery, which resulted in two neurostimulators implanted in my brain and a battery powering them in my chest (see Blog posts on this topic earlier in this site.)

Two years having passed since the DBS STN surgery on my left-side brain (right side body), I am doing and feeling much better. The amount of medication I take daily is less than it was two years ago and my symptoms are managed the best they have been in a long time. I feel the best I have felt within at least the last five years. Its been a hard road and getting the settings dialed in to what works best for your brain… well there is no other way to put it other than it SUCKS. Especially for a person with YOPD who has a job, every setting change that fails to make you better and instead makes you worse is really tough to deal with physically and mentally. When I feel bad, my speech is slurred and my ability to type/write is nonexistent, so in those instances, it is very easy to retract into my shell and not communicate.

To give an idea of how much I am helped by the DBS STN and medications, without them I can type only 7 words per minute (yes SEVEN!) As I type this blog, I am typing 50-70 words per minute. And now I have a new goal. Parkinson’s is a progressive disease with no cure, which means that my dexterity will continue to diminish over time. But we have a piano (which was my father-in-laws before he passed) and I cannot play the piano at all. And I do mean AT ALL, not even a little bit. But I am determined to learn it and play a song by the Fray called “How to Save a Life” to show that even if I can’t physically beat this disease, it will not beat me. And for me, the surgery was the right call and has literally saved my life.

Is Your Diversity Social?

Shawn — Fri, 20 Apr 2012 14:14:36 +0000

My name is Shawn McPike and i have Young Onset Parkinson’s Disease.

There are many laws/protections for employees in the workplace today such as the Americans with Disabilities Act but do these protections extend to your companies social environment? Is your company missing out on a engagement opportunity to demonstrate their diversity and values by giving voices to an increasingly diverse crowd?

Many organizations today pick social and PR/Comm voices from the vast talent pool of qualified candidates yet they often do not hold to the same diversity standards that they employ in the rest of their organization. Yet some of these same companies spend public relations or marketing capital to position themselves as supporting the same values or causes that the talent they exclude from communications positions have firsthand knowledge of.

Support of charities such as LiveStrong, Breast or other Cancers, Autism, AIDS or Parkinson’s Disease is something almost every large enterprise participates in. They support them because they believe in them, but also because it makes them look more compassionate and thus enhances their brand image.

Companies could reap benefits on many levels if they not by put those capable of typing 800 messages a day in social/communications positions, but also those with ALS, Multiple Sclerosis or Parkinson’s who’s volume of produced content may not be as high but the depth of their engagement may resonate much better with a larger demographic. In addition, your company would be actively demonstrating their support for that charity or cause and that they not only throw money and visibility at the cause, but they walk the walk and let their diverse talent talk their talk.

There certainly are many challenges as well as additional opportunities. Please share your own experience and thoughts. I’d love to hear them.

Sometimes Big Things Come in Big Packages

Shawn — Sun, 01 Apr 2012 04:23:05 +0000

Most days are indistinguishable from the next, merely a mishmash of flashy commercials and product placement mixed with the constant drone of priorities around work, family and yourself. And if you’re lucky, at the end of it all, the day might allow you enough time to look back and admire or admonish that which you accomplished, with the proviso that you start all over again tomorrow. But every once in a while, a moment occurs which makes that particular day unlike any other. Of course we all know the main days that fall in this category such as marrying the girl of your dreams, having your first child, and finally paying off those student loans.

But even more compelling and memorable are the moments that come out of nowhere; the seemingly innocuous occurrences that, upon later reflection, serve as life-changing milestones. Such was a day for my wife and I four years ago. Married for two years after having met online, we walked the aisles of our local pet superstore looking for dog food, when I said something that would change our future in ways we could scarcely imagine.

“Hey honey, want to look at the cats?”

In hindsight, there was no good reason for me to ask such a question. My wife was allergic to cats, and when I say allergic, I mean really allergic. So allergic in fact that her eye swelled shut from exposure to my long-haired cat Kenya while we were dating. She tried to play it off as if it wasn’t that bad, but I was fairly certain she wanted to retain the use of both eyes while we dated. This was one of the first moments where I realized how much she truly loved me. So when we were married, a good friend of mine took Kenya and we lived animal free – for a while.

So here we were in the pet store, looking at an assorted display of chew toys for our two-year-old dog Roscoe, when I popped the question. At the time, I more than half expected her to respond by calling my mental state into question. But to my surprise, and hers too, she responded with a look of glee.
“Sure – sounds fun. What could be the harm?”

Indeed.

We approached the cat room, which was a small rectangular room on the far side of the store. Contained within it were approximately a dozen stacked cages each containing one to two cats. A glass wall allowed you to get a good view of the cats from outside the room. For my wife, this was ideal as it allowed her to avoid all the allergy-inducing dander yet still be in close proximity to the assortment of furry felines.

Coincidentally, that day a local shelter was having an adoption drive at the pet store as well. They had dogs and cats and many, many tiny kittens at their station situated near the front entrance of the store, a crowd of people naturally began to gather there. However, back in the glassed-in cat area, where there were many older and abandoned cats, my wife and I stood alone.

“These cats have no shot today, with those kittens up there,” I said, nodding in the direction the burgeoning crowd in the front of the store.

“Oh look, an orange cat! I love orange cats.” Before the potential ramifications could even register, my wife had darted inside the cat room. I quickly glanced around to see if they sold eye patches nearby but saw none. I then did what every husband does at some point for their wives – I followed her, knowing that the outcome was going to be the antithesis of everything we believed upon entering the pet store that day.

“Look! He’s so cute, and friendly.” My wife poked her finger between the bars of his cage as he rubbed against her.

“He’s also filthy, and appears to be sick. Don’t they take care of these guys?” I asked.

Then I saw something which changed the whole matter for us. Jasper, which was his name, was about ten months old and had been picked up as a stray by Animal Control. He was not from a shelter at all. I looked at my wife, as we both knew what that meant. If he wasn’t adopted within days, Animal Control would euthanize him to make room for more.

“What if no one takes him because of all the kittens up front?” My wife looked at me with brown eyes that began to well up with tears.

“He’ll be here after they are gone. Someone will take him.” However, I was not sure of either of these statements. He was cute, but it was hard for many people to look past the newness of kittens to see the love and affection a slightly older cat could give. Plus, he was dirty and probably had some sort of disease – which didn’t improve his prospects much.

My wife could tell my heart was not in complete agreement with my response as we locked eyes for a moment in an unspoken discussion. I smiled and leaned out of the cat room door to flag down a salesperson as it was getting late on Sunday and they would be closing soon.

“Excuse me, I know you close in less than an hour, but we need to bring our dog in to make sure he won’t eat this orange cat. Can we come by tomorrow to introduce him to Jasper?”

The look on the employee’s face told us all we needed to know. “Oh, no I’m sorry, but he goes back to Animal Control tonight. I’m afraid this is his last day . . . “

My wife’s eyes reached their watershed. At that moment, we knew two things for certain. Firstly our dog had better like cats. And secondly one of us needed to drive like Flight of the Bumblebee back to the house, retrieve Roscoe and get back to the store before it closed. My wife, being the more experienced driver at high speeds (her references to my driving typically involved the words “pokey” and “grandpa”), took the challenge and returned with Roscoe a full twenty minutes before they closed.

Two things we learned that day were that Roscoe absolutely adores cats and just wants to lick them on the head, and that my wife’s desire to save this cat’s life coupled with her love for him had apparently cured her cat allergy. Twenty minutes later and we were the proud new owners of a ten-month-old orange and white cat.

Four years have gone by since that day when we adopted Jasper, and our family has grown in the interim. But Jasper, the patriarch as we sometimes call him, has changed our lives for the better. He has brought joy and comfort to moments of great sadness, as in the period surrounding my father-in-law’s heart-wrenching death. Jasper befriended almost everyone that has ever walked through our door, and for those he didn’t – we began to wonder if he knew something about those people had missed. He also brought surprise and laughter to our lives, as in the time I spotted him in a window twelve feet off the ground, to which he demonstrated to me the floor-counter-refrigerator-cabinets-window method of arriving there.

At times, even when he was naughty, you could only shake your head and laugh. LIke the (expensive) occasion where his trek up to the twelve-foot-high window resulted in the door to the freezer being being knocked open – all day long. By the time I arrived home from work, everything in the freezer was as soggy and wet as a short-armed newspaper on a rainy morning, and Jasper he was in deep hiding.
A litany of emotions, all elicited from this orange-and-white strange little cat. Whether it be wrestling the dog, or laying over the heat register in the morning completely blocking the warm air flow into the room, or grooming my own orange hair and beard, Jasper constantly reminds us that life is too short to spend time worrying about the little things. We all try to save time everywhere we can by doing things faster or multitasking.

However, what we’re never told is that the rebate coupon for all this time has long since expired, and the time you thought was saved inevitably ends up wasted. So take the long way to where you’re driving, read the menu twice, let your gaze in your true love’s eyes linger just a little longer. Don’t wait until you are older to do the things your heart desired when you were young. No one is guaranteed of getting old, so jump on that refrigerator if you want to. After all, you can replace the spoiled food from the freezer, but you can never replace a missed-out-on dream.

It’s About Influence, not Your Klout

Shawn — Fri, 28 Oct 2011 00:54:27 +0000

Yesterday, Klout released their new scoring model, which they said would decrease some klout scores while keeping many of them the same or increased.

Since then, you may have noticed many people complaining about how their influence has decreased and their score is now lower. I have also saw a post stating that they ‘were told by klout that they could no longer talk to those with lower klout scores then their own, or it would lower their score.’ No one knows exactly how the klout score is calculated (certainly not me) but it DOES NOT MATTER.

It’s not about klout, it’s about influence – If you truly influence people, YOU don’t need a klout score to know this. If your score goes down and you don’t agree – then *gasp* klout may be wrong!!!
If you are influential, you don’t have to tell others, they already know
If you believe that in order to be MORE influential you need to eliminate talking to some people, then you perhaps should seek another line of work
It’s ultimately about the ROI or MOO (movement of others)- If others spread your message online (or OFFline, which klout has no clue about) and you change or reinforce other’s opinions, behaviors or buying habits, that is the goal of “social” and really all media.Ultimately being an influencer is more about understanding who you are and whether you are providing timely, relevant, informational and personable content to others. Being a quote machine that garners 150 retweets or facebook shares per day does not make you influential about anything. Don’t fall prey to the WWGD (What Would @GuyKawasaki Do) principle. Just because someone floods the stream with content, doesn’t mean they genuinely have a passion for the post that interested you. As my grandmother says, “Even a blind cow can find the side of the barn once in a while.” If you keep these principles in mind, and your klout score goes up, then klout is perhaps a good measure of your influence.
Did the fact that my klout score is higher or lower than yours influence you? Or was it the relevance of this article? Point me. Thoughts?

iOS 5 – New Camera and Photo Features

Shawn — Tue, 18 Oct 2011 21:34:38 +0000

The camera button appears at the bottom right of the screen

As a user of the new Apple iOS 5 (currently running on my iPhone 4), I have been discovering and using the various features and functions. One that catches my eye to start is a feature I have long bemoaned the absence of – the ability to take a photo from the lock screen rather than having to unlock the phone and open the camera app.

Also improved:

- Quicker physical shutter release

- The ability to use the volume button (hard button) to snap pictures, which makes self-pics much easier, especially if you need the flash.

- Focus lock feature (AE/AF). This lets you lock the exposure (AE) and the focus (AF) of your image. Tap on what you want to focus on or what you want the iPhone camera to use to determine the proper exposure. Tap and hold to turn on the AE/AF feature.

- If you select HDR as your photo choice, you may choose in the Settings to not save the non-HDR version of photos (no more double photos in your album or stream)

- You may now perform limited editing functions directly from the iPhone. From the photo, select “Edit” in the upper right corner and you have the ability to change 1) the orientation of the photo 2) use an auto-enhance feature 3) tap and selectively remove red-eye and 4) crop photos.

- For Twitter enthusiasts (like me), Apple has finally added the Tweet option to the Share options (accessed by the arrow when viewing the photo). Now you can compose and send a tweet directly from your photo!

- Finally for those who have the iPhone 4S (me too soon hopefully), the camera has been bumped from 5 megapixels in the iPhone 4 to 8 megapixels in the 4S. Once I get the 4S, I will post some comparative pictures between the two.

Reduced-Fat Baked Mostaccioli

Shawn — Sat, 03 Sep 2011 03:13:46 +0000

Ingredients:

1lb. extra lean beef (96/4) or ground filet of chicken breast

2 tsp. garlic salt

2 tsp. Italian seasoning

1 tsp. cayenne pepper

1 tsp. onion powder

8 oz. mostaccioli

¼ cup Egg Beaters

1 16 oz. container fat-free ricotta cheese

1 10 oz. package frozen chopped spinach, thawed and squeezed dry

1 cup shredded 2% reduced fat mozzarella

2/3 cup reduced fat grated parmesan cheese

1/3 cup chopped fresh parsley

1 jar reduced fat pasta sauce

1 15 oz. can petite diced tomatoes

4 gloves garlic

2 tsp. sea salt

Preparation Instructions:

Cook pasta according to package directions.
Brown beef or chicken and season with garlic sale, cayenne pepper, Italian seasoning and onion powder.
In a large bowl combine the egg beater, ricotta, spinach, 2/3 cup mozzarella cheese, ½ cup Parmesan cheese, and parsley. Set aside.
Drain pasta, stir in browned beef or chicken, tomatoes, sea salt, crushed garlic cloves and 2/3 pasta sauce.
Layer ½ pasta mixture in lasagna pan coated with non-stick cooking spray.
Top with spinach mixture followed by remaining pasta mixture.
Cover with remaining pasta sauce.
Cover with aluminum foil and bake for 35 to 40 minutes or until bubbly.
Uncover and top with remaining mozzarella and Parmesan cheeses.
Cook five minutes longer or until cheese is melted.

Alternative prep method:

Cook pasta according to package directions.
Brown beef or chicken and season with garlic sale, cayenne pepper, Italian seasoning and onion powder.
In a large bowl combine the egg beater, ricotta, spinach, mozzarella cheese, Parmesan cheese, and parsley. Set aside.
Drain pasta, stir in browned beef or chicken, tomatoes, sea sale, crushed garlic cloves and pasta sauce.
Loosely combine spinach and pasta mixtures and pour into lasagna pan coated with non-stick cooking spray and baked, covered, for 35 to 40 minutes or heat in crock pot, on low, until warm (about 2 ½ hours).

Servings: 8 Nutrition Information: Prepared with extra lean beef, 1/8 pan has 322 calories and 7 grams of fat. Prepared with ground filet of chicken, 1/8 pan has 292 calories and 5 grams of fat.

Weekly Fitness Progress: W/E 4/10/11

Shawn — Mon, 11 Apr 2011 20:14:51 +0000

Well after being horribly sick earlier in the week (out Monday and voiceless Tuesday), I was able to still get some activity in to try and build my endurance, which for whatever reason, sucks right now. It seems at 2 miles running or 20+ minutes of any physical activity, I’m just dead-legged and my “on status” (from meds and my DBS device for Parkinson’s) drops significantly.

Still, with all that said, my activities and accomplishments for the week ending 4/10/11 were:

Wednesday, 4/6: Ran in my neighborhood (elevation change of near 100 feet per the Nike+ app). Distance run: 1.08 miles. Total time: 8:56. I set a new personal best average time per mile of 8 minutes and 16 seconds per mile.
Thursday, 4/7: Rode my new bicycle 2 miles in mt local area. Played with a new app (iMapMyRide) but did not capture valid stats for this ride.
Friday, 4/8: Off day.
Saturday, 4/9: Over 45 minutes, hit 75 solid, hard-swinging drives at the driving range [golf]. I love doing this as everything from my calves, glutes, abs and arms will be sore the next day. Often I even hit the full 150 but I showed restraint this day and good thing, because I was spent by the end.
Sunday, 4/10: Used the iMapMyRide app to record my whole ride. Distance: 2.24 miles. Total time: 17 minutes, 27 seconds. Pace: 7:48 minutes per mile. My pace was slow because (I think) I’m still getting used to a 21 speed bicycle as I’ve never had one before. Plus it was 90 degrees and I was sweating buckets as our subdivision has almost a 100 foot elevation change!

Queue the Rock-y Music… My First Half-Marathon

Shawn — Fri, 08 Apr 2011 17:38:16 +0000

As many of you know, I have early onset Parkinson’s Disease, having been diagnosed over 8 years ago at the age of 32. If you’ve read my other blog posts, you also know that 2010 was a year of transition for me. I had DBS implant (basically a pacemaker in your brain which ‘encourages’ your brain to make dopamine through the release of electrical impulses) surgery for my right side in May and the left in December. [see my blog post on this]

The settings are not yet perfect, but I have begun running this year. According to my NikePlus.com app on my iPhone [Read my blog review of the Nike+ App], I have run 6.43 miles this year and on Wednesday had my fastest average mile ever: 8 minutes and 16 seconds, which I am very proud of given where I was even four months ago. I have talked about some of my plans with some great blogger and fitness/running peers and friends and shared the fact that my goal for 2011 was to show that Parkinson’s Disease cannot defeat my will or my body by running a half-marathon by end of year.

However, I had not stated this goal openly and publicly… until today. Rock n’ Roll marathon series is in St. Louis on October 23 and Los Angeles on October 30 and I will run in one of them! Join me won’t you? I will be sharing my workouts, runs, and overall progress towards this goal.

Are you already registered?

Will you run with me? (in either location – yes I realize the ultimate insanity behind this request)

Join and friend me on NikePlus.com!

Follow my progress on Twitter (or Facebook if you know me). (See top of page for links)

Do you have a 5K race you suggest I run before then?

Training tips or encouragement? Post a comment and I’ll respond to every single one.

Chicken Enchilada Lasagna

Shawn — Wed, 06 Apr 2011 00:16:10 +0000

Ingredients:

26 ounces cooked, shredded chicken breast
1 teaspoon ground cumin
2 tablespoons chopped fresh cilantro
1 15 ounce can black beans, drained
1 4.5 ounce can diced chile peppers, drained
1 14.5 ounce can petite diced tomatoes, drained
8 6 inch corn tortillas
1 10 ounce can red enchilada sauce
2 cups 2% shredded Mexican cheese blend

A new dish we just tried for the first time. Delicious doesn’t even begin to cover how good this dish was! A must try!

Preparation Instructions:

Preheat oven to 375 degrees.
Spray non-stick cooking spray on 11×7 inch baking dish, set aside.
In a medium bowl, mix chicken, cumin, cilantro, beans, chile peppers and tomatoes thoroughly.
Spread half the enchilada sauce over the bottom of the baking dish.
Layer four tortillas over enchilada sauce.
Cover tortillas with half of chicken mixture.
Sprinkle one cup of cheese over chicken mixture.
Spoon remaining enchilada sauce over cheese.
Layer remaining four tortillas over sauce.
Cover tortillas with remaining chicken mixture.
Sprinkle remaining cheese over chicken mixture.
Cover with aluminum foil and bake for 30 minutes.
Uncover and continue baking 10 minutes longer.
Let stand ten minutes before serving.
Garnish with reduced fat sour cream, if desired.

Servings: 8

Calories per Serving: 278 calories

Fat: 9 grams (81 calories or 29%)

The New Social is Traditional Engagement

Shawn — Thu, 31 Mar 2011 15:59:01 +0000

The New Social is about Traditional Values

This morning I was reviewing the plan for the day and reading blog posts and twitter updates when I came across a great quote that I immediately agreed with. The quote was not mentioned within the context of social media, community or customer service, but it started me thinking. The quote was:

“People may forget what you say. They may recall exactly the things you did. But people will never ever forget how you made them feel.”

This struck me as so true when it comes to social media and customer service. That for all the “newness” of social media and technology and gadgetry, the new social is all about traditional engagement and values.

“It is better to be hated than forgotten.”

It is much better to be loved, or yes even hated, than forgotten. Customers who come at your brand with complaints in a fervor, are trying to help you fix your product or service because they like it. If they didn’t, they would simply quit doing business with you.

The rules of engaging customers through social media have not changed. They are no different from what thebasic tenets of effective conversation have always been:

Be authentic: Customers are smart and savvy and are immediately turned off by anything less..
Listen: You can’t give a customer what they need without listening, and not just hearing. As Mark Twain said, if we were meant to talk more than listen, we’d have been given two mouths and one ear.
Be courteous: You can help a customer yet treat them terribly, and you will get negative sentiment from that customer to their social sphere.
Have empathy: Note I didn’t say “show” empathy. Put yourself in the customer’s place and try to get where they are coming from, and respond accordingly. This will be very evident to the customer.
Ask questions: You can’t understand the customer’s pain and or true needs without asking qualifying quetions.
Solicit honest feedback: Ask for feedback on yourself, the product or service, and check back in with them. Never underestimate the power of reaching out to a customer 2-4 weeks after you have assisted them (“Hi, I just want to see if your problem has not reoccurred.

A customer’s experience has by far the greatest impact on a company’s brand, image and reputation. Implementing the common-sense approach above will make your customers feel more engaged with your company. And engaged customers participate more in discussion about the brand, and drive discussions about it’s products and customer service.