Aug 24

Parkinson’s and Get-togethers

If you’ve known me for any length of time, you know that I was never big on going to parties. I am typically shy – particularly if I don’t know too many people in the room. If I was brave enough to show up (assuming I was alone) after several minutes and some awkward introductions, I probably warmed up to at least one person, if not the crowd. But getting over the first hurdle – that is to say just getting in the car to go – was often difficult.

Now suppose you have Parkinson’s. The awkwardness isn’t just with the warming up to the crowd because you’re shy, but also because of the visual aspects of PD. Imagine you have a severe period of afternoon tremors, or a dyskinetic twitch as you pour yourself a drink, or your body is holding your muscles hostage and everything is tight and movement is difficult. That is where I’ve found myself lately

In most cases these days, if I have to go somewhere alone, I strongly consider the circumstances surrounding the event. For example, a few years ago I attended a potluck supper at the church. These are a long-time favorite event of mine given that it means delicious food made by some really good cooks. That said, when the majority of the people in attendance see you as being able to manage pretty well (and typically they’re right) and they’re engrossed in conversation while stuffing their faces, there’s a pretty good chance they’re not going to notice that you having difficulty traveling across the room with a cup of soup. It’s very much like a high-wire act as your mind plays tricks on you, and… well… let’s just say I’m pretty sure someone took a purse home with soup in it that night. (Whomever it was… sorry, but you really shouldn’t have left your ugly purse on the floor anyway!)

Additionally, the uncertainty of what PD is going to do that day makes being able to get to the event difficult. Trust me, if I say I want to be there, I want to be there. But sometimes the body tells me otherwise. Perhaps driving is out of the question at that time or maybe there is too much anxiety about being somewhere else other than my own comfy sofa or back yard.

How I manage

I usually won’t go anywhere – even if it is a doctor’s appointment – without a +1 or 2 – that is to say Annie and/or Lisa (about whom I still need to write a post officially introducing them!). Even if you know my situation – whether you are family or close friends, etc, they are both uber-aware of what to look for with me and what I may need. They know the medication regimen and will yell at me in surround sound if I forget my pill box. Their presence sets me at ease. Everyone who has met either one or both take an instant liking to them! (I’ll write the intro post soon!)

Paul and Jean hosted Eric, Annie and Lisa for lunch at their State College home on June 12, 2021. Eric calls this “Introducing Family to more Family”.

But I can’t ask Annie or Lisa to be at everything – they have their own lives to live and events to attend too!

Should I have to attend an event alone, I usually tell the host that I probably won’t be able to stay long and ask for a timeline of the key parts of the event. For instance, if the main part of the event is to eat a meal, I ask for the approximate time that will happen. If the host is able to give me an answer, then I tell that person that I will arrive shortly before and likely (but hopefully not) dash shortly thereafter. Most are accommodating and understanding! If you’re serving soup, you may want to ask your other guests to keep their purses in a closet.

“Should we even invite you?”

I am glad you asked! The answer is YES! People with chronic issues like PD, Anxiety, etc. still want to be included.

I remember many years ago when a loved one was recovering from a broken bone, someone close assumed that the person who was recovering “wouldn’t want to go on account of her recovery”. It took a call from someone else to find out the event was even happening and would she be interested in attending? “I wanted to make sure you got the invitation, but _________________ said you probably wouldn’t want to on a count of your recovery.” Needless to say my loved one was not only happy to go, but when the person who was supposed to ask was surprised by her presence at the event well… let’s just say they re-learned the syllable break-up of the word ASS/U/ME (“ass out of u in front of me”)!

I would love to attend your event, but…

  • There is still a chance that I can’t be there due to other obligations.
  • Please consider that “short notice” will likely not work.
  • Let us plan in advance.
  • BONUS: If you are a county or two away, you’ll definitely get to meet Annie and/or Lisa – assuming it works for them!
  • Be understanding if I need to cancel at the last minute because I am having a bad day physically.
  • Consider the weather – if it is extremely cold and windy or very hot and humid, tremors don’t like that.
  • If getting together fails – let’s try again. But PLEASE don’t take it personally if it takes a few tries before it works.

If you are someone who easily gives up on someone because they frequently refuse or cancel, if the person is in good health, I don’t blame you for your decision. But I implore you to make an exception for those with chronic ailments, anxiety or otherwise. Let US tell you when to stop trying. We want to be a part of your life, too.

By the way, September 16, 2021 will mark 7 years since my official diagnosis with PD at Mayo Clinic in Rochester, MN. I have decided the Saturday (this year it’s September 18) closest to September 16 is “Eric’s Avengers Day”! It’s an opportunity to wear or drink from your gear from the Eric’s Avengers shop on Bonfire. It may seem a little bit selfish, but it would certainly put a smile on my face if you consider participating with your gear! If you haven’t ordered gear yet, check out the Bonfire site! (Yes, the PBRTV merch can be used that day too!)

(Proceeds from shirt and mug sales go to my home repairs fund. But if this takes off this year, perhaps we’ll see about making contributions to a PD-related agency or charity in the future.)

Much love to you!

Jun 20

The effects (or sometimes lack thereof) of medicines

From the beginning of this adventure, I’ve been told that the medicine I’ve been taking would gradually lose effectiveness as time goes on. Of course, I think that’s true for just about any condition if you take the meds long enough. I have a pretty strong cocktail these days.

As you will find out in a future post, when I received my official diagnosis in 2014 at the age of 37, I was told that it would be best to stay away from medicine as long as possible. And I think I made it pretty close to 3 1/2 – 4 years before I started.

The main drug is Carbidopa/Levodopa 25/100 – its regular name is Sinemet. This is the generic. Now I can’t remember which does what exactly, but the 25 mg of Carbidopa, I feel certain, is what prevents the 100 mg of Levodopa from going to places in the body where it should not go. I could have that reversed, but it is the main thing that helps calm the tremors and helps me to be able to do things – including typing this post!

Originally I was put on Selegiline. I had to take one when I got up and one NO LATER THAN 1:00 p.m. as it would supposedly keep me up at night. (I often remembered to take the second one at 5 p.m. and had no problem sleeping.)It’s an MAO inhibitor which helps to slow the breakdown of the neurotransmitters – one of which is dopamine! It never felt like it did anything. I would still shake, but that was back in the day when the tremors still seemed pretty mild.

About six months later, in August of 2018, I was given the C/L 25/100 I mentioned above. I had to gradually start it over the course of six weeks or so. I remember it took from the tail-end of August to mid October. Seems to me I took 1/2 tablet in the morning and 1/2 in the evening, and introduced a half a tablet each week until I was taking 3 whole tablets a day.

Since then we’ve added a few more “half tablets” throughout the day and a night-time dose of C/L 50/200 controlled release. My PCP also added a blood pressure tablet. High BP runs in one side of the family and if you can believe this, it has not only calmed me considerably, but I have gone from “loose fit” to “regular fit” pants. That’s a win!

I remember taking that first half tablet in 2018 though. I remember the instant feeling of feeling “normal” for the first time in a few years – almost instantly! And I stopped taking the selegiline because I felt this was doing the trick… and it did… for a while.

But the 50/200 controlled release is a different story. Obviously a little more potent, the idea is for it to get me through the night and when I first get up so I am not shaking too much before the first daytime dose at 8:00.

For the last 6-9 months, the dosing has gone like this:

  • 8:00 a.m. – 1.5 tablets of the C/L – 25/100; 5mg Selegiline
  • 11:30 a.m. – Repeat 8:00 a.m.
  • 3:00 p.m. – 1.5 tablets C/L – 25/100
  • 6:30 p.m. – 1.5 tablets C/L -25/100
  • 10:00 pm. – 1 tablet C/L 50/200 CR; and the BP med

I have managed to get by with one nighttime tablet for about 18 months. But lately I’ve noticed that getting up in the morning was a bit challenging. Lately the 3:00 p.m. dose hasn’t been doing much good either.

Dr. B. gave me her blessing to up the 50/200 to 1 1/2 tablets for a week, and barring any negative effects, increasing it to 2.

Now let me tell you – elevating that dose by half a pill was no problem. But when I raised it a week later to 2 – HOLY SHIT! The dreams! The dreams are terrible! I have had repetitive dreams – though very few at a nightmarish level – some based on elements of events from the day before. These just go around in circles and I seem to be unable to get out of the situation… until I wake up… almost always at 3:30 a.m. and can be awake anywhere from 15 minutes to 2 hours.

Getting to Dr. B. by email took a few days, but she responded that if I was getting to 8:00 a.m. with fewer tremors to keep it up and only to revert back to 1.5 if I really had to and it would eventually work out. I must admit that I reverted back that night and the dream was so horrific I was glad Baby Red was spending the night with me! 2 tablets it is!

The 3:00 p.m. dose has been upped to two whole tablets too. After I experienced what had to be the WORST tremor situation on an afternoon where I was expected at an event. Fortunately I was on site, but locked in my bunker shaking my sillies (and a lot of other things) out. Just a half tablet more improved the situation immensely.

I am grateful for medicine… but I truly hate the adjustment period!

Jun 06

Diagnosis Step 2

We left things in November of 2013 where I had been told I needed to return to the Kaufmann Building in Oakland to see a “Movement Specialist” – a neurologist with some training in movement disorders. It would be the END of January 2014 before I got to see her.

Things at that time began to blur. I was not on my “A Game” on several fronts and I felt out of control. I made it abundantly clear to Vickie that I wanted to address this on MY TERMS and if and when there was something to share, I would make an announcement. But at that moment we had no answers to the many questions.

That December we flew out to Iowa to see my eldest niece, Elena who was a freshman at Luther College that year. The amazing Christmas at Luther program, the small town of Decorah, Iowa and all that went with it made for a perfect break in the action. When we arrived in the little town at 12:30 a.m. that December morning, it was in the upper 40s or lower 50s. But the next afternoon a bitter and sharp cold front swooped in and took hold. Man was it cold and windy! I discovered the hard way that those tremors did NOT care for that kind of weather and, quite frankly, I was suddenly miserable and uncomfortable. I still managed to meet some of the characters in that town with a cheerful attitude.

The months of December and January were rough here in Pittsburgh that year too. The chill in the air was such that snow stuck around like the annoying guest at the party who was the last to leave. After some miserable, dark days in both the literal and figurative sense, we got to January 29 and the opportunity to see Dr. V.

Here we were back in this office with a million patients in the waiting room. And eventually Dr. V. came and got me herself. Somehow I remember skipping over the weight/height/temperature check and not collecting $200 when passing GO. She swept Vickie and me into the room and we sat in the chairs along the wall and without any formal introduction she sat in a chair at a computer and smiled half-heartedly when she said, “We have every reason to believe you have Parkinson’s which, at your age, we consider ‘young onset’. But don’t worry, we are not giving you a death sentence and we expect that you will live for many decades to come.”

Again, I was not incredibly surprised. With what I had witnessed with Paul years before and the little bit of Googling I had done, I was pretty convinced that’s what I was dealing with. Meanwhile, the tears are rolling down Vickie’s cheek. Still though I couldn’t help but think that this doctor was a little off her blipy. I mean she didn’t really introduce herself and she’s telling me in no uncertain terms that I have PD. Way to rip off that band aid, honey pie.

She told us several options we had – medicate, or contemplate. Naturally I chose the latter because something just didn’t seem right to me. No pre-visit evaluation, no real exam until AFTER the slap-you-in-the-face news, and really no course of action except for monitoring the situation until the next appointment in June.

After about 20 or so minutes, we were released and we walked silently to the car. We got in, we breathed in and out and decided that because it was a Tuesday – a day we normally worked – to go see if our Trivia gang was playing that night. We usually played on Sundays and hadn’t been there for weeks.

As we drove toward the venue, Vickie asked me how I felt. I told her that my lack of emotion was because I had figured this out some time ahead of this point. Nonetheless I couldn’t help but think the way I was told was a little harsh and that there were still too many variables to think about. I needed this to sink in and I had a lot of thinking to do.

Trivia was just what we needed that night. As I said, Tuesday wasn’t typically our night, but surprisingly everyone of our Sunday crew was there which made a hard day feel a lot more comfortable.

Little did we know what was in store just about two weeks down the line.

May 07

Diagnosing PD – The first step

It was early one March morning in 2013 when my arm started to tremor on its own. I was married at the time and my then-wife looked at me and said, “why are you doi… no why is your arm doing that?” I recall being worked up about something and I was also pretty sure that I had “slept funny” as we say when we wake up sore in places on our bodies we don’t even know we have.

“I’m just worked up! Let it go!” I said. I don’t recall any such tremor prior to that moment, but I immediately started to do everything I could to hide it. After all, if Vickie had noticed it that quickly, it probably isn’t going away. Remembering that my poor mother had to deal with constant questions before her cancer diagnosis when she appeared jaundiced, I spent days convincing myself, “people are asking because they cared, but I can’t help but think that they are also being ‘nebby’ and will they please just leave me the hell alone!” Deep down I knew. After all, as you read in the prior post, I had observed Paul’s living with PD, but I still hoped that I wasn’t travelling down that path.

Vickie arranged to have me see her PCP – we’ll call her “Dr. T.”^ – whom I had met and was instantly impressed by. But admittedly, I wasn’t too keen on the idea of seeing her as a patient. I was never a fan of doctors to be honest… and I was working at a radio station where the majority of the programming was focused on “alternative medicine” practices. Thankfully, the good doctor would be going on maternity leave for the summer, but she would be happy to see me upon her return.

It was October 23 before I was able to see her – 7 months after the tremor, which was still fairly minor, had begun. Vickie made a “distraction” appointment for herself merely to get me to go. Naturally her appointment was 2 minutes long with mine in the next room taking priority.

After checking my tone; looking up my nostrils; down my throat; etc. etc. Dr. T. said, “Well, it could be Essential or Resting Tremor which follow these criteria… or it could be Parkinson’s Disease. But I can’t tell you that, I need you to see a neurologist at the building next door. Make an appointment as soon as you can, it’s hard to get in over there, but it’ll be no matter where you go.”

I can’t remember the exact date, but it couldn’t have been more than 3 weeks later in the month of November that I saw a doctor at the office where Dr. T. sent me. But I remember the appointment was available the day after it was made. Admittedly I went into an instant panic over this. I was scared enough as it was. My mind went right for the anxiety and panic rather than the, “maybe we’ll get to the bottom of this.”

He was just a general neurologist and his name escapes me. But there I was on a table; Vickie nearby. Although I would say it wasn’t a “tip to tip” exam, he did a number of reflex tests and tone tests. Then, with a chuckle, he asked me, “have you done any manganese mining?” I tried to respond with the same sense of humor and said, “Oh yeah, I was just saying the other day how I needed to do more.”

We had a good laugh and then straightened up as he made his recommendations. “I am going to send you for blood work downstairs,” he said, “but on your way out I would ask that you make an appointment with a Movement Specialist here in the office.”

Now you would think that it would be easy to get an appointment when you are trying to diagnose a condition that isn’t going away. January 29 seemed a long way off – even in early- to mid-November.

I’m not always a patient patient.

Part 2 coming soon…

^Doctor names are redacted for privacy reasons.

May 04

Remembering a friend

I am often asked how I deal with my disease. If I was smart, I would tell people to watch me deal with it. It would save a lot of explanation. But the talker in me goes on to explain, “one day at a time”. As I said in a prior post, this disease is often frustrating because you never know what’s going to come next. Good days, bad days, in-between days are all unpredictable and can’t always be swayed by doing the “right thing” – whatever that is. My top rule is “listen to what your body is telling you”. Rest if you have to. The chores will get done sooner or later.

Oh yes… “HYDRATE,” yell Annie and Lisa every day. (I’ll introduce you later… for now just know that each plays a key role… and that might be their top reminder.)

But I think for now I need to introduce you to Paul.

A very young Paul Carlson (right) in 1959 with his KQV Radio buddies Jim Potyka (left) and announcer Dave “The Great” Scott.

Unfortunately, Paul passed away in 2010 after a battle with cancer on top of PD. I knew who he was for many many years as we were in the same church on Sunday mornings – usually at two different services, however. But it wasn’t until about 2005 that we really made the connection through our mutual friend, Jason, with whom at the time I did a radio show. That connection led to a few years of discussions between our respective services about radio, his engineering career and some projects around the church building.

Did I mention… Paul could fix just about anything? He patched up the church phone system – and taught me about phone wiring. All I remember about it is “Christmas Trees and Buzzing Bees” as it referred to the red and green wires twisted together and the black and yellow wires twisted together.

He wired some remote control devices for the microphones in the sanctuary and, after ordering a replacement mic for the altar, cursed the person who had painted the previous one for aesthetic purposes. “You don’t put paint on electric devices,” he said, “No matter what you do to prevent it, it will always go where you don’t want it to go and it will ruin the wiring!” Such was the case here.

Paul kept up with his gardening on days that were hotter than you-know-where. His secret: “the bucket of weeds”. “Take a 5 gallon bucket and fill it,” he’d say, “when it is filled, that’s when you stop for the day and you’re not under obligation until tomorrow.”

He was always doing “engineer” things with computers and phone systems and other electronic gadgets. I would watch him in awe as he fixed or built whatever it was he was working on. The countless hours he would spend at the church attempting to save the place money on things was incredible. “Here,” he’d say carrying a CPU, “here’s a computer I put together for you out of spare parts I had lying around. It’s not the most up-to-date but I hope it will help you get by until you can get a new one.”

There was one time that he asked for each phone number that came into the building – two church lines, one preschool line, and a fax line. Within two days he had a four page report on how to program the phones so that one of the two lines became the money spending line (in other words it was used as the primary dial-out line) and combine the cost of the other two phone lines and completely omit the fax line. He also worked up the best deal possible with the phone company and was there the day they came to install everything – including high speed internet which he managed to follow the pre-existing wiring around and figured out how to hook the entire building up to the network. Seriously, he could do ANYTHING – and with an abundance of patience and a scosche of frustration.

It really didn’t matter what the project was nor if you asked him to do something, if Paul saw it he would fix it. Most of the time, I was his trusty assistant. On the occasion I would help him I would witness him working through the tremors that were sometimes “show stopping”. He never seemed to mind if I would subtly offer my help in the control of a computer mouse or device he obviously couldn’t control at that moment. We had a silent understanding that I would help in those moments where he needed it.

Our friendship was somewhat brief, but it was meaningful. I merely thought it was due to our common bonds in broadcasting at the time. But it has become much more meaningful since. Paul was a prime example of what someone LIVING with Parkinson’s Disease should be.

The theme most Parkinson’s organizations and doctors continuously promote is “Keep Moving” and that means exercise. Admittedly, it’s not one of my favorite things to do in a disciplined and/or deliberate manner. But I consider a daily routine – getting up, going to work, etc. etc. definitely helps.

As I mentioned earlier, Paul died in 2010 of an unrelated illness. It was three years later that I began to notice the similar tremor in my right arm that I witnessed him dealing with when we would do things together. At the initial diagnosis in 2014 – exactly 4 years TO. THE. DATE. after his death – I truly wished I could sit down with Paul and ask him, “How in the hell did you do it?”

How do you work with such precision on things like phone wires?
How do you control the mouse on the PC when you need to?
What if I have more than a 5-gallon bucket’s worth of weeds in a day?

I have mentioned to a select few (and now to you) that I frequently “channel” Paul. While I still question the validity of communicating with deceased loved ones, I do believe that your heart and mind can make the connection through memories and the notion of “what if” – what if that person was here, what would he/she do? I suspect Paul would agree with that. I also wouldn’t be surprised if he was sporting his eye twinkle and half-grin as he guides my hand over the computer mouse and keeps the work from stopping.

Our friendship on earth was brief, but certainly meant to exist.

May 02

Two Rivers, 30 Minutes – 4/30/21

My long-time cohort, Jason Togyer, interviewed me for his Public Affairs program heard on Tube City Online Radio; WZUM (1550 Braddock; and 101.1 FM); WZUM-FM (88.1 Bethany, WV) ]; WEDO (810 McKeesport and 93.3 FM);

Click here to listen.

By the way, my Public Affairs program called “In Touch” is heard on WKHB (620 Irwin – 92.3/94.1/102.1 FM); WKFB (770 Jeanette and 97.5 FM); WEDO (810 McKeesport and 93.3 FM); KQV (1410 Pittsburgh); WXVE (1570 Latrobe and 97.9 FM); WKGO-FM (88.1 Murrysville); WKVE-FM (103.1 Mt. Pleasant); and WKHB-FM (103.9 Scottdale).

Apr 29

Not(?) Stirred…

No doubt you picked up on the cute pun that normally refers to a mixed drink. Most people prefer theirs shaken rather than using a spoon to stir it. (Don’t blame them.)

Frankly I have joked about this since my diagnosis. It eases the tension in the room when someone new enters the situation and wonders just what the heck is going on with me. Humor goes a long way when you deal with such things.

Truth is, however, that I am sometimes very stirred up by this disease. It’s unpredictable and often frustrating. So, sometimes I let it have its say and take a day or two to rest. But seeing the broader picture, I don’t let this disease define me nor do I let it have complete control over me, and that’s why I can throw jokes in your direction and not think a thing of it.

The idea for this blog stemmed from a project (here comes the sales pitch) that my “partner-in-crime”, Annie put together for me recently. Please feel free to browse the Eric’s Avengers online store. Anything “Eric’s Avengers” is an Annie design. The PBRTV merchandise is designed by yours truly. Proceeds from all sales will help me make some major repairs at the PBRTV World HQ. (End of pitch).

The idea for this blog popped into my head the other night and based on the t-shirt sale project! I promise you that it won’t just be about me (please!). But I hope to use this to share my story, add some insight, and share PD related items of interest for you to read and see.

Stay tuned… next post will be about the process of my diagnosis – a story to some; helpful advice to others!

Apr 29

Introduction

If you are a regular PBRTV.com reader, you might not be aware that I was diagnosed with Parkinson’s in 2014 at the age of 37. Buy the initial diagnosis in January of that year, I had been dealing with persistent but mild tremors since the previous March. But the road didn’t stop there. This blog is a place to talk publicly about my journey and answer your questions. Stay tuned, we’re just getting started!