Another one of the more frustrating features of Parkinson’s is Dyskinesia. Dyskinesia is not really a feature of the disease as much as it is a side effect of taking Carbidopa/Levodopa. There are days when I have to decrease or skip a dose in a day just to stop moving. For me it’s mostly the upper body that wiggles and jiggles if dealing with a severe attack. Sometimes it causes me to lose balance because I am flailing about.

I think, however, I deal with it on a daily basis – particularly at meal times. At times I feel close to normal while at others, I feel as though I need someone to feed me. The sloppier the meal, the more anxious I seem to get because I am trying to keep it from suffering from gravitational pull before it reaches my mouth!

The worst that has happened… and it happens on an on-again-off-again basis – is I’ve found out how sharp my teeth really are. How sharp they are on my lips, tongue (top and bottom), and the insides of my cheeks. The sudden jolt it gives me makes me angry. Not only does it hurt, it seems everyone at the table notices and it brings me panic, more anxiety and outright rage. Eating a meal shouldn’t have to hurt so much. Thank heavens Colgate-Palmolive makes Peroxyl. Without it, the interior of my mouth would look like a war zone!

“Eric, have you tried taking smaller bites; have you tried eating softer foods…” Blah-blah-blah.. Yes I try to take smaller bites, but I will not give up eating what I like to eat – hard or soft. But just understand if you see me break up a taco, or cut a tiny piece of meat that I am doing my best to keep my pearly daggers from bludgeoning the softer parts of my mouth.

Sigh…

I just realized I am a day late with this, but this is one anniversary it’s okay to be wrong about. And as long as we’re being honest, it’s only semi-accurate anyway. The noticable symptoms started in March, 2013

It was January 28, 2014, a Tuesday, when I received the first diagnosis of Parkinson’s Disease. Frankly, I knew it was PD, but I had yet to hear a doctor say it to me. And the doctor to say it to me was frankly the wrong doctor. Her approach was seemingly nice, yet straight-forward in a way that said, “let’s jump into this without giving you time to process what I just said.” I really wanted to say, “Oh yeah? Well your hair is ugly!” (No really, it looked like she hadn’t been to a salon in years!) But I held back.

I only saw this doctor one more time about 5 months later and that’s when it became apparent we needed to do something more.

Most of you know the old story by now. 2014 got really weird after that appointment, but one of the saving graces was the excursion to Mayo Clinic that September for a second opinion and a more firm diagnosis of this disease. It would be another 4 years before I started any medication.

Together we have learned a lot over the last 10 years. (And by we, I mean you, dear reader, and me.) Things like:

• Everyone who has Parkinson’s has a different disease. No two cases are the same.
• I’ve probably been dealing with this longer than I know after having learned some of the more not-so-obvious symptoms.
• The medicines are helpful, but you really need to communicate with your doctors about what works and what doesn’t work. The difference of adding or subtracting a pill or two can make all the difference in the world… but it has to happen again and again because it can all change in an instant.

The one good thing that first Movement Specialist said after she barged in and greeted me with, “You have Parkinsons,” was that she expected I would live for several more decades. One down; several more to go!

A quick report to tell you compared to my last appointment with Dr. B. in February, today’s appointment was much, MUCH better. First of all it was transfered to a tele-health visit at my insistence. Secondly, it was just Dr. B. No hot shot dude with cowboy boots to be seen or who would insist on the freakishly invasive DBS proceedure.

And thank heaven I changed it to a virtual visit. We were “with” Dr. B. for about 7-8 minutes total. It would have taken about 3-4 times as long just to get there!

The meds are status quo and Dr. B. was pleased. “You have made my day,” she said.

After dealing with this for 10 years, I think I know what I am doing in taking care of my situation.

Before this appointment I saw my chiropractor for my monthly adjustment. I made sure to mention to Dr. B. how much this has been helping with the dystonia in my neck among other things… including the obnoxious constipation episodes. Dr. S. – the chiropractor – has some ammo up her sleeve should I need a but more of a “cleanse”…

I still live with this disease… and it’s obvious. But I am managing to make life work in spite of it… and that has been the goal all along.

Coming soon: More about chiropractics and some unique tools I’ve discovered to help me.

I don’t mean to sound mean in the title, especially when everybody means well and we all want what is best for those whom we love. But what CAN be done to one’s body – specifically on an optional basis – should be up to that person to decide for him- or herself.

Thursday was my most recent visit with my neurologist. This was the first in-person visit since December 2021. With the three follow-ups in between being “tele-health”. Now I am noticing a very distinct pattern with these visits. The in-office are extraordinarily stressful, not so much in the “white coat syndrome” situation as it is with the “the appointment is only a ‘few’ minutes but the damn thing eats up my day” sort of situation. Part of that is due to distance, and considering the safest and easiest method of getting there, so on and so forth.

When Lisa took me to the appointment in 2021, it was a semi-cold day, but you wouldn’t have known it to look at me. The appointment fell at almost the precise time of day where I am most likely to nap, the office heat was on full-blast causing me to sweat and my mouth to dry up, and where there’s heat, tremors are likely to follow. The doctor always sends a “fellow” in first. It is rare this is the same person each visit, and I doubt very highly I will see that person again after that. They do all the movement tests and watch me walk the hallway. Then they usually give me their “expert” opinion about what they think I should do.

So there I am sweating and feeling gross… shaking and not able to simmer it down… and of course we’re masked with N-95s to slow the passing of any virus. _{(The most light-hearted moment of this appointment was when the good doctor came in and proceeded to ask Lisa, “Do you notice him acting out in his dreams at night?” To which she responded, “I’ve never noticed because I don’t sleep with him. I’m the ‘best friend’ here.” We had a good giggle over that and moved on!)} There was a bit of discussion about medicine adjustment and so forth and a hint of discussion about DBS – Deep Brain Stimulation. I was told the following two appointments could be done via telehealth unless I deemed it necessary to go in. One appointment was three months later with the PA, and the other would follow 3 months after that with the doctor. On the car ride home, my body was exuding so much heat Lisa gave me permission to open the passenger window I had fogged up!

To be fair, many people have mentioned DBS to me. Again, all of these folks are being helpful and well-meaning, but maybe only having heard of it from another person with the disease or through something they read. “This sounds like the perfect solution to your issue! You should look into it” I usually answer with something to the effect of, “I have, and I appreciate the concern and interest. But I don’t yet see it as the ‘miracle’ everybody thinks it is.

Fast forward to June, 2022 – I had just started with some chiropractic treatment which helped and continues to do so with a lot of other aches and pains in my body. After a few adjustments (I think about 7 or 8 by month’s end) I was feeling really good. Less pain, meds were doing everything they should be doing, and I had more energy than I had in a long time. Of course it was a Thursday afternoon, and for some reason I ended up being in the church office that day which is not a usual thing, but I don’t recall why I was there that day instead. Both Lisa and Annie were there and it was just the doc (sans Fellow) on the other end. It was probably the best I had been in the, at the time, 8 1/2 years I had been dealing with this disease and it ended with no further discussion other than to keep on doing what I was doing. That continued well into the autumn months.

By mid-late autumn, the only differences I noticed were increasing dyskinesias and dystonia.

Dyskinesia is a function of too much drug therapy – or maybe best stated as “too much in a dose”. That is a pretty fast thing to resolve if you have the freedom from your doctor to “experiment within the written prescription” a bit. It took me about a week to resolve it

Dystonia is a function of the ever-progressing disease itself where a muscle will tense up and do its own thing. When it’s in my toes it actually feels good as they expand as widely as they are able – think of a peacock strutting his feathers. If it’s in my hand, it’s a few minutes of fingers crimpled together in an odd, almost useless formation. But it my neck, it hurts. It’s probably noticeable to most as it twists my neck and sometimes tugs at my jaw depending on the intensity. These last for about 20 minutes in the morning … or later in the day if it hadn’t happened “on schedule”.

In going back to the appointment the other day with Annie in tow, we Ubered our way to the office. After the speed demon nearly got us killed pulling out of my neighborhood, my body was already in a state of discomfort. Even though we were way early, my 3:00 p.m. dosing was still going to come up in the middle of this and I could tell it wasn’t going to go well. Sure enough, as the temps outside were quite frigid, the heat in the office suite was set to “ROAST” and I was reaching the browning phase of the cook cycle. So there went the sweat, tremors and probably the most cruel bout of neck dystonia I’ve ever had.

The hot shot, skinny Fellow fellow with pointy-toe Cowboy Boots came in and asked how we were and why I won’t consider DBS. _{(This was an immediate reminder back to my second appointment in this office almost 9 years to the day before when this doctor who is no longer with the practice stormed in and seemingly said, “Hello, Mr. O’Brien nice to see you we believe you have Parkinson’s and this is what we’ll do.”)} “It’s a miracle!” he said.

“Well,” I began, “what makes it a miracle?”

“It just is! People see these symptoms melt away and they are down to far less or no medic… well some drop to no medication and build back up as they see necessary.”

Annie was bold enough to ask, “what has been YOUR personal experience?” What she was trying to get at and soon clarified, was to whom, with young-onset PD, has he spoken who shared their personal experience with him.

I don’t think he ever answered that question. Though he did admit

the word “miracle” rarely comes up in medicine and science.

Again, I was a ball of sweat and by this time my neck dystonia was putting on quite a show. Still, I was able to do all of the motions they asked although not as well as I would if we were talking through the computer cameras with me in my natural habitat.

But his DBS talk-up was much like a salesman at my door trying to get me to buy a vacuum or something I didn’t need. And what used to come with a seeming promise of many more medicinal combinations seemed to point almost exclusively to the DBS. To say Annie’s experience in science and animal welfare, her inquisitive nature, her own discomfort with “people doctors”, and knowing the level of my own discomfort with invasive (I don’t care how “minimal”) procedures came in quite handy here. If it was just me in that room, I fear that I may have walked out of there having signed my life away.

The good doctor (whom I am very much fond of in personality and practice) said DBS is just something to consider and nothing I need to do right away. The process would start with a morning observance without having taken a dose or two of meds to see where things stood without. That would be followed by taking the dose (late) to see where things stood WITH the meds. It would also require MRIs and measurements in cognition and such before the procedure could even take place. “Of course, at your age, you have nothing to worry about,” said Mr. HotShot Salesman Fellow w/Cowboy Boots.

Once the noodles would be installed in my brain and the control panel in my upper chest, it would still be another six months before everything was adjusted, targeted, and pointed correctly. So it still wouldn’t be an immediate solution.

So we left the office with the promise that we would allow for discussion with a neuro-surgeon, but more importantly with someone who has truly experienced the DBS procedure. Hopefully there is an honest soul willing to sit with me and talk about it.

The dystonia stopped the instant I was on my driveway _{(after we rode home in a Tesla with rap music; I was also cooled down to the point where I didn’t steam up the windows… of which made up about 50% of this vehicle)}. I was safe and settled once more.

Please know that I am grateful for modern medicine and technology. I would certainly be grateful if ever, God forbid, a situation arose where it was crucial in saving my life. But something elective which might do what it’s supposed to but isn’t a guarantee, is something I want to have all of the data on before I let you invade me – no matter how “minimally” – with it.

This journey as far from over, right now I am able to function close to normal at least 70% of the time. Please let me know when the DBS procedure is more like trying on a pair of shoes.

Finally – some time off to update!

As we round out the bend on 2022, I will say this has probably been my best year living with PD yet! The investment into chiropractic care is likely the reason – although it doesn’t do much for Parkinson’s itself, the decompression treatments and spinal adjustments have been a help everywhere else to relieve the pain and discomfort to allow me to tend to the PD.

I am down to once-monthly adjustment visits with Dr. S. Given the programming I used to produce at KHB I used to think a lot of this chiropractic was a wish in one hand a load of you-know-what in the other… but I have seen incredible benefit and I think just like everything else, it may work for some but not others.

My medicine dosage, while maybe the order has been changed a bit, has not been increased since December 2, 2021! That is the first time since 2018 I’ve gone without an increase! Again, could it be due to the chiropractic care? Not sure. But even if it isn’t, I’ll take it! I have only forgotten 2 doses this year – both completely unintentionally and neither of which caused any major difference in how I felt. In both instances the realization of such was almost immediately before the next dose was due. Not that I am interested in testing this notion on a regular basis, I am wondering if I am over-prescribed, but just by a teeny bit? Or perhaps one needs to “skip” periodically in order to keep things in line. It’s a question for Dr. B in February!

In relation to that, the dyskinesia of late has been a little more of a burden. That is why I think there might be a little too much medication in me at times. It’s the meds that cause dyskinesia – the jerky dances that make people in the grocery store stare at you. But there has also been dystonia – that is a part of the disease. Imagine the toes on your foot spreading out as wide as they can on their own. Or maybe your hand will squeeze together as though you as sloppily trying to grab a door knob. Or worse yet… your neck feels like it is twisting and tightening to the point you feel like your head is going to pop right off… the first two are quite tolerable while the last one is not at all fun… but it might have an advantage for a Halloween costume.

While I have no real desire to go too many places any more, I have noticed that driving has improved significantly. I’m not ready for a cross-country tour, but I have noticed a better tolerance for driving cross-town and even down the street without significant issue. But I know my limits and know when to give-in for safety.

I am hopeful 2023 will be even better.

Look, I know there is no cure for Parkinson’s and I will never believe the random schmoe who says there is. Years ago when I was at the radio station on a regular basis, there was a program called “Daniel Chapter One” on which the husband and wife team always touted how the husband cured himself from Multiple Sclerosis. He had some products… and a bridge in Brooklyn to sell you if you had cancer or other diseases as I recall. You would have done better to buy the bridge and get over it. He also called every medical practitioner “Dr. DumDum”. “Health Watch with Jim & Trish” was, to say the least, questionable. It was, frankly, downright scary! (Here’s what happened to them.)

At one time, the entire day’s programming at “The Big 620” not only included these syndicated programs, but they also had local naturopaths and chiropractors. Most of them had some sort of specialty to tout, and likely most of them could have stuck to a more traditional method for their work and been fine. But I developed a good phone relationship with some of these people. As word got around about my having PD, several of them kindly offered consult if I wanted it. I usually acknowledged it and moved on. I didn’t want things to be awkward if their suggestions didn’t work for me. Given that I was on a pretty tight budget also didn’t help.

When I was diagnosed in 2014, I often wondered if chiropractic would work for me. But then you hear stories from people for whom it didn’t work and you begin to doubt all over again. It was that same year that I was introduced to Dr. Dan Turo who has a practice here in the North Hills. It didn’t take long for a friendship to establish though and for as much as I admire his work and his advice – and at the time I inquired my insurance wasn’t accepted at his office – I was in that “awkward” circumstance again where if it didn’t work out would we remain a friendship or if I was a patient would it be weird to be together on a more social level.

A few weeks ago I was on TikTok and up popped an ad. The woman in the ad introduced herself as Dr. Dawn Spale and she was standing next to her decompression table. By this time I had been experiencing pain in my neck (honestly some days I felt like what a Picasso painting looks like) and my lower back. The pain was not only exhausting; some days it was excruciating. So I clicked on her ad. If I qualified, I would get three sessions on the table at no cost.

A few days later, I received an email with confidence that she could help me and a week or so later, Annie and I made the 20-mile trek to Brackenridge, PA. It was a Friday and we were the last appointment of the short office day. Dr. Dawn sat down with both of us and told me up front that my insurance would cover a good portion of treatment and what the co-pays were. I was ecstatic! (Thank you Episcopal Church!)

Dr. Dawn asked about my history with PD and begin to do her own joint and spine research. She asked if we could do some x-rays and although they were the old-fashioned kind (no digital here), she was able to explain to me what was going on. The key to this was when she said, “based on what you told me, these problems with your alignment have been around longer than you’ve been dealing with the PD. But we can help you alleviate these issues so that you may better live with Parkinson’s.

The cervical vertebrae in my neck were twisted. No wonder I was in pain so much! C1 and C2 were especially twisted to the point that it was no wonder I couldn’t turn my head. Not to mention the subluxation which had those cervical numbers curved convex in the front whereas they should be convex to the back. My lower back was pinched a little too closely in the wrong direction as well. She did my first adjustment and I truly could have been an ad for Rice Krispies. She let me go and asked for me to return the next week when she would have a plan in place.

When we returned the next week we went over her further discoveries. “Did you know that your hips are off balance?”

“Yes. I’ve known that ever since I was a kid,” I said.

She assured me that it was a part of the plan to fix that. In fact, she told me that we should work towards repairing the problem and not just treat the symptoms.

We discussed the plan at length and what insurance was willing to pay. It was a rather sizable percentage and with the copays and what insurance wouldn’t otherwise cover, and a pretty decent discount if I paid in full up front (with the promise of reimbursement if the plan had to stop), my total came to just about equal to what insurance covers, all of which totals about $1600.

The Allegheny Health and Physical Medicine office includes a center for therapeutic exercises and the decompression table, as well as a room for light therapy. My plan includes 12 sessions of decompression and 6 sessions of light therapy. (3 decompression table sessions at no cost and 3 light therapy sessions at no cost!) A few minutes of neck exercises in the “gym” area, and an adjustment. The trip to and from probably takes longer than the appointment, but even with the high gas prices, this has proven itself worth the effort and expense.

As I am writing this, I have had two sessions this week of everything listed above. If I can keep on track, these visits should reduce in number by early-to-mid August. But after 4 adjustments (including today’s) Dr. Dawn tells me my hips are just about even. I can tell you that my neck and lower back feel worked out, but not painful. I haven’t felt this good in ages! During the second decompression treatment today, I felt some nerves “spring to life” throughout my body.

Despite all this, I’m still living with Parkinson’s. Nobody has claimed that this a cure that nobody knows about, rather that it’s complementary to the Carbidopa/Levodopa, the Amantadine, the Selegeline, etc. But they all work a little better now. I am a little more confident in driving the car that I have barely used in the last year, but will still gladly let Lisa occupy the driver’s seat should we do a Christmas Tree shopping road trip!!! I have slept better over the last few nights – even though the intense heat was no help. And my mood? Annie says it’s the best she’s seen in some time!

I still have tremor. I still get tired. I still have Parkinson’s. It’s just a little easier to deal with now! I still produce radio shows and church bulletins. It’s just a little easier to do now!

A few years ago, I posted to Facebook about a time when I stopped at a nearby Sheetz to get gas before heading to the radio station. It was an extremely frigid day, and as this was before I was taking meds, the cold weather really affected my tremors. After I pumped gas I went inside with my upper body shaking outwardly. Frankly I looked like I was just freezing. A nearby observer who had no ill will whatsoever, said something like “you must be really cold with this wind”. I responded with the same vain telling him he was 50 percent correct, but that I also had Parkinson’s and, in fact, the cold air was certainly no help.

This gentleman suddenly looked at me in horror, embarrassed that he even said anything. I had reassured him that he was well within the “cone of respect” and not to sweat it. He thanked me and we exchanged a few more kind words before going our ways.

I’ve had a few other instances where I have been some place alone and the tremor caused someone to come over and check on me… all well meaning, right? Yes.

Tonight however, I saw this… I don’t know the man telling the story, but he has experienced one of my biggest fears. Go ahead and watch… I’ll wait.

View this post on Instagram

A post shared by Jimmy Choi (@jcfoxninja)

This poor man. He had to put up with such a jerk on a night when people were there to have fun. It just goes to show you that some people never grow up. I suspect there might have been some adult beverage involvement too. Mr. Choi’s reaction was in fact the correct thing to do. He was certainly the bigger man.

I have yet to deal with any such circumstance, but when I do I hope to have half of the grace Mr. Choi did in his situation.

April starts on Friday – and with that comes Parkinson’s Awareness Month. Yes, that means a new t-shirt is available. BUT it’s a “limited edition” run through September 16, 2022.

Many of you were so kind last year to buy some merchandise and/or offer fiscal support to me as I was coming out of a, shall we call it “financial restructuring”. I remain grateful and appreciative for the support, but this year I wanted to do something for one of the many Parkinson’s organizations out there. 100% of the proceeds from the sale of the t-shirt above will go to the Michael J. Fox Foundation for Parkinson’s Research. The inspiration for this shirt comes from the love I feel from all who support me – you’re family whether you want to be or not! Click on the picture above to go to the sale page .

Of course, all of the other merchandise – mugs, shirts, hoodies, doggie apparel and all PBRTV merchandise remains for sale, but the proceeds from those will not go to the MJFF. Here is the link to the whole store!

Also during the month of April, I am going to make every attempt to be on TikTok (and other platforms) each day with a brief fact of the day as it relates to Parkinson’s. I hope you’ll join me! If I’m not on all 30 days, I’ll try to be on at least every other day. The producer in me, of course, wants this to be picture perfect and not like the average dross you find on these sites! But the reality is I just want to be present with the facts!

So that was quick! February 3 – two months and a day following my last in-person appointment. I had a video follow up with Ryan the PA. My support team of two humans, at least two cats and at least one dog were with me via zoom via computer as I conferenced in on the app using my phone. The weather was NOT conducive to anyone being here or there in the flesh.

At the December 2 appointment (which seems like a lifetime ago), Dr. B. recommended that I experiment a little with the meds to find what Ryan calls “the sweet spot” so that I am on an even keel in regard to time without tremors. If you’ve been reading along or we’ve talked, you might remember that I found said sweet spot pretty quickly…

To recap:

1 1/2 Immediate Release Sinemet at 8:00/11:30 a.m.; 3:00/6:30 p.m.; 1/2 IR at 10:00 p.m.
1 Controlled Release Sinemet at 8:00 a.m. and 10:00 p.m.; 1/2 at 11:30 a.m. and 3:00 p.m.
1 Selegilene at 8:00 and 11:30 a.m.

…and of course there’s the dose of Valsartan at 10:00 p.m. prescribed by Dr. T. which has helped keep my blood pressure at a normal level.

So it seems to be working as best as one can hope for. But dyskenesia has been pretty intense at time some days. The pain it causes can itself cause emotions to ring high too. The more violent dyskenesias are the more exhausting they are and the more I hurt. Some days it feels like it’ll never end, and when was the last time I actually felt great? The reality is it might have just been a few hours before that when I “felt great”, but pain can make you forget that too.

Ryan suggested the addition of Amantadine which is often used to treat viral conditions like the flu, but it helps with dopamine production too. He told me that it also helps with the subsiding of dyskenesia. When the weather will allow me to safely pick up the prescription, I will start a 30 day trial of this adding it to my 8:00 a.m. regimen.

With apologies to my friend Dr. Dan Turo, I have also started some short-term chiropractic treatments in the last few weeks. (I prefer to have professional relationships before friendships and not the other way around, I’m sure Dan understands!) While this chiropractic place may be a franchise location and may not have all of the high tech gadgets, it’s clean and the relief I have felt on certain parts of my body has been remarkable. As the practice owner said to me when I went in initially, “given your neurological issues, if I can help you feel 25-30% better I will consider that a win! At least he didn’t promise me the world there! So I will continue this for a month or two more before slowing down to a “maintenance” level as this is an out of pocket expense… one I am finding well worth the money (and not a whole heck of a lot of it) for the time being.

My mood over all has been pretty good, save for frustration and occasional anxiety – both are frequently produced by the ongoing uncertainty and unpredictability of what my body is going to do or is doing at any given moment. As Lisa has called it, “body betrayal”. But one can hope with the continuing adjustment of the necessary meds, it will all work out.

Thank you for continuing to follow me on the journey.