PD Outliers is an interview series in which outstanding PwPs talk about and share the methods they use to succeed with Parkinson’s Disease.
Meet Gary Pauley. Raised on a farm in South Dakota, Gary had a 20-year career in the U.S. Army Military Police, which took him all over the world before returning home in 2002. Seven years later, at the age of 46, he was diagnosed with PD. His condition progressed so rapidly that his doctors recommended he have Deep Brain Stimulation (DBS), the procedure in which a device called a neurostimulator is implanted to send electrical impulses to specific targets in the brain. DBS greatly improved many of his symptoms, but Gary’s balance later deteriorated to the point that by 2015 he was having trouble dressing himself while standing.
It was at that moment that he began a strength training program called GEM (“Get Excited and Move!”), which was developed for the Parkinson’s Support Group in Savannah, Georgia, where Gary and his family had relocated. Gary found the exercises in the program so effective for regaining his balance and for his overall functioning that he decided to compete in weightlifting competitions and become a certified weightlifting and GEM coach himself. He now runs multiple classes for other PwPs in Savannah, and in an inspiring achievement, he took first place in his weight class at the 2016 Georgia Men’s 50+ USA Powerlifting Competition. Below, you can see him bench-pressing 205 pounds at age 55.
I spoke with Gary to learn how he increased his own balance and strength to such impressive levels, and to press him for any insights he has gained from his time helping other PwPs achieve fitness improvements. The latter part of our conversation also covered his experience with DBS and his mission to increase support for other veterans with PD.
Pam: So let’s begin with how you got into weightlifting. What made you start?
Gary: I got into weightlifting completely by accident.
At the beginning of 2015 my balance had deteriorated to the point where I had gone from running competitively, where I was trying to lower my times, to just trying to finish races. Within the first few months of the year I fell for the first time ever, and my neurologist banned me from the treadmill. I was becoming increasingly inactive, and all sorts of problems—social, physical, mental—were piling up as a result.
While all that was happening, the Savannah Georgia Parkinson‘s Support Group Board, which I was a part of, was looking to start an exercise program for people with Parkinson‘s. We ended up commissioning an Olympian and two-time Olympic weightlifting coach named Michael Cohen to come up with a plan. Part of that plan, not surprisingly, involved weightlifting, and when I approached him about my balance issues, he began to teach me Olympic style weightlifting.
Pam: Olympic style weightlifting? What does that entail?
Gary: Olympic style weightlifting only entails two exercises: the snatch, and the clean and jerk. You‘ve probably seen both of them on TV. The snatch is where you start with the weight on the floor and a wide grip on the bar, and then you snatch it from the floor and bring it straight up, while guiding your head under the bar. You go down into a squat, and then with the weight elevated over your head, you stand.
A YouTube demonstration of the snatch (not Gary)
The clean and jerk starts the same way as the snatch, except your grip is not quite as wide. When the weight comes up, you rest it on your clavicle before heaving it up over your head.
A YouTube demonstration of the clean & jerk (not Gary)
Pam: How long did it take for you to see a positive effect from these exercises?
Gary: It was probably six to eight months before I began to see serious improvement. It was around that time that I began to dress while standing again because I did not have to worry about falling over. I was also able to return to sitting in regular chairs instead of bar stools because I was able to push my body weight up much easier, and I felt confident enough to try this in public.
When my neurologist ran some tests on me she noticed my gait was better as well.
Pam: It is fascinating that your gait improved due to an exercise that’s basically stationary. You wouldn’t think that would happen. Why do you think these exercises were so effective at improving your balance and overall mobility?
Gary: The snatch and the clean and jerk work your brain as much as they do your body. Take the snatch, for instance. You have to concentrate on keeping your center of gravity over your feet as you rapidly hoist a large amount of weight up over your head. It feels like you are splitting your brain. I think the extreme concentration on and coordination between several parts of your body must cause some synapses in your brain to reconnect and re-fire. That‘s my guess. Those of us with PD, we tend to become increasingly one-dimensional. We slowly lose our ability to multi-task. Performing an exercise that requires us to do more than one thing at once has to push back against that in some way. I am not a neuroscientist though.
Pam: How long did it take for you to reach peak strength?
Gary: Within a year I went from 77 to 123 lbs on the snatch, and from 104 lbs to 159 lbs on the clean and jerk. Both of those highs came in 2016 when I entered the Georgia men‘s over-50 weightlifting competition. I placed first in the 50-55 years old over 115 kilograms.
Pam: That‘s amazing!
Gary: I had to take a break because I injured my shoulder in the same competition, but I am still gaining strength and I hope to compete again. I recently did 134 lbs on the snatch and 171 lbs on the clean and jerk.
Pam: Do you have any advice for people who have never done these things before? What is the best approach to learning this particular weightlifting technique?
Gary: Get a trainer.
I know it costs some money, but I always tell people to look at it this way: I grew up on a farm and the big thing about farming is that there’s never enough money. Whenever we needed help, my dad would say to my grandfather, “Do we have to hire somebody to do that? Can’t we just do it ourselves?” My grandpa would say, “A good hired person will never cost you money. They will make you money.”
A good trainer is always worth five times more than what you pay them. Their expertise and their knowledge ensure that you’re doing the movement correctly so that you don’t get injured. Among the older people I know, the most common reason they stop exercising is because of injury. Trainers minimize the risk of that happening.
Pam: That is an excellent analogy. What about once you have gotten past the beginning phase, what can you do to increase your strength if you are stuck at a certain level?
Gary: You do reach plateaus, and it can be especially difficult to overcome these if you are over 50, which is almost all of us. I think for that reason, it is often a small change that will make the most difference. One of the biggest increases in the amount of weight I could lift came after I changed my hand position. (To my last point, a trainer can help you identify and make those small adjustments.) My strength also increased when I switched my workout from the afternoon to the morning, and when I figured out how to line up my medication with my exercise schedule.
Pam: How precisely do you do that?
Gary: I take my medication either a half hour before I eat protein or an hour after I eat protein. So I take my medication at 6 a.m., have breakfast in between 7 and 7:30, and then I take another dose at 10, right before my GEM class. I go to that class four days a week.
Pam: Ok. This is actually a good moment to ask you about the scope of GEM outside of weightlifting because it seems to be much larger than that. My understanding is that it features a combination of activities that focus on improving strength, flexibility, and balance. Is that correct?
Gary: Yes. GEM is very multi-dimensional. When Michael designed the program he looked at all the latest exercise research surrounding Parkinson’s Disease, and put together a program with exercises that target the problems people typically have. We have people do ladder drills for agility and balance (stepping through the rungs of a rope ladder laid on the ground), weightlifting for strength and full body coordination, boxing, and a lot more. It‘s a very well rounded, comprehensive program.
Pam: As a coach you have a unique vantage point from which to see what specific exercises help people the most. For those people reading this who might already have an exercise routine, are there any specific, super-effective exercises from GEM you would recommend performing?
Gary: When someone comes in, we will look at what their weaknesses are, and help them tailor their GEM routine to address those problems. My suggestions here run along the same line:
If you are having balance problems, the snatch and the clean and jerk have helped me the most. If those are too complicated, or you cannot find a trainer to help you learn them, body weight squats can also be highly effective.
If you are having problems with rigidity and pain, I recommend trying stretching, specifically circular hip, ankle and knee rotations. When I first started GEM, I think because of my inactivity, a hip injury I had sustained in my army years started to hurt again. Stretching helped relieve that pain. Stretching is a component of fitness that I think is very easy to overlook, but it has made some of the biggest impacts for me.
Also, if you are frustrated, learn to box!
Pam: I’ve never heard boxing framed that way…
Gary: Yea, of course boxing is technically for strength and agility, but the emotional benefits of the activity are seriously underrated. People probably enjoy boxing the most out of any GEM activity. Sometimes we have ladies in their 70s and 80s come in, and they hear “put on your boxing gloves, we’re gonna hit the bag” and initially they’re kind of going “what are we doing this for?”
But when you ask them if they have frustrations—there is a moment of processing and then something inside of them changes. These ladies will come up to the bag and start knocking the heck out of it!
You are probably familiar with Rock Steady Boxing?
Gary: It is funny you mention that because when we were searching for a community exercise program back in 2015, the first program we looked at was actually Rock Steady Boxing. Unfortunately, the price was too high. Not everyone in our community would have been able to afford it. When Michael came up with GEM a few months later (which includes boxing plus an array of other exercises), our support group was actually able to work with a few dedicated Savannah County Commissioners to bring down the price of the program. Today, thanks to these officials, we offer unlimited GEM classes to PwPs for only $10 a month. People of all different physical and socio-economic conditions come to our class. For any community out there looking to create an exercise program, I recommend you reach out to your local government as part of the process.
Pam: That’s fantastic that you were able to do that. Ok, I want to make a big shift now and talk about your DBS because you consider that to be such an essential part of your success with the disease. I am especially curious because DBS is not for everyone, and it does have the potential for serious complications. But it’s important to hear about the benefits it can produce. What made you decide to have it?
Gary: Initially, when I was diagnosed they started me on Sinemet and Azilect right away. Day one, I was taking four pills of Sinemet. But within ten months, we saw an alarming progression: the amount of carbidopa-levadopa I needed doubled. DBS was a way to cut down on that, in addition to delivering some of its other benefits like reduced tremor and rigidity.
Pam: And when did you have the procedure?
Gary: Eleven months after my diagnosis…
Pam: Eleven months? Isn‘t that incredibly early?
Gary: That’s what I thought. Normally, people have to have had the disease for at least four years before they can receive the operation. I actually told my doctor that I didn’t think I was the right fit for it based on what I had read. My doctor explained to me that he and the neurosurgeon wanted to use me as a test case. If they could prove to insurance companies that early DBS could give a younger, fairly active person like me a higher quality of life for a longer period of time, they would be able to open up the surgery to people earlier on in their diagnosis.
After visiting several support groups and talking with close friends and family, I decided to go ahead with the procedure.
Pam: And what were the immediate effects?
Gary: I had to wait 30 days before the device was turned on, but when it was it had an immediate effect on my rigidity. I no longer woke up every day feeling like I had just finished hell week at my high school football camp. That was the most memorable physical change for me.
As expected, it also cut the amount of medication I was taking from two tablets four times a day to one tablet three times a day, and reduced my tremor to the point where I could do things like button my shirt and tie my shoes with ease.
Those were the concrete benefits, but I tell people the biggest benefit I got was the change in my attitude.
Pam: What do you mean?
Pam: What do you mean?
Gary: I hate to say this because it seems a little over dramatic, but when I realized I could do all of these small things, it was almost a savoring of the experience. I got my shoes tied today! I was able to button my shirt! The surgery acted as a wake-up call. I was lucky to have gotten these abilities back. I felt I needed to make the most out of the time I had with them and do all I could to preserve the other abilities I still had.
The other thing that happened was that I lost the ability to hide my PD. You can tell by my pictures that I am fairly “follically challenged,” and in the months following my surgery I had this gigantic scar from 32 staples in my forehead. Everyone could see what was happening, it was out in the open, so I did not have to explain it to people time and time again.
This lifted a huge weight off of my shoulders. Combined with my newfound ability to savor the physical functions I still had, this made me thankful, determined and fired up going forward.
Pam: How did this affect your life?
Gary: The first thing I told my doctor post surgery was that I wanted to do something physically that I hadn’t done yet. I had run a lot in the army, and I had always wanted to do a marathon, so I asked the coach of a local cross-country team for advice. He suggested I do a half-marathon.
He told me that if I ran between four and six miles Monday through Friday, and worked my max distance up on Saturday, then it would be doable. If you can complete 10 miles in training, the adrenaline from the race will take you the first and last mile and a half.
The Saturday before the half marathon, I did 10 and a half miles, and 90 days after my surgery I completed my first half marathon. Even though I do not run anymore, I still carry with me the ability to appreciate what I have, and the desire to work to preserve it. I thank my DBS for that.
Pam: I also want to ask you about the programming period, so that readers with DBS can make sure they are getting the most out of their devices. How do you know when your doctor needs to adjust your voltage?
Gary: I journal a lot. You know, Pam, I have a very bad case of a condition called they call “CRS” (Can‘t Remember S***!). So whenever I experience any abrupt worsening of my symptoms, or someone around me notices something, I go to the desk where I keep my journal and write it down. At the beginning of my programming period, I was mainly recording instances when my tremor would flair up without warning. That was usually a sign that my programming was slightly off. I would go in to see my doctor and we would look at the progression and frequency of the episodes, and she would adjust my voltage accordingly.
The interesting part came when the doctors gave me more control over the programming myself.
Pam: How does that work?
Gary: After about a year and a half of programming I had become more of an informed patient, and I started learning more about my body and how it reacted. Initially they only gave me the ability to adjust my reading two tenths of a volt. I could either go two tenths higher or two tenths lower. Today, I am allowed to increase or decrease my voltage up to one volt.
Pam: So you’ll increase or decrease almost based on the day?
Gary: Yes, absolutely.
Pam: What type of difference can that make in your movements?
Gary: The day after a super physically taxing activity, it can make a world of difference. The highest voltage increase I have ever given myself was 6/10 of a volt, and I did that the day after I ran a marathon. Then over the next couple of days, I weaned myself back down. Within about three days I was back to normal.
Pam: So that’s an example of a big voltage change. What are some smaller things on a day-to-day basis that you’ll change your voltage for?
Gary: Two years ago I decided to build an extra room in the shed outside my house. I noticed that when I was trying to climb a ladder, sometimes my adrenaline would spike and it would affect my balance. I was able to fix that by turning my voltage down two tenths. The funny part was that when I turned my voltage down, my balance would get better, but I really sucked at swinging a hammer. I would get all the way to the top of the ladder, but not be able to hit any nails!
Pam: So it’s a little bit of a puzzle to solve.
Gary: Yes. What I eventually figured out was that I had to gather my supplies, turn down my voltage, climb the ladder, relax on the roof for a few moments, and then turn my voltage back up before I started using the hammer. One day when I was up there, I invited a neighbor over to take a picture of me standing on the roof which I texted to my neurologist with the caption, “Nothing feels better than doing stuff that your doctor says you can’t do.”
Gary & Pam: [Laughter]
Gary: So I sent that to her and I received several derogatory comments. Lucky for me, I have a good relationship with my neurologist.
Pam: Do you attribute that to anything in particular?
Gary: Whenever I’m switching doctors I tell them I’m going to interview them to be on my healthcare team. And if their philosophy of things and my philosophy of things don’t match, then they cannot be on my healthcare team. You sound like you’re a very informed patient as well. I believe that making sure you have a doctor you like and enjoy working with, is the biggest thing you can do to maximize your well being with the disease.
Pam: Yes. I agree. I know that I don’t make any decisions about my health without my neurologist on board and I don’t accept any decision of hers without me on board. We have the same attitude.
OK. So I am about to wrap up, but before we finish, I want to ask you about one more thing. I know that as a veteran, it is a personal goal of yours to increase veteran well-being and support across the PD community. What ways might you do that? What are your ideas?
Gary: The first thing I would like to do, is to invite any veteran reading this to reach out to me. (See below.) There are a lot of things that veterans won’t talk about with anybody else except another veteran. We can communicate with each other on a deeper level, and that can be incredibly useful when you find yourself faced with a condition like PD.
The second thing I would say to any veteran reading this is that your training has given you the tools to manage this disease the best you can. I am not just talking about mental fortitude. Your discipline and your ability to regiment your life can help you in a major way. Every morning I do the same thing. I get up, I shuffle to the bathroom and I have my pills laid out. I take my Azilect, my first set of Sinemet, and an allergy pill so I can be around my dog. Then I turn on the shower, and wait for it to get warm. Generally speaking, by the time I get out of the shower and do my morning stuff, my meds have begun to kick in. It sends me into my day in a smooth and positive way. We‘ve also already talked about how I schedule when I take my medication, so that it best compliments my exercise and eating schedule.
I feel this regimentation has contributed to my success in a major way. Of course, people without military training can do this as well, but I picked up the habit from my time in the army.
Lastly, the VA in Dublin, GA just sent down four people to Savannah to become GEM certified, so there should be a GEM program starting in Dublin very soon. Look for it!
Pam: Thank you for your time, Gary.
Gary: Thank you as well, Pam.
You can reach Gary by email at firstname.lastname@example.org
You can find GEM at getexcitedandmove.com
You can find Michael Cohen at cohenweightlifting.com
You can find more PD Outlier interviews here.
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