SP writes with painful juicy honesty about her “journey of imperfection” and resilience, and was the third-place winner of the Stumptuous Fitness Model contest. Like all of us, she’s had her ups and downs, and also like all of us, does a lot of… ahem… experiential learning in nutrition, health, fitness, and life in general.

Which is why she’s awesome. So, please: enjoy.

–Mistress K

A Couple Good Reasons (and One Bad One) to Drag Your Crippled Ass to the Gym

…Or to the park or the track or wherever you like to get physical – I’m a weight-room girl myself, but it doesn’t matter where you like to get active, just that you’re doing something fun and challenging, something you want to do.

Ah, but that’s the trick, isn’t it? Getting able-bodied people to want to is hard enough, but making physical activity appealing to us crippled folks can be an even bigger pain in the ass. We have concerns that are not adequately addressed by exhortations to exercise solely for the sake of health (a word that be pretty loaded), and we have a hard time finding images of folks like us in ads for gyms and workout gear.

It can start to feel like physical activity is just not something crippled folks should be pursuing, and I think that sucks.

I’m talking to you, crippled reader: I want to get your ass in the gym. So, I’m going to say a few things about WOWC (working out while crippled) that you may not have thought of, and hopefully they will encourage you and I will manage to be helpful and not just obnoxious.

For the record: I’m a 32 year old woman with multiple sclerosis. My experiences are, of course, bound by the particular quirks of my own crippled body and may not always be representative of yours – we are each of us God’s unique, crippled little snowflakes, and what works for me may not always work for you.

And for the record: I use words like “crippled” a lot – this bothers some people. If you’re one of those people, I’m sorry.

Also: CRIPPLED! CRIPPLED! CRIPPLED! CRIPPLED! CRIPPLED!

Ok, you ready? Good. Now, first of all:

You’re not that delicate, princess.

“Oh no,” a friend said of my blackened shin and raw-hamburger knee. “What the hell happened?”

“It’s nothing! I just fell!” I said, and her eyes got wet and wide.

“Oh honey,” she said, collapsing onto my chest for a hug. “I’m so sorry.”

“I think I’ll survive,” I said, baffled, and spit out a lock of her hair. An aside to whatever god made me: Why are all my female friends shorter than me? And why does their hair love to send tentacles into my mouth like horny octopi? Jeeze.

People can be very reluctant to encourage physical activity for the sick and crippled folks they love. It’s perfectly understandable – you’re already kinda broken, they don’t want you to break further – but it can be a hindrance for the crippled beginner who is already nervous about taking on new physical challenges.

It’s also perfectly understandable for you to be afraid to hurt yourself, and when your fear meets the fears others have for you, it tends to grow. If your loved ones see your health as so fragile, so easily shattered, it’s hard not to feel the same way, and that can stop you before you start.

Good thing that’s horseshit.

You are not a vase or Gutenberg Bible or a gimpy little veal – you do not need to be stowed away in a box for protection.

On the contrary, you probably endure, on a daily basis, a level of pain and difficulties that most folks don’t (and that many don’t even notice). Activities that able-bodied folks can perform without thinking (getting the mail, taking a shower) require the care and meticulous planning of a casino robbery. You bust your ass just to get through the day.

You’re tough, in other words, and you can take it. Be smart and be honest with yourself about what you can do, be thoughtful and careful, but don’t live in fear of damaging your tender self. Yep, getting active means you might hurt yourself, but I’m not being flip when I say that can be a gift.

Getting hurt and recovering reminds you of how resilient your body is, and how tough you are. These are good things to remember.

Another good thing:

Cripples and athletes are BFFs.

(and that title is not meant to imply any sort of division between cripple and athlete – there are scads of crippled athletes out there kicking ass every day – but to reassure the crippled beginner who is not yet comfortable identifying as an athlete)

I wouldn’t have thought so when I was getting started, but serious athletes (amateur and professional alike) tend to be far more understanding and supportive than the general public. I’ve had people honk and yell at me from their cars for taking too long to shuffle across the street (with cane at my side, no less), but when I was dragging my crippled ass through Warrior Dash a few weeks ago, not one person complained about me holding them up or being too slow to get past an obstacle.

A woman at a café once stage-whispered to a friend that watching me add cream to my coffee with trembling hands was “disgusting and sad” (why she was watching me doctor my coffee at all is a mystery – I usually don’t stare at people in public unless I think I’ve seen them in a porno, and even then, I have the good taste to be discreet).

But in the gym, men who could snap me in half like a Kit-Kat will approach me to offer their shy admiration of my overhead press. The camaraderie I’ve developed with able-bodied gym rats is as welcome as it is surprising.

Athletes know what it is to push one’s body hard, to fight through pain and weariness. They respect you for doing it – even if it looks weird, even if it’s slow or sloppy. That being said…

It’s not going to cure you.

Most anyone with a chronic illness has, at one point or another, benefitted from the stunning reservoir of cutting-edge medical knowledge that friends, family, colleagues, acquaintances, strangers, grocery store check-out clerks, fellow bus riders, beauty school dropouts, and recently paroled arsonists moving in to the apartment downstairs all seem to have at their fingertips.

“Just don’t eat dairy, and you’ll be fine,” says a woman you once had to dissuade from using a butter knife to dig a wad of gum out of an electrical outlet.

“You need to start drinking raw milk,” says a man you’ve met that day, whose name you’re still not sure of (was it Jerry or Gary? Terry? Oh jeeze, this is why I don’t go to parties) and whose cologne makes your eyes water.

“There’s a doctor in Bolivia who’s curing people with bee stings,” says the guy who delivers your paper, “but you have to believe, or it won’t work.” He then excuses himself to go to his second job: selling baggies of oregano to gullible kids down at the middle school.

The sheer volume of unsolicited advice sick people get (and the arrogant tone in which it’s often delivered, as if your illness developed from laziness or stupidity) can be overwhelming. That’s bad enough, but I’m speaking from personal experience when I say that such advice can also break your heart. Being sick can make you desperate, and desperate people are willing to believe and try some pretty crazy shit. When that crazy shit doesn’t work, it’s devastating.

That’s why it’s important for me to be clear about this: getting active is not going to cure you. It may help your illness or disability – it may help a lot – but it also may not, and you, my beloved crippled snowflake, need to understand that and accept it.

The gym is not going to cure you. So why even bother?

Because your body is just like everybody else’s.

It can be hard to remember because your illness or disability sometimes feels like your body’s defining characteristic, but remember that your body is, in the ways that matter, the same a everybody else’s. It wants to move, to act with purpose and focus and silliness and joy.

Your body does not care that it can’t do the same things other bodies can, or that it moves differently, or that other people might think it looks weird – it just wants to do what it can do, whatever that may be. What’s different about you is not nearly so important as what’s the same.

Your body, just like everybody else’s body, wants to be used. Use it.

Now, she’s about to embark on a landmark expedition and a world first: a 1700km (1056 mile), 70-day ski journey. If she makes it, she’ll hold the record for the longest solo journey made by a woman in the Polar Regions; and the first woman in history to cross Antarctica alone.

Here’s a video overview of Felicity’s preparations. And you can follow her journey here.

I caught up with Felicity just before she left.

Q. What inspired you to do this mission?

Curiosity. When I read about the adventures of others I always wonder if I would be capable of doing the same.

Over the last ten years each of my expeditions has pushed me a little further mentally or physically, but I still don’t feel that I have reached my limit. I would like to know where my personal limits are – perhaps I’ll find them on this journey.

Q. What are the specific physical demands you expect to encounter?

Polar travel is all about endurance and stamina.

It’s a slow plod rather than a mad dash. I often think of polar expeditions as a war of attrition – each day out in the field the body gets a little weaker. It’s impossible to stop this gradual deterioration. It’s a bit like overtraining. You have to get the journey finished before your body gets to the point where it starts to break just through exhaustion and overuse!

As well as the distance and the weight pulled (my sledge will weigh around 80 kg [176 lb]), there is also the altitude to take into consideration (the South Pole sits at a height of over 3000 m [nearly 10,000 feet]) and the effect of sastrugi, uneven windblown formations in the snow.

These factors all take their toll eventually.

Map of Felicity's route

Q. How did you train/prepare for these expected demands?

I do a lot of low intensity training to build up endurance and stamina – things like dragging tyres and long hikes.

In the gym I concentrate on particular muscle groups. Squats and lunges prepare the muscles in my legs for skiing, while pulldowns work the muscles between my shoulder blades that otherwise get sore when using poles to ski cross-country.

Q. Why have you decided to make a solo expedition?

The camaraderie and challenge of working with a team has always been one of the elements of an expedition that I enjoy most. Much of my own determination and motivation during a journey comes from the team around me.

I want to know what happens when you take away that support.

What keeps someone going when they are on their own?

Q. Are there particular physical, mental, and/or emotional considerations inherent to a solo mission?

Travelling with teams in the past I have noticed that it is never the individual in trouble that notices – it is always someone else who alerts them to the fact that they are getting too cold, or behaving strangely. This is my biggest concern about travelling alone: there is no one to pick up on those early indications.

It scares me that I may not be able to rely on my own brain, on my own good sense. Instead I need to question all my decisions and make sure that they are made for the right reasons.

Q. What are the specific mental-emotional demands you expect to encounter?

Polar travel is much more of a mental challenge than a physical one. Success or failure has more to do with what is going on in your head than the size of your muscles.

On this trip I will be completely by myself for 70 days, which just adds to the mental pressure of the challenge. Keeping myself motivated and focused for that length of time on my own will be the hardest part.

The Antarctic landscape, although beautiful, is very monotonous. Sensory deprivation might become a problem as the brain begins to fill in the gaps – leading to hallucinations and disorientation.

Q. How did you prepare for these expected demands?

I have been working with a sports psychologist to prepare tools and techniques that will help with the mental challenges of the journey.

These range from visualisation – running through the expedition in my mind in fast-forward – to recalling imagery in great detail and including other senses, imagining smells or noises or tastes. It’s surprisingly difficult and takes some practise!

This is my first solo expedition, so I don’t know how I will be affected mentally by it. I’m lucky to have lots of support to fall back on, including some other women adventurers who have spent long periods of time alone and who have been quick to offer valuable advice.

Q. Why are you the “right woman for the job” here? In other words, what gives you “the right stuff” and confidence that you can/will pull off these crazy shenanigans?

Antarctica is a place very close to my heart and I am looking forward to being alone in that environment, but it’s also a very daunting prospect. Only after 10 years of travelling in the polar environment do I feel confident enough in my own ability and experience to take on a solo journey, so for me, the Kaspersky ONE Trans-Antarctic Expedition is a culmination of everything I have learnt over the last decade.

There is nothing inherently “special” about me. I have just been very lucky to earn the support of Kaspersky Lab, which has enabled me to undertake this journey and explore my own capabilities in this way.

Q. Imagine other women watching you as you progress: What do you want your “audience” to see, learn, and know about you? What ideas, messages, etc. are you hoping to transmit to those of us following your journey?

You can follow my journey through the expedition website (www.kasperskyonetransantarcticexpedition.com) where there will be daily tweets and podcasts from me as well as blogs, videos, pictures and an interactive map.

It is extremely motivating to think of people logging into the site every day to see how I am doing – I feel like I must cover some good distance so that there is something new on the map for them to look at!

I am often invited to speak about my expedition and I genuinely enjoy the simple act of telling a story, of engaging an audience – and it is hugely rewarding when someone who has heard your talk feels inspired to make a decision – be it to run a marathon, start an expedition of their own or make a major life change – to have that sort of impact I think is incredible.

I hope the message that is demonstrated by the expedition is that if you have an ambition the most important thing you have to do is to start on your journey towards making it happen. Then it’s just a matter of perserverance.

“Success or failure has more to do with what is going on in your head than the size of your muscles… If you have an ambition the most important thing you have to do is to start on your journey towards making it happen. Then it’s just a matter of perserverance.”

Magazine covers? Supplement ads? Images with no basis in reality? Imagined “perfect people”, captured two-dimensionally at the height of their aesthetic appeal or their competitive best – for a brief moment, only?

Who tells you what is OK? An imaginary critic? Or your compassionately honest, most authentic, loving-kind “best-self”?

For most women, the imaginary critic drives the bus, most of the time. Our world narrows to a tiny pinpoint of self-destructive energy.

But there is another way. Building true strength and self-compassion broadens our horizons, instead of constricting them.

This was strength athlete Gillian Mounsey’s journey, which she courageously shared on her blog, and the Starting Strength site. By turns painful, honest, and brave, it’s a must-read for any female athlete who wonders whether she is alone in the madness of performance-pushing and body angst.

I had the great privilege of speaking to Gillian about her piece (see below for interview). After I read her essay, I knew I had to hunt down this woman who shared her struggles while retaining her majestic dignity and brutal truth – and who, in the end, ultimately won the real prize: her self.

A gifted and powerful athlete, Gillian began her career as a gymnast before branching into short-distance running and bodybuilding. Eventually, she turned to Crossfit. Along the way, she punished her body with ever-more-stringent regimes. As she explained:

My entire life I took pride in being an exceptional athlete with strength and physical capabilities that were rarely − if ever − matched. At the time I supposedly looked my best, I had about 10% of my normal capacity. In short, I had starved myself to the point of destruction.

During CrossFit workouts my intention was to crush myself to a point of physical illness everyday, hardly a means of respect. I based the effectiveness of my workouts on the length of time I had the shakes after a workout.

Despite an incredible ability to deliver the goods, she nevertheless suffered.

She became obsessed with her weight and body fat, and sustained several injuries and precipitous drops in performance. At one point, she herniated 5 cervical and thoracic discs from a combination of excessive volume muscle-ups and a very high rep, heavy barbell workout performed for time with extreme fatigue and faulty mechanics.

The downhill road through body madness ended at a certain Mark Rippetoe’s gym, Wichita Falls Athletic Club (WFAC). There, she says, she was taught to respect herself.

Training [at WFAC] was very methodical. As a result, I couldn’t wait to get back in the gym each session, learn more, and do just a little better than I had done the day prior. I was excited to be a weightlifter, and I never once thought about what I looked like over those ten days. Instead my mind was occupied with learning and working towards a goal. I had the time of my life.

I learned to respect myself as an athlete. I learned to appreciate the gifts that I have been given and the abilities I worked very hard for, rather than to dwell on the things I do not have. I learned to train with purpose rather than for atonement.

Thanks to Coach Rip’s careful and compassionate yet uncompromising attention, Gillian blossomed. She put on 14 pounds more, after gaining back 20 lb she’d put on after being dangerously underweight. She stayed lean. Her energy skyrocketed.

But most importantly, she now believes in herself – and her mission to share this with other women.

I am my own worst enemy when it comes to being the athlete that I could be. I know the amazing things of which I am capable, and now I have to stop standing in my own way.

Well, it’s not the piece I originally sat down to write.

Originally, I’d written a shorter piece for my own site. I wanted to talk about how my experience at WFAC was life changing. At that time, I didn’t get into my background. I pretty much wrote this for the girls I coach. I wanted to teach them about things like diet and training, and educate them about how to do it in a healthy way.

I wanted all these women to see that there was another way out there. They all struggled with their body image, and their whole self-worth was tied up in what they looked like.

So, it started out as kind of a fluff piece. And got deeper from there. It came out of nowhere, just from sitting down to write.

It was really a culmination of several years down the path of Crossfit, trying to be a teacher and educator, trying to do right by others, while having my own struggles as well. Many of these things I don’t normally share with clients. This let me open up to them. Now they know I go through what they go through.

Q. What is important for women to know?

They need to know that a fitness program can be safe, effective, and fun. I harp on things like performance, results, and measurable goals. Unfortunately so many of them stay focused on body image stuff and feel like failures.

I realized it was important to let other women know that we’re all in the same boat, and that it’s a constant struggle. A constant battle. At first I thought it was weakness, to let them know that, but then I realized it made me more authentic.

Now, I educate them, let them make their own decisions, and provide a support network. I help them clarify their goals and put it into a program where they can progress.

Nobody’s perfect. You’re not going to just wake up tomorrow and not care about the superficial things. When I started down this road in April 2011, I was terrified about gaining weight. I would go into the gym, and afterwards I’d know I had to eat, and I’d do it, and I’d think, This isn’t for me.

I went back and forth with that. You need other people around you to support you and keep you focused and balanced. It’s very hard to do it alone. So you need to ask for help.

Q. What are some of the challenges in developing a healthy body image and athletic practice?

In part, it’s about what you think gets rewarded. In WFAC I was rewarded for being strrong, and for what I could do, relative to me. How hard am I working compared to what I’m capable of, emotionally, psychologically, physically? That should be what good judgement is based on.

Unfortunately in many gyms, women still judge each other based on what they look like. Even if a woman has an incredible deadlift, impressive pullup numbers, and a 6-minute mile, she’ll often turn around and say “I want legs like So-and-So.”

But you can only be the best version of yourself.

Q. Where do you think some of your own challenges came from?

Well, it’s easy to blame the activities I did. I never meant to blame Crossfit, for instance. They never said do what I did to myself. It was the mix of the culture of Crossfit and what was inside myself that allowed me to continue down that path.

If you’re someone for whom self-worth is contingent on performance, it’s really easy to go there.

And in the Crossfit context, we see some incredible athletes and bodies, there’s a body type we see again and again as the ideal. And it’s Crossfit – there’s no air conditioning, people walk around in very little clothing. In a Globo gym, by contrast, people have to wear shirts and shoes and whatever. So at Crossfit you’re surrounded by these super-fit bodies. And really, do they care about times if that girl looks amazing?

Yes, they recommend sensible nutrition, but if you wanted, you could take it to an extreme. Anyone with this competitive, self-critical mindset could pull somethig negative from what’s intended to be positive.

And for me, performance has always been important, to a fault. I left Crossfit because I had a bad injury. I’d die before I’d fail. This became somewhat of a negative, as you can imagine. I didn’t know when to quit or ease off.

But you only get to abuse your body so much. I’m in my mid-30s and I’d like to have children. I can no longer continue to compromise my body like that. I’ve talked to doctors who say if I keep this up, I might not have kids. Again, you only get to abuse your body so much.

I had a really hard time stepping out of that high-performance athlete role to be a coach, educator, and role model. I’ve struggled with this most of my professional life. But if I’m really going to teach people, I have to be an example.

Q. How did people respond to the piece?

Overall, mostly positive. People close to me, who know how private I am, were surprised that I’d shared so much.

Mostly, people celebrated that I said all that stuff. Men said they were reading the piece to their wives. Husbands and coaches of female teams said that women needed to hear this.

A lot of Crossfitters came forward confidentially to say they were dealing with similar things. The problem is that so many ex-athletes found Crossfit as a way to give expression to their athleticism, so they pursued it with the same energy.

But it’s not a sport, it’s competitive physical fitness. There’s no clear definition about what we’re training for, so it’s easy to try to excel in all domains – how do I train for everything and anything? A lot of athletes get disillusioned and hurt. They wrote to me and said they felt the same way I did. Unfortunately, they’re stuck, like me.

People are still struggling to find themselves. As athletes, you get very little transition into a new role. I started gymnastics at 2, so you can imagine – it was my whole life. I mixed my hobbies, career, and passions. I didn’t know what I could do if I couldn’t train.

Bodybuilding and Crossfit were initially that continued expression of being an athlete. For me, with my background, with my personality, they just ended up being more negative than positive.

Q. What’s next for you?

Now, I see myself as a weightlifter. I’ll do it as long as I enjoy it, and as long as it stays positive for me. I would love to lift in the Olympics, but if this hurts the people around me, or stops becoming fun, I’ll move on.

I’d like to do a Highland Games event, then an Olympic lifting meet. I’ll try some strongman stuff. I want to be fit to compete in anything that’s fun. When it’s not fun, it’s time to go. The more activities I try, the more I can share.

This whole journey has been about continuing to step outside of myself. None of the things I encountered were bad things. I just went down a bad path with them.

I’m getting to know myself. I realized that obsessive dieting is a means of self-control: when things get crazy in my life, I can control what I look like and my body.

On the other hand, with weightlifting, I can’t be in there and be weak. If I don’t eat that day, then I don’t lift well.

Now I realize I’m more than just a lean body or a great athlete. I’m a wife, friend, sister, coach… I’m connected to other people. I surround myself with people who keep me sane. All these things come first now. I need to keep that big picture front and centre. I will never work “at all costs” again. I will never put a sport first in my life, ahead of people.

I wish I could take my female clients and 19 year old step-daughter to WFAC for a day. I want to show them that satisfaction, happiness, and sense of achievement is derived from dedication and effort put forth toward a tangible, performance-oriented goal.

The intrepid Neil goes forth and conquers.

First, check out his cameo in Gabriella Rogers’ Living With Parkinson’s. Neil is featured prominently as evidence of the power of heavy and consistent weight training as part of a Parkinson’s treatment plan. Yay Neil!!

april 2011

A missive from Neil, April 11.

My occasional pieces in Stumptuous are commentaries on my exercise habits. They are not recommendations but accounts of what I’ve found possible while living with Parkinson’s. No-one should commence a vigorous exercise routine without having been assured by a medical practitioner that it’s safe to do so.

[Krista's editorial comment: In this case, I recommend healthy skepticism about "doctors' advice", given that until recently, much of said advice has involved "Lie down in God's waiting room, read some old copies of Readers' Digest and await your termination; there's a good boy." Go kicking and screaming all the way, in my opinion.]

Mandy has left a question on part 1 of my blog. Calls me a dude, and says it’s about time for an update. (Is being a “dude” complimentary or a putdown?) Mandy, you’re an impatient woman. I most recently reported in December 2010. But thanks heaps. It made my day to learn that someone’s interested in my situation.

Parkinson’s disease intrudes in nearly all I do.

The timing of daily chores is dictated by timing of my medication. Minor activities of daily life such as doing up the button at my collar and knotting a tie are reserved for when medication is likely to be functioning. Clients are seen when medication is most likely to be “on.” Sleep is fragmented; I’m usually awake between 3 am and 6 am before lying down for a final hour.

Respite is found in vigorous exercise during four sessions of around 55 minutes each week.

Monday night this week was bliss. The day had been dreadful. An unusually heavy workload in my daytime occupation plus concern regarding deadlines led to severe shaking. Arriving at the gym around 9 pm, a fellow member asked if I was O.K.

After 10 minutes cycling, 15 minutes rowing increasing pace to flat out, and 25 minutes lifting weights my body had become “normal.” What a feeling!

The impediments of PD drift away as I pick up pace. Dr Parkinson becomes briefly anonymous.

In indoor rowing, indoor cycling, and pushups/situps/unweighted squats competitions at the gym there’s no “PD” alongside my name on the printed results. My biggest handicap in the “55 years and over” events is being 65.

This Wednesday, I rowed for eight minutes, starting slowly then increasing pace to a 1 minute 44 seconds/500 metres rate in the final 30 seconds. On the decline bench, I started with 6 x 80 kgs and finished with 1 x 110 kgs (242 lbs).

Horizontal bench is being avoided until slight soreness in my right shoulder goes away. I’m told that my speeds on the bike and in the rower along with the weights I lift are unusual for a man of 65 years.

I was diagnosed with PD in 1998 and commenced gym activity in 2000, at age 54. Apart from possessing a set of 120 lbs weights and a weightlifting bar in my final year at school and occasionally attending the uni gym in my late teens and early twenties, I’d had no lifting experience.

My training regime differs from exercise undertaken by many with Parkinson’s in that it

• was commenced, and continues, for overall health and physical fitness rather than as therapy for Parkinson’s;
• is conducted in the company of the general public, not a specifically Parkinson’s group;
• follows targets and programs set by myself;
• demands close to maximum exertion;
• assumes that exercise = flexibility + aerobic “stressing” (pushing heart and lungs) + strength and “strength” means to maximum capability.

In January 2000 I was overweight and unfit and decided to do something about it.

I was met at my first gym session by a cheery but tough lady who pushed me hard in my first months. Sweat is my main recollection of 2000. By 2004 I’d realised that sweaty training sessions bring me temporary relief from tremor and rigidity.

“Bradykinesia,” slowness of movement, is one of three major symptoms of Parkinson’s disease. Weakness is included by some as one of numerous other symptoms. (See link below to article by Falvo, Schilling and Earhart.)

What’s going on in my case? Can intense physical training from soon after diagnosis overwrite symptoms? To what degree do shortcomings in speed and strength of many living with PD simply reflect lack of fitness resulting from a lifestyle cocooned from physical activity?

My training follows six separate programs, one per session. There’s nothing magic about the number six. It simply ensures specific exercises aren’t repeated too soon.

I lift lower repetitions and “heavier” weights rather than higher reps and lower weights. Higher reps cause me soreness. I’ve not been injured unless a painfully stiff neck for a week around seven years ago could be rated an injury.

In February 2004 I read an article online in a gym equipment journal describing a training program for a gentleman with a terminal neurological condition. The author was Dr Krista Scott-Dixon.

I emailed Krista, complimenting her for what she was doing and recounting my own situation. Krista kindly suggested some exercises. Exchanges continued for several years before Krista asked whether I’d agree to my accumulated commentaries being transferred to her Stumptuous website. That’s how I come to be here.

What does a Google scan of the literature tell us? It tells us that professionals’ opinions have moved a long way since first coming to my attention around 2003. Mainstream advice told me then that, having Parkinson’s disease, I should not exert myself and not lift heavy weights. I was classified as a “patient.”

Times they are a changing!

Dr Lee Dibble in 2006 reported:

“Persons with mild to moderate PD can safely and feasibly participate in high-force eccentric resistance training.”

Drs Falvo, Schilling and Earhart in 2008 developed the case for a resistance component in Parkinson’s therapy.

They noted:

“…we…..question the rationale behind current exercise prescriptions. The absence of reports contraindicating resistive exercise, the potential for positive adaptation, and the noted benefits of resistance training in other populations may provide support for its inclusion into a treatment approach to PD.”

Dr Schilling went a little further in 2010 (click to download full text in PDF)

“Conclusions: Moderate volume, high-load weight training is effective for increasing lower-body strength in persons with PD.”

Researchers seem reluctant to investigate the benefits of upper body strength. Don’t people who topple over grab for something? Wouldn’t their chances be improved if their arms are strong enough to support them?

Rodrigues-de-Paula and Oliveira Lima, in summing up where physical therapy currently stands in relation to Parkinson’s disease, say this:

“Thus, it is possible that high-intensity exercises are most desirable to minimize the progressive dysfunction of PD. However, since individuals with PD have a lower physical fitness and are often unmotivated to practice physical activity, it is necessary to raise awareness about the use of high-intensity exercise in their treatment, since such exercise will require more physical effort which could lead to individuals’ fatigue.”

(Rodrigues-de-Paula F, Oliveira Lima L. 2011. Physical Therapy – Exercise and Parkinsons Disease. In: JH Stone, M Blouin, editors. International Encyclopedia of Rehabilitation.)

I fully agree. Has professional opinion caught up with what those who live with Parkinson’s disease and who exercise vigorously long realised?

Neil

Sydney, Australia

(I train at Aquafit Fitness and Leisure Centre, Campbelltown, NSW. Australia.)

june 2011

Neil is featured in a video created for Professor Bastiaan (Bas) Bloem, a world-leading neurologist in the field of movement disorders. In this video, Neil runs through some neurological tests and gym exercises, demonstrating some of the form that won him university freshman 100 m sprint champion in 1964.

At age 65, Neil bench presses, busts out some weighted dips, and scorches through some biking and rowing. Parkinson’s or no Parkinson’s, this man is in damn good shape.

october 2011

Dear Krista

The New York Times this week highlights Dr Jay Alberts’ research into intense exercise for people living with Parkinson’s disease.

Alberts is well-known for promoting “forced” exercise for people living with the condition. We who live with Parkinson’s haven’t been thought capable of pedalling a bike sufficiently quickly to reach the threshold of required intensity. We require “forcing”.

Dr Alberts now appears to concede that we may be able to reach the necessary speed. The critical factor is that we perform beyond our comfort zone. It needn’t be a bike. “(Try) cranking up the speed on your next treadmill session, until you are outside your normal running comfort zone.”

Dr Alberts has argued that people living with Parkinson’s can’t “normally” (i.e. “without being forced by a tandem rider or motorised assistance”) sustain for at least 40 minutes a pedal rpm beyond 60. Shaky man can do so. Further, in brief sprints he’s reached 140rpm. (See his second video.)

Why read NY Times? Stumptuous since 2005 has brought you shaky man’s observations of how intense exercise impacts his Parkinsonian symptoms. He’s been ahead of the pack.

Shaky man is near the end of ten weeks with an imaginative, demanding personal trainer.

Speed lifting weighted bars to his shoulders. Repetitions of shot put action, done explosively, with bands. Push-ups while holding Roman rings. Many step-ups on to a box while carrying dumb-bells. Boxing. Aerobic effort beyond what he thought possible and well beyond what he’s performed on his own terms.

This week, returning after a week spent with influenza, he was asked to ride a slow, general use bike (with TV set mounted on handle bar) flat out five reps of one kilometre with exactly one minute rest between each rep. He was told to keep a constant pace but, if variation, ensure the final ride was quicker than the first. Shaky man timed 1 min 40 secs, give or take a few secs, for each.

Then trainer took shaky man outside gym. What to do? To walk around perimeter of gym three times, running the final side of each circuit as hard as possible up a 150 metres road bordering the gym.

“Remarkable,” said the trainer.

Shaky man went home elated and temporarily free of Parkinson’s symptoms. He felt terrific!

All the best
Neil

november 2011

Dear Krista

Encouragement plays a huge part in lifting my spirits and performance.

The three main motor symptoms of Parkinson’s disease are slowness, tremor, and rigidity. A fourth is postural instability. There are many other symptoms. Weakness is frequently listed. See the Swedish Parkinson’s Association’s YouTube for non-motor symptoms. (Shaky man’s blog, December 2010.)

Its cause is unknown. There is no cure. No medication slows its progression. Why not give up when diagnosed? What’s the point of training?

Several months ago my training was in a rut. My programs had changed little for several years. A video from June 2011 shows me shaking near uncontrollably, largely from fear of not reaching expectations.

Fitness instructor Danielle urged me to higher rowing and cycling speeds in the video than I’d thought possible on the day. Her confidence lifted mine.

Determined to rise from the rut, I engaged a personal trainer for ten sessions. Tony was demanding but, given his care in preparing my routines, the least I could do was give one hundred per cent when he called for it.

When asked to run 3 x 150 metres, I did so despite having bid farewell to running about two years ago.

“Remarkable for your age,” said Tony. Enthused, a few nights later I drove to a local rugby field and sprinted… no, “sprint” may be fanciful… five or six times between try lines. From try line to try line is 100 metres. Only a sudden pull in my right hamstring stopped me.

My strength is on the up after declining in the first half of this year. I hoisted 100 kg (220 lb) off the horizontal bench recently. The young gym member who spotted denied he touched the bar although I have my doubts. A day or two later the same fellow agreed to increase plates from 90 kg to 95 kg on the decline bench but instead raised them to 105 ks and watched me battle to heave them upward.

Recently I failed at my second last task of four rounds of strength and aerobic exercises. The task was to press a 25 kgs dumb-bell 10 times on each arm while lying on the horizontal bench. The fitness instructor on duty dragged them off me.

Exhausted, I moved to the rower for my fourth and final round of rowing 300 metres flat out. I propelled it with all remaining energy.

“Machine!” (my nickname with the young people) called the fitness instructor, urging me on. Finished! Average pace 1 min 40 secs/500m. My quickest round! Very fast for a man of nearly 66 years of age.

How did I manage that? Someone special had pushed me beyond what I would have accepted on my own.

As a person with Parkinson’s, I’m unable to sit up when lying on my back. Many times as I’ve struggled to get off a bench, a hand has given my back a shove and rendered me upright. Such random acts of kindness are frequent.

The great majority of those around me in the gym are in their teens and twenties. “Awesome” is typical of their vocabulary. “Moderation” and “Don’t overdo it” is the vocabulary of members closer to my age.

Some in the Parkinson’s community have told me that my physical capability thirteen years after diagnosis is due to “luck” or my brief involvement, long ago, in athletics. It’s nothing of the sort. It comes from:

• not complying with others’ expectations of how a person with Parkinson’s should exercise;
• accepting personal control. I seek out and benefit from the knowledge of others, but what to take on board is up to me;
• hard training;
• unyielding friendship and encouragement of those with whom I associate. Krista, you and those who’ve responded to my jottings in Stumptuous are at the top.

I wanted you to know.

Neil

Here’s my answer: Throw all that shit out.

“Gain muscle” and “lose X lbs” and “run a marathon” and “do a million pullups” are all great goals but if you’re an average person who just wants to feel, look, and perform a bit better, it doesn’t fucking matter because you need to get into better overall shape and eat better, period. I guarantee it.

Throw all that detail shit out. Stop reading the goddamned interwebs and magazines. (Except me.) Stop distracting yourself with crap.

Then focus on this ONE goal:

Get as fit as possible while nourishing yourself — truly, deeply nourishing yourself — as well as possible.

Forget about calories and focus on making every bite of food you put in your mouth the best possible quality — the most nourishing; the most lovingly prepared; the most mindfully eaten; the freshest and realest; the most full of vitamins and minerals and other good stuff. Don’t skimp on your protein, colourful fruits and veggies, and good, real fats. (Yeah, that includes egg yolks and butter.)

Eat slowly. (This piece is so profoundly important I should almost write a book and charge for it.)

Forget about workout details and focus on this: Jump high. Run fast. Hit hard. Build a heart-lung-muscle engine with lots of power and work capacity. Be real with your movements. Recover hard — guard your sleep and your playtime like a starving dog guards a steak.

Forget about getting the macronutrients perfect and focus on how you feel when you eat. Does what you eat make you feel light yet powerful? Does it make you feel like you could beat down Mike Tyson and every virus in the world? Are there, as my gramma would say, roses in your cheeks? Do you eat with joy and care and a deep, abiding sense of love and self-nurturance (which is not to be confused with “I deserve this piece of sugary chemical shit because I had a bad day!”)?

Do this consistently — every day — to the very honest best of your ability and don’t bullshit yourself about what you’re eating or whether you put in your most earnest effort.

Everything else is irrelevant.

She’s lost (and maintained) a total of about 55 pounds to date (~15 more to go). She started doing athletic stuff about 5 years ago, and started lifting two years ago. She’s now handcycling, swimming and racing regularly. She did her first 10K as a wheelchair racer in May 2010 (in the Bolder Boulder, one of the biggest 10Ks on the continent — the wheelchair racing contingent was very intimidating, she says), and her first sprint triathlon in June.

Here’s her story.

Starting out

As a child and young woman, I was pretty much full of self-loathing.

I was overweight (although not as overweight as I thought I was) from my early teenage years on. I worked hard to disassociate my body, my physical self, from my essential self.

My husband, on the other hand, defined himself almost exclusively as an athlete. He ran marathons and did triathlons, he watched what he ate, and he treated his body as a valuable resource that needed to be taken care of. Out of love for me, he begged me to start doing something, anything, physical, but I wasn’t buying it.

Then, in 1994, I was diagnosed with MS.

I was 34 years old, I had 3 young children (ages 8, 6 and 4) and I was in graduate school, working on my master’s degree in Computer Science. To top it off, at just about the same time, my father-in-law had a severe stroke resulting in a move for him into a nursing home, so the entire family was focused on dealing with that change.

At the beginning, I concentrated on not letting MS get in the way of anything else: “Oh, yes, I have MS, but look! Over there! A butterfly!”

And the early years of MS can be very deceptive—between attacks you may feel fine much of the time, which can lead to all sorts of mind games about whether you really have the disease or not. When I was having symptoms, I lied about it a lot: “I twisted my ankle,” or “I fell down the stairs.” The few times I tried to talk to anyone else about it were confusing and frustrating; I was all over the map about how I felt about it, and I’m sure I telegraphed my bewilderment to everyone else.

When I was diagnosed, the prevailing medical wisdom was that exertion was bad for people with MS.

There’s some basis in fact for this—people with MS, even if they are asymptomatic, generally fatigue more quickly than people without MS. For many people with MS, fatigue is a primary and very real symptom. Many people with MS are very sensitive to small rises in core body temperature; increased body temperature can cause an alarming (although temporary) increase in symptoms. My doctor at the time told me to rest as much as possible, and as a dedicated couch potato, I had no trouble following that advice.

I think it’s different for newly diagnosed MS patients now. When I was diagnosed, there were no disease modifying drugs (DMDs) in common use. Today neurologists try to get all patients started on treatment right away, and most of the current DMDs are injected. It’s hard to forget that you have a chronic neurological illness when you’re injecting yourself every day (or every other day, or every week). That’s got its drawbacks, too, of course.

Deciding to change

After several years of “resting as much as possible” I was even more deconditioned than I had been before.

My weight had already ballooned with each pregnancy, and now I was well into “obese” territory. I can’t tell you whether my physical deterioration was due to MS, overweight, or lack of exercise, but I can’t believe that being overweight and sedentary helped.

And I was deteriorating, by fits and starts. Just after Christmas one year I was standing in the kitchen, and I turned to stir something on the stove, and I just slid to the floor. My husband and son had to pick me up and carry me to bed, and I couldn’t get up by myself for a couple of weeks. And I thought, “Someday someone is going to have to lift me in and out of bed every day, and weighing over 200 pounds isn’t going to make that any easier.”

So I lost weight. (Wow, doesn’t that sound easy?) It took two years, several nutritionists, and logging every bite I put in my mouth to lose 45 pounds. No exercise. But — with 20% of my body weight gone, I could walk around a block with a cane instead of crutches. My legs didn’t swell up by noon every day. Was it because I lost weight, or because my MS was remitting? Does it matter?

My MS progression didn’t stop, though. I was already using a wheelchair at work, and within the next couple of years I was using it almost full time. Using a wheelchair, even when I could still walk short distances, conserved my energy to do other things besides get from point A to point B.

About six years ago I bought a handcycle, which is an arm-powered tricycle with wheels. I didn’t have any training, or anyone to talk to—I just rode the handcycle a little further each time, when I could, and did the same in my wheelchair. I discovered that I was proud to push further today than I had pushed last week.

Now, even though I still can’t walk, I think of myself as an athlete, which is something I never thought I would be. I’m proud of my abilities, and I want to push to be able to do more.

Learning what I need

There’s really very little information in the way of scientific or clinical studies on the effects of exercise on people with MS. I decided to not worry about that, and go with how I felt.

When I started lifting weights, I would go home and go to bed for the rest of the day. It was months before I could both lift weights and do something else the same day (like get up for lunch). I decided that that was ok—that it was going to take me longer to adjust to lifting than it took able-bodied people, and I would just go with that.

Time and energy were both huge barriers, and I didn’t start working out effectively until I stopped working full time (I work three days a week). Even now, I don’t see how I could have done what I’m doing had I still been working full time; I just don’t have enough energy for both, thanks to MS. So switching to part time work means that I’m prioritizing my body, my health and my strength over money and the satisfaction I get from working. Not everyone can even afford to do that.

On a practical level, people with disabling chronic illnesses may need all kinds of support they may not have in order for exercise to be practical—mobility equipment, accessibility of facilities, transportation options, the acceptance and understanding of family and friends.

I wish I understood whatever switch flipped in my head to move me from all the reasons I believed I couldn’t work out to where I am now, but I don’t.

My activity now

Now, I lift weights at a city gym with a trainer. When we started, my trainer didn’t particularly know anything about MS, but he’s willing to learn, and (luckily for me) he seems to have an innate understanding of how far I should push myself. He’s good at recognizing, even before I do, when I need to scale back or take it easy. He’s creative about adapting exercises to what I can do.

I use free weights almost exclusively. I don’t know how much of a badass I am at weights – I can bench press 70 pounds 20 times. I love lifting weights, hate to miss a session, and really like having muscles I can see :-).

I handcycle. I want to be able to tour, with able-bodied cyclists (i.e., my husband and friends), but the hard reality is that I’m never going to be able to go as fast as even the slow cyclists. Mentally, that’s difficult for me to accept.

I race. This is my first season wheelchair racing, and I really enjoy it. I need to get more mileage and more hills in, and enter more races. How badass am I? Well, out of 15 wheelchair racers in my first (and so far only) 10K, I came in last. But I was really pleased with my time.

I swim. I started swimming last fall, and it’s one of the few sports where I actually can go as fast as (some) able-bodied people.

Participating in adaptive sports is interesting. There are so few of us, and our abilities and disabilities are so different, that it’s hard to figure out where you stand, badass-ness-wise. If you’re a 45 year old woman running 10Ks, you can find thousands of other people to compare yourself with. If you’re a 50 year old woman with MS doing 10Ks in a racing chair, actual competitors are few and far between.

But this same phenomenon works the other way, too — if you’re a 42 year old cyclist, you’re unlikely to find yourself in the same race (much less the same heat) as Lance Armstrong. But I’ve raced on the same track with Paralympic gold medalists (which is really daunting, by the way – talk about being dropped in a heartbeat!).

Really the only way to approach it (and stay sane) is to recognize that you’re competing with yourself, with your own previous performance.

I want to get better at racing and handcycling, and enter more races and triathlons.

Advice to others

What advice would I give to other folks learning to manage a chronic illness or disability?

Accept the fact that you may not be able to do whatever it is you want to do the same way you would have done it if you weren’t disabled, or if you didn’t have a chronic illness.

Once you’ve got the acceptance part down (and you’ll probably have to do that over and over again), find another way to do it!

Find the other people in your situation who are doing the things you want to do and learn from them.

The most pervasive myth was the one I bought into for so many years, that people with MS can’t (or shouldn’t) exercise. The dumbest things I heard, in fact, were the things I was telling myself—that there’s no way to do this, or that it’s unacceptable to compromise in order to do it. I’m still wrestling with the myth of independence and the belief that I should be able to do all this stuff without any assistance from others.

Once I started exercising, I experienced nothing but support and encouragement from the able-bodied (and otherwise) athletes around me. Sometimes this support can veer dangerously close to the “you’re so inspiring” trope, but even then, people’s hearts are in the right place.

I’m having a good time and I feel like a new person. Your website has helped validate my decisions to do this stuff.

Thanks for the site. I came upon it when looking for inspiration as a small, stumpy female grappler, and boy, oh boy, inspiration did I find! I have been involved in 2-3 sports my whole life, but still 30-40lbs (!!!) overweight.

Why? Oh, I dunno. Maybe the feeling of deserving my chicken tenders and french fries after a hard run, or the giant bowl of pasta the night before. Or maybe it’s the emotional connection to food after a bad breakup my senior year of college. Or maybe the fact that I was repeatedly told to starve myself and run 15 miles a day if I wanted to feel thin — never mind those weights. Just move along.

So, Krista, thanks to you, I’m telling all of those douches to fuck off — by getting super fit a la your advice, and squatting myself into emotional independence. Oh, also, I started about a month ago, and have lost 4 lbs. But that’s not the best part — I’ve doubled the amount of weight I can squat, and I’ve had some major breakthroughs in jiu jitsu. Plus, I have enough energy left over to take up another sport.

Circus acrobatics, here I come!

As my arms, back and core become stronger, I’m now adding to my circus arts repertoire: flying trapeze. Now I can work on my muscles from 30ft in the air! It sounds terrifying because it is terrifying.

All the best,

Michelle

P.S. I’ve attached a picture of my first launch – notice the terrified grimace on my blurry (moving!) face. I’ll send more impressive ones in the future – like videos of my first knee-hang and backflip off the bar.

I’m on my way to NYC Black Box where Allison Bojarski will train me for a day. Allison is kind enough to regularly link to my blog from her site, and suggested I get in touch with you. Allison thought you may like to know there’s another writer out here who’s as into lifting as I am (fairly obsessed, to be truthful).

This Friday marks one year from my first workout — it was at Derby City CrossFit with coach Ben Carter (who now trains me in a garage).

Long story short: I went from a completely out-of-shape desk-bound food writer to having competed in the USAPL Raw Nationals last month and breaking the APA squat record for 105s in June with a 180 squat.

Your blog mentions liking before and after pictures – here’s a fairly dramatic one.

I’ve also written some pieces on heavy lifting for women over the past year — one for blisstree (“I Heart Powerlifting“), one coming out in Experience Life magazine next spring, and a couple locally.

As part of my planned celebration of my “birthday” this weekend, I thought it would be fabulous if you were to mention me/link to me as you see fit. My training blog is It’s Always Going to Be Heavy.

Thanks for reading this missive, and for all the help you’ve been to me over the past year. There are woefully few great writers in fitness, fewer still women and lifters so I’m glad I found you early on.

Best,

Dana

july 2009

Neil has an article about PD and exercise (PDF) published on the Parkinson’s NSW website.

october 2009

Dear Krista

Look at this, from the Fall 2009 Newsletter of the venerable Parkinson’s Disease Foundation.

http://www.pdf.org/en/fall09_exercise_parkinsons

Yes, it’s the intensity that is critical.

This is the opposite to the “take it easy and don’t tire yourself” adage that remains the conventional message put out by professionals to those living with Parkinson’s disease.

While reading Dr Petzinger’s article I had a brain flash back to a lecture theatre at Sydney University in the 1960s when a professor of Australian History remarked, “Although we say that So-and-So were the first to ‘discover’ such-and-such place, it was often the case that So-and-So were the official party dispatched by the authorities. When they’d arrive at such-and-such place, they’d often find that common people had long discovered the place and had settled there.”

november 2009

Mistress Krista

I need to row an extra 10 metres, 574 metres to 584 metres, in two minutes to recapture the lead (Men’s 55yrs – 64yrs) in the Two Minute Rowing Challenge at the gym I attend.

Neil tackling the rowing

The event is a time trial held between Monday 2 Nov and Saturday 14 Nov.

I had my first and so far only attempt last Monday 9 Nov, rowing 574 metres and displacing another competitor on 571 metres. Other men were a long way behind.

Tonight (Wednesday 11 Nov), a fellow who I see training mainly on the treadmill at a steep incline achieved 583 metres. (He’s 58 years old.) With his aerobic capacity, he’d probably stroke faster over the rear end of the race than I do. My rate seemed to start out at 38/min, fading to 34/min at the end. Resistance was at max.

Contestants may have as many attempts as they wish between 2 and 14 Nov.

I feel lured to give it another go.

Have to improve my distance by 1.57% to tie.

Another way of looking at it is that I’ll need to be about 1.9 seconds ahead of where I reached at 2 minutes on Monday.

In terms of strokes, it seems I only need to increase the number of strokes by between 1 and 2 across the entire event.

I usually have gym sessions on Mon, Wed, Fri. nights and Sat or Sun afternoon for around 55 minutes a session. Am tempted to have another go tomorrow, Thurs night, leaving an opportunity to try again on Sat.

We old fellas are pretty fierce competitors. Our distances and times stand up well against the mainstream of men in the younger categories.

There’s also an event in which contestants have to perform as many rounds of (7 pushups, 7 situps, 7 squats) in five minutes. I had a go to-night. My main difficulty is standing up. Also am very slow in rolling over from pushup to situp. (Was allowed to place my toes under a treadmill when doing situps; people with PD usually cannot sit up.) My score was poor. Thankfully no-one else in the 55yrs – 64 yrs men’s slot has contested this event so far.

One good idea in preparing for another attempt at the rower would be to increase my sleep. It’s now 12.45am, not unusual for me. Sometimes I’m back in the office around 4am.

Pics of my rowing last Monday and of competitors’ names/performances on the white board as at Monday are attached. (I asked that surnames be covered.) Others have competed; there’s only space for the leading four.

Scoreboard

I have a hard row to hoe!

Best wishes

Neil

Nov 22

Dear Krista,

Over the past fortnight I’ve competed in Aquafit gym’s 2 minutes rowing challenge. Also competed in a pushup/situp/squat event in which competitors had to perform as many “rounds” as possible within 5 minutes. Each round comprised 7 pushups, 7 situps, and 7 squats.

Unfortunately I was the only competitor in the latter in the Men’s 55 years – 64 years category. My performance was relatively dreadful; my problem wasn’t in speed of pushup, situp or squat, but in standing up. Only completed 7 rounds.

Movements that are simple, perhaps automatic, to most people become projects for those with Parkinson’s.

No excuses in the case of the rowing challenge. The top three competitors were a long way ahead of the rest. I was pipped into second place by a younger and fitter man. He rowed 583 metres in 2 minutes; I rowed 577 metres at my third attempt. (My first attempt was 574 metres.) In a second attempt, my backside slipped out of the seat around one minute into the row when ahead of my first attempt. By the third attempt I felt tired and lethargic. It surprised me that it was my best performance.

Competing gives purpose to my training and allows comparison of my efforts with those of other men. It’s also a relief not to be typecast by Parkinson’s. There’s no “PD” placed after my name on the whiteboard in the list of competitors. There’s no-one telling me to “rest if you feel tired.”

Times or distances achieved in gym events are screwed tighter and become new short to medium term targets.

My exercise goals range from broad statements:

• Retain good general health, especially in relation to heart, blood pressure, and blood chemistry;
• Develop and maintain a strong musculature to assist in retaining normal posture;
• Continue improving: to short-term and medium-term measurable targets.

The first two broad statements, about retaining good general health and maintaining a strong musculature, have stood since I set them in 2000.

Program sheets set out specific exercises and sets, reps, time or weight to be achieved at each gym visit. They are shaped by the short to medium term targets.

It seems that I can’t peak in aerobic and strength components at the same time. My lifting performances have fallen while preparing for the rowing challenge, so regaining that loss is my first task.

Bring on a weightlifting competition.

The vigour of my exercise regime would be regarded as lunacy by many in the Parkinson’s community but there’s a hint of change.

Petzinger and others at the University of Southern California have concluded that exercise benefits for those living with Parkinson’s are positively related to intensity of that exercise. (Stumptuous could have told them that.)

As medication wanes, my tremor becomes conspicuous. Shoppers last week asked if I needed help. While stretching at the gym, a concerned fellow member enquired if I was O.K. At the railway station the ticket seller became alarmed I was having a fit and followed me on to the platform, offering a glass of water. An hour and a half after medication such awful signs dissipate.

I don’t feel an impact of Parkinson’s on bike or rower but it certainly affects my running. Maybe walking/running are more complex movements than we think. In weightlifting, Parkinson’s detracts significantly from my “explosive” capacity such as in snapping a weighted bar to my shoulders. That still leaves many lifts with minimal “explosive” component.

My personal experience has been that someone with Parkinson’s disease, through hard training, can far exceed the aerobic and strength performance of the average Joe or Sally. I’d reject any notion of having superior athletic talents. My current aerobic and weightlifting output is the consequence of around 1,600 gym sessions during almost all of which I’ve close to busted my guts.

Professional advice, generally applied, to people with Parkinson’s along the lines of “don’t tire yourself and don’t lift heavy weights” in my opinion is both wrong and potentially harmful if Parkinson’s is the only reason for such a remark. Naturally, those embarking on hard aerobic training should be sure they have no other health problems.

If hard training has harmed me then I’m yet to detect it. It brings temporary relief from tremor and rigidity and sleep comes more readily. Maybe I’m unique. Maybe others have had detrimental effects from vigorous exercise. I’ve not read the evidence.

At least I don’t suffer a common fourth symptom of Parkinson’s disease, toppling over. Physiotherapists at Sydney University are considering this tendency and its relation to leg strength. They will be further assessing me in the coming week, having already placed within a group unlikely to fall.

Many of my peers, on diagnosis with Parkinson’s, hasten to gain a disabled car parking sticker enabling use of car parking spaces close to shops, railway stations, and the like. Some join exercise groups specifically designed for those with a disability.

Doing so may be the right approach for them. I’ll take the contrary approach. If reduced stamina threatens, I’ll increase the strain of my aerobic routine. If reduced strength threatens, I’ll put more plates on the bar.

When commencing my exercise regime in 2000 I speculated that maintaining a strong body might delay the stooped posture typical of Parkinson’s. So far so good. Neither do I experience freezing of movement experienced by many of my peers. Nor do I have a shuffling gait although its whispers are apparent on the treadmill or when walking up a steep slope.

Eventually, Parkinson’s disease will probably win. Movement will be close to impossible, I may no longer be able to eat, no longer able to speak, I may be confined to a wheel chair.

But I’m not keen to be there.

Best wishes

Neil

january 2010

An excerpt from an article that Neil sent me:

After controlling for several potential confounders, lower extremity muscle weakness accounted for 10% of the variability on a standardized test of BMD [bone mineral density]. This is noteworthy, since muscle strengthening or exercise are not interventions clinicians would consider when treating a patient with Parkinson’s disease (PD). In fact, early practice guidelines on physiotherapy (PT) for PD overlooked muscle as a potential target for exercise intervention, targeting instead the cardinal signs and symptoms of the disease with therapies that were often not supported by published research.

This practice continues today in many clinical settings. [Research that] showed a clear association between upper and lower body muscle weakness and hemi-Parkinson’s disease in 1987 and stated that “muscle weakness appears to be a primary symptom of Parkinson’s disease which may relate to disturbed motor programming due to basal ganglia dysfunction”… was largely ignored by the clinical community, perhaps because [this] statement challenged conventional thought or because it was thought that declines in muscle strength were a part of the normal ageing process.

Increasing muscle strength through resistance training might improve BMD, mobility and reduce the occurrence of falls and hip fractures. In order to increase strength, the intensity of exercise would, presumably, have to be suitably high…

Current thoughts on PD rehabilitation reflect a much more dynamic interplay between the rehabilitation environment, behavior, brain and rehabilitative outcomes in people with PD. Indeed, high intensity, task complexity, saliency, novelty and other factors may be necessary to promote struttural and metabolic plasticity in the brain and musculoskeletal systems of persons with PD; however, to date, studies are still forthcoming and no agreed exercise guidelines exist.

Until recently, intense exercise was feared to worsen the symptoms of PD by perhaps increasing the underlying muscle tone, and so, for these individuals, high intensity exercise was to be avoided. These beliefs still dominate PD rehabilitation research and clinical practice today. Few dare to challenge these “truths”, current leading texts on management of PD with exercise still reinforce the notion that high-intensity resistance training has “minimal effects on the symptoms” such as postural reflex impairment, and, as a result, relatively little progress has been made in the treatment of these patients.

It will be interesting to see if future studies reinforce the stereotype that people with so-called chronic neurodegenerative conditions such as PD cannot improve under any circumstances or if it is we who cannot advance our own beliefs.

Hirsch, Mark. Muscle Strength in Parkinson’s Disease: Commentary on Pang and Mak. J Rehabil Med 2009; 41: 291–292

As Neil writes, “In summary, despite evidence as far back as the 1980s that weight-bearing exercise and intensity of exercise are positively related to relief of the symptoms of PD, medical professionals have chosen to ignore such evidence and have continued to promote unfounded “truths” that people living with PD should avoid strenuous activity. (Probably the main reason doctors don’t prescribe non-pharmacological treatment is their lack of training in same.)

The promising sign is that there’s a tiny cluster of professionals exploring intense exercise and announcing their findings.”

june 2010

Fans of Shaky Man will enjoy his latest adventure: his first film! He speaks about his diagnosis and the role of vigorous exercise — including weight training.

What an incredible, brave man. Neil keeps it real.

By the way, that “105″ bench press he mentions… Neil is talking about kilos.

october 2010

Dear Krista,

Lines written spontaneously on arriving home from a rowing challenge.

“Bradykinesia means slowness of movement and is one of the cardinal manifestations of Parkinson’s disease.”So say Beradelli et al in that great bedtime read, Pathophysiology of bradykinesia in Parkinson’s disease

Well, Beradelli old sport. You’d best rethink bradykinesia. Cos I’m just home from the gym, having competed in the two minute rowing challenge against a cluster of aged warriors recalling their glorious past and battling with a fierce determination threatening heart attack.

And I’m coming second in the 55yrs – 64yrs category. A young lad of 55 years (I’m 64yrs) rowed 596m compared with my 570m. Another youngster is tied with me on 570m but I take precedence by age.

And I was diagnosed with the shaky condition over twelve years ago.

Chris, a real rower (on the water), eloquently summed up my effort “All grunt. Shithouse* technique.” (Sorry, mum. I shouldn’t have even repeated such coarse language.)

Competitors have a few days left to post a better distance. The fellow tied with me will surely try. So will I.

My distance to-night was 7 metres less than my performance twelve months ago. But given my difficulties sleeping recently, I’m satisfied to have finished. Maybe I’ll improve on Sunday. And there’s still the pushups/situps/squats event in which to line up.

Best wishes

Neil

* Spell check says “consider revising.”

december 2010

Dear Krista

What’s changed in the life of Shakyman during 2010?

1. My “on” periods (periods during which my medication is effective) have reduced. Appointment times at which I meet clients (yes…am still working) are dictated by when medication is most likely to be functioning. Whether my medication is on or off has never influenced training times.
2. Erratic sleep has become “normal” and surely must impact on at least the aerobic component of my training regime. I’m guilty here; during 2010 my neurologist has recommended a 9pm medication dosage but, more often than not, I don’t take it. I don’t excuse this and am attempting to be more disciplined.
3. Maximum lifts have declined.
4. I hadn’t considered until recently the negative impact of some medication on physical performance. Let me tell you.

Until late November 2010 I’d been mystified as to why my heart rate had been peaking around mid 130s this year rather than 150s as in previous years. (My usual at rest bpm = around 60). Laziness or fatigue was suspected but I felt as much exertion was being put in as previously.

I mentioned my lower peak heart bpm to my pharmacist. “That’s the XXX” replied the pharmacist, naming a medication I’ve been taking since May this year.

“It subdues heart rate and is on the banned list for sports such as shooting. It wouldn’t help in your case, of course.” (He was referring to my rowing and bike riding in which my body wants as much oxygen as possible.) My neurologist confirmed that the medication is “exercise intolerant”.

This news put my recent fourth place in an indoor rowing competition into a new light.

I’d been despondent about coming fourth in the 55 years and over category, even though only seven metres separated 2nd to 4th in an event testing how far we could row in 2 minutes. My distance was 570 metres, compared with 577 metres in the same event twelve months ago. I felt exhausted after the first minute and battled to keep going.

This, my worst effort, may have been my best. I was dragging a dirty great pharmaceutical anchor.

Lesson learnt? Take into account impact of medication. With my neurologist’s concurrence, XXX has been ditched. A few nights ago my heart rate reached 152 bpm after a burst of three minutes at 35 kms/hr during interval training on the bike.

Relief from Parkinson’s symptoms, physical and mental, comes for me with sweaty, gut-busting exercise sessions, each of around fifty-five minutes, four times a week. Sessions comprise stretching, around fifteen minutes of interval training on stationary bike or indoor rower, and around thirty minutes of weight lifting.

Parkinson’s is called a movement disorder but I’m most free of the condition when moving at max. There are many other symptoms that don’t take a holiday. You’ll gain a picture of what it’s like to live Parkinson’s by viewing the following YouTube produced for the Swedish Parkinson’s Association.

My training isn’t sculpted by Parkinson’s. It’s always been directed at my general health.

Shortcomings in individual exercises that may be Parkinson’s–related are addressed but, as a whole, I work out for my total wellbeing.

Parkinson’s appears to have little impact on my capacity for intense physical activity.

As I increase intensity the motor symptoms of Parkinson’s disease dissipate. In my home and office, I’m significantly impaired by tremor and rigidity. (See my YouTube of June 2010.) At slow speed on the bike, my riding is rough. As the pace increases, movement becomes more fluent.

I compete at a large gym in bike and rower contests with “normal,” physically fit men. Parkinson’s is briefly left behind.

Automaton-type movements such as pedalling or pulling oars feel unimpeded compared with walking, which seems a more complicated movement. I enter rowing and cycling contests but wouldn’t enter a running contest.

In 2008 I competed in an Iron Man event. No problems with the 2 km ride nor the 500 m row nor the 20 x 3 push-ups nor the 20 x 3 sit-ups nor the 20 x 3 unweighted squats. But the 500 m run was a matter of survival.

Weightlifting is where my training most starkly diverges from conventional advice. When strengthening is mentioned on websites concerning exercise for people with Parkinson’s, advice is most commonly along the following lines.

National Center on Physical Activity and Disability

Better Health PD and Exercise

For me, Exercise = Flexibility + Aerobic + Strength.

I lift “heavy” weights (i.e. near 1 rep maximum) without harm. I’ve not been injured in almost eleven years of gym activity.

There’ve been episodes of soreness, particularly in my right (Parkinson’s side) deltoid and shoulder. The remedy is obvious: Ease off on lifts that cause soreness until the soreness has gone. My experience has been that soreness is more likely to follow high repetitions of low weights than vice versa.

My lifting routine is simple.

• Try to work every area of my body at each session.
• Never repeat the same lifts at the next session.
• Give priority to lifts that stress the most muscles.
• Keep sets of any one lift to 1 and reps to maximum of 6.
• Usually lift to 90% of maximum.

The specifics can be read in my previous postings in Stumptuous.

Parkinson’s disease is apparent in my lack of explosive strength. I believe the correct label for this is “power”, being strength x velocity. Slowness in initiating movement is a symptom of Parkinson’s and is obvious in me when trying to snap a bar to my shoulders.

An oddity is that even though my “snappy” strength is greatly affected, my top speed is probably little, if at all, affected. In a previous Stumptuous posting I mentioned hitting a pedalling top rpm of 140. My competition results would indicate that, compared with other men of my age, speed isn’t lacking although initiating speed may be compromised.

Research by physiotherapists at Sydney University appears to reflect my experience.

Summarising. My exercise regime is:

1. For general health rather than being tailored as Parkinson’s therapy.
2. Comprised of three components flexibility, aerobic, strength
3. Performed at close to my maximum exertion.
4. Focused at performance targets which, when achieved, are extended a little further. Performances are measured.
5. Controlled by me. (I respect and consider other’s opinions but I’m in charge.)

I describe but don’t advocate my exercise routine. What others do is for them to determine. Anyone contemplating intense physical activity should firstly have medical confirmation that it’s safe to do so.

My creed remains that my exercise regime will be the same as that of anyone else working out for general health. It will be performed to my hardest. If Parkinson’s brings impediments, then I’ll work around them. It won’t dictate how I train.

In my November 2009 Stumptuous commentary I cited research revealing the benefits of intense exercise for people living with Parkinson’s. Dr Becky Farley, who was associated with the USC research mentioned by me, initiated exercise programs in 2009 for those living with Parkinson’s. Forcing participants beyond their comfort zone appears to be a fundamental element.

pwrgym.org

On 11 January 2011 I’ll click over to 65 years of age. My height is 179cms (5ft 10.5 inches) Weight is 87kgs (192lbs). I was diagnosed with Parkinson’s disease in 1998. My training occurs at Aquafit Fitness and Leisure Centre, Campbelltown. NSW Australia.

Best wishes

And Happy Christmas

Neil

If you’re inspired by Neil’s story, as I was, consider making a donation to the Unity Walk NSW 2009 for Parkinson’s NSW (Neil’s page — with a gym photo!), or a donation to the Parkinson’s foundation of your choice, such as:

• The Michael J. Fox Foundation for Parkinson’s Research
• Parkinson Research Foundation
• Michael Stern Parkinson’s Research Foundation
• National Parkinson Foundation

march 2005

Dear Krista,

You encouraged me to try pushups. Included them in my routine until late September when I had my gall bladder removed. Pushups then slipped for no good reason from my exercises until I tried them again a couple of

nights back. Did 20 with a 15kg plate on my shoulder blades. Will try for 25 in next 2 weeks. Then…15 with a 20kg plate???

Am aged 59 yrs and weigh 84-85kgs. Was diagnosed with PD in 1998. I get pissed off by advice telling me to exercise in moderation and to only lift light weights. I’m no strength champion but am doing closed grip pulldowns of 200lbs, cable row seated on floor pulling sets of 6 at 80kgs, triceps pushdowns of 40kgs, bench presses of 95kgs (have gone to 102.5kgs but not recently.)

Am impeded on the treadmill when I run… only manage 3 minutes running now due to rigidity down my right side accompanied by shaking of my right arm. I do walk for around 10-15 minutes on treadmill. Found the other day that

I can increase the cardio stress by lifting the machine to a 10 degree incline.

I feel free from Parkinson’s on the bike. I crouch over in Tour de France style and go for it. Start with a resistance of 4 (resistance scale of 1 to 16… 16 is like riding up a sand hill) working up to an rpm of 80. Then I jam the resistance up to 10 for 90 seconds at an rpm at least in the 70s, then fall back to R4 for 90 secs, then R8 for 90 secs, then R4… then R6… then R4… In a session this past week I increased the 90 secs to 2 mins. I use several bike routines, all based on easy/hard, easy/hard, as in the example above.

I’m the only Parkinson’s person of whom I’m aware who lifts heavy weights. If you are aware of anyone else then I’d be most grateful to

hear of him/her. I reckon it helps my posture and certainly helps my self-esteem. People who see me shopping sometimes offer to carry my bags. There’s an assumption that because a person has PD then he’ll be weak.

Best wishes and thank for your tips last year.

Regards,

Neil

may 2005

Shaky fella with Parkinson’s disease in Sydney, Australia, has reached 20 pushups with 20kg plate on shoulders. Aim for 21 next week.

This stresses gym staff: “Neil. The plate could slide on to your neck. I’d rather you didn’t do that.”

Recently discovered an oddity. For around 30 seconds to a minute after pulling cable row I can perform situps despite being unable to sit up for over a year. (When on my back, I’m as useless as a turtle on its back.)

Goal for short to medium term is to bench press 105kgs. I go for long periods without bench pressing…there are plenty of other things to do. “Lay people” only know of the bench press so how much you can press becomes an assessment of how strong you are. They wouldn’t care a rat’s that I can

do closed grip pulldowns of 200lbs.

I think the figure of 100kgs has become a psychological barrier for me. If the plates for the bench were in lbs maybe I’d press 230lbs and not think a great deal about it despite pushing the equivalent of 103kgs. I’ve bench pressed 100kgs on various occasions since 2002 but have not reached 105kgs. (Nor have I tried.) Pressing the bar those first few inches up from my chest is the challenge. (My vital stats are that I’m 59 years old and weigh

86kgs-87kgs. Have been attending the gym since 2000 after a layoff of close to 30 years. Was, once upon a time, a sprinter and lifted weights to assist my running.)

Regards,

Neil

Krista,

On Wednesday 25 May at Uni of Western Sydney gym this shaky old bastard did 25 pushups with 20kgs plate on shoulders.

Photos were taken last year by physio lecturer who seemed interested in my exercise regime. I’d been part of a group of Parkinson’s people who had to walk as far as they could in 6 minutes after physios had performed various tests. I walked a helluva long way. Senior lecturer visited my gym to find out what I was up to and to photograph me for a presentation she was to give on Exercise and Parkinson’s

Disease.

Regards,

Neil

Dear Krista,

The local Sydney press a few days ago carried news that research at Concord Hospital “found that 330 minutes of exercise a week, supervised by doctors, reduced blood pressure and cholesterol levels to normal levels in sufferers (of type 2 diabetes)… It

also achieved blood glucose control equivalent to starting insulin therapy… Their medication was cut by an average of half with some patients stopping insulin therapy and other medications altogether.”

Concord Hospital is a teaching hospital of Sydney University. I wrote to the research leader, Dr Nic Kormas, and said I suspected that the benefits of strenuous exercise extended more widely than his field.

Now for the photos. These aren’t pushups and do include a bench press which, when you see it, might have you catch fire through spontaneous combustion. The physio probably shot my very worst effort. It was my starting weight at 80kgs. (As a weak attempt at an excuse, I find it difficult to straighten my right arm.)

Best wishes,

Neil

july 2005

Am just back from the gym where I benched 105.5kgs. 21% above my body weight. In case I felt smart about this, the spotter asked “Are you only lifting one?”

Have not bench pressed often and have felt an underachiever on this exercise. To-night I thought there might have been another 2.5kgs in me. Next big goal is 110kgs.

Have noticed a couple of oddities.

1 The side more afflicted by PD is stronger than the other.

2 Can’t normally sit up when lying on my back, but after pulling the cable row cable (say 6 x 85kgs) I can sit up without difficulty until I stop for more than 30 seconds. Can comfortably do 10 sit-ups after pulling on the cable row. I have no idea why this occurs.

Regards,

Neil

october 2005

Krista,

Just looked at news on your website and noticed the article regarding PD. As a person with PD I’d go berserk with joy if there was a breakthrough giving confidence that PD could be forestalled in the near future. While what I’m going to mention isn’t quite so optimistic, it’s BIG news.

Researchers here in Sydney have determined that inflammation in brains of PD people is a precursor to, not a consequence of, the death of dopamine-producing brain cells. This leads to the view that if a means can be found of early diagnosis of PD, then anti-inflammatories may do the trick.

At this stage, there’s no blood/urine/MRI, (etc), method of early diagnosis. Diagnosis depends on clinical observation. By this time, a person may have lost 75% of dopamine-producing cells. The announcement was made around three weeks ago. The Prince of Wales Medical Research Institute is also working toward a means of early diagnosis.

Am still exercising hard. Did something damn silly a couple of weeks ago. Tried deadlifting. Then tried continuing to lift the weight up to my ribs. Not clever for a person who’s had surgery on his lower back. Hope I haven’t done damage.

Regards,

Neil

february 2006

From Sydney, good tidings to the sisters and brothers of Toronto and lands beyond.

Still flogging myself in the gym, and still reading via Google how people living with Parkinson’s disease “of course” shouldn’t lift heavy weights.

Since my previous report, I’ve begun experiencing “on/off” phases with Parkinson’s medication. An “off” phase occurs when the replacement chemical supplied to the brain by the medication becomes insufficient. My tremor significantly increases. Around Christmas I felt pretty despondent about gym performances. Speed on the treadmill and elliptical fell spectacularly, my bike performance fell less so. Weights achieved fell by about 10%. Soreness after lifting increased. A physio I admire (a PhD in neurophysiotherapy) informed me that physical performance during off phases could fall dramatically.

Now the good news! Have adjusted the timing, but not the level, of my dosage. Gym results are again on the up.

Those chinups you perform without grimace on your website… My paltry few are accompanied by facial contortion, swearing, self-abuse (“You big fairy!”) and shaking. Manage three sets of six. OK, three sets of five and three quarters. These are done with palms toward me. Then conclude with two sets of six, using a closed grip (palms facing each other). The bar fell off on my most recent attempt at these, landing on my head just as I finished.

Tried the bridge exercise you suggested. Aimed for artistic elegance, body forming an arch supported on the top of my head and the balls of my feet. Then came two weeks with a sore neck.

I have six different exercise routines. One per session. Attend gym three sessions per week, sometimes four, each visit being around an hour. Pushups are in one of my routines Have reached 18 with a 25kg plate on my shoulder blades. Aiming for 20. Have also tried decline bench presses but am limited by dizziness when lying with my head lower than the rest of me. Have lifted one only at 100kg without much stress, except for dizziness.

I attend a university gym as a community member. Most of my gym peers are young. They probably think me a grey-haired, shaky lunatic.

Am still working full time. Switched in 2002 from writing right handed to writing left handed because doing anything right handed requiring fine skill is beyond me. When doing up buttons I’m like a three year old.

On 11 January I clicked over to 60 years of age. Am now “old”.

Being now old, I requested a mechanical overhaul. Everything good or normal, except for Parkinson’s disease. Pd was diagnosed in 1998. Started gym activity in 2000. If it hadn’t have been for PD, it’s unlikely that I’d have inserted strenuous exercise into my sedentary lifestyle.

Have done little about strengthening my legs. Can’t touch my shoulders due to rigidity so can’t hold a bar behind my head and do a conventional squat. Recently tried lying back in a contraption called a leg press machine, then pushing my feet against a plate carrying weights. Must not have had my back properly supported because gained a sore back in the days following. Have tried calf raises, although I have trouble squatting low enough for the weights I could raise. S’pose I could do calf raises with light weights and

do more in a set. Bike riding at higher resistances must help my legs a bit.

march 2006

I’d done a little research through Google and discovered that a hard-exercising Aussie genius neuro researcher with

Parkinson’s disease. On looking through the website of Parkinson’s Victoria (www.parkinsons-vic.org.au) I came across her again. At around page 7 of 12 of its newsletter there’s reference to a talk given by Nikki O’Brien. Nikki is bringing out a book, Pushups in High Heels. She apparently trains fiercely. Was in a wheelchair; now she’s not. Nikki’s photo accompanies the article. (Look at the lean arms.)

Will catch up again soon. Have become more rigid and I tremor more. Effect of my medication wears off after around four to five hours. Still train as hard as I can. Thought I’d significantly lost strength until I put some plates on the bar the other night and benched twice. Then noticed that the weight was 100 kgs. Lifted from a bench that’s too close to the floor… my legs weren’t at right angles at the knees. Lift more on a higher bench. Am not overly proud of 100kgs because I know you could tell me of some 95 year old grandmother in Toronto who does sets of 100 kgs to loosen up. Nonetheless, am doing better than some.

Every week or so I try those damn chinups. Do them hands under. Tried them hands over recently and achieved zilch. Did 16 pushups with 27.5 kgs on my back last week. Will try 16 next week, followed by 10, followed by 5.

october 2006

Lately have felt a bit down about my gym progress. Am up to 9 chin-ups. Have recently curled 52.5kgs on the E-Z bar with only a small cheating jerk of the back. Will shift to doing these seated rather than standing. Reckon my forearms are relatively weak; seated curls will put a greater test on this part of me. Have reached 17 pushups with 30kgs on my shoulder blades. To-night I noticed a horizontal bench in the Smith machine so tried some bench presses. Reached 110kgs with the spotter giving the bar a little tap

as I pushed it up. Now for a fair dinkum (sorry, that Aussie lingo) 110kgs bench outside the Smith machine.

This year my “off” periods ( when the medication is no longer having an effect) have lengthened. I haven’t figured out to what degree an off period impacts on my gym performance. Am probably in excellent physical condition except for Parkinson’s disease. And my seething anger at the mongrel of a neurologist who told me in 1998 that I’d be in a wheel chair by around 2003 is mellowing. I no longer yell out “you bastard” when hitting 100kgs on the bench.

december 2006

I’m still exercising vigorously and breaking “rules” such as the one about not lifting weights above 10lbs.

Have just read a book about Lance Armstrong, so tonight in the gym I set the resistance high on the bike and rode my guts out.

My Parkinson’s has advanced this year in that my “on” periods have decreased in duration and my tremor has increased. “On” periods are those times when the medication is suppressing tremor. On the positive side I remain at my 2003 medication dosage. Further, I’m fortunate to be on only one type of medication whereas other people with Parkinson’s tend to be on three, four, or five. Unlike many, my posture is normal and my gait looks normal.

Still work full time. Click over to 61 years of age on 11 January. My body weight remains around 88kgs (194lbs).

In September I was referred to a neurologist, a member of a team in Sydney performing deep brain stimulation in which an electrode is positioned in the brain and connected to batteries in the chest. Eighty five per cent of those undergoing the operation are improved but some of the other fifteen per cent have catastrophic results including stroke and death. The neurologist’s opinion was “You appear to be coping reasonably well. This surgery involves risk and you take a gamble. Why not lift the medication before you consider the operation?” I didn’t argue.

Recently gave a talk on Parkinson’s disease and exercise to men with PD. It mightn’t have gone down well with some professionals. Rather than “find a gentle exercise like Tai Chi and take it easy” my message was “do what you like and do it hard.”

I frequently refer to your website for exercise tips despite being built nothing like a female. I keep updated with the “what’s new” section. (Hope you’re not affronted by this Aussie bloke peeping into your woman’s domain.)

Have included chin ups in my routines this year, at your suggestion. I do a set of 10 with palms toward me, followed by 6, then another 6, and another 6. Dips have been added to my list in 2006. With dips I do 10, 6, 6, and if possible another 6. Have continued doing pushups with plates on my shoulders. Am up to 35kgs on my shoulders, but reps at this weight are down to 13.

Incline benches done as they should be rather than in the Smith machine are a further new inclusion. Am a little impeded by rigidity from PD. Can’t lift my arms beyond the angle of a Hitler salute. Am up to sets of 5 at 62.5kgs at an angle around 25 degrees back from 90 degrees.

Have also increased the number of dumbbell exercises although with my tremor, I can bang my head with the dumbbell as it’s lowered.

The other night I failed at 105kgs (231lbs) on the horizontal bench. Have pushed this up in the past. To be fair, my right shoulder has been sore for a few weeks. May need to reduce dumbbell presses and pushups with 35kgs until the soreness goes.

Added leg presses to the list this year. (Can’t get my hands up to my shoulders so can’t do squats.) Have reached 5 x 220kgs, although I’m not drawing my knees into my stomach at this weight.

My gym activity has persisted since January 2000, so allow me to blow a prolonged raspberry at the neurologist who, in 1998, told me I’d need a carer within 3 years (“You won’t be able to do up your buttons.”) and that I’d be in a wheel chair a couple of years later.

january 2008

Dear Krista

Best wishes for 2008.

As ’07 finishes I’m still working out hard and saying “bullcrap” to experts who urge people with Parkinson’s not to lift heavy weights.

2008 will mark 10 years since being diagnosed with PD. On 11 January I’ll have been training vigorously for 8 years. I’ve broken just about every “rule.”

• I lift weights to my maximum. (“Don’t lift weights heavier than 5 pounds in each hand” says at least one prominent expert. Other articles urge us to “lift light weights only.”)
• I run on the treadmill, swinging my arms normally until fatigue sets in. (“When on the treadmill, hold on or use a body harness.”)
• Push myself such that my T-shirt becomes saturated with sweat. (“Take it easy. Don’t overtire yourself.”)
• I take a low to medium dose of one medication only and never adjust its timing to fit my exercise routine. (“Exercise during on phases, not off phases, of your medication.”)
• I train between 9pm and 10pm. (“Don’t exercise within several hours of bedtime.”)

It was my good fortune on rolling up to the gym that first night in 2000 to run into a gym manager who probably knew nothing about PD but knew lots about working hard. She was Australian women’s shot put champion, though I didn’t become aware of this for a long time. Michelle pushed me. I enjoyed it. When targets were met, they were nudged a little higher. “Get into it” was one of Michelle’s frequent sayings. Regrettably, Michelle moved on after a few years.

My next mentor was someone in North America, a Krista. I’d Google searched on Parkinson’s Disease exercise and had come across an article Krista had written about an exercise routine she had designed for a gentleman with multiple systems atrophy, a neurological condition more horrible than mine. Krista generously emailed me tips to include in my program. From the photos on her website, Krista didn’t just think about exercise, she could do what she described.

During 2007 a new current in thinking has emerged. You alerted me to a finding of researchers at the University of Southern California that mice, induced with symptoms of PD, appear to benefit from some degree of neuroprotection when forced into vigorous exercise. Across the U.S., at the Cleveland Clinic, Dr Jay Alberts is interested by the temporary relief in symptoms experienced by people with PD who took part in an annual bike ride across Iowa. Each person with PD was forced into riding at a higher cadence than he or she would usually achieve, riding tandem with an elite partner.

My local Parkinson’s support group heard in November from Professor Glenda Halliday about recent research findings into PD. Prof Halliday referred to developments in medication and surgery and to “at least four” research projects into what appears to be neuroprotection arising from exercise.

If these researchers had read Stumptuous, they would have been alerted to the positive attributes of vigorous exercise through the experience of Shaky Man.

Currently I utilise five gym programs, one per session. The logic in undertaking a different routine each session is to prevent overuse of the rigid muscles on my right side. Program content has been designed by me with assistance from gym staff and Stumptuous. My routines are revised every couple of months. I’ve just redrafted them. New routines are fine-tuned in their first application.

My overall goals are stated on the front cover of my training folder. They can be summarised as retaining good health with a strong musculature. I believe that a strong musculature may override the tendency to stoop, a frequent characteristic of those with PD.

Relative shortcomings are stated as rigidity, weakness in forearms compared with shoulders and chest, and “whatever muscles are used in chinups with hands over bar. Same applies to lateral pulldowns.”

Gym 2 program (of Gym 1 to Gym 5) is:

• Stretching.
• Pushups. 37, 25, 20 with 1 minute rest between each.
• Bent over rows. Sets to 65kgs (143lbs) x 5.
• Dips. 13, 9, 7.
• Dumb bell curls. Sets up to 15kgs (33lbs) x 6, then 17.5kgs

  (38.5lbs) x 3?

• Dumb bell hammers. As for DB curls.
• Front laterals. Explore; have never done.
• Side laterals. As for front laterals.
• Bike. 2 minutes @ 80 – 85 rpm @ resistance 8 on scale 1 – 20, 2 mins@ 90 rpm @ resistance 8, 1 min @ 85 rpm @ resistance 10, 5 mins @ 80rpm@resistance 12, 2 mins @ 75rpm @ resistance 14, 1 min @ 80 rpm @ resistance 8.

There is usually a diminution in PD tremor and rigidity following a rigorous bike ride. Furthermore, I fall asleep more readily and the sleep tends to be undisturbed.

A couple of months back I became mad at myself for failing to reach 50 pushups in the one set. I continued with sets of 25 – 30 pushups throughout the one session until reaching 250.

Thank-you for your encouragement.

Happy New Year.

Neil

december 2008

Close to a year has passed since I regaled you on my shaky exertions.

Firstly, let me reassert that Parkinson’s disease is a humiliating, bloody mongrel bastard of a condition in which one’s frequent wish is to hide. I go to a meeting carrying a note pad and some briefing papers. I drop them in the car park. My notes blow away. I shout friends a drink at the club and sound like the percussion section of the Sydney Symphony Orchestra while carrying a tray with glasses and a bottle of wine back to our table. People stare. They move aside, leaving a path for my jangling progress. Some offer to help.

We with PD wake up of a morning in the knowledge that, not only isn’t there a cure, but the trigger for the cascading death of our brain cells has yet to be uncovered.

The gym is my place of relief. It’s my territory. It’s a time for personal reassurance that PD hasn’t rendered me physically inferior.

After close to nine years of working out I’m still discovering peculiarities in my performances. In mid 2008 I tried snapping to my shoulders a bar modestly loaded with plates. I knew I couldn’t push the bar above my head due to frozen shoulders. I was surprised on finding it impossible to “snap” (lift explosively) much more than the bar itself! At first this mystified me. Then I found an academic abstract noting the impact of PD upon “force.” The abstract was couched in technical verbiage but appeared to support my discovery of highly depleted “snappiness” in people with PD.

A more positive revelation in 2008 is that I can build up to significant leg speeds on the bike. “Bradykinesia” (slowness of movement) is one of the four main symptoms of PD, yet I’ve hit 128 rpm in short bursts at low resistances on the Cybex gym bike. I’ll start out at 70rpm at a resistance of 8 (scale of 1-20), retain this for 1 minute, increase to 80rpm for 2 minutes, then flat out for 1 minute, back to 80rpm for 2 minutes, flat out for 1 minute, back to 80 rpm for 2 minutes, flat out for one minute, followed by wind down for 1-2 minutes. This is certain to get your T-shirt sweaty. Anyone who tries it without being confident of a sound heart is an idiot.

Previously my bike routines had involved alternating resistance levels at the same rpm. Now I’m including alternating rpm at the same resistance levels.

Treadmill is awful, with a dragging right leg and a rigid right arm. I’m not punishing myself to improve; my heart and lungs are pushed hard enough on the bike.

My upper body strength has not markedly diminished over the past three years. It may have declined by around 3% since 2005. I’ve varied the width of my grip when training bench press. For example, with hands placed next to the vertical supports I can hoist 5 x 85kgs. (Are you Canadians metric? Surely the French Canadians would be. Napoleon invented the system, didn’t he?) I rarely attempt a one repetition max on the bench. Recently I pushed 100kgs upward but the spotter touched the bar as I heaved it off my chest. My body weight remains around 86kgs – 87kgs.

Driven by the photo of you performing dips on Stumptuous I’m doing dips while carrying a 20kg plate plus 2.5kgs plate on a belt. Am only up to a set of 6, followed by 4, then another set of 4.

I’ve increased my dumbbell work. Until recently, a spotter has guided my arms when doing horizontal dumbbell presses. With my right arm so shaky there’s a possibility of knocking my head with a dumbbell on lowering the thing. What’s the point of a stronger deltoid but being unconscious?

My forearm strength needs to improve as does my incline bench press. And I still haven’t achieved one pullup with palms facing out.

Krista, when we began our exchanges, my level of activity was regarded by many professionals as of dubious merit for someone with PD. Others described it as harmful. We with PD were urged to take it easy, never lift “heavy” weights, never exercise within two hours of bed time. By 2005 there were hints of change in professional opinion on physical activity and PD. More perceptive souls had started to say “Hmmmmm. Mice and monkeys, induced with symptoms of PD, do better if they are forced to exercise vigorously. Wonder if this applies to humans.” See the National Parkinson’s Foundation article.

A year or two later we find a more radical notion effusing out of respectably framed research. Lifting weights may be beneficial, not harmful, for those living with Parkinson’s disease.

Stumptuous has been in the Vanguard.

I don’t seek to advise people but merely describe what’s possible for me despite PD. Strength may have helped me retain a normal posture rather than the stooped alignment typical of the condition. Neither do I topple over as many do with PD.

Of this I’m sure: Within an hour of a vigorous gym session, my tremor usually subsides and rigidity greatly eases. Sleep comes more readily. The relief is temporary. But relief following medication to which I adhere is also temporary. My departure from orthodoxy has not been on medication but on the vigour of my physical regime. If it’s harmed me then I’d be intrigued to learn how.

There’s a reply for anyone who watches me in the gym and says I’m unusually strong. “Mate, this is around my one thousand, three hundred and fiftieth trip to the gym. Just try to improve little by little, and you’ll surprise yourself. Try your best. It’s as good as anyone else’s best.”

Training occurs at the Aquafit gym in Campbelltown, Sydney. It’s a bit flash but the people are friendly and always helpful.

All best wishes for Christmas

Neil

february 2009

Just back from gym.

Just about (I felt spotter give bar a bit of a nudge off my chest) hoisted 110kgs on the horizontal bench to-night.

Did so by mistake. After hoisting 100kgs I asked spotter for plates to 105kgs.

When putting the plates away I realised the extra plates were 2 x 5 kgs, not 2 x 2.5kgs, so I recalled the spotter and asked if he’d identify which plates he’d chosen. “Oh yeah. They’re fives. You lifted 110kgs (242.5 lbs).”

There must be psychology tied up in this method of hitting new heights but I’m too tired to articulate it.

My lift was observed by fitness instructor James who gave a “thumbs up” from the other side of the gym then came over to congratulate me.

Where? Aquafit gym, Campbelltown, NSW, Australia. When? 2 February 2009.

My body weight is 86kgs so the lift was 27.9% above my own weight. Age = 63 years. Medical conditions = none other than Parkinson’s disease.

When diagnosed? 1998. Gym activity commenced 11 January 2000, my 54th birthday.

Hit an rpm of 129 on the bike last week (rpm read and called by fitness instructor Danielle because I was in crouch) but unsure if resistance was at 8 or 9 on a scale of 1 – 20. Recently hit 128 rpm at resistance 9. (Cybex stationary bike.)

Next target = rpm 130 @ R10.

My Presbyterian childhood now has me fearing being smitten during the night ’cause I’ve boasted.

All the best

Neil

april 2009

Krista

Learnt last Monday night that my gym (1,000+ members) was holding a Birthday 500 metres Rowing Challenge.

(Aquafit gym turned 5 years of age on 1 April, a day we celebrate as April Fools Day. Sydney zoo staff has to put up with numerous phone calls from individuals whose friends have given them a phone number for a “Mr Lyons.” Friends think this to be side-slapping fun.)

Rowing has never been on my program through embarrassment at needing assistance strapping in my feet. Previous row was in February 2008 in Summer Iron Man Challenge.

Not one to shirk a challenge, I gave it a crack on Wednesday night… 1 minute 50 point something seconds.

Friday night… 1 minute 47 point something seconds. In tie for third place in 55 – 64 years men’s category.

Saturday afternoon (final day of comp)… 1 minute 46.5 seconds.

Darn. Still in third place; second place timed 1 minute 45 point something seconds.

Felt a real nark for pushing someone out of equal third spot without gaining anything myself.

The winner? 1 minute 41 point something!!!!!!!!!! In a league of his own.

My best news was that I found it possible to strap in my feet. Seems as if rowing can join my program after all.

may 2009

You told me earlier this year that it was time for more photos. Purchased my first digital camera last year but too technologically inept to use it.

Took it to gym last night and enquired if the young fitness instructors could figure it. They looked at me askance. “Of course!”

All photos taken at Campbelltown Catholic Club Aquafit Gym, Sydney Australia, 8 May 2009.

Dips, with 20 kg plate + 5 kg plate suspended on belt. Set of 6, then set of 4, then set of 4.
Bench pressing 100 kg. Spotting by fitness instructor James. (Note. His palms are open. He's not lifting.)
Thinking it over.

I’ve adopted an idiosyncrasy when setting out to bench press close to my maximum. (My max has been 110kgs in Feb 09.)

I start by lifting the 20 kg bar alone, concentrating on hand placement and alignment of the bar above my body. Then 2 x 10 kg plates are placed on bar and lifted 3-5 times. Add 2 more 10 kg plates. Lift 3-5 times. Add 2 more 10kgs. Lift 3 times. Add 2 more 10kgs. Lift once. That’s 100kgs.

I don’t lift sets of 10-15 reps as some do. There might be some logic to it but I struggle to see it. The most I usually lift in a set is 6.

Best wishes

Neil

Neil’s adventures continue in Part 2 >>