Shaky Man in the Gym 3: Trembling, but no fear

April 22nd, 2011  |  Published in Inspiration, Real stories  |  16 Comments

Part 1Part 2

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

may 2012

Dear Krista

An article in the Washington Post of 12 January 2012 has caught my eye.

Chuck Linderman, a 64 year old American diagnosed with Parkinson’s disease undertakes sweaty exercise with weights, rower and bike. This fellow’s regimen is so close to mine I checked to ensure that Chuck wasn’t plagiarised from the pages of Stumptuous.

Chuck has been diagnosed with Parkinson’s for six years compared with my thirteen and a half years. Unlike me, he has a rowing background. My indoor rowing commenced in 2009. Unlike me, Chuck has retired from the work force. I’m 66 years old.

How goes my gym regime? What have I learnt in the past six months?

1. The goal itself may become the impediment.

For several months until recently my training had been driven by a goal of beating 1 minute 40 seconds for indoor rowing 500 metres. Last time I looked, only one Australian of 65 years and older had achieved this so far in 2011 – 2012. My average pace after one minute was well under that required to row 500 metres below one min 40 seconds.

Yet I broke down when trying to hold the pace an extra 38 seconds. It’s not lack of stamina. A chest physician assessed my lung capacity as above normal. Computer software assessed my “cardio age” as in my twenties (after I’d stepped up and down off a box for some minutes.)

Recently, I rowed while chatting to a friend about my trip in April to San Francisco. Feeling sinful for chatting while training, I told my friend, “I’d better increase the pace now.” The instrument panel indicated that, while being sinful, I’d rowed for over 17 minutes at medium pace. My mind had been elsewhere, not consumed by a goal.

2. Pursue little targets.

Many little improvements lead to big gains. Think little, achieve big.

3. Lessen stress, as much as possible.

Stress exacerbates symptoms of Parkinson’s. It even overrides the benefits of medication. Not reaching an important goal generates stress. Stress negatively impacts performance.

4. It might be the medication.

An American exercise scientist, a new-found friend, has sent me a link to Neurology Now from which a blinding flash hit me similar to that which hit Paul on the road to Damascus. It came from an item about Rich Clifford, the U.S. astronaut who walked in space despite his Parkinson’s disease. The piece noted that “one medicine made him particularly compulsive, mostly in wanting to finish tasks”.

Could the medication I’ve been taking for about two years be the source of my impatience? We don’t just battle the medical condition; we sometimes battle the medicine given to repel the condition.

5. Strengthen the body first; speed follows.

Weightlifting has regained its primacy in my program. My bench press has been down. The spotter let me think I hoisted 100 kgs in February, denying that he’d given the bar a little assistance off my chest. Let’s say I lifted 97.5 kgs. Rather than a bar with plates, I sometimes substitute up to thirty push-ups with a 20 kg plate on my shoulder blades. Six dips with 20 kgs hanging off my belt is another showpiece.

6. Some days are poor, some days are good. Concentrate on the good.

Some days will be poorer than others. It’s pointless beating myself up. These are appropriate occasions to look at my training pattern and make adjustments.

7. With Parkinson’s, some days are terrible, but show up anyway.

The above line says it all. There are occasions when I look terrible, shaking alarmingly. Staff hold my security tab against the sensor at the gym entry gate, letting me come in.

Even when shaky, I can build up to good speeds in the rower or on the bike or even when sprinting. As new gym members are thinking “That poor old man”, surprise them. Ask one if he’d mind placing a 20 kg plate on your shoulder blades while you “get into the feel of things with 25 pushups.” (Look at my video of June 2011 if you disbelieve how bad I can appear.)

Myths

“Take it easy, don’t tire yourself, don’t lift heavy weights” is still advocated by some professionals for people with Parkinson’s. We are considered slow, weak and easily fatigued. That’s certainly how people diagnosed with Parkinson’s will become if they allow these descriptors to define their capabilities.

Don’t permit Parkinson’s (or anyone) to define your life. The most damnable thing is to let Parkinson’s constrain us without first testing if the limitation need be true.

Mistress Krista will say yea to the next bit. Bradykinesia (slowness) is one of three fundamental symptoms of Parkinson’s disease. The others are rigidity and tremor. A person with Parkinson’s disease will have at least two of the three. Dr Fabian David and others have recently studied the relationship between strength and bradykinesia in people with Parkinson’s. (Link to article)

“Given the wide array of neural changes that accompany PRE (progressive resistance exercise) summarized in this paper, the potential to slow the rate of the progression of the symptoms of PD, the improvement in strength and function, and the positive effects on nonmotor symptoms of PD, there is a strong rationale for the use of PRE (progressive resistance exercise) as an adjunct treatment in PD.”

Amen.

While everyone with Parkinson’s is different, I think it highly unlikely that my capacity to lift weights and to propel myself at speed is rare. I believe it more likely that people in early to mid-stage Parkinson’s accept that they are physically the lesser and are encouraged to feel this way by many professionals.

My experience has been that with hard training, with commitment, and with the support of others, a person with this horrible condition can lift his or her physical performance significantly above those of the general community.

Best wishes
Neil

(Huge thanks to Mistress Krista for providing this otherwise aloof Australian with an amplifier.)

Responses

  1. Leya Moore says:

    April 22nd, 2011at 8:55 am(#)

    Thanks so much for the update.

    Neil – Just wanted you to know that Krista’s updates on you was one of the things that encouraged me to get into weight training, intervals and finally CrossFit and powerlifting. Your story changed my life, dude (heh!). I have a secondary form of generalized dystonia (same area of the brain, same neurotransmitter, different funky movements). I figured, if you could do it, so could I. So, I did. I qualified this year to go on to CPU nationals (didn’t end up going – next year when they are hopefully out west) and I’m currently 24th in Western Canada for the CrossFit Games Open. Being physically fit, to me, means being able to feel free in my body even if there are some days when I’m not.

    THANK YOU!!!

  2. Rosemary says:

    April 22nd, 2011at 10:08 am(#)

    Dude’s a good word. For those of you who don’t row, his max out pace is pretty dang good all on it’s own, and fantastic when you add the age adjustment.

  3. Neil says:

    April 22nd, 2011at 8:24 pm(#)

    Krista
    I share your views on the negative attitude of many doctors (my diagnosing doctor in 1998 told me I’d need a carer in three years and would be wheelchair-bound about two years later) but I don’t want someone with a dicky heart dropping dead because of anything I’ve written.
    Leya
    Am stunned! Overjoyed if it’s true that I’ve helped someone. Deepest thanks. Love your website, particularly the Muppets singing Ode to Joy. Am envious of your ability to perform Olympic lifts. My musculature is too rigid for me to hold my arms up straight.
    Rosemary
    Thanks for your remark about my rowing speed. My fastest rate, held for only 10 secs, has been 1 min 34 secs/500 metres. Stamina is my issue. I can hold sub-1.40 secs/500m for around 45 seconds. Am long overdue to have a crack at a sub-1 min 40 secs 500m.
    All the best
    Neil

  4. mommalikabooty says:

    April 23rd, 2011at 8:47 am(#)

    Thank you for sharing your story, Neil. As a home health geriatric nurse, I see everyday how much function and mobility are tied to activity level. Seems to me your diagnosis brought out your inner athlete! Kudos to you!

  5. Mandy says:

    April 25th, 2011at 7:12 pm(#)

    Dude, awesome!

    (And “dude” is totally a compliment. After all, the dude abides.)

    I have really enjoyed reading your letters. I have a difficult relationship with mainstream medicine, after having some frustrating experiences of my own (and incredible, unbelievable benefits from exercise, both running and basic weight training). I do value and believe in science, and I expect that mainstream medicine will figure out that exercise and diet have a much bigger impact on health in so many ways, but I want to see the research done.

    My own health issues are minor in the scheme of things (long story short– my stomach hurt real bad for a year, and now it doesn’t), but deciding to become an athlete (I may not be winning races, but I’m running them), something I would have found laughable when I was younger, has done such enormous things for me. Krista’s site, and following stories like yours, is definitely an inspiration. When I need to remember that yes, getting my lazy butt to the gym today really will make a difference in how I feel and what I can do, I come here and read this.

    Thank you, thank you, thank you for the update! :)

  6. psi*psi says:

    April 26th, 2011at 6:14 pm(#)

    I love these updates, Neil. You’re amazing! (Keep us posted!)

  7. Jennifer says:

    April 28th, 2011at 9:29 pm(#)

    Thank you so much for the update. You are an amazing inspiration…and one cool dude.:)

  8. Tracey says:

    September 14th, 2011at 3:52 pm(#)

    G’Day Neil,
    What a blessing to know someome who inspires so many! You put all those quacks to shame.You’re my shining example against DBS. Keep up the great work.
    Take Care, Tracey M – Eagle Vale

  9. Neil says:

    September 15th, 2011at 1:07 am(#)

    Tracey. An Aussie! And one I know! Hadn’t mentioned my athletic pursuits to you, had I? Deep brain stimulation has worked for many but been catastrophic for some. It would be a last resort for me. Looking forward to your hug at our meeting next week. Best wishes to you and Ralph. Neil

  10. Amy says:

    October 15th, 2011at 7:47 am(#)

    Hi Neil,
    I truly appreciate your comments on my blog. As I said before you really are an inspiration and I’m rooting for you all the way. Thanks for sharing your experiences

    Amy

  11. Neil says:

    October 16th, 2011at 6:40 pm(#)

    Amy
    Thanks for your kind remarks. I’m privileged to be selected for your website. I now have a far greater understanding of Parkinson’s Plus conditions, (those similar to, but distinct from, Parkinson’s disease).
    It was such a condition, multiple systems atrophy, which drew me to Krista. In early 2004 I read an article by Krista about the training regime she’d prepared for a gent diagnosed with msa. I let her know of my own training practices. My part of our subsequent exchanges became “shaky man” in Stumptuous.
    Allow me to recommend a biography of a Harvard professor of cardiology diagnosed with Lewy Body dementia. Graboys, T. and Zheutlin, P Life in the Balance, Sterling Publishing, NY, 2008.
    I asked a student to read from this book during a recent lecture to medical students on living with PD, fearing breaking down if reading it myself.
    Best wishes
    Neil

  12. Differences between SuperNuclear Palsy, CBGD, and Parkinson’s Syndromes « CBGD Info says:

    October 29th, 2011at 6:55 pm(#)

    […] Parkinson’s: Symptoms may start around the age of 40 or younger. It can start slowy and progress slowly. Some symptoms  are stiffness, rigidity, a stiff or masked expressions on the face,  tremors or uncontrollable  movements.  There are drugs that can help control or slow the progression of Parkinson’s.  Exercise seems to help also.(see the blog Shaky Man in gym) […]

  13. David Blatt says:

    December 3rd, 2011at 7:46 pm(#)

    Neil inspires me. I also have Parkinson’s disease, I am 55 years old, the Parkinson’s disease was diagnosed when I was 41 years old. Neil and I have chosen different methods of challenging conventional attitudes about what people with Parkinson’s disease should be able to do. He has emphasized weight training, i have emphasized speed balance and agility. Neil lifts far more weight than I can lift. I am grateful that my exercise program has enabled me to continue skiing. I still can ski slalom race courses and advanced mogul runs 14 years after my Parkinson’s disease was diagnosed.My YouTube channel is http://www.youtube.com/user/davidhblattmd

  14. Neil says:

    December 4th, 2011at 7:40 pm(#)

    David
    Am honoured you’ve read of my exercise habits and most grateful for your remarks. We appear to share a belief, and supporting histories, that people living with Parkinson’s can function at far higher levels of physical competence than most assume. We probably also agree that our competence levels flow from persistent practice.
    Where my history seems to have varied from yours is that I commenced an exercise regime for general health rather than as therapy for Parkinson’s. My good fortune, at my first gym session, was to meet and be guided (bullied?) by a lady who knew nothing about Parkinson’s but plenty about hard work. Hard training plus the setting of achievable targets were the keys to surprising progress.
    Admiring your agility, I’ve injected agility tasks into my programs.
    Let’s exchange views and experiences into the future.
    Many thanks. All the best, Neil

  15. Jacqui HIatt says:

    June 19th, 2012at 10:37 am(#)

    Duuuuude! (when it’s typed like that it is the highest compliment)I just read your writings and feel so inadequate! I don’t have PD but am dealing with issues that have made me want to “play it safe” – NO More!! I feel like I can do anything after reading your post. Thanks for sharing and continuing to share your experience, but most importantly your attitude in how you address it. You are climbing this unsurmountable mountain – not sitting at the bottom saying “no way, they say I can’t do it”. One step at a time dude.

    Peace – Jacqui

  16. Neil says:

    June 23rd, 2012at 6:19 am(#)

    Jacqui
    Most gratefull for your generous words. It does concern me that many diagnosed with PD decide that their diagnosis signals immediate invalidity. It lifts me to be told that my experience might have helped someone in some tiny way.
    You’re far from inadequate. You wouldn’t have written here, if you were.
    Best wishes
    Neil


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