I edited this title at 9:35 AM, 8/14/19 adding "...says she... 98%..."
Her secret? No secret.
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Am I vindicated?
Here is a PWP, 10 years in, who says she ... - Cure Parkinson's
Here is a PWP, 10 years in, who says she is 98% symptom-free. Interview with Clinical Research Scientist Prof. Karen Raphael
Written by
MBAnderson
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131 Replies
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Thanks for posting, this is inspiring!
Very inspiring! I need to increase the frequency and duration of my intense exercise.
Karen is on this site as Raphaekg. 😊
Thx for finding her, Jim. @Raphaekg u are an inspiration- I’m trying to find and Follow You from my iPhone version of this App w difficulty. Pls follow me back (easier)?
4:30am wake up followed by 90 minutes intensive workout, before breakfast. Every day. That is commitment.
Vindicated about what?
I have contended that there are PWP who, because of their regime, are symptom-free or virtually symptom-free and some on the forum insist that can't be and have challenged me to identify one such person. Presto.
But couldn't you find a symptom free PwP who credits Snickers candy bars for their success instead of running on a treadmill every day for 90+ minutes? 
Ha. Good one. If only life were that easy.
Thanks for posting that . I do agree about the exercise bc I truly believe I would be worse with my PD had I not already been a runner when diagnosed and still continue to run. I too am on more cd/ld then most to enable me to continue with my marathon running but I am by no means symptom free and to be realistic, my disease is progressing . But I will continue to exercise not just for my body but for my mind and soul. ❤️ Karen
that is amazing..what does one do if they have pk.,fibro., and chronic fatigue? exercise is so painful if have chronic fatigue/fibro but everything i read about pk. says how important it is to exercise...any suggestions?
How about a stationary bike?
It is the effort that is important, not exactly the type of aerobic exercise...
Do you think this is true? The "effort" more than the exercise itself? If so, then I will really try and encourage my hubby to exercise. Says it makes him tired. I say yes that's true but it will help produce more dopamine. He was never an exerciser. However, he was always busy with yard work, house maintenance, and active. For work he walked through many of a building as a fire/monitor system inspector/installer. Loved to hike. Now he can't walk down our 300 foot driveway to pick up the mail.
Yes I too was married to a “doer” who was always doing something , yard work, photography, taxidermy (a hobby but he was so good he could have made a business). With this disease his need to be doing is still strong but his executive function is missing . This causes so many falls and damage. I do believe intense exercise might help but in his present circumstance, a small group home, The physical therapy is limited.
Ess)
it's a good idea. have a friend with fibro who has found that a stationary bike works best for her. it's all so overwhelming. was diagnosed with pd about 1-2 months ago but have had fibro/chronic fatigue (bulging disc, cervical stenosis and on and on) for over a dozen years. i've tried to go back to yoga which i had practiced 4+ days a week until fibro came to visit. i found after an hour of flow i spent the rest of the day in bed. still tried off and on. now i try every day to do even 15 minutes of yoga when start shaking. it helps so much but my body hurts so much afterward that i feel like i'm going in circles. we are in the process of moving from a lg. house to a small condo that has a gym two doors away. thinking i will go in and see if can use their stationary bike to see how i can manage. does b1 and/or b12 help? my dr. hasn't mentioned either. thanks much...
Nadine, it's will power we all need. Any kind of exercise even for 5-10 min is better than none at all. Keep up the good work, it always pays off!
My husband had a surgery about 3 weeks ago. He slowly started walking again, not 3 miles like he did before surgery, but he is working on it. Tonight he walked 5,000 steps which is half the distance his doctor recommended (10,000 steps a day).
If you are not on B1 and B12 yet, I highly recommend them both, judging from my husband. In general, B complex is recommended by naturopaths and nutritionists especially for PwP.
Bravo to you and your husband. He's on the road to recovery. My hubby is on the B1 but seems when we get to 4 tablets he starts freezing. Going down to 3 tablets and my also reduce his PD meds (carb/levo) down to 5.
wow! i'm impressed. i have several bulging discs, cervical stenosis, etc. but after two awful surgeries within the last few years i refuse to even think about dealing with my neck or my back. i started the b1 today (500 mg.) do i take it more than once a day? better on an empty or full stomach? will start on b12 next week. i have a tendency to have odd reactions to meds, vitamins, etc. so i only add one at a time. hope your husband is doing well today. thank you so much for your help.
Hello Nadine,
Every PwP is different. I am not sure if 500mg is/is not enough for you. Start with this dose and see how you feel. You have to titrate depending on symptoms worsening or improving. Yes, best to take it before breakfast or before lunch. I am not Dr. Costantini 
the Italian neurologist who researched and introduced B1 HCL to PwP. Before his health problem, he was available to everyone who wanted his help/expertise/protocol. We contacted him (email with videos of walking and reading), and he recommended 100mg X 2 week IM for my husband. If you search this site (box upper right Search HealthUnlocked), you will find an abundance of information regarding Dr. Costantini and B1.
healthunlocked.com/parkinso...
thank you so much for your help.it really means so much to me that there are people out there like you. i check in with the fibro group. we all have such different "illnesses" along with fibro that it's hard to figure what might help or not. it appears that people with pd have many similar issues so can try to put together what might be helpful. again, thanks much.
You are very welcome. When I first joined this site, I didn't know much about PD therapy, supplements, etc. Thanks to the good people here, I learned A LOT and I am ever thankful to them.
Always my pleasure to help people just as people here have helped me in this journey.
I hear you. My husband with PD has arthritis and severe sciatic pain down his legs which prevent any type of exercise. Very disheartening 🙁
i'm so sorry to hear about your husband. it has to be so frustrating. it sounds like you are doing whatever you can to help him.that takes a special person. he is lucky to have you. i was reading about alternatives to exercise but not sure how successful they are. i tried electrical stimulation years ago for fibro with nothing positive but might help someone else. it is wonderful to hear about people who manage all this exercise but like you said it is disheartening for others. hope you are able to find something to help him.
Thank you for your kind words Nadine. I try to do whatever I can to help him. Tried infra red light therapy for a while but he didn't think it helped so he's stopped that. He was diagnosed 14 years ago. He's been taking B1 & B12 for a couple of years and now celery seed extract too but it's the pain that's so difficult to live with. He was doing Qi gong & PD exercise class twice a week until the pain became so bad that he had to stop.
He had spinal surgery (discectomy & decompression for stenosis) 6 weeks ago which doesn't seem to have helped.
Hope you find something to help you soon.
I think your headline may be the tiniest bit misleading.
Her interview is dated 31 May 2018
Her facebook page quote 24 January 2018. Close enough for simultaneous in the context of her regime and symptom free.
Facebook "But meanwhile, whole chunks of my life are changed by PD. PD affects my ability to think as quickly as I used to think. PD affects my ability to stay awake past dinner or do anything social, if it will end after 7 p.m. PD affects my ability to swallow or be away from a bathroom for very long. PD directly affects my relationship with my family, and not in great ways. And now and then, my medication –for some reason I don’t understand– doesn’t work. And my body tremors violently. And every muscle in my body knots up. And the pain is not something I want you to ever have to experience. I cannot move at all. Frozen."
The interview "With the blessing of my neurologist, I reduced the amount of levodopa I was taking. Now, another 18 months later, I don’t get Off periods anymore. Even if I skip a dose or two, I am okay, and I no longer have any tremor or rigidity."
Hardly either unmedicated, or symptom free
Good solid stuff in her interview though - particularly regarding pharma research, which I see she is considering applying for funding for.
Don't get me wrong - I consider exercise critical to my health and my PD control plans. That is pretty much universal though from JP to Dr Naheed Khan - the neurologist I spoke to when she assessed my Dad after his bowel section disaster londonbridgehospital.com/LB...
Her advice "exercise, regular high intensity exercise, and intermittent fasting (2 or 3 times a week) are the best things YOU can do to manage YOUR parksinsons disease"
Okay, you got me. I am not vindicated.
Admittedly, I had not read her most recent stuff and was remembering her having said, "I have had no motor symptoms the past 18 months."
I am, however, going to stick with my contention that if a newly diagnosed person pulls out all the stops and becomes fit and by fit, I mean her level of fitness, they can be symptom-free or close to it and lead mostly a normal life.
thank you for this post....it is my belief that i too can have similar results. I try hard each day to exercise one hour. I wish I had had this vision three years ago when I was still on my feet. I was working, driving getting on well enough to be content. However, I was not in any groups and had not discovered that many people find ways to keep Parfkinsons from destroying their lives - usually through exercise. careful use of medicine and supplements, lots of ideas and support from you guys. I am also talking with my body - telling it things like " you have been a great body for all of my life - dont let a little Parkinsons stop you!" then I self talk to my right leg - "come on leg - relax - remember that you are my leg. you belong to me!" the weird thing is that this disease knows what i am trying to do, and will get back at me by making my sx miserable for one or two days.
Icequeen10 ,
Nice post but IMO The body works better if it receives orders so you don't indulge it too much.😊😊😊
Icequeen, look up Dr. Joe Dispenza on YouTube, it’s been life changing for me. My disease is totally under control/reversed. I’m leading a normal life. Constance
Winnie:
So who is the "real" Karen? Did she work a miracle in 6 months between FB and her interview? Why no specifics from a Ph.d. who by training are often micro detailed to the point of O/C. Did she really have PD in the first place? Did she have her neurologist do a before and after UPDRS measurement? What was the difference? Was she on Sinemet or Stalevo, MP, or another drug protocol? Reduced from what to what? Intensive 90 minute treadmill? What was your VO2 Max level, watts, mets, minutes per mile, etc.?
If someone is working a miracle, please, please be very specific in explaining what you are doing.
S
Gosh. I wasn't looking to challenge the "real" Karen. Just pull Marc's leg gently about "vindicated" with a bit of RTFQ.
I didn't get the impression Karen was evangalising for her "only solution", nor knocking conventional medicine and pharmaceutical research, nor whining and self-pitying like John Pepper. Just replying to questions in an interview and drum-beating for investment in research into PD on the facebook post. (I did pretty much skim it though). And unlike JP there was nothing in what she said to particularly cause me to doubt her PD diagnosis (like "my neuro at my last appointment told me it was not idiopathic Parkinsons disease"). Her description on Facebook which I quoted sounded like PD to me.
Nor is there anything incredible in vigorous exercise improving her condition. As I noted to Marc, that is pretty much mainstream neurology now, not fringe alternative.
I do think Karen would be happy for us to point out that she was discussing her personal experiences, and not a statistically significant conclusion from a multi-centre, placebo double blind, phase 3 trial (how do you blind placebo control vigorous exercise?)
As such things like "near Keto state" and fasting before exercise, and not day dreaming while exercising, are statements of faith rather than evidenced necessary protocols. Karen has done what she's done, and it worked for her. She hasn't compared what she's done with alternatives. She hasn't tried strenuous exercise, moderate exercise, light exercise and no exercise - each for years 7 and 8 after diagnosis, and compared results. Never mind organised a statistically valid cohort of 500+ participants for such an experiment. I am getting good results with much less (but none-the-less regular and vigorous) exercise. Maybe she would too.
And just to tug Marc's leg again, the only supplement I recall her mentioning was Mannitol - and that was to (very properly) point out the flaws in the "research" methodology.
As for diet... My only reasonable conclusion is that a vegetarian diet since her late teens was responsible for early onset PD with symptoms more severe than normal, and assuredly not a recommendation for a regime to manage or reduce PD.
I really liked her discussion of research, and I think her criticisms of methodology in PD research are recognised and acknowledged by many in the field.
So I agree - if you are "selling the miracle" you would want the precision you mention. Merely to report personal experiences, I wouldn't expect it. And you can't blame Karen for the interpretation of forum members. Marc wrote his own headline.
As usual, your points are well taken.
I cannot tell if, in the 3rd paragraph up from the bottom, you are being facetious because, otherwise, it is not possible for a person as smart as you to believe being a vegetarian causes Parkinson's??
Again, you are right, she is not symptom-free as I said, so I stand corrected.
My contention restated with all appropriate qualifiers; I believe that for most people (51%) who are fundamentally healthy and who have been exercising daily, if, when they are newly diagnosed, they engage in intense exercise daily and adopt appropriate lifestyle and diet, they can lead a reasonably normal life.
By "intense" I mean at minimum 45 minutes, and preferably an hour, of strenuous aerobic exercise 7 days a week, combined with flexibility and strength training (which I don't consider all that intense. It's exercise.)
I quit running around 63 and was diagnosed at 65. Had I returned to my old ways, immediately, my PD would now be an irritation, an inconvenience.
When I find Karen's extreme exercise group on Facebook, I suspect we will find several people who because of their exercise regimen are very close to symptom-free. No matter how we wrestle over semantics, these people have their PD well under control because of exercise and lifestyle.
Thank you for pulling my leg. It would be much less fun if we were not kept on our toes.
Marc
PS. I fully understand that this level of exercise is well beyond the vast majority of PWP, of which I am one, and is, undoubtedly, frustrating for many which is why my qualifiers are important, i.e., I am not referring to a typical PWP. For the rest of us, our job is to do the best we can.
Marc
It's good to kid around with you and to have fun.
Yes - my comment about vegetarianism causing PD was satirical. But at the same time, I see no case for Karens vegetarian diet, being considered part of her regime for PD control. ("adopt appropriate lifestyle and diet"). Karen has a vegetarian diet now, and had one for most of her life before her diagnosis. There is therefore nothing to suggest any aspect of her diet is important in her disease control or development. What changed - the factor which turned the condition round - was exercise, not diet.
It will be interesting to see if you find your evidence of people managing PD entirely by exercise. Personally I hae me doots. I'm sure it is an important factor, head and shoulders THE MOST important factor. Laurie Mischley effectively makes the same claim in her talk about diet when she states that 10 years on, people who exercised every day were no worse after 10 years, and many were actually better after 10 years than on first diagnosis. But these people seem to be awful coy and shy. Neither of us has found one yet.
For sure though, I am going to keep exercising - and get back a bit more intensity.
WtP
Poo,
I'd like your opinion of my most recent reply to Sharon.
My 10 mile/day running continued into my early sixties during which time I was completely and totally symptom-free -- as in 100%. Shortly after I quit running my symptoms showed up. Would you say that's an unrelated coincidence?
Secondly, Dr. Raphael said in her most recent post she is 98% symptom-free.
I don't believe there's a person on this forum 10 years in who, if they became 98% symptom-free, would not consider themselves symptom-free.
If any PWP is 98% symptom-free no one would know they had Parkinson's. Isn't that, for all intents and purposes, symptom-free?
Considering the context, are you really going to stick me with 2%? And, if you are, you could at least acknowledge you're a nitpicker.
Marc
PS. What you think the dollar value is in lost GDP due to nitpicker's?
Back at my PC now rather than trying to use my phone away from base, I can try some more serious nit-picking. However, the thread has been butchered, whether by moderation from admin, or sulky post withdrawals, and its a bit mucky.
I wouldn't be confident I have any sort of clear chronology for Karens sometimes conflicting descriptions of her condition , regimin, and improvements, but...
Still looks like she is on 3x stalevo a day
98% is a suspect number, and does nothing for me. You're right it completely equals 100% - so just say so. 100% up late partying? 100% not tied to the bathroom? Grimsby harbour
Chronology - I don't get the impression she was racked with pain, and freezing in January 2018, and then promptly ramped her exercise so that by May 2018 she was significantly improved, and has continued that trend to achieve 98% symptom free (although taking 3x stalevo) just recently. It all seems a bit muddled
She was vegetarian, and running and vigorous exercising amounts far in excess of most of us, or your suggested therapy, on diagnosis (best I can read it)
The Datscan stuff is just silly. Her doctor informs her that long term use of C/L mends the neurons and produces a false scan result???????? I remember you telling me how long term C/L is neuroprotective and neurotropic. Apart from it not making sense, I can find no affirmation for the claim. Datscans are routinely used in trials on patients with long term C/L use (Bristol GDNF trial would be one example). I am at Toulouse clinic Monday week, and will talk to the nuclear medicine team, but will not be too shocked if there is no such thing as the tooth fairy.
So - in spite of long term therapy invalidating Datscans, she had one and it showed "no PD". This was of course not "no PD due to longterm C/L therapy" but "no PD due to my PD which would have been detected by a Datscan at onset, being reversed, JP style, by new neurons sprouting in response to the BDNF produced by my uber-exercise regime" - easily confused with PD being reversed by prolonged C/L use, which the doctor warned about
Although, if she stops exercising for 3 days, all those newly sprouted neurons die off again (as a Datscan would doubtless confirm) and she gets her symptoms back.
Enough. Fine to say "I was diagnosed with PD, and have managed my condition successfully with intensive exercise" - but easy on the Unicorns stuff.
2 very useful phrases - bits of advice from a former boss - have served me well over the years
"If it looks too good to be true, it probably is"
and
"Sometimes things are how they seem"
The balance of probability from Karen's own reported Datscan result, is that her serious and disabling neurological condition, which she has successfully controlled with exceptional exercise, is not idiopathic Parkinsons disease.
Winnie said:
"The balance of probability ... is that her ... neurological condition ... is not idiopathic Parkinsons disease."
Wow, ... that's a BIG call!
Not really. An autopsy is the sure diagnosis. Failing that Datscan's are the best diagnostic guide. Based on the limited information in her own account - "No PD" as her own precis of the diagnostic report from the scan, then the balance of probability...
Well, I would be shocked if I ever told you long-term use of C/L is neuroprotective and neurotrophic. You have to show me that.
Quite. But that was effectively her description of her doctors alleged reservation about the scan which he went ahead and carried out. Only for that scan to show "no pd",and karen then seek to interpret that as cured by newly sprouted neurons.
Mis-understanding alert!
MBA was asking you to clarify the following statement made by you: "I remember you telling me how long term C/L is neuroprotective and neurotropic."
Maybe you meant "not neuroprotective ..."?
Yup. That's right. I don't remember marc telling me he thinks long term medication neuroprotective or neurotrophic. He believes quite the opposite. I apologise for the irony which is not the highest plane of humour. Marcs beliefs are directly opposite of the apparent justification for datscan unreliability alleged by her doctor. That was my point
I think the irony was lost on both of us.
While we're here, Grimsby harbour means "smells fishy", right?
Yup. At least I've managed to avoid rhyming slang so far...
check your chat messages
Whew! Thank you for clarifying that. For a while I thought I must have an evil twin.
Wow. She's posted a ton of stuff. I only skimmed a few bits but I'm picking up a scent of Grimsby harbour and I have Parkinson's and have lost my sense of smell. In 2 of her replies in the last 18 hours that I scanned she says she was an active runner at the time of onset of pd so you figure your answer to your first question. She also says she takes stalevo 3 times a day, so symptom free is medicated symptom free, and not really what you imply.
I didn't get as fsr as the reply you refer to but the stuff I read had plenty of references to current symptoms
Hey Marc, you mentioned an "extreme exercise" Facebook group. Can you send me a link if you find it? Cheers!
"After about two years of exercising every single day, which included at least 90 minutes of running on a treadmill at a pretty intense pace..."
I am a long time runner... At least for me, running 90 minutes a day is a lot of running...
And also for me, running 90 minutes a day at a "pretty intense pace" sounds absurd unless she is an "elite" athlete...
Or maybe her idea of "pretty intense" is not really that intense...
Or maybe "which included" is supposed to mean she did not do this running every day...
Or maybe she is an elite athlete...
I find Karen Raphael inspiring. Her message is a realistic one for those who can exercise hard - that it really is worth it. For me intense exercise is a challenge; but when I get there it's great (so long as I avoid hazards like shoulder tendonitus :-)). But it only works as long as you continue to do it.
Karen gives a little more detail in this HU comment (March 2018):
Fascinating... she clarifies... "minimum of 90 minutes but usually two hours daily''
So say she runs 4 days/week for 120 minutes and runs 3 days/week for 90 minutes...
that 12.5 hours per week... and if she is run at a 12 minute/mile paces she is running 62.5 miles per week, and if at a 10 min/mile pace, 75 miles per week... if her average pace is higher than this, all the more impressive... and she does this day after day, week after week... I think she may have missed he calling as a world class marathon or ultra-marathon runner!!!
For a point of reference, I am not a great runner... I ran 2 marathons (many years ago), and think I did not run much more than 30 miles a week at the peak of my training...
Once I ran 5 mile on 5 consecutive days... and proceeded to pee blood...
So where does this leave us? I read the Dr. Raphael article yesterday and took myself out this morning for a test run to see what it would be like to run for a longer time than my 80 % max heart rate (140 ish) for 30 minutes. I usually do 40-45 mins. I'm 51, mild symptoms, just recently dx, looking to curb/stop progression. Accirding to my fit bit, I ran 7.87 miles in 1:09:55. My avg heart rate was 136 bpm. I intentionally took a less intense pace than normal because I have symptoms in my left foot. when i run, after a while my foot starts to tighten up and soreness develops. I want to be able to replicate if I need to up the time of running. I don't like treadmills. I felt fine the entire time. At the pace I was running (and I checked frequently), I was below the 80 percent mark. I was probbably around 125-130 ish overall. At the end of my run I added 8 all out sprints (80 yds) to try and up the heart rate overall. I actually enjoyed the run and was kind of in a cruising mode but sweating and had intensity but like I said, not as intense as my 30-45 min 80 % max heart rate. Karen said she would be at 175 bpm for extended periods. I struggle to comprehend that. When I all out sprint, my fitbit tells me I get upwards of 165-170. If anyone is like me, I just want to setttle on what needs done and then do it forever and hope for the best. John
"Where does this leave us?" With more hope, more motivation, and goals.
As you are running nearly 8 miles now, you are nearly home free. Good going. You've done that in a short amount of time. I hope you're proud of your accomplishment.
I am and you have been a big help Marc.
I wouldn't obsess too much over the details such as percent of capacity, heart rate, and the like. You got to 8 miles/day in a couple months. That is impressive by anybody's measure. IMHO, if you can run 8, 8 minute miles every other day and add to that some flexibility and strength training on alternate days, then apply the same discipline to your nutrition and lifestyle, you will be well ahead of the game.
BTW, HERE I am. Karen Raphael. Someone told me that my info was posted on HealthUnlocked. So, I am possibly available in about an hour for any specific questions. Have a meeting to go to now! (Yup, 10 years in, and working FT as a professor.)
Karen,
Thank you very much for coming on here.
If you will check in on us, you will find this a very stimulating and robust forum.
I hope you can remain available for a few days, at least, to answer questions. Your lifestyle will trigger many.
I'm so jealous -- of your running. It may never happen, but I'm trying to get back to it.
Marc
Very inspiring! I have a question for you. Were you (Are you) considered a tremor dominant PWP? Do you think type of PD might influence what therapy/supplements/or exercise regime would best suit the PWP? You see, I have the other kind - PIGD subtype perhaps - with rigidity as my main obvious symptom. I would love to run for 90 mins a day but one of my interfering problems is my left big toe starts to twist and stick up. Even going for a walk has been a struggle, and forget social hikes now. I can bike on my stationary bike, but I love being outside. Do you have any comments or suggestions for my scenario.
Sounds like you are doing awesome Karen! Do you think of yourself as symptom free? Are you on a special diet or take supplements that you find helpful? You’re an inspiration to us all and I’m sure we would welcome anything you can share! Thank you, Connie 😊
I have many GI problems, secondary to paralytic ileus after a surgery (GI function stopped for 3 weeks). I was already a vegan; now I am a gluten-free vegan. I consider my PD motor symptoms to be "controlled" by my intensive exercise regimen. If I go for 3 or more days without access to prolonged endurance exercise (often during travel, in which sleep and diet are also disturbed), I can become symptomatic, acutely so. I believe that the BDNF produced by prolonged endurance exercise produces a state of neuroprotection but one that is rather short-lived. An alternate explanation is that exercise itself leads to an increase in dopamine production among remaining dopaminergic neurons.
As a research scientist, I can never 'know' based upon my own experience WHY I have done so well. I can only hypothesize. My Dad had PD and lived for about 25 years after diagnosis. For my first two years after my own diagnosis, we would sit and compare tremors. (I was always a hard core exerciser, but it still took two years to start to see symptom remission...and the remission has continued without change since the interview published more than a year ago.) Would I have had a benign course if I didn't exercise the way I do? Who knows; all I know is that I am not going to self-experiment to find out. Reversal of symptoms and reduction of med dose (but I still do take Stalevo 100 3x/day) has kept my PD doc shaking her head and saying that she has never seen something like my symptom pattern happen before...but she has never had a patient exercise as hard and consistently as I do.
BTW, there is a small FB group of high intensity exercisers --including the American Ninja with PD-- who experience symptom remission from intensive exercise. I feel like a slacker compared to some of them, but I am older than most. If I wasn't incredibly fit at the time I developed my early PD symptoms, I don't know if it would have been possible to increase the volume and intensity to do what I do now 7 days/week. I think that, depending on the treadmill, I am doing anywhere between 75 and 90 miles/week of running. Quite a lot. I am NOT a speed demon. My sprints may be around 8 mph, but I'm typically running 6.5-7 mph these days. I wear a Fitbit, so that's the only way I have a sense. Honestly, I focus more on subjective intensity than speed or actual heart rate, especially since my HR is quite high for someone who works out like I do. I can ring the sweat out of my gym clothing when I am done, making a nice puddle on my bathroom floor.
I’m a believer!! It shows what true dedication is and the payoff is amazing! I’m not sure I could ever duplicate your efforts or results but you certainly inspire me to push myself harder and to my own limits! Thank you for sharing!! Connie 😊
Can you please provide the link of FB page you have mentioned
I have been running 4 times a week or more since I was 14 and I'm 53 today. In high school I ran a 5:12 mile and a 2:50 marathon. I do not have PD but another neurological disorder known as SCA1. I have not been able to run 7 mph for any distance for over a decade, and if you look up stats for the general population I am not unusual. Your running 6.5 to 7 mph at your age puts you WAY outside the athletic bell curve and to me that means everything about your situation is unique. I firmly believe exercise is key to slowing progression of neurological disorders, but I do not take your personal experience or the combination of a handful of exceptional athletes with PD who have maintained intense exercise to be proof of efficacy that intense exercise is good for all patients with PD. On the other hand I DO think that when 1000 plus people say mannitol helped in someway then that is proof even if it is selected for efficacy. Plus there is science to explain the why of mannitol, but there is no science to explain the why of intense exercise as a therapy. Congrats to you for your success, and I whole heartedly endorse your advice to stay active and help others with PD by sharing your experiences, but I think you are dismissing much science that has equal potential because it has not yet been tested as a "falsifiable hypothesis". I also am a huge believer in the hypothesis proposed by Dr Bredesen that neurological disorders are best treated with a combination of therapies. Exercise yes, but also a healthy diet, helpful lifestyle changes (like yoga etc.), medicine, and supplements.
Let's see if I get what's going on here.
Here we have a 65-year-old PWP working full-time in a demanding job that requires focus and precision who feels she has her Parkinson's under control because she has the discipline and commitment to control her diet, lifestyle and get her butt out of bed before dawn to engage in intense exercise every day (read; every day) and some want to nitpick her regimen.
Good grief.
I'd be impressed if there was a single person on this forum, 10 years in like she is, who wouldn't trade situations with her in a New York second. I surely would.
That scientists have not yet fully explained why intense exercise slows progression shouldn't make a difference to PWP because, apart from all the other reasons, there are millions of things that we know to be factual, but can't explain why. People get Parkinson's. Why? (BTW, the literature is full of credible hypothesis.)
How can there be science that explains why mannitol works when there is not science that proves it works?
The only basis for ingesting the stuff is anecdotal or as you might say "a handful." Far as I know, some lab mixed together some mannitol and a/syn in a petri dish and made claims. B F D. You're claiming that because a thousand people claim a benefit from mannitol as proof that mannitol is effective is not even proof that the people who say they benefit from it have benefited from it -- unless every 1 of them controlled for every variable.
The only reason you get the claim a 65-year-old who can run 6 or 7 miles is WAY outside the bell curve is because the percent of 65-year-olds who have tried/engaged that level of exercise throughout their life is way, way outside the bell curve. I'm satisfied that the opposite is true, i.e., for a fundamentally healthy person that has exercised and been a runner throughout their life, running 6 or 7 miles at 65 isn't even a big deal.
Please direct me to the statements "dismissing much science."
You subscribe to Dr. Bredesen's theory. Don't we all.
sunvox said: "... there is no science to explain the why of intense exercise as a therapy."
Actually, there is some, at least for high-cadence cycling:
Exercise Therapy for Parkinson's Disease: Pedaling Rate Is Related to Changes in Motor Connectivity (2016):
ncbi.nlm.nih.gov/pmc/articl...
thanks jeffreyn, in my opinion it could not be otherwise. Researchers uses to divide the problem into "Structure" and "Function" (of an organism, organ or even in a proteins). The two things are related to each other by a fact: the function determines the structure, in other words the forced and intense exercise of the body will influence all the structures of the connected organs including the networks of brain cells as well as the muscles and etc. Hard to say to what extent and at what times but it will.
An example:
There are many reasons to think that exercise helps in PD. And the mannitol stuff is nonsense; the guy first promoting it was never even diagnosed with PD; he self-diagnosed (sounds like he had normal pressure hydrocephalus; mannitol has been used as treatment for it). But that is my only comment on mannitol; don't get me started!
Exercise has repeatedly been shown to increase levels of brain derived neurotrophic factor (BDNF) which protects delicate dopaminergic neurons and promotes neuroplasticity. Exercise promoted dopamine release. It MAY induce a ketogenic state. Increasing evidence indicates that extreme exercise can affect epigenetics (gene expression) particularly for genes related to alpha-synuclein expression? This is based on published research in peer-reviewed journals.
Yes, I believe that my lifetime of healthy diet, meditation, and supplements has contributed, but the key for me is exercise. I feel that it is as important as any dopaminergic meds that I take.
I never said there is no science supporting exercise. I am well aware of the science and often provide links to the research myself proving that exercise is neuroprotective. What is not proven or in any single research paper is whether exercise at the level described in this discussion is helpful. In fact I do know of one case study of a person with Huntington's Disease who was a marathon runner that showed his training may have had a negative impact on his neurological condition.
sciencedirect.com/science/a...
As to mannitol we must agree to disagree. Although it is true that lab studies and studies in animals often do not translate into successful results in humans, it is also true that many animal studies do, in fact, lead to positive results in humans. With regards to mannitol, you are completely ignoring the role of oligomerization and the immense amount of science related to that field. Scientists and researchers are rapidly coming to the conclusion that molecules that can prevent oligomerization have the potential to show benefit in several neurological disorders:
-
ncbi.nlm.nih.gov/pubmed/295...
ncbi.nlm.nih.gov/pmc/articl...
ncbi.nlm.nih.gov/pmc/articl...
thelancet.com/journals/lane...
-
nebula.wsimg.com/2d91f65f64...
link.springer.com/article/1...
and mannitol is a potent disruptor of the BBB and enhancer of autophagy:
jbc.org/content/288/24/1757...
I too could provide reams of additional research to support my position but I'm on vacation in Maine so all I will say is that if Simon of Science of Parkinson's thinks there is some evidence worth considering in regards to mannitol then perhaps it is not the joke of a molecule you think, and I would argue further that there are many other similar molecules worth considering in addition to exercise, a healthy diet, and good lifestyle choices.
Joe in NY
Apparently, some feel she may be exaggerating. Unless a person has been a serious, long-distance runner, that would be understandable. Perhaps she is exaggerating, but I doubt it. As a long-distance runner, the nuance of her descriptions ring true to me. A heart rate of 175 is not noteworthy.
She says she runs/ran 7-8 mph. 8 mph is a 7 and 1/2 minute mile.
I began running at 31 and ran 10, 7 minute miles, 6 days per week for 32 years. Every January 1, I would make a resolution and see how many consecutive days I could do that and usually I got to 20 - 25 days. One year, I went to February 12th -- 42 days, which in Minneapolis/St. Paul, Minnesota (10 below zero and thru a foot of snow) entitles me to extra brownie points. For several months in the fall, each year, I ran 14, 7 minute miles every other day.
If I had my life to live over, I should have run every other day, but if I'd my life to live over, I'd be handsome AND rich and would've kept running and PD might now be an inconvenience.
The point of which is; when I stopped running, my symptoms showed up. Perhaps the reason I contend a newly diagnosed person who attains this level of fitness can lead mostly a normal life is because I believe the level of running I was doing is what kept me symptom-free.
It may never happen again, but every day I struggle to run.
The other component which is not discussed here is nutrition/diet. That level of fitness cannot be done drinking Coke and eating Twinkies, i.e., years of fitness and good nutrition overcomes most health issues.
The only thing we can all agree on is that exercise is good for us and the more, the better.
Thanks. BTW, I have a strict regimen designed to reduce risk of injury. (Compression garment, foam roller before and after, full yoga, stretching, meditation program, stop at the slightest hint of something not feeling right, etc.) In my gym, people often assuming that I am training for a marathon. Nope. No way. I don't want to hurt myself, and I am self-competitive enough that I likely would. I have heard of too many PwP who have done well with an intensive exercise routine and then get injured. End of symptom control. And I have been a vegetarian since age 17 (now 64 years old; soon 65!), so eating fresh fruits and vegetables and a high fiber diet is second nature.
Hello! Did you ever consider natural levodopa (Velvet Bean) vs synthetic meds? Thank you.
No. "Natural" is not necessarily better, although it often is. Yes, I would choose organic fruits and vegetables over chemically-treated fruits and vegetables any day. Problem with natural sources of levodopa: Levodopa Dose control is much harder with natural sources, because it is highly variable among different plants within the same species. I try to be very strict about dose and scheduling. Dose could not easily be kept as constant with natural sources, and there is no strict regulatory control on dosing. However, there is SOME evidence that mucuna pruriens reduces risk of dyskinesias long-term.
That's less of a concern to me, because I have no dyskinesias after 10 years, possibly because of neural sprouting or protection of remaining dopaminergic neurons through BDNF or epigenetic changes caused by endurance exercise (who knows), but note that I have REDUCED my dosage rather than increased it over time, etc.
Thank you! I have found natural levodopa which is as good or better than synthetic meds. Yes, it is hard to find the right brand and dose, but it is worth trialing. Husband (PwP) takes a total of 340mg levodopa a day which includes 1/2 tablet of Sinemet in addition to 1/2 tablet of Azilect. These two are the only synthetic meds he is taking and doing great. The remaining dosage is MP.
Mediterranean diet and life-long exercise before diagnosis have been instrumental in my husband's mild symptoms. Although I was/am a health "fanatic," we didn't always buy organic products as opposed to present--everything we buy now is organic, including grass-fed meats.
Dr. Rafel Gonzalez' book "Mucuna versus Parkinson" has helped us tremendously to understand Mucuna Pruriens' superior benefits over synthetic meds. In addition, Dr. Costantini's B1 HCL protocol was/is proven to halt progression--at least my (husband's) personal experience. A lot of patients on this site can attest to that.
Do you feel that matters for the diagnosis to be accurate?
You spoke of ketones being important for the brain but clearly you are not a ketogenic diet person or could you expand on diet and ketosis?
Ketones. A controversial matter. Since that interview, I've gotten a bit more skeptical about the role of ketones for me personally. I run while fasting (last meal 7pm at the latest the night before), and some experts argue that the reason that I can keep running without fatigue is that I have an induced a ketogenic state. So, I bought a blood-stick ketone monitor. I have very low body weight, so some would argue that ketosis is hard to induce with low % body fat. Anyway, pricking myself before or after: a little bit of ketone production before running, following an overnight fast, but no ketones detected after my run. How does one expert explain it? Well, according to this one expert, I USED my ketones to power myself during the run. I don't know, honestly. (I actually tried a ketone supplement drink and it INTERFERED with my running.) If you can explain absence or presence of ketones in my blood through a ketogenic process, well, the scientist in me just gives up. It's not a falsifiable hypothesis.
There's also the concept that lactic acid produced during exercise can be used more efficiently than glucose to power the brain. Again, I don't know whether this is true or not. All I know is that I stop running because I don't have TIME to run anymore, not because I am exhausted. So something other than glucose must be fueling my runs.
No, great question. At the time of diagnosis, DATScan was not covered by insurance. I SO wish that I had a DATscan at time of diagnosis!
Interestingly, I recently had a DATScan because my insurance would NOW cover it. The doc doing the scan didn't want to do it, because he said that no one knows what the long term effect of all those meds I've taken for a decade might have on the scan. We did it anyway. It came back "no PD." Does that mean that my exercise encouraged increased sprouting of axons of dopaminergic neurons? That all my long-term use of meds invalidated the DatScan? Or that I never had PD? Pick whatever answer you like. I don't know the truth and no one does. My doc tried to decrease my med dosage further after the DATScan and I became acutely symptomatic. Thus, I believe that I have PD but can control it after 10 years with low dose meds and high dose exercise.
Do supplements play an important role for you? If so, any general recommendations?
This is one of those "do as I say, not as I do" issues. I take a number of supplements. Thus, I cannot isolate whether any one of them is particularly helpful. If I had to guess, I would say NAC and nanoparticled curcumin (which can cross the blood brain barrier).
The second reference is useful.
What percentage of the people following his site are capable of 90 minutes of vigorous exercise?
Condor,
I take it as a given that we all understand that the vast majority PWP cannot engage in this level of exercise. It should also be understood that no one is suggesting they should or is faulting them for not. Perhaps, many feel frustrated thinking that.
The point being made is that for those who are able, vigorous exercise will serve them well and if it's vigorous enough, it may keep their symptoms mostly under control.
Thank you Karen!
A very hopeful post, I have recently started to run again, want to work myself up to the 3 miles a day like I used to do. I'll report how that goes as I add to the milage. 8)
God Speed!
Interesting. I guess we are all different. Personally I’d rather sleep in and take a pill than run for 90 mins a day, even if I could!
I would, too, BUT there is no such pill...
I know you say that in jest and there is some truth to it for many, but I found there is nothing, no drug, illicit or otherwise, that can match the feeling, the high from running long distances. I used to travel a lot for business, meetings all day, blah, blah, blah, but I worked my schedule and my life around being able to run every day. It was truly thrilling. Smartest thing I ever did. Ah, for the good ole days.
I was actually serious, BUT there is no pill which actually slows or stops progression. Thus, I will exercise diligently and intensely. It is our best hope for now.
Hi there. I think all of this information is wonderful , as an ultra long distance runner for over 20 years , diagnosed over 6 years ago with PD , I’m 56 now , exercise of any kind is beneficial. I wish I could say that I can continue to do my 50 milers but realistically I can’t. I get fatigued and then I fall. I can continue to run my marathons however it’s not as easy as it used to be and when I push my intensity and speed , I pay for it and am fatigued the rest of the day . So I do an average pace and enjoy talking with friends as I run . I do work full time as well and also lift weights and try to stay in good shape and wish I could say I’m symptom free. I am encouraged by her story. Thank you for that . Karen
It's possible. But I was diagnosed by 3 different movement docs and am still extremely responsive to levodopa. I had distinct on and off periods during my first two years. Argues against a different kind of parkinsonism. Also note familiality. My dad and I had identical and numerous risk variants on the SNCA gene.
And WHY do you decide ("pick the answer") that I had a 'kind of parkinsonism' rather than PD? Because you cannot accept the idea that exercise could change its expression? For the first two to three years (while still exercising but increasing intensity over my usual already-high intensity), I was indistinguishable from any PwP. I had spread from Stage 1 to Stage 2 (unilateral to bilateral), had to increase meds to get reasonable symptom control.
And attempt at further reduction of my meds led to reappearance of PD symptoms. It's just inconsistent with another type of parkinsonism, at least one that is not dopamine-responsive.
Thank you. I apologize for missing anyone's request for a response. Unfortunately, I do not have time to continue answering questions in this forum. I hope that I have helped a bit.
And, Kwinholt, I always say that I would never run a marathon or ultramarathon because we know that such a distance induces DAMAGE. I may run the equivalent of several marathons a week, but spread out, and on a treadmill to reduce impact on this aging body, and being hyperaware of the slightest hint of injury. You are best doing an 'average pace' (assuming you are getting your heart rate into a training zone at least some of the time) and avoiding overfatigue and injury. Wishing best to all.
My motto is, "Do all the exercise you think you can do...and then do 10% more."
(That's for average folks with PD, not former ultramarathoners.)
What does one do if you have had pd for 11yrs never exercised and going through menopause with Heavy sweating 😓 and body ache episodes, I have a treadmill at home, but always tired to jump on it, if I do I walk I usually don’t follow the next day, sometimes I think that I am just lazy, but everyone knows their own body, and mine hurts when I exercise. I also know that exercise is beneficial to body and mind, especially to PWP. Is exercise for everyone??
You need to reframe what's going on. First: identify and remove obstacles. For instance, I set up my workout clothes the night before, so it's waiting for me right when I get up. Pain? If you are deconditioned, you are probably going to have to experience SOME degree of pain as you build yourself up. One thing that helps some folks is to get a pedometer or some simple movement watch and see how many steps you walk in a typical day. Then figure out the average steps for a week. Now, not even worrying about speed, set yourself a goal for (however long it takes) 10% less than that. Chances are that you will have success WITHOUT pain. So, you need to start experiencing SUCCESS, not pain (or even with a little pain) or you have no positive reinforcement.
MBA:
As our resident "faux" exercise physiologist I am somewhat confused by this "miracle" story. Did she begin this arduous routine in 2018 or has she run high intensity workouts most of her life? My feeble understanding of this type of workout is that it normally requires several years (not months, years) to reach a level where you can run 2hours every day at 80-85% VO2Max. I checked with the one elite distance runner I know (qualified in the 5000 in the US Olympic trials and made the finals), and he substantiated this viewpoint.
If she has run this type of workout for most of her life, then it contradicts the hypothesis that "if I do high intensity cardio workouts every day, at 75-85% VO2Max, I can alleviate or ameliorate PD symptoms...essentially remaining symptom free."
I'm not suggesting I disagree with the HIT hypothesis, (far from it) within the metrics that imply HIT, I am just questioning exactly how someone who is 63-64, full time job, presumably PD, on Stalevo 3x, never ran long distance before, can undertake this type of exercise routine overnight.
S
Sharon - I really appreciate your contributions to this site. I'd just like to encourage you to be a little more kind and respectful. We are all struggling. We are all on a team we don't want to be on, but we are a team. I believe we do better when we support each other. We can -- and should -- question and even criticize others without demeaning or ridiculing them...which is what I attempting to do right now. Peace.
Hi. Where did you get the idea that I began this routine in 2018? I have run regularly since my 20s. When I was diagnosed, I increased the intensity and magnitude markedly. I have always been extremely physically active my entire adult life, not just with running but with weight lifting, long distance hiking, yoga, boxing, etc. I was trekking to Everest Base Camp (during winter; dumb) when I felt something profound change and started having clear symptoms. Needless to say, I never made it.
Please read more carefully. I said that the interview was done in 2018. It took me two years of increasing my usual already-intense exercise trajectory (starting about 10 years ago) to start seeing ANY symptom change. And it's been a couple of years now that I have been 98% symptom free.
And I do NOT know for sure whether it is a result solely of my exercise or my extremely clean vegetarian/vegan/gluten-free diet, supplements, good luck, misdiagnosis, whatever. I am my own worst skeptic, trained as a research scientist. There are plenty of research scientists who are exploring the reason(s) why prolonged endurance exercise seems to provide a type of neuroprotection not seen in any patented medicine. I have proposed some of the reasons myself, but I don't do this kind of research, so can only report/summarize what others have said.
I don't need you to believe me. You can believe what you want. But please read more carefully, when you denigrate my experience.
I am not doing long distance runs. I might run a half-marathon in a day or maybe a bit more. But that is NOT a long distance run. Not compared to ultramarathoners. I do everything possible to AVOID injury. I only run on a treadmill. I always wear compression garments and use a foam roller before and after each run, in addition to a careful stretching routine. I have NEVER run a marathon. And never plan to run one. I don't want to risk injury. It's not about the distance; it's about the apparent symptom reversal. And when I go for 3-4 days without running (Expedition boats to Galapagos and Patagonia; both had no treadmills and no decks for running) , my symptoms start to return.
Anyway, although I said that I would not be monitoring this site (because, with my routine plus work plus one early-20s post-college kid still at home who needs TLC; there is NO TIME for anything optional; I have a couch in my office for a 20-min lunchtime nap or I couldn't get through the day), I got so many notices of responses that I couldn't resist a quick check. No more. The end. Having to spend time that I DON'T have to defend myself against attitudes like yours are, unfortunately, one of the reasons that I won't be hanging out in this group.
I am extremely sorry you feel challenged to provide specifics. As a US national level middle distance runner in college (qualifying in the 800 in my junior and senior years), I am NOT denigrating your experience or your incredible running abilities at 63. 90-100 miles a week at 10 minutes per mile... 13-14 miles per day, day in and day out, is something to be very proud of. On the other hand, when you make some of the claims you have made, you have to expect someone who is more knowledgeable about running than you might be is going to ask some questions. The questions weren't personal. Sorry you felt that way.
As to your 98% symptom free status, I am glad to hear that you are. I hope in the future you will report back to us that you have weaned yourself completely off of Stalevo as well due to your exercise routine.
S
Sharon,
I don't know precisely what her level of fitness was at the time of diagnosis. Above, she says she was, "... Incredibly fit at the time of diagnosis" so we would have to translate "incredibly fit" into how many miles and at what speed to know precisely what that means. I think it reasonable that such a person could run 2, and probably 3 miles without training as a runner.
So the question for your friend in the Olympic trials is, 'how long would it take a person who is "...incredibly fit..." to go from 2 or 3 miles to 7 or 8 miles.'
I believe that such a person could do that within a few months.
I've been having private messages with jockboy on this forum and he went from being able to run 1 mile to running just under 8 miles in 2 months and he is 52 -- but newly diagnosed.
Marc
PS. Isn't some of her running 10 minute miles, which your friend would barely consider running.
There's not enough detail for me to judge her story as not credible.
Also, I take people at face value on this forum. Seems unlikely to me that she would jeopardize her employment stature and reputation fabricating a story. As W. T. Poo so aptly points out, she readily acknowledges facing the same challenges as do the rest of us.
MBA:
Yes, isn't so often true that the devil is in the details.
What is her normal "resting" heart rate? (below 50 is about right if your elite). Let's go further down the rabbit hole. The average MAXIMUM heart rate for someone who is 63-65 is roughly 155-160. So someone who is exercising at 170-175 bpm at 90-110% of VO2Max for 2 hours every day is off the proverbial charts. Way, way off MBA. Does she run at a 6 MPH pace (10-minute per mile) continuously for 2 hours to maintain that level? (12 mile run every day at her MAX). How does she calculate heart rate? 220 is for males, not for females. Both the Tanaka and Fox formulas overestimate MHR for women. The Gulati formula is much better. Still comes out for her age at 150. IOW, she is maxing out every day, day in and day out. Does her heart rate return to 50 or below with 1-2 minutes after ceasing her workout? I could go on, but you get the picture.
I simply want clarification as to whether or not she was an elite endurance athlete BEFORE her quasi-diagnosis of PD. If she was following a daily, intensive HIT routine before and up to her diagnosis, then HIT didn't prevent PD. Certainly not at the time of her Facebook comments. This distinction is a critical bit of information for those who think daily, extended HIT before PD will prevent it or minimize its symptoms.
Don't get me wrong here. I am not bashing HIT workouts or high RPM cycle workouts.
But "symptom free" is an ambiguous term without some details. We all want to learn here from other's experiences.
S
Sharon,
Winnie the Pooh pointed out that she is not symptom-free and I acknowledge that. I was wrong to say she was.
As familiar as you are with the physiology and data of runners, you should know it is not legitimate to apply averages (heart rates,) which reflects the population as a whole, (because the average person in their sixties is most likely diabetic or prediabetic and doesn't exercise at all) to an individual, much less one that is a runner -- at whatever level.
I don't know Dr. Raphael, never communicated with her and know nothing about her specifics that you're questioning.
I must misunderstand what precisely you're questioning. Are you saying it's not possible for person who is exceptionally fit to reach 8 miles a day in a few months?
So, let's switch to someone whose specifics I know -- myself.
I was running 10, 7 minute miles 6 days per week, for 30 some years, some of which occurred in my early sixties during which time I was completely and totally symptom-free. When I stopped running my symptoms showed up. Do you believe that's an unrelated coincidence?
Marc
Agreed.
true and although I have always been active, I had never attempted to be a runner or run at high intensity for an extended period of time. Even in my tennis life, there is intensity but for short bursts. I am surprised at what I could get my body to do in a relatively short amount of time but I haven't missed a week where I haven't run at least 4 times at high intensity. I am also beginning to experience the kind of joyful mode that running for an extended period of time creates, dopamine? I just experimented since this posting and what Karen does to see what I could do. john
Congratulations! I think that's what matters most about this post. We can examine the details of Karen's regimen and her symptoms or lack thereof of forever, but it's pretty much unanimous within the PD community that intense exercise is beneficial to us. If Karen's success inspires any of us (and it has!) to try a bit harder, that's all I care about.
MBA:
Without specifics, your question is almost irrelevant. Clicking off 7 to 8 miles daily ...at a 6 minute per mile pace at 63 (normally different between males and females on average) is a whole lot different than doing 5 miles at a 20 minute per mile pace (about 4 hours to run 10 miles). You should know that.
Roughly, 8.5 miles in 60 minutes = 7 minute per mile pace. So, 2 hours on a treadmill every day at 7 minutes per mile you are running almost 17 miles. 6 minute miles? Roughly 20+ miles. 10 minute miles over 2 hours? Just under a half marathon every day.
A whole lot of miles any way you cut it.
Just a thought and I am not scientific at all and look to my friends on here for your terrific insight. I add just a Pd story of someone I met who had tremor dominant Pd for 8 years. At around the 6 to 7 yr mark he decided to take up boxing from a former boxing coach who helped people with Pd ( expensive private lessons, I tried but couldn’t continue to afford). He did so well they hired him as a coach, he had tremor dominant Pd. You wouldn’t know he had Pd. He told me he started boxing but had a one hr exercise routine each day that included biking treadmill and weights. He said after 6 months his wife was the first to notice his tremor was gone. He was still taking 2 cd/ld a day but last I spoke to him he was going to ask the neurologist if he could drop a dose. He said his tremor returns only if he became upset or overly anxious. I asked him about diet and supplements. He said I eat what I want and I don’t get into all that stuff on the internet about supplements as he put it. I was going to share about B1 etc...he wasn’t interested. I also asked him if he worked out before Pd he said no, just back in college. He was 62 and did his one hr routine religiously every day. He told me someone asked him when he would stop he said when i don’t have Pd. Meaning never. In reading the posts about Karen as well as having met this individual it makes me think that maybe the bottom line is pushing your body as hard and as strenuous as YOU can do. Maybe Karen already being so fit needs to run at an elite level to get the same results that this man I met was able to get in one hr of vigorous training a day. He worked hard but I’m sure he’s not running 75 miles a week. The one thing they have in common is total dedication no excuses. 🤔
The nuclear medicine specialist who did the DATScan did not want to do it because I have been taking all kinds of PD meds and supplements for a decade. They've never validated DATScans on people like me. I WISH I had a baseline DATScan. But I don't. Believe what you want. It's fine by me. I don't know what to believe. All that I know is that I had classic symptoms with good levodopa response and wearing off with return of symptoms between doses, until dosage was raised. Then, over time and with daily endurance exercise, my symptoms changed. I make an inference that it is due to the exercise because that is the one exceptional thing about my lifestyle that is different than 99.9% of other PwP. But I would advise some skepticism without my having a baseline scan.
If I were making this up, I would say that I HAD a confirmatory baseline scan. But my story is true, and all I have is a scan done a decade after my symptoms started, when I am asymptomatic. Make of it what you want/like.
I just want to thank you sharing your experience! You are approaching things with a clear mind and a great deal of gumption. It is inspirational.
Hey guys , We are all in this together and exercise at any level is beneficial movement for us. I would never compare my 80+ marathons or my 30+ ultras to Karen’s level of intensity but I don’t believe my over 20 years of ultra running has DAMAGED me on the contrary I believe it’s whats kept me going . That being said in the past when I would do speed / intensity runs that’s when I would get injured. I too have a stretching , nutrition , hydrating ect routine for my runs but I again am not symptom free and do take meds to continue what I love to do. Everyone had their journey and their own story and not all of us are the same . What works for some does not work for all. ❤️ Take care. The Other Karen 😊
Thanks for your seasoned voice. DAMAGE is indeed too strong a word. I used to get injured running all the time. Now I run as medicine. Totally different goal. Totally different method.
Thank you for your response. I too run for different reasons now as well , one being medicine and peace of mind. It helps tremendously with stress and anxiety. I so appreciate your knowledge and experiences and shows there is hope out there. By no means do I expect everyone to go out and run a marathon but I just want to encourage all of us just to move . Whatever that may be for each one of us. Take care. Karen
There have been some rather loose numbers thrown around (particularly by sharoncrayn).
Here are the actual numbers given by Karen Raphael, with links to where she gave them.
"I think that, depending on the treadmill, I am doing anywhere between 75 and 90 miles/week of running."
"My sprints may be around 8 mph, but I'm typically running 6.5-7 mph these days."
healthunlocked.com/parkinso...
"I try to run for a minimum of 90 minutes but usually two hours daily, ..."
"For me, my peak zone may mean 175+ [bpm] for quite a while; it's when I really feel like I'm pushing it hard and sweating a lot. I try to stay in that zone of subjective intensity for sustained periods, broken up by somewhat more moderate periods."
It’s interesting that we’re so consumed with proper diet and exercise for the body, but do not hold the same standards for the brain. Meditation is ignored, while medications are adored.
Honestly, what meditation (3 hours a day) has done for my brain in a very short period of time has been amazing. I lead a normal life, do everything, going everywhere.
Dr. Joe Dispenza meditation is unlike anything you’ve ever experienced, based on science/Quantum Physics. There’s nobody in the world doing what he’s done and teaching.
Exercise is valuable but meditation is invaluable.
Oh, yes, I also meditate daily. 5-10 minutes. At least once a day. THAT I can do in my office with the door closed. Research also backs up neuroplastic effects (at least in the hippocampus) and grey matter volume increase for regular meditation. (Hmm...maybe it's not running at all....maybe just do the meditation,give up my running, and I would have a LOT more free time....just kidding.)
I think that exercise is a great way to get your life in order do it every day and you will feel better
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Interview of Daphne Bryan following the publication of her book: “Parkinson’s and the B1 therapy”.
I am delighted to announce our next zoom session that will be taking place at 7.30 pm London time...
PART 1 : Reversing Memory Deficits And Senior Moments In A 78 Year Old 
Parkinson gloves
