Dear Imad,

Thanks for your update. Your news is just so exciting to hear! I"m passing your experience on to Dr. Alberts.

Last Saturday there was a PD Wellness conference here in Seattle. My friend from Denver, John (who is also going to climb Kilimanjaro this summer) joined us for the conference. The lead speaker talked about the placebo affect, with compelling statistics to show that our minds can do amazing things if they believe in the efficacy of what interventions they are doing. For example, in tests, some people were given the real drug and others not; some people were given acupuncture and others a fake procedure, etc. But if the people believed they were getting the real thing, their bodies reacted as though they were, with effects lasting as long as two years! After his talk I asked if he knew about Pedaling for Parkinson's and Jay Alberts' work. He was very familiar with that. I asked if the results were due to the placebo effect and he stated "absolutely not The changes due to cycling are real." From my own experience, I think that the placebo effect adds to the positive benefits of cycling. When I get feedback like the piece you just wrote above, it's like getting a shot of dopamine. I can feel a tangible happy effect from knowing that what I'm doing is helping someone else.

The third speaker of the day talked about mentally controlling symptoms through guided imagery. (She is a psychologist.) Like you, my tremor is my most annoying symptom and is the only one that has gotten a little worse over time. I closed my eyes and followed her imagery and the tremor stopped. I kind of wonder if I fell asleep, but it seemed I was awake the whole time. As soon as I became fully conscious that it had stopped, it started again. I didn't know what to make of it, except that deep breathing and focusing fully on something else made it go away. That's how I get it to stop enough at night to go to sleep too.

Did you look at the cycling video I posted? The second one, about snowshoeing as training for Mt. Kilimanjaro is on You Tube with the search words of Parkinson's Disease, PFP, Mt. Kilimanjaro. Training is getting a little silly. But I can hardly believe I can do all that stuff at 65 with PD diagnosed in early 08. I'm in better shape now than I was 15 years ago.

Unbelievable
 

Nana:
I watched the video and was amazed by your great shape and look. Who could guess that you have PD? not 1 in a million, I say.
I would be very pleased if you pass my info to Dr. Albert. I have been having very rough time with neurologists in Calgary who did not show any interest or sympathy with my exercise, diet and psychological issues.
My very best wishes for your Klimanjaro venture.
Imad

Three years ago my doctor watched me walk 10 steps and told me I have PD. I shuffled, tripped, was off balance, hand clenched, arm straight at my side, neck could move no more than 90 degrees. After cycling, my doctor told me that if he didn't know I have PD, he wouldn't know. I'm certainly in much better shape. BTW, the other cyclist, John, is an early onset. He's had PD for nine years and is in much better shape now than when I met him two years ago.

Another person from Calgary contacted me and shared the same frustration with getting medical help there. I'm going to suggest she join this list and contact you if she wishes.

Thanks for your kind words.

Nan

You guys keep me going....
 

I wanted to say that if I didn't hear of all these experiences, I would be pretty despondent right now. I have never had one doctor recommend exercise...all because there is not official 'evidence' that it helps us heal and/or slow progression. Neurology is so mired in traditional thinking. We know our condition is degenerative and for the longest time it was thought that as adults we do not grow new neurons; that was proven false in the late 80's in two key pivotal studies. I know that we'll never grow as many neurons as we need to catch up and take over this disease, but we do generate new neurons and exercise, I have read, is one of the key ways this happens. How else can we explain these amazing results.

It's like our doctors do not want us to even try and help ourselves. I approached my neuro with info on different diets that might be beneficial to us and I receive nothing positive or very little in response; I know that
it will not alter my disease, but even just a cursory "it can't hurt" would be something. I am not asking him to manage a diet for me, but just a few words of encouragement or even some tips or something positive for a change. I left feeling so deflated and defeated.

After hearing again from Nan (let me know when you'll be in MI again, please) and re-reading Imark's results, I just figured "enough". I was concerned about getting the right kind of bike, obsessing about RPMs,, when the important thing for us all is that we get moving and keep moving.

Out came the dusty, encased in plastic Bollywood Booty DVD; this is indeed an unopened purchase made last year. I am most certain that I did not hit the sweet zone that correlates to 80-90 rpm, but I did have a lot of fun and was challenged enough by the choreography to boogy again the next evening. I do notice that hours later I don't stiffen as much and my symptoms are milder as meds wear off; this may be placebo effect, but for now just the difference in how I feel is enough to keep me hooked.

Thank you for the inspiration and the swift kick I needed to set me on the right course.

Laura

Hi Laura, First, I may be in Michigan in April. I'll let you know as my plans progress.

Your post gave me lots of food for thought. My husband and I talked it over at great length last night. He had a powerful insight which I would like to share with you. One of the issues that he notices most often is the change in my local anxiety since I've had Parkinson's. Where is I used to exhibit normal concerns about new issues, since having Parkinson's my level of anxiety is sometimes off the charts. At one point I even had a terrifying panic attack, something which has never happened to me before, and I hope never happens again.

Why the anxiety? I'm not a psychologist or psychiatrist, so these are just my personal thoughts. As a teacher, grades seven through the University, I noticed the same problem exhibited in all ages of students. The fear of failure. As long as they didn't try to do their best, they could always tell themselves that if they did try they knew they would be successful. But there was always a fear in the back of their minds that came out kind of like this: what if I try my best and I'm not successful? That fear and anxiety caused many students to operate far below their potential. And what defined success? Were they looking for outside approval from the teacher or from their classmates or were they looking for an internal sense of satisfaction at a job well done? This issue came up again last year during RAGBRAI. One of the participants was an early onset PD patient named Andy. Andy was diagnosed with PD at age 31. Unfortunately, he argued had asthma and Crohn's disease. And he was only able to ride a recumbent tricycle, not an upright bike or a tandem. He said his goal, his measure of success, as riding the entire 450 miles across Iowa. Before the ride he told himself that anything less than that would be failure. One day on a ride it was pouring rain and very cold. Writing about a foot above the pavement, and he was not only being soaked by the rain but he was picking up the splashes from all the other riders. He didn't have a jacket and at one point he realized he was getting hypothermic. He called for the SAG wagon, which meant he didn't complete the entire 450 miles across Iowa on his bike. We talked about it later and he realized that his measure of success was quite wrong. The fact that he had the courage to try was the most important measure of success, not biking every mile across Iowa.

There have to be thousands of people with Parkinson's who are afraid to try cycling because they are afraid it may not work for them. Getting over the anxiety is 90% of the battle. Although dancing, singing, swimming and other activities may help people with Parkinson's, the only activity that has been proven through research to make a difference is cycling. You don't have to have the best and latest bike. You need to have a cadence monitor on your bike to keep within 80-90 RPMs, and you need a heart rate monitor to make sure you stay within 60 to 85% of your maximum heart rate. Then you need to define success as taking small steps toward a larger goal. It's scary. But I know you can do it.

Well, I'm late in responding, but . . .
 

What an inspiring thread! I have simply got to get off this computer more and exercising more! Paula has been preaching to me for a year.

It really does make a differennce, and I have little excue, except for the pain that I experience regularly. But who knows; exercise may help with that, too. At least exercising might get the toxins moving OUT of my body rather than churning around in there for a week before moving on!
(I'm referring to elimination via the digestive system, perspiration, drinking more water, etc. )

I always wonder when I make a trip to a conference why I do so much better than anticipated. Well, here's the proof - I walk more and I'm not as sedentary. And of course there is more mental stimulation.

Thanks for all of this healthy discussion here. Now to just heed the word!
Peggy

the only cycling research that has been published is a very small study by jay roberts, 5 subjects in treatment group? when will the results from his 2nd study be published?

Background. Animal studies indicate forced exercise (FE) improves overall motor function in Parkinsonian rodents. Global improvements
in motor function following voluntary exercise (VE) are not widely reported in human Parkinson’s disease (PD) patients. Objective.
The aim of this study was to compare the effects of VE and FE on PD symptoms, motor function, and bimanual dexterity. Methods. Ten
patients with mild to moderate PD were randomly assigned to complete 8 weeks of FE or VE. With the assistance of a trainer, patients
in the FE group pedaled at a rate 30% greater than their preferred voluntary rate, whereas patients in the VE group pedaled at their preferred
rate. Aerobic intensity for both groups was identical, 60% to 80% of their individualized training heart rate. Results. Aerobic fitness
improved for both groups. Following FE, Unified Parkinson’s Disease Rating Scale (UPDRS) motor scores improved 35%, whereas
patients completing VE did not exhibit any improvement. The control and coordination of grasping forces during the performance of a
functional bimanual dexterity task improved significantly for patients in the FE group, whereas no changes in motor performance were
observed following VE. Improvements in clinical measures of rigidity and bradykinesia and biomechanical measures of bimanual dexterity
were maintained 4 weeks after FE cessation. Conclusions. Aerobic fitness can be improved in PD patients following both VE and FE
interventions. However, only FE results in significant improvements in motor function and bimanual dexterity. Biomechanical data indicate
that FE leads to a shift in motor control strategy, from feedback to a greater reliance on feedforward processes, which suggests FE
may be altering central motor control processes.
Key Words: Parkinson’s disease; Exercise; Manual dexterity; Motor control; Grasping forces; Movement disorder

Ten patients with idiopathic PD (8 men and 2 women; age
61.2 ± 6.0 years, Table 1) were randomly assigned to complete
an 8-week FE or VE exercise intervention. Following the
8-week intervention, patients were instructed to resume their
pre-enrollment activity levels; follow-up patient interviews
indicated compliance with this request. Patients in the FE
group exercised with a trainer on a stationary tandem bicycle
(Figure 1a), whereas the VE group exercised on a stationary
single bicycle (Schoberer Rad Meßtechnik [SRM]). The work
performed by the patient and the trainer on the tandem bicycle
was measured independently with 2 commercially available
power meters (SRM PowerMeter; Jülich, Germany).

I don't know when Jay Alberts' next article will be published, but I know that his research has been taking place at the Cleveland Clinic and in Las Vegas. He has assured me that the outcomes are the same as they were with the initial research. In addition, we are experiencing the same levels of success with the informal Pedaling for Parkinson's programs here in Seattle and with individuals across the United States. At this point a global organization is considering adopting Pedaling for Parkinsons as one of their core programs. Based on his work Dr. Alberts now has several million dollars in research funding and is collaborating with neuroscientists from other countries. I think we can safely say that the proof of concept has been well-established.

The difficulty still lies in getting over the fear of failure.

I wish you the very best.

i find it unusual any researcher would share the results of a study in process. i hope it gets the same results.

some ramblings on research
 

Normally, I appreciate your reality checks, Soccertese, but why the downer here? It's not like we have much hard science to go on in this disease in the first place. With so few people who are willing to participate in clinical trials, we're lucky we even have five humans to go on...it at least shows there is potential benefit beyond our furry little friends.

Why is what is going on in the trenches of PD, those of us who live it ignored and worse negated? Why does just reading anecdotal evidence and reading the words of someone who has not only transformed in a way herself, but continues to see FE work in scores of other PWP not count. Is the medical community saying that she is making it up because there is yet no clinical trial of 1000 PWP supporting it? And lets take a closer look at those blockbuster PD studies like ELLDOPA. Lots of expertise, loads of money,big, important study all for naught. The results were skewed by the fact that several participants did not even have idiopathic PD. Oops. They didn't even PET scan people to confirm that they belonged in trial in the first place? We don't have much of a standard or scientific control. Until we have biochemical measures in place, I don't see how we can cast a critical eye at Dr. Albert's trial design.

If there is anything I have learned from this disease is that if only five or maybe even thirty people experience the same thing as reported by research, than there are many more going through the same thing. When I became pregnant with my son, I had only a handful of case studies to go on that said pregnancy may permanently worsen the condition. Well, I did the math and figured 70% worsened but that was only 30 women, so I took a leap of faith. Turns out that small sample size is part of a much larger number...more recent research supports that it can make us worth. In my unscientific study I have met at least 10 YO women who have also experienced disease progression as a result of pregnancy. My point is as patients with so little to go on, we can't afford to ignore or negate the anecdotal evidence.

Further, clinical design and scientific control or measure can hardly stand alone as the paragon of all we know of PD when all we have to measure disease progression is a paper and pencil rating scale. Most everything about having PD is anecdotal, from diagnosis to monitoring disease progression. The UPDRS is a snapshot of how we are for an hour at the doctor's office every six months, and we must accept that as hard evidence of disease progression? Essentially I can control my rate of progression by opting not to report new symptoms to my doctor or in creating new ones that are not there unless I go through a drug washout; according to my doc I still show no signs of PD when on meds. It also fails to account for patients like Ron Hutton who has essentially perhaps altered his disease course through curcumin; I certainly haven't read of any similar experiences with Azilect. Who is recording the cases of people able to cut their med intake in half like Ron or altogether like Nan? A lot could be told about what is and isn't working by reaching out to the patient community.

Anecdotal evidence is actually a standard criterion in establishing a disease as auto-immune...it seems the medical world embraces it when it suits them; when they can't admit there is nothing else to go on. Well, I'd say with PD we are well beyond that point. Fact is that our clinical trials are not necessarily all that reliable from the get go, and I think that if they figured out a way to include us in solving this mystery, a way they deemed as statistically reliable, we would be that much closer to getting rid of this disease forever.

To Soccertese. The studies are completed but the paper has not yet been published. Perhaps I shouldn't have mentioned them. This is no longer anecdotal information.

Conductor 71, May I please correct one point in your commentary. Although I have cut my meds in half since cycling, I take 4 mg of ReQuip XL, 1 mg. of Azilect for PD and .5 mg. of Clonazepam for my associated REM sleep behavior disorder. I briefly (less than a week) upped my meds to 6 mg. of ReQuip XL in December due to a lot of stress, then decided I wouldn't let the bastards get me down and went back to 4 where I've stayed since.

I am also puzzled by negative commentary. The worst thing that can happen if you cycle (presuming your heart and bones are strong enough to try) is that you'll get more fit even if your symptoms continue. Better than the side effects of more meds I think.

Way to go, Nan Cyclist! Good for you! Since diagnosis 4 years ago, I have tried several times to get going with a biking program, including several weeks last year as a trial on the Theracycle, but have encountered problems. One is I have had increasing difficulty maintaining anything like the required 80 RPM at all, let alone for an hour. Also, the very good stationary bike we already had seems to cause or worsen serious chronic pain in left hip area (sciatica, periformis, S/I joint area). I'd like to try an upright stationary bike to see if it might be an improvement, but expense is an issue. I have a regular bike, but it's beyond my abilities right now on the streets in my hilly area. Any similar pain or other limitations, experiences, recommendations, or thoughts on this?

skeptical=negative? plus it is a no no to release results before they are published in a peer reviewed journal, much less share them in my opinion. if this was a drug study one could be in very big trouble.
what is being proposed isn't just simply riding a bike, it's making a major commitment to tandem cycling or using an expensive theracycle. this is not a trivial endeavor for pd'ers, especially advanced. so i disagree, i think there is a huge commitment to get to the exercise level you describe.

conductor,
most phase2 pd clinical trials fail after stellar phase1 results. that's why i'm skeptical. why?
1. placebo affect. and the phase1 study certainly wasn't a blinded study. one patient secretly taking more meds or altering their med regime
could have easily skewed the results, these were mild/moderate pd'ers.

read the original paper?

i've done research which required statistics to determine if the results of the treatment were sig. different from chance. there is so much variability day to day, hour to hour with pd i am skeptical of such a small study that has so many variables.

if you want to PM me i'll be glad to discuss this further but i believe i have every right to express my skepticism.

Peony, Remember I'm not a medical doctor, so I can only give my experiences and those stories I've heard from others for what they're worth. I've had the same pains you describe, only on the right side, plus cramping in the hand, foot, and calf. Ouch! I just pushed through the cramping pain and it went away. There were times I thought I would scream on the road, but I suppose that would be very distracting to others. So I would start singing "To Dream the Impossible Dream" to myself and that got me through it. (I substitute "Nan" for "Man" in the song. Mind tricks.) For the other pains you describe, my general practitioner had xrays and a bone density scan done to see that there was no structural problem. Now I'm seeing a great physical therapist who determined that my hip bones were not aligned. I've been doing mid-glute exercises twice a day for the last four weeks and I expect that at tomorrow's session, he'll tell me I'm good to go. This is especially important as I am climbing a lot and need to add weight to my backpack in preparation for climbing Kilimanjaro this summer.

Re the bike. Most stationary bikes are difficult to adjust just a wee bit. Even a 1/4" difference in the height of the seat or tilt, or handlebar placement will change the physics of how the body works. I ride on my road bike, putting it on a Cycleops magnetic bike trainer that I got from Craigslist. First I took my bike to a great bike shop and had the fitter adjust it exactly for me. I've gone several thousand miles on this bike. No tandem, no Theracycle, no new equipment.

Soccertese, of course you can express all the skepticism you want! But the commitment is not financial to the extent that you describe. It does take a lot of determination and the willingness to set incremental goals and work steadily toward them. It's not for everyone.

Agreeing with you in a way....
 

Right, I get your skepticism, but my point is that because of these research deficits,we need more in situ or anecdotal evidence to refute or support the results. This would not supplant controls, obviously, but I think parallel observational studies or surveys may give PD research more heft. I think Nan is living proof that it is not just placebo. If you happened to have read her earlier posts, she will be the first to say that if she slacks, symptoms are back. I'm not sure if that is still the case.


I am agreeing with you here as well. There is too much variability and uncertainty in this; most everything is clinical observation. I take most of what is published with a grain of salt. How can you have any scientific control if you have no real scientific measure?

I guess, I am meaning "skeptical" in general. Why is that negativity automatically transferred to Nan's experiences? How can we just overlook or ignore people in the real world and their actual experiences? You mention that someone could take extra meds and skew results. This is no different from lack of control in ELLDOPA trials. Both then are flawed.

I see research in PD as one giant house of cards anyway. Whether it is six people, 500 trial participants, or a neighbor's friend, they all carry equal weight in my book. When they can show me results of a trial centering on taking Azilect daily for 8 years vs. Curcumin and at least one person on Azilect can match Ron Hutton's med decrease, then I'll be convinced that maybe we should only be using evidence based medicine as our treatment model. As it stands now we are overlooking many potential avenues of treatment and people suffer needlessly because of it (off label meds).

I am saying given the limitations in trial design with PD (placebo and lack of scientific measures)... In light of this, should we not look to what people share with us as their experience in real life as maybe something that might be considered essential in a new research model or paradigm?

spin bike
 

I was at a conference in Sarasota where the person from the Cleveland Clinic that did the study gave his presentation. I recently bought a spin bike and ride it daily at 20 mph. This is as close as I can get to forced exercise since you must continuously pedal. I set the resistance to wear I am at 75% target heart rate at the peak of my workout. So far seems to help, either placebo or not I am off less. Go figure??>>

Jim, You're doing great! If you can ride for an hour 3 times per week, 10 min warmup, 40 min at 80-90 rpm, 10 min cooldown and keeping your heart rate within 60-85% for the 40 min part, you'll have all the pieces in place. Like you, I like going every day, or nearly every day.

Nan, thanks for those great tips. I'm going to look at Craigslist for the Cycleops. I wish I had your great physical therapist & great bike shop consultant to make adjustments; need to resolve that pesky hip problem! I do believe the recumbent stationary is aggravating the hip joint problem.

just to give an anecdote. i played a lot of soccer, ran a lot and developed severe knee pain. my GP took xrays, couldn't see anything wrong, told me to rest. went to a sports medicine doc at same organization. looked at my xrays and instantly identified bone spurs. gave me exercises to strengthen muscles which solved the problem.

ruptured a disk in my back. My MD referred me to neurosurgeon who scheduled surgery. saw an ortho who told me surgery wasn't necessary. took that advice and fine 20 years later.

rule #1 on this board imho should be "DO NO HARM". my point is if you can afford it, find the best doc you can before you potentially do more harm. why risk it?

Hi, Soccertese. Not sure how to interpret what you said in relation to what I said. What harm do you mean? I've had the joint problem for many years & have given various members of the medical community many opportunities to help me with it, with the end result being: no improvement, nada, zip. How do you know when you've found the best doctor? I've kind of given up on them & moved on. I see no harm in biking or other exercise as long as it doesn't aggravate or cause a problem. That's why I'm looking for a way to resolve the problem I seem to have with the recumbent bike. When using an upright bike, I don't seem to have the problem. Exercise seems to be the one thing that can help anyone, including those with PD, without the harmful side effects of meds or DBS, so why not?

i was speaking in generalities - offering common sense. do what you want. sorry i bothered to respond.
as far as finding the "right doctor", i don't live near you, that's your challenge. my point is i found "a right doctor" and they weren't on this message board.

i have nothing against exercise, just laypersons offering advice that could result in harm.

Nan Cyclist, I just want to say again how much I appreciate your very helpful story & tips, which I intend to act on, and the inspiration you provide to me and others. Your posts are a good example of exactly the type of thing I hope to find on this forum--people with PD sharing information, tips, hope, personal experiences that may be helpful. I do a lot of exercise--dance class, dance performance group for PD, aquatics class, yoga, dog walking, etc. But I really believe I need more strenuous & more frequent aerobics, and stationary biking seems to be ideal for that. I'll keep on trying to work out the best way for me to accomplish it, but meantime, godspeed!

Thanks Peony. Soccertese, I applaud your dedication to research over hearsay. I don't know if you had the opportunity to attend the HOPE conference in Seattle last November and to hear Dr. Alberts give the keynote speech. http://www.viddler.com/explore/nwpark/videos/13/
Happily the speech is archived at the above url. It's an hour and unfortunately the videographer didn't show the slides, but Jay explains them quite clearly. I hope this gives more credibility to what I've been writing about.

For those of you who live near Grand Haven, MI, I'll be giving a couple of talks there on April 18th. I'll post the specifics when they're in place.

i read his paper. i listened to his presentation based on your link. i'm not convinced and will withhold judgement until he publishes his 2nd paper for peer review. exercise is good for general health benefits, no doubt about that. but basically if it seems too good to be true, it often is.

Yesterday I climbed Mt. Si, 4 miles each way with an elevation gain of 4,000 ft. The day before I climbed to Lake 22, 2.7 miles each way with an elevation gain of 1,500 ft. The last mile of each hike was in the snow. There is no way I would have even thought about attempting such climbs without the Pedaling for Parkinson's program. I would rather be living each day to my greatest capacity than waiting for a paper to confirm my lived experience. Everyone chooses.

I'm sure this isn't the right place to post this, but I don't know how to start a new thread. We just learned that one of my brothers has ALS. That makes half of our family with either ALS or Parkinson's. My dad lost his ALS battle in 1972. I feel like I've been socked in the gut. What can the odds be that 3 out of 6 would be so afflicted?

Nan Cyclist,
That is a tough one to deal with. There is a lot more to be learned about these conditions, and the people researching them do not understand our haste for them to find ways to help. When a family is hard hit like yours the urgency is made much more real, especially with ALS.

I guess you probably know that there is an active ALS group here at Neurotalk.....

To start a new thread just look towards the top of the page that lists the PD forum threads, just below the three sub-forums, on the left there is a button for new thread, click it and you are there.....

Share as much love as you can, it is the thing that really does help.

Best Wishes
Lindy

Nan,
I am sorry to hear the news. I know it is very hard when a difficult illness hits one who is dear to us. Life is not fair but human spirit is strong and will fight on to the bitter end.
Imad

http://www.keepmemoryalive.org/About...ngFall2010.pdf

The Lou Ruvo memory center recently opened in Las Vegas. Dr Alberts gave one of the keynote speeches, which is the link above, starting on p 12.
Further encouragement to cycle if you're able.

On June 6 the Mill Creek Family YMCA in South Everett, WA, became the first licensed Pedaling for Parkinson’s program in the country. They will begin the first class on July 11. It will run M, W, F from 1-2 p.m. for eight weeks with the opportunity to follow up for life. This class is primarily for Level 1 & 2 patients. There is room for 16 pwp cyclists, although they will add an additional class if there is sufficient demand.

For more information contact Cindy Mascari, cmascari@ymca-snoco.org

To hear more about the program and recent developments in Pedaling for Parkinson’s tune into Robert Roger’s blogtalkradio for an interview with Nan Little this Wed., June 8, at 3 p.m. There will be a call in opportunity. http://www.blogtalkradio.com/parkins...nt-kilimanjaro

MJFF Hot Topics call on exercise...
 

Wednesday we are hosting a Hot Topics call focused on exercise. The dial-in call will feature Todd Sherer, PhD (MJFF CEO) and Lisa Shulman, MD (from the University of Maryland) at noon EST. If you are interested in participating, please RSVP to hottopics@michaeljfox.org

We will also be uploading the call as a podcast on our website in case you’d like to listen to it at a future date.

Debi

This is all important; but, and tho it isn't funny , it all boils down to delivery system. This is the one positive thing you can do. Add the wii and some music _ it has short term appeal for me but requires more self discipline than I have to spare . It's hard enough getting thru the day; i can't place too much investment in the compulsion to have exercised , self initiated, but recently learned, moderately - this is useful information and needs to have more attention. It comes in spurts and many can't get themselves there and it's not safe for them to do so.

here is the reality of it but i'm in a good time for that and it is the best medicine....irritatingly so.

I have been trying cycling at 80rpm recently - have managed the unimpressive total of 7 minutes so far and then I can't breathe and my legs go to jelly. Plus I find it spectacularly boring, but I am going to keep at it and see if I can at least increase my cardiovascular health.

Trixidee

Trixidee and Paula, I understand your frustration. I gave a class yesterday to the staff at Mill Creek and it was so hard to describe how mentally and physically difficult it often is to get on the bike, even when I know it is the best thing I can do for myself. Trixidee, your 7 minutes at 80 rpm is impressive. Are you wearing a heart rate monitor to know that you're keeping within 60-80% of your maximum heart rate? I keep lowering the resistance on the bike until I can go 80-90 rpm for the whole time. My heart rate gets in the right zone after about 5-7 minutes if I keep the resistance low. That seems to work for me. If I increase the resistance at the beginning, I get to the heart rate zone faster, but I've worn myself out a bit.

My 6 mo. old granddaughter is sleeping in the crib next to me. She and my grandson are my motivation.

trixie,
imho, you gotta walk before you run, with any aerobic exercise i've always worked gradually to build endurance.
hope you aren't taking any undo health risks.

Paula and Trixidee,
** I believe it is not impossible or late to start exercise 5-10 mins(say) repeated as many times as possible. when you start, it will be like a burden or duty but you will enjoy it in time.

** It is unfotunate that exercise is not a part of the formal PD treatment and all PD doctors I have seen never mentioned it and were not impressed by my consistant 2 hours daily exercise that I do as a religious ritual.

** I was lucky that I started exersing from day one with half hour routine daily which I was able to increase to my present level of 2 hours over about 5 years since diagnosis

** I exercise the first thing in the morning after taking one tea spoon of creatin, 30 gm of whey and 3 spoons of coconut oil, which I believe that they increase my stamina.

** I take 5 mins of cold shower after exercise

** I put music I like during exercise and I enjoy the exercise ritual so much that I consider it the best time of the day.

** I do my exercise in the morning before taking my medication

** The exercise includes taichi or Yoga followed by stationary cycling for 50 mins at 80-100 rpm

** Usually, I also play wii sport in the afternoon with my 8 yeard grand son.

** I believe that exercise has helped me to reduce mobility problem but not my tremor which has progressed over the years.
I hope this will help some. Good luck and hope you update us.
cheers

If you live near a YMCA, you can contact them and ask them to start a Pedaling for Parkinson's at the Y program. There is no cost to them and they get researched protocols for the exercise, measurements for both physical and cognitive responses on their participants, and become part of a community of people making a huge difference in the lives of people with Parkinson's. Since I'm going to Africa shortly to climb Mt. Kilimanjaro with a group of PD and MS patients, I've asked potential donors to donate to the Pedaling for Parkinson's at the Y effort on the pedalingforparkinsons.org webpage. Hopefully, we'll be able to help purchase bikes, provide scholarships and respond to other requests. (I can't believe I'm more fit with PD than I was before I had the disease.)

The Pedaling for Parkinson's at the Y program is expanding. The Cleveland area YMCA is planning on starting the program at 11 branches on August 1. The YMCA of Greater Seattle just signed a contract for the 10 branches in its Association, planning to start classes in early fall, first at the Downtown facility, then expanding to the others. The Ys are waiving joining fees and class fees for Parkinson's patients.

There are spaces in the Mill Creek Y (south Everett, WA) class that begins July 11. Go to the pedalingforparkinsons.org website and click at the Mill Creek Y link on the top to get to the brochure.

One week from today our group begins to climb Mt. Kilimanjaro, the highest peak in Africa. If you would like to follow along, here is the description from our wonderful leader, Lori Schneider.

"Our actual climb begins July 13. We will be posting daily updates and photos on Facebook, twitter (to be set up soon), ETAdventure.com, and additional updates from our company AlpineAscents.com Here is today's posting from:
http://www.facebook.com/pages/Lori-S...4419341?ref=nf For the complete Alpine Ascents itinerary summary visit: http://www.alpineascents.com/kilimanjaro-dtd.asp

We have 10 people living with MS, 4 people living with Parkinson's Disease (PD) and 14 amazing companion climbers living to give us emotional support and encouragement every step of the way. Go Team Kili! Hiking 39 miles (63 km) in 7 days, with 16,077 ft. (4,891m) elevation gain to the 19,344ft (5896m) summit on Kilimanjaro!
Take a Leap Of Faith with us! Follow our adventure on fb, twitter, ETAdventure.com, and AlpineAscents.com Believe........."

Of the four of us with PD, three are men with early onset. I am the oldest woman in the group by 10 years plus. I have a wonderful banner of encouragement that I'll think about and look at every day as well as my husband and team mates to help me keep going. The top of the mountain is nearly four miles higher than where I'm sitting as I write this. Three breaths and one step at a time.