[girija]

http://www.nytimes.com/2010/04/01/he...e&ref=homepage

[imark3000]

Originally Posted by girija

http://www.nytimes.com/2010/04/01/he...e&ref=homepage

thank you Girija for sharing.

Imad

[lindylanka]

The guy who runs this site told me personally about instances of this in his support group, he is a patient too, and looks incredible....

http://pedalforparkinsons.co.uk/default.aspx

[Debi Brooks]

On April 1, 2010, the New England Journal of Medicine published a case study about a Parkinson’s patient with advanced disease who surprised doctors by his ability to cycle. The study author, Bastiaan Bloem, PhD at the Radboud University Nijmegen Medical Centre in the Netherlands is a recipient of an MJFF award to support PARKFIT, a study that aims to identify and overcome the behavioral barriers to physical activity in PD patients as well as to investigate the effects of exercise on disease progression.

The Michael J. Fox Foundation spoke with Dr. Bloem about his work, the case study and next steps for this area of research. Read our in-depth interview with Dr. Bloem, now posted on the Foundation’s Web site, to gain a clearer understanding of the news and what it may mean for people with PD. http://www.michaeljfox.org/research_...icle.cfm?ID=19

Debi

[lindylanka]

Hi Debi,
Always really nice to see you posting. This news just dropped into my email box, so had read it before coming to NT. While Bastiaan Bloem's conversation is of great interest, and obviously is doing something very important in that the professional world may actually sit up and take notice, he also mentions that he has loads of patient video's that he has collected that document the creative ways that patient's are actually looking at the problems of movement.

Doesn't this just underline the need for patient knowledge to be studied - and for patient thinking to be harnessed and brought to the table.

MJFF is helping to make this important information available to a wider audience, it would be so good if it also was able to go that step further and truly bring patients and the people who work in their name together. At the present I do not think there is a problem with the patient voice, but there is still a problem with it being heard.

The things that Bastiaan Bloem is talking about have been discussed here. In the UK there is a group who cycle together, it is inspirational to hear one of their people talking on this, in ordinary conversation, no axe to grind, about how they have advanced patients cycling miles, and the huge benefits to general health that brings. They are doing it for themselves, and it is working for them.

This patient knowledge could be worked into PD treatment programmes from the outset, if neuro's and other health professionals would really start to see that there is something to what patients are saying and validate it.

For instance, these amazing videos that Bastiaan Bloem discusses are a result of patient perception of their own condition, any patient who takes the trouble to record something like this understands that their experience is clinically significant - they should be studied, until they are they remain anecdotal and inadmissible scientifically.

The search for a cure is hugely important, but patient quality of life is of no less important.

It cannot all be about the search for the grail, and not about the journey itself. For every thing spent on PD research there is an parallel and ongoing human price being paid by patients, daily, and it is often clear that our doctors simply do not know how to help us. But among us there may be some of the keys that will help unlock the information needed to get to where is needed.... BB's work just underscores the need for patients to be seen as essential to the process.

Best Wishes
Lindy

[kk13]

For what it's worth, I posted on NeuroTalk approx. 3-5 yrs ago of my experience. I was diagnosed in 1990 and am now 53 yrs old. Over the yrs, I have shown more than one neurologist/MDS that when I am in the "off" state, very often I can SPRINT for 10 to 30 seconds! Each Dr. was surprised, perplexed, but inevitably dismissed this as an "anomaly!"

I'm glad that this ability which some of us have to ride a bike, or run when in the "OFF" state is finally being recognized as significant. It now appears to have hit the radar of the medical community as well as the media. Why it took so long for this ability to be brought to the surface, taken seriously and reported as "NEWS" has ME surprised and perplexed.

[jeanb]

Lindy & KK13,

Agree that we are ahead of the researchers on this topic. What if instead of anecdotal data (which is all i have about my exercising) we each kept a daily journal of:

meds
symptoms
exercise --
+type
+duration
+etc

Maybe this kind of info would be helpful to scientists? I think NanCyclist is already documenting about her exercise. (NanC you are an inspiration!!) I will try and start documenting tomorrow. Anyone else doing this or think it is important?

Jean

[paula_w]

This post isn't directed at your comment Jean; it's been on my mind for quite some time and obviously others are thinking it too.

I don't understand the hoopla over this bicyclist. It's a given that exercise helps. Everyone in the world is supposed to exercise vigorously. Some do, some don't. Why must we spend money on researching this? The outcome will be that it helps to exercise. Are they going to give everyone a bike after the study? How is this research going to benefit pd patients?

Wouldn't the money be better spent developing exercise classes and equipment?

Adding that i am aware of the curiosity about why he can ride the bike but can't walk. There are many examples of things pwp can do that defy their other symptoms. Why are we waiting for curiosity to be satisfied if it isn't going to lead to any benefit?

[kk13]

I think the excitement is not that exercise is probably helpful to everyone, PDers, people with othe maladies, and healthy people alike.
The interest in this case is that it may give the researchers a new way of looking at the disease, its treatment and eventual (dare I say the "C" word) CURE!

Up until now, the belief was that in all cases of PD, for one reason or another the dopamine producing cells die off. As the dopamine available diminishes over time, the symptoms begin to develop. The less dopamine, the more severe the symptoms.

The fact that some Pd'ers in their "OFF" state, (with a supposed lack of sufficient dopamine to take even one step) can get on a bike and pedal away symptom free flies in the face of the long-held theory mentioned above. If there wasn't enough dopamine to make it possible for the patient to walk, how was it then possible for him to pedal, balance and operate a bicycle? Or in my case sprint down the street?

So it's not that "exercise is good for PD'ers" that is raising eye-brows. It's the conditions under which exercise is surprisingly possible that has researchers scratching their heads. Maybe there is more to the story than just the level of dopamine. This story is just proof that we have a long way to go toward understanding the cause(s) and possible treatments for PD.

I hope this helps you.
Keith

[jeanb]

I don’t know the answers to your questions, Paula, other than to say that scientists don’t seem to believe anything until/unless it has been studied and documented using strict scientific methods. Yes exercise is good for everyone, but what exactly happens in the brain when PWP exercise – or when they are able to exercise when off? As Keíth notes, scientists don’t know and if they figure it out it will be another piece of the PD puzzle.

I still think that keeping a journal of exercise could be a good thing in the long run – kind of like how Patients Like Me collects info. This data couldn’t be accepted in lieu of studies, but if complete enough it might augment the info learned in a trial.

Along this line, I have contacted the researcher who is behind the study on “calcium channel blockers.” I’ve been taking isradipine since we first heard about his research at PAN, but in addition to this, I have had SPECT brain scans (in a separate clinical trial) for years 2003-05-07-09. When the current SPECT scan trial is over I’ll get copies of my scans (now I only have 2003-05). I can and will ask that the scans be shared with this researcher.

But what if isradipine (or exercise) works but it takes years instead of months to show results? What if scientists are able to see improvements in my brain scans over the years? I’ll try to document as much as I can to add to the data scientists collect on me yearly in POSTCEP & SPECT & FOUND. Who knows? It can't hurt and may help...