Attention for Young Onset Parkinson's Disease

There isn't nearly enough discussion of early or young onset PD

Young Onset Parkinson Conference

National Parkinsons Foundation-NPF and the American Parkinson Disease Association, Inc are co-sponsoring the 2nd
Joint Young Onset Parkinson Disease Conference in Sacremento, California. We are all fortunate to be able to join part of the conference from the comfort of our homes on Saturday, March 13, 2010 - 9:00am to 1:15pm Pacific Time and noon to 4:15pm Eastern Standard Time.

All you need to do is to register at the APDA website and tune in at your equivalent time zone start time. Or you can select the sessions you wish to see and join then. So click on the link to go to the American Parkinson Disease Association (APDA) to register for the webcast
Below is the Saturday, March 13th Webcast Agenda
The webcast agenda begins at 9:00 am pacific standard time for us we:ll join at Noon EST

9:00-10:15 am
The Electric Brain: Tailoring DBS Therapy for Parkinson’s Disease Patients
Michael S. Okun, MD
10:45 - 12:00
Complementary Therapies: Expanding your Symptom Management Options
Melanie M Brandabur, MD, MDS
1:30 - 2:45 pm
Update on Gene Therapies for Parkinson’s Disease
Michael J. Aminoff, MD, DSc, FRCP
3:00 pm - 4:15 pm
Parkinson's Disease Treatment: Is Exercise Really Medicine?
Jay Alberts, PhD
We've watched several short videos by Dr Alberts and we're really excited about the chance to hear a longer discussion. It is possible that in addition to the benefits of exercise and specifically of Forced Exercise which has been shown to reduce symptom severity and reduce reliance on medication for up to 4 weeks after cessation, there may be a benefit for neurogenic orthostatic hypotension. We're only speculating on the last but we're hoping to hear that on Saturday.
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From Parkinson's Action Network (PAN)

NETPR - Neurotoxin Exposure Treatment Parkinson's Research program received $2.5 million for fiscal year 2010 in the Department of Defense Apropriation bill. This funding is an add- on each year which means that every year an effort must be extended to have it included.
The 2/17/10 16 Annual Research and Public Policy Forum has been archived but is difficult to locate at the PAN website. It is worth watching in segments, however. And as soon as we figure out how to open it, we'll let you know. If you find it first, please let us know.
Friday, March 26th 2010 is the deadline to ask your Senator to support NETPR.

Last week after the PAN webcast we wrote about the need for everyone to do their part to develop a Registry database for PD and MS that can drawn from current sources. Everyone benefits.. From the Parkinson's Action Network comes the update on the support for the National MS and Parkinson's Disease Registry.

The Importance of Advocacy
If you need a better understanding of what it is the PAN really does and why it is so important, watch the PAN Advocacy video
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Because there are few groups for a sister disease, MSA, and less research, we thought that we should mention this news From Facebook:
Although unofficial, Miracles for MSA (Multiple System Atrophy) has asked that we observe March as MSA month. Since some people have probably been misdiagnosed with Parkinson's disease with a rapid progression when in fact they may very well have MSA, it is only fitting that we should respect and honor that wish.
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I'm sorry to say that there is still no news on the Neupro Rotigotine Transdermal Patch horizon. We'll post as soon as there is some positive news about its return to the US. There are Canadian sites where it can be ordered. We've done a bit of shopping online and the prices are high. We're working on that article and will try to get it posted in a few days.
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For those who are experiencing Neurogenic Orthostatic Hypostension as a symptom of PD or medications or MSA as a result of deficient release of norepinephrine, Droxidopa from Chelsea Therapeutics while available in Japan is still in Phase III clinical trials. We have learned that for MSA patients it can be made available on an emergency hardship basis through your physician.
We'll be writing more as it is closer to being approved by the FDA.

We're enjoying the pseudo March Spring before the next onslaught of midwest snow.

The dogs waited patiently for hours below a tree for the squirrels to come down to play. No fools, the squirrels did not descend to that level.

Parkinson's Disease News Updates in Brief

Point and Click for PD updates  

From Parkinson's Action Network:

VA Secretary Supports Veterans with Parkinson's Disease Exposed to Agent Orange
Veterans Administration Establishes Presumption of Service Connection for Vietnam Veterans with PDM

Eric Shinseki, Secretary of Veterans Affairs, established that Parkinson’s disease will receive a presumption of service connection for disabled Vietnam veterans living with Parkinson’s disease.  Based on a July 2009 report by the National Academy of Science’s Institute of Medicine (IOM), this decision simplifies and accelerates the benefits application process for Vietnam veterans with Parkinson’s disease who were exposed to Agent Orange.  Now, Vietnam veterans with Parkinson’s disease applying for disability benefits do not have to prove an association between their illness and military service.

“The entire Parkinson’s disease community supports this decision by Secretary Shinseki,” said Amy Comstock Rick, PAN Chief Executive Officer.  “This will now allow our Vietnam veterans to receive the support and care they so rightly deserve rather than becoming experts on Agent Orange exposure simply to apply for benefits.”

...."available evidence supports a possible link between exposure to Agent Orange and Parkinson’s disease.  Along with Parkinson’s disease, the Secretary also established a service connection for B cell leukemias (such as hairy cell leukemia) and ischemic heart disease.  There are 12 other presumed illnesses recognized by the VA"

....."The U.S. Military Veterans with Parkinson’s (USMVP), a group of over 200 Vietnam veterans living with Parkinson’s disease, has championed this issue for years and has strongly advocated for VA benefits.  It was through their hard work and determination that Vietnam veterans exposed to Agent Orange will now receive the benefits due to them for their service."

To read more

Nutritional Supplements

Green Tea

Drinking five cups of green tea per day may reduce the incidence of psychological distress by 20 per cent, says a new study from Japan.

Green tea extracts may slow smokers’ lung damage

Omega 3

Omega-3 may prevent age-related sight loss

UKs FSA opposes omega-3 claims that would ‘mislead consumers’

Omega 6

Another viewpoint on Omega 6

CoQ10

Supplements of coenzyme Q10 (CoQ10) may protect or retard the development of fatty liver related to obesity, suggest findings from an animal study

CoQ10 by any other name:

Andelir®, CoenzymeQ, Co-enzyme Q10, Coenzyme Q (50), CoQ, CoQ10, CoQ(50), Co-Q10, CoQ-10,

2,3 dimethoxy-5 methyl-6-decaprenyl benzoquinone, Heartcin®, idebenone (synthetic analogue),

Kaneka Q10™, mitoquinone, Neuquinone®, Qunol, Q-Sorb, Q10, Q-Gel®, Solu™ Q10, Taidecanone®,

ubidecarenone, ubiquinol, ubiquinone, ubiquinone-10, ubiquinone-Q10, Udekinon®, vitamin q10, vitamin Q10

Clinical Trial: Effects of Coenzyme Q10 (CoQ) in Parkinson Disease

CoQ10 for a variety of conditions

Other News

Cogane

Cogane headed for Phase II trials
June 2010:  Phytopharm announced that it has received FDA protocol approval to procede with Cogane Phase II clinical trials. Enrollment will begin in late 2010.

You can read the Phytopharm press release here
Check back for the links to the enrollment links.

Forced Exercise

Forced Exercise Video link to Dr Jay Alberts

Reck MotoMed
ReckMotoMedWebsite

See PD Trials for contact information about the Dr Albert's Forced Exercise trial, The Therapeutic Effect of Exercise on Parkinson's disease, Study ID: 09-439

In the Gym with Parkinson's Disease

My PD Exercise Monday through Saturday

I went to my physical therapy center yesterday to workout on the nautilus machines as I do 5 or 6 times a week. As you know, stiffness-rigidity, balance, breathing, depression, gait issues can make exercise much more difficult for the PWP. How one exercises may depend upon physical symptoms, the current physical condition of the patient, finances, accessibility to therapy centers and so on.

Many patients, especially younger patients already had an exercise routine and try to continue with that. They play sports and they work out in a variety of ways. Jogging if possible, lifting weights, swimming. At a therapy center each patient is observed and a specific routine is designed for them. The program I use was designed specifically for me by a therapist.

Now I am in a program for people who have completed their therapy programs with the physical therapist and want to continue using the equipment and facilities of the therapy center. Equipment includes three bikes styles: recumbent, semi-elliptical and exercise bikes. Nautilus machines include ones for exercising abdominal, obliques, leg extension, leg lift, hip abductor, triceps, triceps extension, lateral raise, vertical chest and leg press.

Other equipment includes treadmills for which I do not have a go-ahead yet. And of course the 90 ft pool, a whirlpool and therapy pools with wheelchair-type access available 6 days a week. I have one more session available with the therapist to assess my progress and revise my particular program...all this for $68 USD a month.

I have been attending this therapy center for about a year now and my muscle loss has stopped as my muscles are slowly gaining definition. Although my PD affected side is much weaker, I feel good about my progress. I have noticed that I can exercise longer against heavier resistance when I'm using the machines, instead of walking or using free weights.

The exercise in the swimming pool is easiest for me, although I have a tendency to think I'm doing almost nothing much in the pool...until I wake up the next morning...sore. It's hard to tell you are actually exercising because of water buoyancy effect.

Using the equipment I warm up on a recumbent bike for 10 minutes
Then leg curls and leg extensions on nautilus = 15 reps
Abdominal machine = 15 reps
Triceps press separately on each arm = 15 reps each
Vertical chest - pushing and pulling 50lbs on my right side and then 30 lbs on my left (PD) side.
Next I exercise on a padded table to stretch my upper torso: Yoga neck exercises and then foot exercises.
Finally onto the semi-recumbent elliptical trainer bike for 15 minutes of cool-down.

I'm encouraged-urged-prodded-nudged by my wife. Knowing I won't still be walking if I don't do this is also a major motivator. Which is why I figured out how to use the semi-recumbent elliptical bike.

When I began using the semi-elliptical recumbent bike I couldn't use my left hand/arm. With the assistance of a physical therapist we figured out that because my left hand, arm, leg were so weak that my left side couldn't keep up and that threw off the rhythm and balance required to operate the bike.

Then I read about the Forced Exercise at the Cleveland Clinic and it gave me the idea that to continue riding as hard as I could with the parts of my body that functioned well and take the left side along for the ride - my own form of tandem riding. And it worked. At first I was able to ride at 40 rpm, then 50 and then on to 60 rpm where I plateaued for a few weeks. I hit 70 rpm a few days ago - I can't sustain it yet but I'm making progress.

The great thing about working out at a therapy or fitness center is there are people around. At home the cats often keep me company during exercise but I'm more motivated to stick to my exercise schedule knowing I'll be with acquaintances.

Sadly, people I've grown to know and like there disappear from time to time. Under HIPPA rules the staff is not allowed to say what happened to them. In many cases I know what their health problem was because I could see its symptoms or the patient told me. But I do not know why I no longer see them exercising there.

I was disappointed to learn that the center will not be getting a bicycle for Forced Exercise within the next few months. They chose another piece of equipment instead. I had high hopes for seeing a dramatic change with that bike.

It also disappoints me a lot that there aren't more people with chronic motion disorders exercising, it may be the only treatment that really works.

On Sundays I exercise at home with the cats.

Forced Exercise to Relieve Parkinson's Disease Symptoms

I'm Pedaling as Fast as I Can

In 2003 Cleveland Clinic biomedical engineer Jay Alberts, PhD was on a 480 mile tandem bike trip across the state of Iowa with his friend Kathy who was a PWP (person with Parkinson's) Normally she would pedal at 50-60 rpm, but during this trip with Dr. Alberts she had to pedal at 80-90 RPM. Although the pedaling muscle was provided by Dr Alberts, Kathy's legs moved with the pedals at the speed which he set. When they had gone half the distance they noticed that Kathy's hand tremors had stopped.

Intrigued by Kathy's improvement in motor skills Dr Alberts experimented with another Parkinsons patient in 2006. This patient's symptoms were controlled by an electronic device that had been inserted in his brain by DBS surgery. He rode on the tandem bike with Dr. Alberts for 50 miles with the device turned off. He too exhibited no symptoms during the trip.

This discovery led Dr. Alberts to research Assisted Tandem Bicycle riding based upon his biking and his previous experiences with animal studies. It's called Forced Exercise. "The idea behind it is if we force them to pedal at a higher rate, this allows them to have biochemical changes that are necessary for improvements in motor function," explains Dr. Jay Alberts. "There's a possibility that there's an increase in dopamine or there's an increase in these neuro growth factors."

In a subsequent study with the a voluntary exercise control on a stationary bike or the forced exercise on a tandem bike with a trainer, an improvement of about 30% was measured in the forced exercise group. The improvements declined to 20% about two weeks after the study ended. This suggests the need for regular ongoing forced exercise as a significant part of exercise therapy.

While patients on medication and with deep brain stimulation show a significant improvement with these aids, if the meds are stopped or the DBS is turned off, the patient becomes symptomatic very rapidly. With therapeutic forced exercise, the improvements taper gradually. Dr Alberts feels that the therapies might work well together. By pushing the cyclist past his/her comfort zone by exercising the lower half of the body, the upper half improves. Whether this is a needed stimulus to the central nervous system is still unknown but the goal is to be as symptom free as possible and without the need for medication.

So if the study shows this to be a viable treatment a patient could ride a tandem bike with a friend or family member or use an electric motor driven stationary bike. Because most Parkinson's people cannot pedal at 80-90 rpm, the additional boost to get the leg stimulation comes from either the tandem companion rider or the motor of the stationary bicycle.

I'm hoping that I can convince the Therapy Center to buy a motor driven bike.

references and resources:
Theracycle
Kent State University Magazine summer 2009
ReckMotoMed Website
WNDU.com May 10, 2009
Pedaling to Beat Parkinsons
How You Can Help One Man's Challenge
http://www.lerner.ccf.org/news/documents/LRIMagazineFINAL.pdf
August 4, 2009 Thought you'd like an update
Forced Exercise Appears to Produce Benefits Similar to Levadopa
2011 Addendum:
See PD Trials for contact information about the Dr Albert's Forced Exercise trial, The Therapeutic Effect of Exercise on Parkinson's disease, Study ID: 09-439
2012 Addendum

Forced Exercise and Parkinson's Disease a significant article by Jay Alberts, Susan Linder, Amanda Penko, Mark Lowe and Michael Phillips