Friday, January 12, 2018

An Act Relative to Parkinson's Disease, Disability and Death in Firefighters

This post is for an issues which needs to be shared and to be acted upon post-haste. We know that the triggers for Parkinson's disease have been ignored so that people in positions of trigger exposure have been left in the cold when it involves treatment.

Some state governments have already recognized that the exposure to certain chemicals, heavy metals can be a trigger; some need encouragement to do the right thing for the people daily who put their lives on the line. Even the US Department of Veterans Affairs finally recognized that agent orange could be a causal factor in developing Parkinson's Disease.

The exposure risk of firefighters can occur over many years. Their service and their risk should not be ignored any longer.

Please click on this link, read the petition and do what you can do by lending your voice.

Share this petition with friends and family. If you live in Massachusetts, make the calls to the  Speaker of the House Representative Robert A. DeLeo (617-722-2500)
or send an email to
BTW the fax number is 617-722-2008 - so you have a third option.

Thank you for supporting the PD community.

Tuesday, August 1, 2017

The Blue Water Navy Vietnam Veterans Association Has a Serious Request
The Association Needs Veteran and/or Family Assistance

The Blue Water Navy Vietnam Veterans Association posted a link several weeks ago.  Below is is their request:

We are asking if you would donate $10.00 a year in your income tax to provide medical and financial help to the Vietnam Blue Water Veterans whom the VA refuses to recognize as being exposed to "Agent Orange". 
The Agent Orange Act of 1991 was implemented to provide much-needed care to veterans who were exposed to the harmful chemical cocktail Agent Orange. Many of them thought the fight to get the medical attention we deserved was over, but that wasn’t the case. In 2002, the VA amended its initial plan and excluded thousands of “Blue Water” Navy vets -- vets who served right off the coast -- from receiving their rightful benefits. Because they hadn’t served on land, the VA tried to say they were unlikely to suffer the effects of Agent Orange poisoning.

Even though we didn’t serve on Vietnamese soil, we were still exposed to Agent Orange. In fact, a 2011 study by the National Institute of Medicine found that Blue Water veterans could have been exposed in multiple ways, including via the ships’ water distillation system and through the air. The National Institute of Medicine also stated, “Given the available evidence, the committee recommends that members of the Blue Water Navy should not be excluded from the set of Vietnam-era veterans with presumed herbicide exposure.”

Please note that because of exposure to Agent Orange whether directly or indirectly, a host of conditions can and have developed in anyone exposed including cancers and neurodegenerative disorders such as Parkinson's disease.

Here is a link to the survey.  It will ask at the bottom if you agree to make this donation. If you will do so, click OK which will take you to the next page for additional questions.

I should have posted this earlier. For that, I apologize.

Tuesday, April 3, 2012

PD News: Neupro and Parkinson's Disease Awareness Items

PD Items of Interest Worth Repeating

Don't look now - and I mean that literally - but it is official, the FDA (US Food and Drug Administration) has approved the Neupro Rotigotine Transdermal Patch (again)  It is estimated that the Neupro patch will be back in pharmacies by July of 2012 - then you can look.

For those who would like to relish the moment, you can read the press release from Neupro headquarters in Brussels, Belgium as it was published earlier today,  4/03/2012.

For those who have been curious about the pharmaceutical grade micronized creatine monohydrate and the NETPD project to evaluate neuroprotective ability, I have little to report as I have not heard from the NETPD project coordinators in response to two simple questions.  For those interested in the Steve's motor improvement on 10mg daily, partial arm swing returned to his left arm - the right one has been fine all along. 

The CREST-E Huntington's disease study professionals generously included the information that the test subjects would receive 40mg daily. So after we increased Steve's daily amount to 20mg I noticed him walking down the hall with both arms swinging, shoulder's fully engaged.  An email acquaintance who has neurdegeneration but not PD reported an improvement in his speech after taking micronized creatine monohydrate. That's really exciting.

And yes, we will be reducing the daily creatine dosage and even taking a couple of off-days every month for renal and liver protection. And yes, we are increasing his fluid intake with water, juice and electrolyte drinks.

Have you visited Mary Spremuli's website for PD and  stroke Speech Therapy, breathing aids and DVD classes. Don't forget to SHOP while there. I can't think of a better present for someone with swallowing, breathing and speech issues and one of her classes on DVD.  They are especially great for folks who don't get out.

Things we are trying: Coconut Oil, for the medium chain triglyceride (MCT) benefits.  This time we're shooting for moving from 2.5 tablespoons (or 7 tsps) to 3.5 tbsp a day but it isn't easy. We're supplementing with capsules but that is really expensive.  You can also buy MCT oil to combine with coconut oil. Don't eliminate the Omega 3 fish oil, coconut oil doesn't contain those essential fatty acids. 

I didn't know that another use of Amantadine is to reduce the side effects of dopamine agonists such as Mirapex and Requip. I wish we'd known this when Steve and his Neuro removed the Amatadine from his early regimen because that was when the hallucinations and impulse control problems began. It is also used later to help relieve dyskinesia, a wearing-off side effect when there is excessive cell death.

Another thing I'd like to mention in passing is that when taking levodopa as Mucuna Pruriens, it is possible to overdose because there is little equivalency information. I can tell you that we have ordered EGCg and green tea capsules for Steve to take with the Mucuna Pruriens rather that the Curcuminoids (MAO-A and B inhibitors.  Just a test with nothing to report yet.

I got a real eye opened at the recent Parkinson's Disease Foundation Expert Briefing:  A Closer Look at Anxiety and Depression in Parkinson's Disease by Laura Marsh, MD of the Michael E DeBakey VA Medical Center and Baylor College of Medicine, Houston, TX.  It is now archived at PDF for your listening and slide viewing.

We'd had to stop the medical massage back in 2010 when Steve became dehydrated because of the BPH and the PD incontinence issues.  It was a mistake not to pick it up again once he became healthier.  So we're trying to find a more convenient location despite the excellence of his previous therapist.  Massage is also behavioral therapy which might help get him back on track or at least pointed at the tracks.

The National Parkinson Foundation (NPF) launched the first-ever nationwide initiative called Aware in Care which features a free kit.  The kit includes the tools to make hospital stays for patients with PD safer. According to NPF, "emerging data shows that poor hosiptal care for people with PD is on the rise - very often resulting in serious complications that are completely preventable." 

When you go to ORDER you will be pleasantly surprised some of the forms simply by clicking More Information under a manual and can then download it in pdf format.  They are also available in Spanish.  Although there is no charge for the kit, you are welcome to make a donation.

 Also from the National Parkinson Foundation is their announcement of a Yoga Retreat for people with Parkinson's and Caregivers.  You can read more about the 4-day Spring or Fall programs at the Kripalu Center in Stockbridge, Maryland in the eBrochure.

We received an email from Mike Justak, a YOPDer who is undertaking the task of putting together a video presentation called Faces of Parkinson's Video Wall. as a Parkinson's Awarness project.  If I can ever figure out how to upload videos - videos used to be Steve's territory - he and his companion, Blakey the black cat, will be there too.