The Time Has Come for A National Registry for Parkinson's Disease

Our Armchair Attendance at the 2010 Parkinson's Action Network (PAN) Forum 

A few days ago we signed in to "attend" the 16th annual PAN Research and Public Policy Forum in Sunnyvale, CA without having to venture into the midwest cold.  We stayed from beginning to end, no mean feat when one of us has PD.  We really like webcasts because they provide us with the ability to interact while not having to say "excuse me/pardon me" when it's time for a pit stop. 

Although we have written about some of the covered topics in recent months, we'd like to mention one very important issue: data analysis of neurodegenerative conditions because it is an area where we all can have a voice.  The Parkinson's Action Network is our advocacy voice but without our support in return, that voice will not be nearly as loud.

• Important legislation is in committee and in order for the best interests of people with Parkinson's to be represented, it is important that your Congressmen and women and your Senators to be encouraged to co-sponsor HB-1362, the National MS and Parkinson's Disease Registries Act. The Senate equivalent bill is S-1273.
• Without the statistics generated by such a registry, which will draw from a number of resources, target areas cannot be identified, the need for certain research dollars are hard to justify, better data for research and treatment can be delayed.  
• Currently we do not have a accurate information regarding the incidence and prevalence of PD and other neirodegenerative diseases.  These statistics are necessary when planning programs and services, advocating, and focusing research for risk factors, genetics, environmental exposure, changes in incidence/prevalence/distribution.  Earlier studies did not have the higher proportion of older Americans in the mix and most certainly did not have the incidence figures for Young or Early Onset Parkinson's (YOPD). 
• The National Registry will draw securely from a broad source of available information in order to compile the requisite information.  While there are two states which do have the records and provide good models, what is needed is a national picture.
• To lend your support for HR-1362 you can click here to link to the PAN prepared letter site.
• You will then prepare your email message 
• Simply type in your zip code, the proper representatives' email address(es) will appear - depending on the district - you may have to add your home address.
• Do not forget to enter your email address if you will be sending through the PAN system.  If you are mailing the letter, it may not be necessary
• You can then use the letter template
• ADD your personal story or message if possible because it carries more weight.
• Write your additions to the letter in 5 minutes or less - okay, it might take longer but not that long - I just did mine. The system will indicate if your legislator has already co-sponsored the bill and will generate a thank you letter - be sure to send that. 
• Otherwise send the request for co-sponsoring letter with your personal revisions or additions
• To send a message to your senator requesting support for S.1273 - yes, separate letters are needed, click here.

I've sent mine and Steve will be sending his soon.  I hope that you will join us.

Just a reminder from the PAN forum, if you're written to your legislators before and they had responded positively, be sure to thank them. When you're bombarded by requests, problems and complaints, it is nice to read a kind word. 

We'll be back with more information from the forum.  But just in case you'd like to view it, you can do so by going to the Parkinson's Action Network website. I'm not sure if it is posted yet but if it doesn't, just bookmark it and return in a few days. 

To follow these both the Senate and the House bills

Senate Bill: S.1273 National MS and Parkinson's Disease Registries Act

House of Representatives bill: HR1362 and here

The next webcast of  Parkinson's disease interest is from the Parkinson's Disease Foundation and this event will be held on Tuesday, February 23, 2010 at 1:00 pm EST.  The topic is Nutrition and Parkinson's Disease.

You can link to the PDF website for webcast access here.

PAN is also working to Extend Exceptions to Medicare Therapy gaps.

Low Dose Naltrexone and Parkinson's Disease III: Dosage-Timing Updates

LDN Updates and Finding a Compounding Pharmacist

We wrote about Low Dose Naltrexone on May 31, 2009 as a possible PD treatment adjunct. On June 8, 2009 we posted an update on the possible side effects.

Naltrexone (Reviva) is an opioid blocker, it blocks all of the opioid receptors in the brain. It was approved by the FDA to treat recovering addicts. Since it is generic, we won't see additional presentation to the FDA for other conditions.

The low dose version triples the body's production of endorphins which supposedly kicks the immune system into full operation. The drug doesn't fight the diseases directly, the body fights the diseases after the immune system is back to normal. The LDN (about 4.5 mg daily after titrating up from 1.5 mg) effectiveness lies in its intermittent blockage of the opioid receptors allowing for endorphin levels to increase for 1-3 days.

A special Thank You to the reader, Solutions for Stressed Caregivers, who took the time to post a comment which provided a link to the recent and first Low Dose Naltrexone Conference held in April, 2009 in Glasgow, Scotland.

SSC also noted that the dosing time recommendations had changed. According to what we read daytime is now a favored time. However, at the conference it was observed that in chronic fatigue syndrome, a morning dose is recommended due to sleep issues. MS patients who have found significant help through LDN, the times should vary according to need and sleep requirements.

I thought that we had mentioned that liquid LDN was available but what we didn't realize was that it could actually be compounded with care at home. Although that is not something we would try or recommend, we did find a link to advice for doing just that. Mr Delaney has also provided practical suggestions for finding a compounding pharmacist. If you reside in the United States you will want to make sure that the pharmacy or pharmacist belongs to the Professional Compounding Centers of America. In the US you can also contact the PCCA. For those in the UK, the contact information is in the article. Many thanks to Mr Delaney.

Remember, before adding supplements, adding a medication, changing dosage and times, or stopping a medication, always consult your physician.  And please let your doctor know about any seemingly benign supplements you are taking because there can be interactions to certain medications.

Although the Parkinson's LDN database at LDN World Database is small, it will provide some helpful information.  If you are using LDN for PD or know someone who is, it would be a great idea to make your addition to the database.

Addemdum 4/04/11
Just a cautionary:  Some medications may do not work well with LDN for some people although they might work just fine for you - we'll be adding to this list:
Clonazapam (klonopin), a benzodiazepine
Prednisone
We'll be expanding this list

Addendum 6/27/11
I just read a very inportant tip for PwPs taking LDN. We be pass it along because of the Parkinson's risk of falls and breaks and the very real possibility that you could be given a narcotic painkiller in such an emergency.
If you are taking Low Dose Naltrexone, it would be a good idea wear a medical alert bracelet/pendant/dogtag stating just that: Low Dose Naltrexone (4.5mg) rather than LDN which people might not recognize.
It is important that the information be directly available before treatment is initiated using a painkiller which will cause you incredible pain if you are on LDN which blocks certain receptors.
And of course carry a wallet card which lists allergies and other pertinent information.

Addendum 9/27/11
Dr Weintraub reports that clinical trial NCT01052831 is still enrolling for Parkinson's disease patients in the Philadelphia, PA area.  This trial is being funded by the MIchael J Fox Foundation.

LDN: Parkinson's Disease Treatment or What?

Is Naltrexone a Viable Treatment for Parkinsons Symptoms?

It's been around for more than 20 years. It's always been controversial. It's had a few clinical trials, now it's getting more. Some say it works, some say it does nothing. A lot of people view it as another form of snake oil. But there is a community that believes it can help MS, ALS, Parkinsons, Alzheimers, Cancer, HIV/Aids, Celiac Disease, Crohns disease, Fibromyalgia, IBS and several other diseases. Warning signals go off in my head when a drug claims it can cure or slow so many serious things. But I'll ignore them and take a look at what's being claimed.

Here's how it is thought to work: Naltrexone is an opioid blocker, it blocks all the brain's opioid receptors and it was approved by the FDA to treat recovering addicts. The low dose version triples the body's production of endorphins which gets the immune system into full operation. The drug doesn't fight the diseases directly, the body fights the diseases after the immune system is back to normalcy.

Naltrexone is generic so no drug company will pay the millions needed to go through the off-label process with the FDA or the EU drug agency because there's no profit in doing so.

Another problem is that the drug comes in a 50mg capsule for the use of the addicts. Other human diseases would mainly use doses of 1.75 to 4.50 mg per day ("low dose" or LDN). To get capsules with the necessary dose size the patient wishing to use this drug needs to find a compounding pharmacy that is experienced with LDN. I think that some of the problems that off-label patients have had with the drug may have been inaccurate dose size from the compounding pharmacy. It is available in liquid form which must be kept refrigerated. If using the solution, you need to stipulate that you do not want the slow-release (SR) form. Remember also that you will need to titrate up to a dose effective for you. We've read of some MS patients only stop at 2.8mg and do not go all the way to 4.5mg.

It is important to take it between 11:00pm and 3:00am because the body makes endorphins in the last few hours before sunrise. Naltrexone is an opioid blocker-opiate antagonist; it makes the brain think it has a deficit of endorphins. So to compensate the body makes 2 to 3 times the normal amount of endorphins. The endorphins function restore the immune system to full operation. Some LDN users also add chlorella to their regimen for additional support.

Purely anectdotal evidence exists showing LDN reducing symptoms in MS patients and to a lesser extent in Parkinson's. At a site listed below the following improvements were noted: sense of well-being; no more depression; improved sleep; episodes of delusion/paranoia stopped; ease of muscle tension followed by restored normal breathing pattern; lowered doses of PD meds; improved cognition; restoration of balance; no more night sweats; no drooling; smile returned; lack of side-effects.  (1/2011 update) A recent anecdotal report indicates that tremor reduction after 6 days of use. It is  too early to determine if this is due to the effects of LDN or placebo effect.

So how do you obtain LDN? You print out some information and you discuss it with your doctor...who might mention the connection between T-cells and decreased dopamine but not that LDN might adjust the glial process...Which we will be discussing in the future.

Clinical trial results:
http://www.ncbi.nlm.nih.gov/pubmed/17222320
http://www.lowdosenaltrexone.org/ldn_trials.htm

Parkinsonian symptom abstract
http://www.sciencedirect.com/science?_ob=ArticleURL&_udi=B6T0C-4FTS37F-5&_user=10&_rdoc=1&_fmt=&_orig=search&_sort=d&view=c&_acct=C000050221&_version=1&_urlVersion=0&_userid=10&md5=50ee2ac9fb3795a3bb2c046b749e83ad

An interesting news item
http://www.mailtribune.com/apps/pbcs.dll/article?AID=/20080310/NEWS/803100308/-1/LIFE

You might find these interesting:
http://www.revolutionhealth.com/drugs-treatments/rating/naltrexone-for-parkinsons-disease http://www.digitalnaturopath.com/treat/T74481.html

Specifics about Low Dose Naltrexone

Check this site for LDN information  

and also this one: http://www.lowdosenaltrexone.org/

Our next two posts in this series:

Low Dose Naltrexone and Parkinson's Disease III: Dosage and Timing

Low Dose Naltrexone and Parkinson's II: Side Effects

Although the Parkinson's LDN database at LDN World Database is small, it will provide some helpful information.  If you are using LDN for PD or know someone who is, it would be a great idea to make your addition to the database. They have a much longer MS database and a list (database) of pharmacists as well.

Addendum 3/29/11
Many patients are also taking Alpha Lipoic Acid as a supplement when they take LDN. Watch for R-ALA which is the positive form.
Researchers are now looking at natlrexone to treat the inpulse-control side effects of PD meds. We are wondering if those who take Mirapex and Selegiline or other dopamine agonists or MAOIs would be able to continue to have the benefits of those medications without the problems which many PwPs have experienced.

see: Naltrexone for Impulse Control Disorders in Parkinson's disease.

Addendum 6/27/11
Because we think this is very important, we just want to remind anyone taking LDN to always have a bracelet/dogtag/pendant/wallet card indicating that you are taking Low Dose Naltrexone.
In the event of a bad fall or other injury, you don't want to be given narcotic/opiate painkillers or you will have pain far worse than the pain you are already experiencing.
It has been suggested that this tag indicate Naltrexone at the very least as some people may not be familiar with LDN.

Medical Marijuana for Parkinson's Disease

Maybe the Grass Is Greener...

Everyone who has read Parkinson's Focus Today knows that Steve has arthritis in his knees. It is very unpleasant in his left knee - his PD side. He has trouble walking, hates to kneel because of the constant pain and has a real problem rising from a kneeling position. Which means, no more plumbing repairs around the house; no display of that plumbers' butt crack. Because he needs a cane to walk, that means no more toting things that need to be moved around. That's kind of inconvenient for me because it means there's just one of us to do the lifting. He is the consultant now.

So a few weeks ago we were trying to snake a graywater drain and I managed to cut up my arms and hurt my thumbs repeatedly and badly. Long boring story but suffice it to say, I had blood dripping, deep abrasions on my thumbs - the wound on one thumb just stopped hurting this morning. (Note: vitamin A & D works better than vitamin E when applied directly to the scabbed area.) The snaking process took place over two weekends during which I managed to reopen the abrasions on both thumbs. I sprayed painkiller every hour to thumbs and arms for several days before easing off to a couple of times a day. And I have a high pain tolerance.

At some point I dug my nails into my palms to try to determine my pain level...or something. That gave me an idea. I wanted to find out how much that knee hurt him. So I took out my trusty hand, pushed those nails into his arm and asked him to tell me when the nails hurt more than the knee. I'm still strong but it took a lot of pressure - far more than the thumb test. So I would say that his pain level is moderately high. Not as high nor as consistent as pains from other conditions but far more painful than my raw burn-like skin which healing and would end.

Which brings me to the point...at last...I'm not one of those old hippy-dippys - I was a Girl Scout leader before I had children...so I didn't do drugs (unlike a former President)...but I am a believer in the use of Medical Marijuana to deal with a variety of conditions, diseases and pain. I know that mj relieves some asthma symptoms quite effectively. I know that it is effective in dealing with glaucoma, cancer agonies. It is effective in nausea and vomiting, in wasting syndrome and appetite stimulation as well as neurological symptoms and muscle spasticity.

10/26/09 Correction:
Just last week after recommendation by a Medical Advisory Board, New Mexico added the following conditions to the list of those who can apply for the Medical Marijuana Program run by the New Mexico Department of Health: 
Severe chronic pain
They did not add the following inflammatory and/or neurodegenerative conditions:
Severe osteoarthritis, Rheumatoid arthritis, Reactive arthritis
Post-polio syndrome
Parkinson's disease
Alzheimer's disease
Inclusion Body Myositis - chronic muscle inflammation and weakness as well as severe chronic pain
The Board under Secretary Alfredo Vigil, MD did not feel there was enough clinical evidence to substantiate the inclusion of the above conditions.

The above conditions would have been added to the list which included:
Painful peripheral neuropathy
Damage to the nervous tissue of the spinal cord with intractable spasticity
Intractable nausea/vomiting
Severe anorexia/cachexia
Hepatitis C infection currently receiving antiviral treatment
Crohn's disease
Post-traumatic Stress Disorder
Amyotropic Lateral Sclerosis (ALS-Lou Gehrig's disease)
Cancer
Glaucoma
Multiple Sclerosis (MS)
Epilepsy
HIV/AIDs
Hospice patients

The application for the New Mexico program can be found at http://www.nmhealth.org/marijuana.html You must have a debilitating condition and one which is not helped by standard treatment. Your physician must have informed you of the associated potential risks and benefits. While I know that my husband wouldn't qualify by any current standards as the hinged knee brace offers some assistance for support which relieves some pain; I also know that there are hundreds of thousands of people who are in much worse condition and should qualify.

Only 47 of the 295 applicants have been approved since the New Mexico program inception in July 2007. By contrast in Colorado there are 5,920 patients with registration cards. California, New Mexico and Rhode Island will be the only states which actually allow medical marijuana dispensaries. States with pending legislation, however limited include: Alabama, Connecticut, Illinois, Iowa, Minnesota, Missouri, New Hampshire, New Jersey, New York, North Carolina, Pennsylvania, Tennessee

The Supreme Court declined to hear the challenge the validity of the California law.

One last observation. Forget that old "if they try it they'll move on to..." the above symptoms are horrendous and some patients are hoping that they can reduce their morphine and other very strong stuff with some unpleasant side effects and to improve their quality of life. We'll be revisiting this topic.

Sources and resources I'll bet you never thought you'd see here:
http://www.nationalpainfoundation.org/articles/112/marijuana-and-pain-management
http://www.torontohemp.com/phpBB2/viewtopic.php?t=2412&sid=a43e9830121eb0ed1f8ed80439dbd529
http://www.nap.edu/catalog.php?record_id=6376
http://www.gazette.com/articles/marijuana-52851-research-patients.html
http://www.artesianews.com/new-health-condition-added-to-medical-cannabis-program/
http://www.mpp.org/
http://cannabisnews.com/news/24/thread24782.shtml
http://www.marijuana.com/drug-war-headline-news/121597-ny-should-marijuana-legally-prescribed-pain-reliever-new-york.html
http://www.vaughns-1-pagers.com/medicine/painkiller-comparison.htm
http://www.cannabismd.net/endocannabinoids/
http://en.wikipedia.org/wiki/Nabilone
http://www.ncbi.nlm.nih.gov/pubmed/17336288

2011 Addendum:

A September 2011 update of states where the courage and compassion has been found to decriminalize Medical Marijuana possession and/or cultivation.

2018 update
A map showing states which have legalized marijuana and those which have legalized its use for certain medical conditions only

President Obama Bans the Ban

Removal of Embryonic Stem Cell Ban Gives Hope for Cures

I don't know about you but in this house we
feel like the Munchkins singing when Dorothy's house fell on the Wicked Witch of the East. It isn't because we are positive that stem cells will hold a cure for Parkinson's disease, although we are pretty sure that many conditions will find a resolution as a result of research in this area. It is because we feel that we have been pulled from the dark age cycle of provincial mentality. The USA can reenter an age of competitive research internationally.

President Obama issued an executive order to lift the Bush ban on Federal support for embryonic stem cell research. While scientists say stem cell research will lead to many medical breakthroughs, many religious groups oppose the research. The awful irony is that the readily available embryonic stem cells which were so protected were never going to be used. They became part of a confused, misguided, mean-spirited religious and political processional to the trash pile. And the life potential of so many people who will perish because a cure hasn't been found in time became just another ignored member...until now.

Obama promised to "vigorously support" new research. The Bush ban had prevented federal funding for any research on embryonic stem cells created after August 2001. Obama is showing that his administration is not going to allow the political and religious interference into scientific research that has frustrated sufferers of chronic diseases for the last 8 years. Neurological Diseases such as Parkinson's, Multiple Sclerosis (MS), ALS, Type 1 Diabetes, Duchenne and Becker Muscular Dystrophy (DMD and BMD) might have have been far closer to a cure without Bush's simplistic interference.

Now that the executive order is issued the National Institutes Of Health will need about a year to rewrite the regulations and guide lines, before federally funded ESC research can begin again.

Join us in reading the entire Executive Order
http://www.whitehouse.gov/the_press_office/Removing-Barriers-to-Responsible-Scientific-Research-Involving-Human-Stem-Cells/

When You Have Parkinson's Disease, a Month Is a Long Time

Obama Disappoints but We're Keeping the Faith
Last week February 15, 2009 President Barack Obama disapointed most members of the movement disorder communities by not issuing a new stem cell executive order that would allow research and funding for embroyic stem cells to resume in the United States. During the campaign, he promised to do this as soon as he took office.
Perhaps the President and his staff don't realize how long it takes to develop new treatments, test them and get FDA approval. Patients who are in the latter stages of a chronic disease can't wait. Time is life or death for them. We need cures and treatments that stop progression and we need them now.

Hundreds of new stem cell lines were developed without federal assistance since George W. Bush imposed the ban in 2001. Some of those lines could have already led to cures for diseases like Parkinson's, Huntington's, MS, ALS and others. Eight years is a very long time in a medical research lab. Had the ban been lifted when the legislative branch tried to do so, more treatments might be available now and basic medical understanding could be even greater.

Doctors and researchers are surprised and disappointed that the President hasn't acted yet. A month is a long time if you or one of your loved ones are enduring the torture of an incurable disease.

Of the executive order which Obama advisor David Axelrod said the president was "considering that now" we have heard nothing despite the promise. Some see that as a distancing from Obama's pledge and consider the lack of action as perhaps a sign of a potential compromise with pro-lifers.

No one expected the implementation of a universal health plan immediately because that is an expensive proposition which will take a long time to properly develop. Overturning a 2001 executive order should be a matter of a few hours of paperwork; it requires no other expense or ceremony. Even lifting the ban without providing funding would have been a good step because it would have freed monies used for duplication of university facilities.

On January 22, 2009 the President quickly signed executive orders reversing President Bush's policies on torture/treatment of terriorism suspects. While the documents were full of loopholes, at least he took the first step.

In the past Obama expressed concern about torture, as a senator he stated in opposition to a bill approving torture, S3930, "Fundamental human rights"..."should be bigger than politics." So in a matter where the issue is man against disease, his lack of action on the stem cell research issue is confusing, surprising, disheartening, infuriating and is seen as a betrayal of a basic promise and a support of the torture brought on by diseases which might be treated or cured with the development of additional stem cell research.

Perhaps our health is not larger than politics.

2/23/09 Update
Here's what we do know: On February 6, 2009 the Coalition for the Advancement for Medical Research (CAMR) sent a letter to the President requesting the issuance of an Executive Order reversing the stem cell research policy of the previous administration.
You may link to Parkinson's Action Network and the links for sending your own email to the President:
http://www.parkinsonsaction.org/Urge-Obama-to-Issue-Stem-Cell-Executive-Order.html