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.
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Thank you for the fantastic article. The place else could anyone get that kind of info in such a perfect means of writing? I have a presentation next week, and I am at the search for such information.
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ReplyDeleteIt’s magical! Ok… that’s obviously an exaggeration, but from all of the scientific studies done and all of the medical research known, omega 3 fish oil supplements are my pick for the closest thing we have to a real life miracle pill.
ReplyDeleteOmega 3 Benefits
First, I must disagree with your opinion of Amantadine. I do not think that there is any literature that supports the use of Amantadine to offset the side effects of Mirapex or Requip. Please check again.
ReplyDeleteSecond. I have not taken out the manufacturers literature on Amantadine to verify that its side effects are hallucinations and impulse control because these were the main side effects that it caused with me.
I was diagnosed with PD in early 2007 after staring symptoms in 2006. I have a very aggressive form which does not react much to any of the medications. I do not recall the name of the first medication that was tried, then Amantadine, then Requip. There was no effect on tremors etc but severe side effects with all of these. I then left my Neuro group and tried IV glutathione, then Isradipine, then LDN, then Chiropractic adjustments and somewhere in this time I also tried a series of Acupuncture treatments. Nothing had any effect on my tremors or progressive deterioration.
I returned to my Neuro in 2011 and am now on Stalevo 150 (3x per day), Requip 1.25mg (3x per day) and Azilect (1x per day) with minimal effect. My "on time" is not very reliable and comes in short 10 to 20 minutes periods which can be in quick succession or not. Then I read about Coconut Oil and decided to try it I am using Jarrow's with the Green Label ( I think that Nature's Way EFA Gold might be better quality but the extra price and their leaky packaging made me stick with Jarrow). I am still playing around to find the most effective dosage for me. I was using 2 tablespoons each morning at 9-9:30 AM on an empty stomach taken orally. At first I used it like butter on toast or bagel because it was congealed but with the summer heat it liquefied so I take orally since I have become accustomed to the taste. It gives me almost but not total relief from tremors at around 11-11:30 until 2-2:30. After my second dose of medicines at 3-3:30 I get another good on time from 4:30-5:00 until around 8:00 then after my 9-9:30 medicine get another short on time around 11-12:00.
So I am trying to see if a lower 1 tablespoon 3 times per day will regulate these on times better.
I am not going to use MCT oil because every brand that I have seen other than Nestle which needs a Rx and is very expensive, is made from synthetics and most seem to be made by Stephan.
The jury is still out on Piracetam but it is certainly worth looking into, especially for those with the non-motor symptom predominant form of Parkinson's disease because aside from sinemet, there is not much help out there yet. It's a GABA neurotransmitter derivative. One site that might provide helpful information is available for a cut and paste: http://www.patient.co.uk/medicine/piracetam
ReplyDeleteThe site will not try to sell you this nootropic, it will just supply practical details.
Dear George B,
ReplyDeleteIt is important to remember that different people can respond in different ways to medications so that not all have the same side effects depending upon other variables. All of the dopaminergics, dopamine agonists and MAO-Is can have similar side effects because of their effects upon dopamine. But not all people demonstrate the same side effects to these medications. Some people also have other medical conditions requiring other medications so that there can be varying interactions.
Equally significant to note that I did not invent the idea that Amantadine might have some positive effects on alleviating the unwanted side effects of Mirapex or Selegiline for example. Nor did I pull the idea that Amantadine can be tried not just in early stages of PD as an anti-inflamatory but also in the later stages to assist the person through some of the wearing off dystonia. I have read this in more than one study and also heard it discussed just recently at a PD webinar. I was quick to point out that I had not investigated the info about Amantadine as much as I normally do but it was worth putting out there. Since this particular blg article was posted, more info became available so I'll continue to stand behind it.
Not all meds and supplements used by people with Parkinson's disease (PwPs) will address all symptoms. In fact in no-motor symptom predominant PD, there are very few treatments, therapies, supplements or meds that will help many of those terrible symptoms.
Coconut oil, a medium chain triglyceride (MCT) has not actually been proven to be that beneficial despite many testimonies stating that it has. If you are really going to use coconut oil, consider one with no GMO connections; in other words a non-GMO produced product. We had been using Barleans coconut oil in cooking, baking and for frying. (Love to slide that egg from the pan when using coconut oil.) Now we are about to test the Viva Labs extra virgin coconut oil which is strictly non-GMO. The point is that there are many ways to reach your total of the suggested daily quantity but it is easier to start with a really good product. And if the oils in this chain are helping you, fantastic. Don't skip a high quality Omea 3 oil in the process. High quality means one that has the least amount of mercury possible.
While you did not indicate your symptons, I suspect that you have the non-motor symptom variant of PD which includes many conventional motor symptoms as well. It is interesting that you did not mention Sinemet which is now thought to be very important for aiding cognitive function in non-motor PD. You did say that your doctor put you on Stalevo which is Sinemet with a punch when Sinemet (levodopa/carbidopa) isn't enough.
I apologize for the tardiness of this response and would love to hear more from you.