I know Sharon Comden from the CBD-related online support group. She was diagnosed with corticobasal degeneration (CBD) in 2009. She has a doctorate in public health from UCLA and, as you’ll see, she’s one smart cookie.
Sharon gave me her permission to circulate three recent posts in early 2012 about her treatment regimen (using supplements). As CBD and PSP are similar disorders, her approach may be of interest to those with PSP (progressive supranuclear palsy).
One insignificant change I made to her posts is that I substituted “CBD” for “CBG.” The old acronym for CBD was CBGD.
Sharon asks that you contact her via the CBD-related online support group (if you are a member there). Let me know if you want to join; I’m a moderator of the group.
Robin
Editor’s Note: Sharon Comden died in late 2015. We at Brain Support Network were honored to help her make advance arrangements for her brain donation. She was a remarkable woman.
—————————-
(In this post, Sharon is responding to Elaine, whose mother is 91 and has a CBD diagnosis.)
Re: Treatment Options for PSP and CBD (Review)
Posted by: “Sharon Comden”
Date: Wed Feb 15, 2012 5:14 am ((PST))
Elaine, I have had CBD since 2009, when the first symptoms of hand apraxia (difficulty w/zippers, putting earrings on, and later deterioration of keyboard skills) showed up. In late 2010, I began having speech issues–slowing and intermittent difficulty pronouncing some words. It got progressively worse and my search of the “emerging therapies” literature paid off for me; I’ve seen significant improvements over the last eight months that I’ve been on my supplement regimen. My symptoms included: loss of sensation and fine motor coordination of my fingers (apraxia), slowed gait and upper limb movements, curling fingers of both hands when at rest (dystonia), speech slower and more hesitant than normal and difficulty pronouncing polysyllable words like “degenerative.”
Since there are no medical treatments currently available, I decided to look for promising therapies that had good preliminary results in animal studies, seeking low toxicity “emerging therapies” based on lab research results, if not clinical trials. I also contacted leading researchers with many years of experience working with drugs/supplements that act on neurodegenerative diseases. I have a doctorate in public health from UCLA and have research training (though not in neuroscience). I don’t pretend to understand everything–this is very technical research–but I am fairly confident in what I’m personally taking to delay progression of my CBD. It takes a multifactorial approach to combat CBD/PSP because there is no magic bullet that impacts all the elements of this disease, so a cocktail of different drugs/supplements is necessary, depending on what symptoms or part of the disease process we want to target.
Last May, I started taking 1000 mgs of bioavailable curcumin (Longvida, available in capsule and powder forms from phytosensia.com) w/ at least 500 mgs. vit. C and one 1200 mgs enteric coated DHA/omega 3 fish oil from Costco (Kirkland brand) on an empty stomach in the morning and at bedtime. Like your Mother, I also take 600 mgs. of CoQ10.
After four weeks on the curcumin/DHA/etc., I began to see improvements in my speech, at 4.5 weeks the curling fingers were gone, and my gait/limb movements returned to normal speed. Those benefits continue and most of the time, my speech is near normal. I subsequently lowered my dose of Longvida to 500 mgs. to twice a day after a few weeks, following what I call the initial induction phase when the curcumin levels are rising to therapeutic levels in the brain.
At the suggestion of my neurologist, I’ve added 25 grams of trehalose (NeuroCoatT, 1 tablespoon twice a day dissolved in a beverage or with food), a commercial sweetener shown to be safe and beneficial with Huntington’s Disease. It seems to be improving my articulation as well and compliments the action of the Longvida formulation curcumin. I understand there will be a clinical trial of the Longvida formulation, perhaps later this year. I also take a baby aspirin every other day.
Your Mother’s advanced age may or may not color her response to this regimen, all reputable over-the-counter supplements. Some caveats:
1. There is data available on the safety/efficacy of these supplements in animals and often humans too, but limited or no data on what happens when you take several concurrently. Many are common foodstuffs, e.g. curcumin (tumeric), trehalose (widely used commercial sweetener), but there is a risk that some combinations don’t work together or produce adverse reactions. Since I know what will happen if I do nothing, my personal decision is to accept that risk and keep good records of what I’m taking and how I respond. After eight plus months, I can report only benefits.
2. It takes three to six weeks to see changes after you start taking some supplements because it takes that long for them to build to therapeutic levels. Sometimes you feel a bit out of focus mentally before you feel better too. The “fuzziness” cleared up in a couple of weeks. I’ve been taking this combination for 8.5 months with no ill effects.
I hope your Mom does well with these supplements, if she decides to try them. This combination is based on hundreds of hours of reviewing scientific papers to find something that offers some hope for tauopathy sufferers (see First and Second Line of Defense maps on Yahoo CBD website). It’s the best we can do for ourselves right now, while researchers are looking for a cure.
Best regards,
Sharon Comden, Dr.PH
——————————
(In this second post, Sharon is responding to Dawn, whose husband has a CBD (corticobasal degeneration) diagnosis and has not had the use of his left hand for over a year. Dawn’s husband takes Aricept, Cipralex, and Crestor.)
Re: Treatment Options for PSP and CBD (Review)
Posted by: “Sharon Comden”
Date: Wed Feb 15, 2012 4:26 pm ((PST))
Dawn, this is a learning journey. My Mayo neurologist is cautiously watching what I’m doing–but he has also told colleagues about it and the results so far–so he is respectful of what appear to be symptom reversal for some things. I would normally refer you to your neurologist to help you assess potential contraindications, however, the likelihood of help there is about nil because outside of the research community, most neurologists are unfamiliar with supplements. I can share several scientific papers supporting the regimen, if you or your physician wants some reading.
As you note, I still enjoy a high level of function. Your husband may get some or no symptomatic relief at his stage; we just don’t know until the clinical trials are done with people at different disease stages. Here is reason to hope because at least one study of late curcumin intervention with mice, suggests that cognitive function can be improved by curcumin even in later stages of disease. We don’t have the luxury of waiting three to five years for human clinical trial results, unfortunately. Here is how I would proceed if it were my husband.
* Crestor is a hybrid drug that can adversely affect muscles through its “statin” component. The evidence of the value of CoQ10 to treat myopathies caused by statin drugs is mixed, but some physicians advise their statin patients to take CoQ10 to reduce risks of side effects, so it would seem reasonable that the 600 mgs. in the anti-CBD regimen (300 mgs. morning and at bedtime) would not be contraindicated. To the contrary, there is evidence of benefit in neurodegenerative disease. Lahey Clinic has a clinical trial with PSP patients on very high doses of CoQ10.
* The most powerful component of the anti-CBD regimen is the Longvida curcumin, originally developed in the lab of respected UCLA researchers Drs. Sally Frautschy and Greg Cole and subsequently licensed by the University to an outside manufacturer. If your husband is debilitated or sensitive to drugs in general, you might start with less Longvida and build up to the 1000 mgs. morning and at bedtime. One of curcumin’s actions is it stimulates autophagy, the cellular clean-up mechanism for the fragments of tau proteins created during abnormal hyperphosphorylation and destruction of normal neuron function. Not surprisingly, I did notice some cognitive effects after a week or so at a 1000 mgs. and my solitaire scores went down 500-1000 points. The fuzziness abated and the scores returned to normal after about three or four weeks. That is also when I began to see functional improvements.
* I would start the regimen as described in the last post, but leave out the trehalose, so you can first establish his response to the curcumin.
Keep good notes of what he is taking and changes in his condition. You have to use your judgment if he reacts poorly to the supplements. Even with FDA approved drugs, sometime people will have adverse reactions.
TIPS: digestion of a meal will interfere with the absorption of the curcumin in the gut, so take it at least 45 minutes before or after meals. Liquids are ok and if swallowing capsules is a problem, it’s ok to mix the curcumin into yogurt, a smoothie; even hot liquids like a latte or cocoa are ok. The manufacturer, Phytosensia, sells it in powder form as well as capsules.
www.phytosensia.com/Longvida-
I have problems opening the capsules, so the powder is great. Rough measure if you elect to use the powder is one-quarter tsp = 500 mg and one-half tsp = 1000 mgs. It doesn’t taste bad either–cinnamon works well in hot cocoa to blend the flavors nicely and I like it in peach yogurt.
Let me know if you decide to proceed or if you want more information.
Sharon
——————————
(In this post, Sharon is responding to me, when I’ve told her that her analysis is incredibly impressive.)
Re: Treatment Options for PSP and CBD (Review)
Posted by: “Sharon Comden”
Date: Wed Feb 15, 2012 4:49 pm ((PST))
Robin, thanks for the compliment. There is a strong possibility of a Longvida trial. The animal studies are very promising, as well as the results from my n=1 experiment. As you know, buying time until the cure is found is essential for tauopathy patients. I believe that I have bought time with this regimen. Coupled with regular exercise and cognitively challenging work–I feel good most all the time.