Beginning last year on the anniversary of her death, I decided to honour my mom in tangible ways. She died from a despicable disease called ALS. Her backstory (through my eyes) can be found here. My thoughts regarding ALS one year ago, can be found here, here and here. She died on March 31st, 1999.
In honouring her, I have included these 5 tangible ways:
- keeping up to date regarding ALS information
- contemplating a hypothetical treatment protocol
- learning about inspirational PALS (people with ALS)
- expressing my gratitude
Keeping Up To Date
Not a great deal has changed regarding ALS treatments in the past year. However, smatterings of new research in ALS genetics has come to light, the most recent one coming from John Hopkins University. The best summaries of ALS studies in 2012 can be found at ALS TDI and MND Research.
Regarding treatments, as I stated last year, I'm keeping my eye on the intravenous treatment NP001 by Neuraltus, the direct embryonic stem cell transplantation by Neuralstem, and the adult autologous intrathecal stem cell implantation by Brain Cell Therapeutics, to see what develops. It's far too early to tell if any of these will be effective science-based ALS therapies.
While I feel sad for those who had high hopes for the drugs Dexpramipexole and Ceftriaxone, their proven scientific inefficacies did not surprise me. There are other drugs in ongoing clinical trials that I predict will also, unfortunately, be duds.
Unbelievably, even 18 years after my mother was first diagnosed, there are ALS (MND) associations like this one in the UK, who write this on their website:
“The only 'proven' treatment for MND is Riluzole.”
This is shameful. Riluzole is a useless drug. There is no treatment for ALS as of yet. At least those who manage that website had the courtesy of putting the word 'proven' in quotation marks.
This particular MND association also goes on to say:
“We would encourage anyone with MND who is considering embarking on an unproven treatment to discuss all the implications with their neurologist before making a decision”.
To which I would add, “provided your neurologist is kind, compassionate, open-minded and open-hearted”. (In other words, not an asshole).
Unfortunately, this section regarding keeping up to date with new data is pretty short.
Contemplating a Hypothetical Treatment Protocol
(. . . while awaiting an effective and solidly 'proven' scientific treatment protocol to be developed)
Disclaimer: The following information contains my own personal and medical views regarding what I would hypothetically do for myself or a loved one if faced with this life threatening disease. In no way is it a recommendation for anyone with ALS to follow. It is always best to seek the advice of your medical care practitioner when undertaking any type of therapy; and preferably, a medical care practitioner who is not an asshole.
Again, this year, I've contemplated what I would do if I had ALS. Actually, if I did develop this disease, I would have the familial variant of it, so I would make myself easily accessible to scientific researchers who are involved in the genetic studies of this disease. However, it is highly unlikely that I will develop the familial variant of ALS.
Hypothetically, if I were afflicted, I would enrol in a clinical trial (even if I just received a placebo as part of the control group). I would enrol only if the clinical treatment being studied made sense to me. Many of the clinical trials that are now ongoing make no sense to me at all.
A Hypothetical Protocol for myself or my loved one:
- balanced bioidentical hormone therapy (including estradiol, estriol, progesterone, DHEA and possibly testosterone); determined by a 24 hour urine steroid hormone test
- DHA 1200 mg (liquid) twice daily (which includes a total of 260 mg of EPA)
- Magnesium Glycinate 330 mg twice daily (495 mg BID if my bowels could tolerate it)
- Acetyl-L-Carnitine 1000 mg twice daily
- Extra Virgin Coconut oil 2 TSBP twice daily
- Taurine 675 mg twice daily
- B-complex vitamin twice daily (containing folic acid in the form of 5-MTHF and vitamin B6 as P5P)
- Echinacea liquid (only from Medi Herb) highly diluted in water
- a high fat diet, consisting of large amounts of good quality fats: lamb and lamb fat, mutton, goat cheese, goat milk, organic yogurt, organic butter, ghee, coconut milk, coconut milk ice cream, salmon, poultry with skin, unprocessed beef and beef fat (not hamburgers, hotdogs, sausages or deli meat), wild game with fat, unprocessed pork and pork fat (not bacon, ham, deli meat or sausages)
- a high healthy glucose diet: dates, prunes, dried cranberries, raisins, fresh fruit, pure maple syrup, unprocessed honey, rice syrup, agave syrup
- a preservative-free/additive-free diet
- a diet high in leafy green vegetables, cruciferous vegetables and other vegetables with low phytosterol content, and avoiding foods with high levels of beta-sitosterol (pumpkin seeds, nuts, avocados, fava beans, corn oil, canola oil, soy, margarine, mayonnaise and cocoa)
- intravenous glutathione 1 gm 3 times per week
- intravenous methylcobalamin 5 mg 3 times per week
- very light weight training
- somatics exercises
When I look at the list I wrote out last year regarding what I would hypothetically do for myself, it is quite similar to the one I wrote above with only a few changes.
It's fascinating, reading the various supplement protocols that PALS (people with ALS) have developed for themselves in order to help improve their energy, and hopefully slow down their nervous system degeneration.
There is something called the Deanna Protocol that sounds quite interesting. Whoa. Lots of pills. Would I take AAKG (Arginine Alpha Ketoglutarate) or AKG (Alpha Ketoglutarate)? I don't know. I'd have to research it more. I've never used it in practice, and while I believe it would help improve muscle health, I can't see how it would prevent motor neuron degeneration. However, I do wish those who are trying it, the best of luck and hopeful success.
There are those who are trying L-Arginine with plausible reasoning. I personally do not tolerate this amino acid even at low dosages, so it would not be on my to-do list, but I see how it could potentially help others.
Last year I mentioned rectal ozone insufflation. I probably would delete it from my bucket list at this point.
And this year, I added Echinacea not only because of the scientific research that involves heat shock proteins, but because I have finally found an Echinacea that is efficacious in clinical practice for immune health. When I first started practicing 20 years ago, I used Echinacea quite a bit. Clinically, I was not impressed with this herb at all, so I stopped using it for many years. I have recently started using it again with good clinical efficacy, for the prevention of colds and flus. The company Medi Herb from Australia, is the only company I now use for the manufacturing of Echinacea.
However, the most important therapies I would follow would be hormones and high fat therapies. I've already been doing that to a lesser degree for many years now for general good health maintenance, however, I have been using much lower dosages of DHA and coconut oil.
The benefits of a high fat diet for neurological support is nothing new, but a potential high glucose diet may be. An ALS worm model showed that glucose could be neuroprotective. On the other hand, poor quality glucose like high fructose corn syrup can be detrimental to patients as seen in this blog, written by Eric Valour, a man with ALS.
As well, I would probably experiment with properly diluted intravenous DMSO. When properly diluted, DMSO is extremely safe. It crosses the blood brain barrier (BBB) easily, it is neuroprotective, and it is a potent anti-inflammatory agent. Dr. Stanley Jacob MD has battled the medical establishment for wider spread acceptance of this valuable medicine that has been used in a wide variety of conditions, including spinal cord injury, traumatic brain injury and stroke. Dissolution of amyloid plaques make it a potential therapy for Alzheimer's disease.
I am very surprised that I could find no anecdotal reports of any PALS having used intravenous DMSO. Even if DMSO didn't amount to much (other than to create a foul sweet smelling body odour that lasts 24 hours after an intravenous treatment), it would be an excellent carrier for potential pharmaceutical drugs in order to assist with transport across the BBB; not to mention, assisting with improved transport of intravenous methylcobalamin, magnesium and niacinamide.
I am also surprised that this molecule has not been studied with regards to ALS research (that I could find), even as a carrier molecule for potential effective pharmaceutical drugs. Hmmmm. I'm not a conspiracy theorist, so I don't believe that the reason would be because DMSO is so inexpensive to produce, thus creating no potential financial gain for interested parties. It must be because of that God-awful smell after treatment. :)
However, I am reminded by 'Nemesis', a brilliant scientist who writes on the ALS TDI forum, that DMSO is a strong anti-oxidant. I've already written in a previous blog how ALS seems to be a high wire balancing act between the necessity for reactive oxygen species and the damage that they cause. He also reminded me that DMSO may also compromise the BBB. Hmmmmm.
It all comes down to trial and error I guess.
Unfortunately, this section regarding new ideas on a hypothetical treatment plan is also pretty short.
This fall, I will be attending a naturopathic medical conference, where neurologist, Dr. Perlmutter will be speaking. I see that he and Glutathione are on ALS Untangled's hit list and are awaiting to be reviewed (and shredded through the meat grinder by science-based medical experts). I will definitely be asking questions at the conference.
There are many, many, many organizations and many people intimately connected to ALS that deserve and need our financial support. There are ALS associations, ALS researcher centers, ALS advocacy groups, incredible people with ALS, and the list goes on and on. Here are some that I like:
People Who Blow Me Away
Last year, I mentioned a few people with ALS that just blew me away. The admiration and feelings of inspiration I had when reading about these people were palpable.
ALS is clearly a very tough road. Here are a few more PALS who are simply amazing people:
Francis Tsai is a well-known comic book illustrator in his field, and now draws with the use of his eyes and computer technology. He has ALS, and now with only the ability to move his eyes, draws these incredible pieces of artwork. How mind-blowing is that? Check out his artwork and store.
His artwork is quite intricate and complex, however, the design that caught my eye was a 'simple' beautiful butterfly design. I love this T-shirt that I just purchased. It holds a great deal of significance for me. After mom died, I consistently saw butterflies flying around me for a few months thereafter. It's as if she was symbolically sending me a message that she had metamorphosed into a free state and not to feel sad about her.
Another amazing human being, is a man named Ben Harris, who is a medical physicist and has ALS. Not only has he participated in a previous clinical trial, he has been engaged in courageous self-experimentation in an effort to find a substance that could be helpful for himself and others.
Science-based medical critics who frown upon those engaged in self-experimentation are small minded people. It takes incredible courage to try all of the self-administered intravenous substances Mr. Harris has tried; even more courageous than base jumping.
Journaling My Gratitude
When I think of my mother, I have frequent thoughts of gratitude. This time, I will write these thoughts down instead of having them float around in my head.
My mother was the sweetest and most affectionate mother I could have ever asked for. She was always making efforts to help everyone she could. I am so grateful that I shared a deep and loving relationship with her. I'm so sorry that she had to suffer from this disease called ALS, however, her strength through her disease process was magnanimous.
I continue to pray for a cure for ALS, and that all of those PALS living now will benefit from that potential cure. I am grateful to all those researchers, scientists and doctors who work to that end, even though it must often seem like a hard grunt up the mountain.
I am grateful that my mom was able to climb the mountain at Crater Lake in Smithers with us just before she died.
Rest in peace mom. If there is a God and a heaven, I hope to see you again one day.