Thanks Graham!

Today, thanks to my step dad (Graham) and his awesome credit card, we have ordered The Deanna Protocol..!

If you haven’t heard about this stuff yet, go check it out. It’s a promising treatment which has reported to slow the progression of ALS.

My step-dad Graham

My step-dad Graham

I have to mention though, this was no cheap exercise. And because we couldn’t find a supplier here in NZ, we had no choice but to import this stuff in from the states. But from what I’ve read, I’m definitely keen to give this stuff a shot.

If you knew me, you would know I’m always up to trying anything once. Why not throw anything and everything at it, what have you got to lose, right?

Since being diagnosed with ALS, I’ve learned a lot about the detriments of our modern lifestyle. I now drink more water in one week than I had in my whole life! All sorts of organic fruits and veges are in, which for some crazy reason I now crave, while sugar and processed foods are out. I have learned to value sleep, regular detox, lots of optimism, and occasional fasting.

I’m not holding my breath that this will work for me, but I am excited to give it a go! I’ll let you know how I get on.

By NateMcNabb Posted in Diary

Now that’s weird

Last week, my partner and I decided to head out to Waimarama Beach for a well deserved, Sunday getaway with our daughter Taahnisha, and dog Haka.

My darling "Donna" and I at Waimarama Beach

My darling “Donna” and I at Waimarama Beach

Waimarama use to be a popular holiday destination for me when I was a kid. Lots of cool memories. Camping, singing around the camp fire with my Aunty Marie, Uncle Jim, and cousin, Jodi, and of course all the mouth watering seafood.

These days, jumping in the car and heading out for a ride involves a whole lot more than it use too. My darling has to pack the wheelchair. Get me ready, as well as herself. She has to escort me to the car and help me in. Plus packing all my other bits and bobs I may need while we’re out. And she does it all with a smile, and a heart filled with purpose.

Of course, heading out to the beach isn’t the weird part of this story! I’ll get to that shortly.

When we arrived, we parked at the beach domain, close to the beach. But to our disappointment, we couldn’t actually see the beach, which was obscured by a sizeable sand bank. There was too much sand for the wheelchair, and I surely couldn’t walk up and over that bank?

And then it happened, and without me even thinking about it either. I just stood up out of the front seat of the car on my own, without any support..!  We were both stunned, and quite honestly couldn’t believe what I had just done!

My partner then thought, if you can stand up, maybe you can walk over this bank too. And you know what, that’s exactly what we did, with the help of my baby of course, and I loved it!

To our amazement, this wasn’t a one off event. For what ever reason, my legs have continued to grow stronger every day, which has given me back a tiny bit of independence and hope.

If you’re suffering with ALS too, you keep fighting… and don’t give up!

By NateMcNabb Posted in Diary

NZ scientist using skin cells to study killer illness

The NZ Herald
11:00 AM Saturday Jan 17, 2015

NZ scientist leads British project exploring process of incurable and fatal motor neuron diseases.

Kiwi Gareth Miles is heading the British research project.

Kiwi Gareth Miles is heading the British research project.

A New Zealand scientist is heading a project that uses stem cells grown from patient skin samples to study the process of the incurable and fatal motor neuron disease.

The disease, which can leave people locked in a failing body, has come under the spotlight as a result of last year’s Ice Bucket Challenge fundraiser and the movie, The Theory of Everything — about theoretical physicist Stephen Hawking, who has a rare form of the disease.

An early step in understanding and ultimately treating the disease process is being taken in a British research project led by Dr Gareth Miles, 38, who was educated at Rosmini College, Takapuna and the University of Auckland.

Now a senior lecturer at the University of St Andrews school of psychology and neuroscience, Dr Miles said new developments in stem cell technology opened up exciting possibilities for developing new treatments and ultimately finding a cure.

Motor neuron disease (MND) is a progressive neurodegenerative condition that attacks motor neurons — specialised nerve cells in the brain and spinal cord — causing loss of signals from the brain to muscles and eventually leading to paralysis.

The disease affects 300 Kiwis at any one time and the charity funding the research project, the Motor Neuron Disease Association, says it affects 5,000 people in Britain.

Dr Miles said researchers adopting stem cell technology could now turn samples of human skin into a replica of a motor neuron for laboratory study. “We can’t go in and grab people’s motor neurons out of a spine. But this way we have an actual human cell we can grow in a dish and study and test.”

The function of motor neurons from healthy people could be compared with those from patients suffering from different forms of MND.

A report on the joint project between St Andrews and University of Edinburgh scientists was published this week by the journal Nature Communications.

The work has so far shown that before any signs of damage, motor neurons affected by MND lose the ability to generate the electrical signals to the muscles due to changes in proteins called ion channels.

“Our work highlights ion channels as potential targets for future therapies,” said Dr Miles.

“It also demonstrates that studying the function of stem cell-derived motor neurons could be important for the development and testing of new drugs to treat and eventually cure the disease.”

Motor neuron disease
• Attacks motor neurons — nerve cells in the brain and spinal cord that control movement.

• People can still think and feel but become unable to move, talk and eventually breathe.

• 5,000 people in Britain have it at any one time.

• 5 die of the disease every day in Britain.

• 300 people in NZ suffer from it at any one time.

• Stem cell-derived motor neurons allow closer study and tests for a cure.

By NateMcNabb Posted in Facts

Things I Miss

If you watched the video, that’s me singing and playing the guitar.  That was me back in 2007, five years before i was diagnosed with ALS.

Today I’m partially paralysed and have to rely on a walking frame and wheelchair to get around.  I have almost no strength in my left and right arms and need assistance from my partner, kids, and others with even the most basic everyday things like getting dressed and taking a shower.

I miss all the usual things like being able to get up and walk around when ever I want. Being able to get in a car and go places when I feel like getting out.   I miss being able to cook my family a meal when we’re hungry, clean up a mess when I see one or pot around in the garden. I miss being able to send a text, pick up a cup and have a drink, drink beer without having to worry about getting help in the toilet… and I miss being heard and being treated like a person rather than a patient.

But I also miss the subtle things in life like playing the guitar and singing with the kids until 2 in the morning.  Running along the beach and feeling the cold morning breeze on my face.

Everything I want to do today involves me relying on others. So I guess the thing I miss most is my independence.

By NateMcNabb Posted in Diary

Coconut Oil Reverses Amyotrophic Lateral Sclerosis (ALS)

Clarence – coconutoil.com
January 14, 2015

Coconut_SplashIntroduction

I am not raising money or selling anything. I have ALS and want to share things that have helped me.

Philosophy

I think it’s important you know my philosophy before reading on. A wise man (my father) would always say to me when something was broken; “Fix it with what’s available to you! What do you have to lose by trying?”

That’s how I see my ALS. I have a choice. I can sit and wait for others, such as medical/research groups, to find a way to fix my problem, which hasn’t happened. Or, I can try with what is available to me.

That’s what I have chosen to do: to TRY! Fortunately, I’ve experienced improvements. Maybe the improvements are only 10% to 20%, but that’s more than I had before. I believe I can still get more, but it won’t happen unless I keep trying! If you feel that way too, please read on.

Basic Data

I am 62 with FALS (Familial Amyotrophic Lateral Sclerosis); inherited from my mother who died in 1987, about 8 years after its onset. I began showing signs in early 2007, and was officially diagnosed with FALS in September, 2008.

Because I believed there was nothing I could do to change the outcome, I just sat down to wait for the end. Then in late 2009 I read some things that caused me to think, “Dad was right, what do I have to lose by trying something outside the box!”

I’ve been taking magnesium chloride/water mixture since September 15th of 2009. I currently take 4 ounces per day (2 in the morning and 2 in the evening). I also started taking coconut oil on October 31, 2009. I started with 4 tbsp. per day the first month. I then went to 6 the second month, and upped it to 8 the third month. One coconut oil webpage said 4 tbsp. per day was for “NORMAL” people. I didn’t think with ALS I was normal. I now take 9 tbsp. per day (3 at each meal mixed into my food.) This is the only way I can take it. Straight causes me throat problems!

After reviewing another coconut oil webpage I started massaging coconut oil on my bad leg twice a day. The result from December 16, 2010 to January 31, 2011 was a 3/8” thigh circumference increase and improved strength. This was surprising so I am now massaging the entire leg, ankle and foot, focusing on any sore spots.

Following are specific details.

A. Before Taking Coconut Oil and Magnesium Chloride: (Nov. 4, 2009)

Difficulty walking due to weakness in right leg; had to use canes to walk.
Right leg felt asleep and non-responsive when walking or trying to move it.
Right thigh muscles shrunken so bones could be easily felt through muscles on underside.
Had “drop-foot”. Could not tip right foot up or down, nor pivot it side to side as much as left.
When sitting could not raise right thigh off the chair.
Extreme difficulty putting right shoe on.
Right ankle very purple and bruised almost all the way around it.
When lying face down on stomach with legs outstretched; unable to raise my right foot.
Extreme difficulty rolling over in bed because right leg could not move on its own.
Right leg could not push downward at all.
Very thick saliva at night.
Excessive yawning.
Nearly constant muscle vibrations in entire right leg; some in left leg and upper right arm.
Cannot walk on toes of right foot.

B. Changes Since Taking Coconut Oil and Magnesium Chloride Daily: (January 28, 2011)

Right leg and foot have same feelings as left.
Increased strength and size in front muscles of right thigh but still weakness in buttocks, back thigh muscles, and muscles affecting knee.
Left leg strength and size increased.
Can stand on right leg a little longer because it has gained strength.
Can move right foot and toes up and down, and tap foot to music.
Can pivot right foot inward and outward some.
When sitting; can pull right foot backwards, although not yet as far as the left.
When sitting; able to raise right thigh upward to put on pants.
Less difficulty putting right foot into a shoe.
Bruised appearance of right ankle almost gone.
When lying face down on stomach with legs outstretched; can begin to raise my right foot.
Normal yawning.
Can roll over in bed with minimum difficulty.
Can push downward with right leg.
Muscle vibrations in legs and right arm only happen occasionally and only during the day.
Still have slight twitching in right thigh and buttocks. (Hopefully it’s muscles waking up).

Conclusion

Thus far my ALS progression is much slower than my mother’s. For both of us the first muscles to be affected were the ones that allow you to run (buttocks, thigh, and knee muscles, etc.). At this time some of these muscles are still not responsive. The reason could be because the nerve cells are slow to wake up from their 2+ years of sleep!

I have had positive improvements from adding coconut oil and magnesium chloride to my diet. It’s the only change I’ve made. I believe the coconut oil and magnesium chloride has slowed, and partially reversed the progression of my ALS. Therefore, I plan to keep going on the diet. I also plan to continue massaging my right leg with coconut oil, and tracking my changes, good or not so good, monthly to see what happens! What do I have to lose?

NOTE: Although some information out there says coconut oil increases cholesterol levels, my January 2011 blood test levels were very good.

Update 2012

According to my doctors my annual EMG on March 6th 2012 showed no changes from last year. They said the progression had either stopped or was almost stopped, and that I should keep doing what I’ve been doing!

Since taking these things I’ve had enough positive changes that my doctors are confused, because they know there is supposedly nothing that helps people with ALS. Now they say I have “a form of ALS called Benign Monomelic Amyotrophy.” So I asked them if there was anything to help people with that disease, and they said NO. Then I asked “Why have some of my muscles gotten larger and stronger?” THEY HAVE NO ANSWER! All they say now is “keep doing whatever you’re doing.” So I am!!! I no longer have a drop-foot, no muscle cramps, etc. However, some of the first muscles to go have not responded yet, but I’m not giving up on them.

Read More >>>

Dr. Vincent Tedones – The Deanna Protocol

Dr. Vincent Tedone
Winning The Fight

Click hereThe Deanna Protocol, discovered by Dr Vincent Tedone, was developed for his daughter Deanna, who was diagnosed with ALS over five years ago.

After learning there was no treatment for the disease, he left his job as a surgeon, and after years of trial and error, developed a treatment that seemed to stop the progression of Deanna’s ALS.

The main ingredients of his treatment are substances found naturally in the body, which he found are lacking in people with ALS. The Deanna Protocol is a means of delivering these substances back into the body.

The number one ingredient is the energy boosting AKG, which provides energy to the mitochondria of nerve and muscle cells’ thus preventing cell death and the progression of the disease.  The program also involves caprylic acid massages and exercise.

Summary of The Deanna Protocol:

1. The Deana Protocol, which includes AAKG, Alpha-Ketoglutarate-AKG-LiquidGABA, Ubiquinol, and NADH, for which we use the precursors Niacin and 5-HTP [5-hydroxytrytophane]. (See below for complete regimen)

2. Antioxidants: Glutathione either IV or liposomal

3. Massage with extra virgin coconut oil, which contains caprylic acid, which enhances energy production in the mitochondria of the muscle cells.

4. Non-exhausting exercise (PRE, aerobic, speech, and respiratory) – Please note that non-exhausting exercise is exercise that does not diminish the function of your body after it’s done. For example, if you exercise your arms and you notice pain, weakness, or limited range of motion in them after exercising, you have exhausted your muscles and this is very dangerous. Do not exercise to the point of exhaustion.

The original Deanna Protocol: as provided by Tedone

Supplement, Dosage, and Hypothesized purpose (* main ingredients)

  • Arginine alpha ketoglutarate (AAKG)* Up to 18 g daily Delivers energy to nerves
  • Nicotinamide adenine dinucleotide (NADH)* 20 mg 2 times daily Stops nerve cell death
  • GABA* 250 mg 2 times daily Inhibitory neurotransmitter
  • Glutathione* 350 mg 3 times daily Free radical scavenger in the nervous system
  • Ibedenone* 180 mg daily Facilitates energy to nerves
  • Ubiquinol (CoQ100)* 200 mg daily Helps energy cycle in mitochondria

Additional Supplements

  • B complex Standard dosage from bottle General nerve health
  • Bee Propolis 200 mg daily Antioxidant for nervous system
  • CoQ10 Standard dosage from bottle Helps energy cycle in mitochondria
  • 5-hydroxy tryptophan 50 mg nightly Serotonin and melatonin precursors
  • Creatine 1758 mg daily General muscle health and recovery
  • Cysteplus 500 mg daily Counteracts glutamate hyperactivity
  • Ginkgo Biloba 120 mg daily Protects against glutamate excitotoxicity
  • Glutathione 3000 mg IV weekly Free radical scavenger
  • Glycine 500 mg twice daily Balance neurotransmitters
  • Magnesium 400 mg daily Calms nerves
  • Methyl folic acid (5-MTHF) 1 mg twice daily Needed with B12 for metabolism
  • Neurochondria 1 pill daily for nerve metabolism. One dose contains:
    • 1500 mcg of Vitamin B12;
    • 300 mcg of Folate;
    • 250 mg of Benfotiamine;
    • 150 mg of CoQ10;
    • 120 mg of R-Lipoic acid;
    • 150 mg of Glutathione;
    • 300 mg of Acetyl-L-Carnitine;
    • 150 mg of Phosphatidylserine
  • Opti Zinc 30 mg daily Increases bioavailability of zinc, stabilized calcium channels
  • Phosphatidylcholine 840 mg twice daily Needed for cellular maintenance
  • Taurine 500 mg twice daily Protects against glutamine overstimulation
  • Theanine 200 mg daily Enhances and increases GABA
  • Vitamin D3 5000 IU daily Most active form of D3
  • Vitamin D 10,000 IU daily Helps with balance

By NateMcNabb Posted in Home

Can the damaged brain repair itself?

Siddharthan Chandran
TED Talks

After a traumatic brain injury, it sometimes happens that the brain can repair itself, building new brain cells to replace damaged ones. But the repair doesn’t happen quickly enough to allow recovery from degenerative conditions like motor neuron disease (also known as Lou Gehrig’s disease or ALS).

Siddharthan Chandran walks through some new techniques using special stem cells that could allow the damaged brain to rebuild faster.

By NateMcNabb Posted in Facts

The Wahls Diet

Terry suggests eating the following organically grown produce and meats, everyday.

DR. TERRY WAHLS WITH HER SIGNATURE KALE AT NEW PI!

DR. TERRY WAHLS WITH HER SIGNATURE KALE AT NEW PI!

3 cups of green leaves (Provides minerals, vitamins B, A, C, and K)

  • Lettuce, watercress, kale, cooked greens, parsley, etc

3 cups of sulphur rich vegetables (Rich in sulphur)

  • Cabbage, Cauliflower, Broccoli, Turnips, Kale
  • Raw onions, leaks, chives, mushrooms, asparagus, garlic

3 cups of bright colour food (Flavonoids and polyphenols)

  • Beets, carrots, red cabbage, peppers
  • Berries and brightly colour fruits

Grass feed meat or wild fish (Omega 3 Fatty Acids)

  • Salmon, hearing, sardines, mackerel, tuna, cod, flounder, grouper, green- shell mussels
  • Grass feed meat

Organ meat
Seaweed

Keep your eyes peeled for her book –  The Wahls Protocol