I have nothing to sell you but hope, and that I give you for free.

[Last names, email addresses and identifying information has been removed.]

On Fri, Nov 20, 2009: [EDIT NOTE:  NEED TO ADD LINKS TO PEOPLE, DISEASES, AND SITES REFERENCED]

    Dear Friend,
    
    I consider you a friend since you so freely share all your hard work. I too care for my Mom. She has dementia accompanied by Parkinson's like symptoms and severe chronic pain in her legs and back. My Mom, Edith or Edie, is 87 years old.
    
    I have carefully studied your website and the many others you refer to. Your list saved me a great deal of time. We have tried everything except maybe brocolli spouts and various drugs you listed. Drugs used for my Mom's severe reaction to gluten, Celiac disease, and the malnutrition that occurs with a damaged digestive system, in my opinion was the start of her problems. We had fixed her diet etc, but she was still wasting away, being able to move less and less, and becoming incoherent. I was desperate to stop her pain and at least keep her stable.
    
    I started reading books and websites by doctors who have reported success with dementia and chronic pain. Dr. Dharma Singh Khalsa MD wrote the Pain Cure and Brain Longevity. From Dr.Khalsa, I learned about using piracetem and other nootropics to strengthen the brain to deal with pain. The many nutrients he also mentions we had already tried and they just helped a little. The nootropics seem to help with pain (Selepryl, huperzine, vinpocetine and piracetam.)
    
    From Brainrecovery.com, Dr. Pearlmutter I learned about using whey shakes with added nutrients to nourish the brain. Whey contains many important amino acids. And finally from Neuroassist.com, Dr. Marty Hinz, amino acid repletion helps the body replenish neurotransmitters in the brain. On the left side of the web page scroll down to the technical guide and peruse the first 10 pages or so. Technical guide is for doctors who implement the protocol is 82 pages. It is not difficult to read. Dr. Hinz has patients take 3 amino acids in capsule form which the brain uses to produce neurotransmitters. There are 3 levels, at each level the dosage increases. He lists success with Alzheimers, see links on the web page.
    
    My mom cannot swallow pills.So I combined the ideas of all the doctors. I figured out the amount of amino acids in the whey shake, then added additonal powders of amino acids to get the dosages Dr.Hinz uses.  You can buy bulk powder of many nutrients at Purebulk.com. (They also have water soluble cinnamon extract.) I also add a liquid multiple vitamin, coenzyme Q liquid, aloe, methylene blue, cinnamon and other nutients. The whey and flavor is very good at hiding the taste of everything. I will send you the full list if you like later. There is nothing special about the whey protein except I buy it with out artificial sweetners, usually just stevia and flavors. My mother can not tolerate coconut oil, so I make the shakes with coconut milk from Wilderness Family Naturals.
    
    We started the amino acid protocol on September 25, 2009. I have been giving her the highest dosage since October 9, 2009. My Mom is back. You can talk with her and thank G-d the screaming has subsided. She just used to scream in pain. Even the strongest drugs and painkillers did not help. Her pain seems to be less as well. She sleeps 2 hours at a stretch at night. Then she needs the bathroom. A huge improvement. Before she was hardly sleeping at all. The coconut milk and the whey improved her nutritional status and her ability to chew and swallow seems to be improving. She had skin ulcers all over and skin breakage, which is now healing.
    
    I am very tired today, we had a bad night. A snowstorm is brewing, causes her pain to flare up. But I wanted to share this with you ASAP so you could read about it. My mom's improvement has been amazing in such a short time. All the other nutrients helped somewhat but the amino acid repletion is like magic fuel for the brain. The best part it is also relatively cost effective.
    
    I found the Neuroassist website on a Parkinson's forum. Someone asked if anyone had tried this. They never received an answer, but I took the time to look into it. It must have been a hint sent by an angel.
    
    Thanks again for your website, E--

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On January 4, 2010:

Sorry for disappearing, Mom died earlier this month. There was a great deal to take care of ....
If you have any questions, send a message.
 
 Morning
Coconut Milk Protein Shake
1 softgel Super Booster (Life Extension)
1 10 mg Vinpocetine tablet
1 50 mcg Huperzine tablet
1 Synaptine Ultra capsule
 
Afternoon  ~4pm
Coconut Milk Protein Shake
1 Curcumin capsule (Life Extension)
1 10 mg Vinpocetine tablet
1 50 mcg Huperzine tablet
1 Synaptine Ultra capsule
 
Evening ~7pm
Coconut Milk Protein Shake
 
Before Going to sleep
5000 IU Vitamin D3 lozenge
3 mg Melatonin lozenge later in the evening if needed
 
Important Note: When the amino acid protocol from www.neuroassist.com was added to the whey shake, it really seemed to help calm, improve mood and sleep and reduce  pain.  On the left side of the neuroassist web page is a link to the Technical Guide, the dosage levels for the amino acids (cysteine, tyrosine, 5-hydroxytryptophan and Dopa Mucuna for Parkinson's) are on page 9. The shakes contain a Level 1 dose of amino acids. (Note: Dopa Mucuna only needed for treatment of obesity, Parkinsonism or Restless Legs Syndrome.)
MIx the powdered ingredients up in small containers ahead of time to make it easier to make shakes. The   The cysteine powder tastes bitter so it is necessary to add sweetener to the shake to help make it palatable. Shakes can also be prepared in a blender and add fruit, blueberries, strawberries etc.

Morning Shake
4 oz coconut milk 1 scoop vanilla or chocolate whey
1 drop 1% methylene blue solution
1 tablespoon Coenzyme Q and L-Carnitine liquid, 100 mg CoQ10, 1000mg L-Carnitine
1 tablespoon Whole Leaf Aloe Concentrate
1 tablespoon Liquid Multivitamin (Peter Gillham's Natural Vitality)
1 dropper NuNaturals cinnamon extract
1 teaspoon agave or stevia to taste
AM powder container: All the bulk powders from purebulk.com
     1/4 teaspooon taurine (~900 mg)       1/2 teaspoon cysteine (~1800 mg)
     1/8 teaspoon glucosamine (~500mg)  3/4 teaspoon tyrosine (~ 1500mg)
     1/2 teaspoon chia seeds     
      Opened capsules, 1 capsule B Right (B complex by Jarrow), 1, 100 mg 5-Hydroxy Tryptophan capsule  and 1, 400 mg capsule Dopa Mucuna (15 % L-Dopa from NOW)
Add 1 oz hot water so the shake is not so cold. (In summer cool water was added). Put in a shaker cup mix well.

Afternoon Shake was the same as the morning except no B Right Capsule was added and 2,100 mg capulses of 5-Hydroxy Tryptophan were added to the powder
 
Evening Shake
3 oz coconut milk
1 tsp agave or a few drops stevia
1/2 scoop whey powder
1/4 teaspoon cysteine (900 mg)
Open capsules  2 capsules Bone Restore (Life Extension)
Add 1oz water shake well

[Note:  There is always something else that can go wrong.  Dementia and neurodegenerative diseases are not the only monsters lurking in the dark.]

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On Tue, Aug 14, 2012 at 1:41 PM, J... S... C... wrote:

    Hi from Cincinnati,

    Since the way you put your e-mail address on your Web pages (I'm sure to deter spam), I'm not quite sure if this will work, but I'll give it a try.

    My husband was just diagnosed with CBD, so of course, the first thing I did was a Google search for "corticobasal degeneration nutrition" and several of your pages were the first that turned up.  Given his past medical history, I'm especially intrigued by the possibilities suggested by the mitochondrial-sugar-metabolism-problem hypothesis.

    ... more thoughts & ideas, but I want to make sure this gets to you before I spend a lot more time typing...

    J. S. C.

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On Tue, Oct 16, 2012 at 1:39 AM, patricia wrote:

    I just wanted to thank you for putting together so many links and with so many good scientific citations...I'm so sorry for your loss and I tear up reading about it because I am starting to know all too much about what you went through.

    I'm 44, my mother is 68, a life-long self-educator, avid reader with a sharp and active mind...I won't go into all the long and sad details of her decline and what unfortunate medical decisions and misinformation I suspect may be contributing factors, over the last 10 or more years, but as of last month we were finally presented with a 'diagnosis' of PSP, and, as you well know, the 'not much can be done' judgement.

    As our family's designated 'black sheep, hippie, etc.' and a professional librarian I of course can't accept the 'not much can be done' slow death sentence from the medical establishment, so I went looking online in sources establishment and otherwise, and was initially very worried when I didn't even find much hope in the more alternative corners of the internet...

    ...until I came across your collection. You've given my sister and I a lot of things to research further, to try, to ask my mother's doctors about. Many of them I'm already familiar with for their larger health benefits (like curcumin, cinnamon, garlic, etc.) I'm a firm believer in the 'do no harm' approach, and in the softer, food/supplement approach to illness in general--STOP putting in the bad stuff, start putting in MORE good stuff, right? Whether that be food, or physical and mental exercises, etc.

    I'm under no illusion that I'll find some magic silver bullet in a tea or herb or oil, but I also believe that anything which helps, will *help* and that IS the point, after all: to make the most of what you can, while you can. Fortunately for us, my mother is open to 'alternative' ideas, so if nothing else, she appreciates that we are care and we are trying.

    I'm so sorry that you feel your efforts were too late for your own mother, but I'm sure she would be happy to know that you've done what you can to share what you tried, to help others like her, to help other families like mine.

    In all things, the best we can do is to make the best decisions we can with the information available to us at the time. We aren't responsible for what we did not know to do or try. I hope you have found some peace with that, by now. You *did* try, you did *not* give up. And you have no way of knowing how many strangers may benefit from your work.

    You've done a very good thing, leaving your research and links up for people like me...your page and the pages you link to, are just about the *only* empowering information I've found so far on the whole stupid internet for PSP and related tauopathies. I can't thank you enough for at least giving us some ideas, some simple things we can try.

    Thank you again, and may peace be with you.

    -Patricia (on behalf of my own mother, Marilyn, and our family)


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You can reach me by mai|ing to "perpetualcommotion.com", at gmail dot com.

Updated: January 7, 2010
Inception: November 27, 2009