I have more questions to ask of those who know so much more than I.

My husband has started creatine (4 weeks), OMEGA 3 EPA (3 weeks), Trehalose (1 week), and I finally convinced him to add Vit E in the last few days.

Over the holidays I really notice tremours in his right hand and involuntary movements of his right arm.

So my question is really about the supplements.

Do supplements reduce symptoms once they have started or just hopefully slow down the speed at which they present themselves?

What period of time does a person take the supplements before they notice a difference?

What should we look to add next to his supplement list? Any suggestions?

Many thanks for your help again.

Concerned

Concerned,

I would not think that any of those supplements could worsen your husband's movements. It could have been the general holiday stress.

I can only offer my experience - everyone reacts differently to supplements. I'm gene positive, CAG 40, with no symptoms at age 61. I began taking supplements after I tested. About 6 months after that I suddenly noticed that my driving seemed better. My memory seemed to have improved, my mind seemed clearer and my overall attitude towards life seemed better.

That could have been a reversal of early soft symptoms or just better brain health. There's no way of telling, but the changes were real.

I would add wild blueberry concentrate to his supplements. That has shown a positive effect in tests with the HD mice. If I recall properly, mice fed the equivalent of a cup a day for humans did not develop symptoms. Many folks get theirs from www.brownwoodacres.com Two tablespoons of the concentrate equal one cup of berries, so it's easy to take.

Will B.

Will,

Again, many thanks for your quick response. I am going to call brownacres to see if they will ship to Canada.

I have been trying to track down a supplier for concentrate and in the meantime have been trying to get him to eat 1 cup/day of blueberries.

I did find some info on Anthrocyanins on the HD lighhouse and also in an Extension Paper out of the University of Kentucky. Other foods high in Anthrocyanins are cherries, concord grapes, chokeberries, black currents, blackberries. We have dubbed it the "Blue, Black & Purple Diet.

Have you heard of Walnut Concentrate?

C.

I would also add Vit C, it's a powerful anti-oxidant. Also, turmeric, it has a heat-shock response. I also like to have some cinnamon and ginger each day for the heat shock response.

I've never heard of walnut concentrate, although I do take Brownwood Acres pomegranate concentrate also. It's got all sorts of good stuff in it. I would think Brownwood ships to Canada - they're located in Michigan, if I recall.

My wife jokes that it takes me longer to take my morning supplements than it takes most folks to eat breakfast.

Will

For supplements that directly affect nerve cells, you might research theanine, magnesium and potassium.

I just found a message thread from last summer on vitamins, a great list. Makes me wish I knew so much more about nutrition, minerals and vitamins

What are theanine, magnesium and potassium suppose to be doing for HD brains?

I know Will also takes Choline (Lethicin), how does that work?

C.

Will,

Thanks for the tip on Brownswood, I phoned them and placed an order for Blueberry concentrate. The woman was very nice.

Why do you take pomegranate juice? What is in it that you feel is beneficial? And the same question about the choline. Is choline lethicine?

I was also thinking of Concord Grape Juice concentrate if I can't find the Black Current concentrate.

Can't thank you enough for your help these last few weeks.

C.

Will,

I started taking the suppliments along with my husband, everything so far except the creatine.. Wow its is a lot of pills to pop and they sit right in your stomach...

I am wondering about Soy Lethicin, which it says on the bottle is Choline. Should he be taking this and if so how much?

I have encorporated juices into his diet, as before he drank fruit punch.. We have, 100% apple, grape, blue berry with pomagrant ... You can only drink so much. Is one type of juice better than another for him?

Thanks, Edwina

For the most part an anti-oxidant is an anti-oxidant whether it comes from pomegranates, blueberries, pills or potions. Anti-oxidants clean up the mess left by the defects in metabolism characteristic of HD, limiting but not eliminating the damage from so-called reactive oxygen species. In this sense anti-oxidants are reactive rather than proactive and there will always be some damage regardless of the level of anti-oxidant. Further there is only so much room in the cell for anti-oxidants and at some point more is no longer better and the anti-oxidant mechanism becomes saturated.

Different anti-oxidants, however, are active in different compartments of the body. Some are active in the lipid phase, others in the aqueous phase, and some even in both. Within the cell, some are active in the cytoplasm, some in the nucleus, some in the mitochondria, and others cannot enter the cell at all. Some can cross the blood-brain barrier, others cannot. Some are destroyed by digestion. Some are destroyed as they perform their task, others can be regenerated. Some can regenerate other anti-oxidant species. For these reasons it makes sense to supplement with a wide variety of anti-oxidant types. Also many of the body's natural anti-oxidants are produced by the body and one might want to supplement the nutrients required for their generation as well.

The value of blueberries, however, goes beyond their antioxidant properties. Blueberries also contain anthocyanins which promote neurogenesis and they also boost a heat shock protein which helps with protein folding (which is impaired in HD) and which is known to decline with aging. Of course this is animal data, not human data, but blueberries seem like a good food choice to me for these reasons.

Theanine is an amino acid found in green tea. It can cross the blood-brain barrier and is thought to inhibit the glutamate excitotoxicity that causes damage to HD brains.

Magnesium and potassium are electrolytes (salts) than participate in all nerve and muscle processes and are often deficient in modern diets. Magnesium also directly participates in the action of the NMDA receptor and its deficiency would likely exacerbate glutamate excitotoxicity.

I am wondering is there a list anywhere with what suppliments are best to take and the amounts??? Also I noticed that our mulivitamin has iron in it. Should a mulivitamin with iron be taken.?

Blueberry juice , concentrates , gel caps , etc. are all in Can. If you get a better price somewhere that is great . But , don't overlook , frozen blueberries at the grocery store , dried blueberries at bulk barns . Frozen blueberries keep their nutritional value as good as fresh . db

The big challenge I am facing with diet and supplements is that my hubby travels weekly out of the country (to the USA) for work. So he is crossing the border twice a week.

Although I can keep a well stocked fridge and freezer, making sure he has the right stuff with him all the time is more of a logistical issue. I think I am going to try dried fruit and concentrate in a Nalgene bottle. I am also going to send him with his own box of green tea.

Just as an example, this week he left home at 5:30 am for the airport, experienced flight delays, didn't arrive at his work destination until 4:30 pm, and his luggage with the supplements arrived at the hotel some time late that evening.

Thank you for all of your help, I am learning so much.

C

Pomegranate Juice has a wide range of benefits. Google "Benefits of Pomegranate Juice" and you'll find them. Choline acts like a lubricant for the nervous system, including the brain. I use TwinLab's version. I think the daily dose is 350mg.

C - It's going to take creativity with your husband's travel schedule. You don't want to arouse suspicions at airports with vials of white powder and such. If he travels to the same places, maybe you could have him pre-position supplements in an office fridge, for example.

Will

my husband just started using trehalose and creatine and we've been trying to find a store that sells both together so we can stock up. we live in clearwater fl. could u help us on how to get both in one package shipment or at least direct us in the right area to buy both suppliments. my husband's cag is 41 just like his dads.

Raquel

Raquel,

Try amazon.com I switched to them for trehalose when Brooklyn Premium's website stopped working. Search for trehalose and the Swanson product. They also have creatine monohydrate. Search for that and you'll find a wide variety. Make sure you get pure creatine monohydrate, not "creatine powder", which may not be pure creatine. They also have several varieties of micronized creatine, which dissolves better.

Will

I have a pHd family member who takes creatine and other supplements along with meds. But no at-risk members are taking them as far as I know. Are the supplements strongly suggested for those living at-risk? If so, are there specific ones I should take?

Bella

Bella,

I take a comprehensive supplement regimen because I'm gene positive, but still without symptoms at age 66. If you're at risk and don't have the gene, you could be wasting a lot of money and you might harm yourself. There are few side effects to my supplements, but they're not sompletely free of them.

If you want to take them for general health, a multivitamin. fish oil, blueberry concentrate, vitamins E and C and calcium would be good for anyone. Remember I'm not a doctor - you should see yours for supplement recomendations for you.

Will