Antioxidants/Diet. To Jen et al

[Guest guest]

Hi Jen,

Yep, know how you feel in most respects but must admit that I have been

fortunate in that I rarely seem to suffer the mind numbing fatigue that

you and most others speak about and for that I am eternally grateful.

Am also lucky that a few years before my symptoms began I changed

careers from high school teacher (math/computing) to computer programmer

which basically only requires my brain to work (ha! ha!) so I am still

able to work. The lack of speech is a surmountable problem in that

occupation.

When I was diagnosed back in 1993 I could find very little about PLS and

because my neuro said that it was like MS, in the absence of anything

better I started reading books on people who had stabilised or even

reversed their MS. A common theme seemed to be diet so I started to

clean up my diet which had previously conformed to the aptly termed SAD

acronym (Standard Australian/American Diet) i.e. a lot of crap.

For about 18 months I stuck fairly rigorously (though not 100%) to a

gluten free diet but then as that was hard wound it back to basically a

no saturated fats, no sugar diet. After about 3 years I felt that my

rate of progression was very gradually slowing, but was still way too

fast. It was also around that time that I started regularly ordering

and eating primarily organic food.

About six months after that Steve Shackel, who I had been regularly

communicating with, had the beginnings of his website in place and that

inspired me to begin a rigorous regimen of antioxidants. Previous to

that I had taken vit C and vit E sporadically but never continuously. I

expanded the range to include some I couldn't find here in Australia so

started ordering them online from the U.S..

About six months taking all antioxidants my deterioration stopped and I

have basically not progressed in about 5 years, a big change after my

initial rate of progression, and I feel sure that is mainly due to the

antioxidants. At the moment, each day I take:

NAC (n-acetyl-cysteine) 2 x 500mg

alpha lipoic acid 2 x 100mg

CoQ10 2 x 30mg

Vit E (mixed tocopherol - apparently better than just d-alpha formula) 2

x 1000 IU

Vit C with grape seed extract 1 x ??

melatonin 2 x 3mg

Vit B 1 x ??

Fish oil/EPA 4 x 1000mg for the last year or so.

I also take 4 Liv-Pro (St 's thistle) tablets as a liver cleanser as

some things I read implicated the liver in PLS/ALS - figured it can't

hurt to take it. For most of this year I have taken a couple of

teaspoons of powdered Barley Green and have also been taking creatine

most days for a couple of years. Every month or two I have a Vit B12

injection (my wife learnt how to give them to me - simple). I feel sure

that the halt in my progression is due to the antioxidants but of course

can't prove that.

For a year or more now I have allowed myself a couple of cups of coffee

per day and most of the time have a couple of chocolate biscuits with

them (using myself as a bit of a guinea pig) and it doesn't seem to be

affecting anything. My theory is that the previous years of healthy

diet and antioxidants cleaned my body out and that the antioxidants and

organic fruit still counterbalance the occasional forays into less than

healthy eating.

Hope that helps. :-)

jen wrote:

> :

>

> Your message did indeed make me sit up! I too began symptoms at an early

> age (39) and now after five years have progressed quite rapidly. I have

> gone from a career that I loved to now trying to survive on disability

> benefits. Before PLS set in I was extremely active physically and now

> am at

> times hardly able to get around even with the use of aids, i.e. gone from

> using a cane, then a 4-wheeled walker and likely soon a wheelchair. My

> ex-husband 'chose' to leave for other interests shortly after my symptoms

> began so I moved on as best as possible (the last reason I mention this is

> with the intent of soliciting pity, it is rather merely fact). My

> children

> (at onset aged 11 and 15) have gone from having a mother who was extremely

> involved in their lives, activities, friends to now having a mother who is

> almost an invalid. Most recently my speech has been affected to the

> point I

> m no longer understandable which, particularly when trying to raise teens,

> is probably the most troublesome symptom so far.

>

> I am relatively new to PLS Friends having discovered it only about a year

> ago. Although I now read posts regularly, it is rare for me to actually

> post anymore mainly because I simply don't have the energy to respond to

> comments advising me to 'simply get on with my life and be positive in

> doing

> so'. I have found this only proves harmful to my 'attempts' at staying

> relatively positive in that I'm left feeling somewhat inadequate. While I

> do 'try' to continue a somewhat 'normal' lifestyle and try to be as

> positive

> as possible, there are definitely days and perhaps even weeks that I'm

> just

> not able to with the sense of loss and grief at times being overwhelming.

> This condition has affected my life to such a degree that just getting

> through the 'basics' day to day is a small victory to say the least.

>

> While I do try to accept other's opinions regarding their condition

> and how

> they manage it, I do RESENT when others do not try to afford the same

> respect. Trying to compare the faster form of PLS to the slower form is

> impossible and I believe slightly cruel, it seems somewhat like trying to

> compare a sunburn to terminal skin cancer and 'treat' them both in the

> same

> manner.

>

> We all have our own opinion on how to best 'manage' our conditions but

> that

> is just what they are, our own opinions. Accepting that and recognizing

> other's opinions is just common courtesy. This said, at times I'm

> sure most

> of us may post in 'haste' and perhaps regret doing so afterwards, I know I

> have.

>

> I'm a relative newcomer here compared to many but I would hope that if you

> are reading this Rita you would reconsider your decision. I have

> found some

> of your messages very helpful. It would also be a shame for you to

> deprive

> yourself of the support of this group regardless of how slowly your

> condition is progressing.

>

> This is much longer than I'd meant... today is like most where I've little

> energy and if parts of this aren't clear or are offensive I apologize

> ahead

> of time.

>

> P.S. I wonder if you would please provide more details on your 'diet

> and antioxidants' you refer to? I am very interested in anything that may

> slow this progression. Thank you.

>

> Jen L.

>

--

.

,-._|\ Covington

/ Oz \

\_,--.x/

v