Re: C/ Antioxidants/Diet. To Jen et al

[Guest guest]

I have no problem with taking antioxidants and changing my eating habits

(I've already made some changes and have been taking antioxidants for years,

although not in the high doses recommended), but walking for an hour is a

totally

different story. I use a walker for short distances (like from the car to the

house or restaurant), but can't manage more than a few yards. I do water

exercises three times a week for an hour, and try to get on the exercise

machines at

the YMCA twice a week (but don't always get there). When I do, I exercise my

arms and legs, and use the recumbent bike for about 10 minutes. That's

getting harder and harder to do.

Any other ideas for exercise?

edith

[Guest guest]

Hi Ronnie:

Thanks for the input, I'll make note of the vitamins you mentioned and add

them to my list. Hope you do well at getting back on your program when you

decide to. Thanks again & all the best for now.

Jen

-- C/ Antioxidants/Diet. To Jen et al

and Jen,

I wanted to jump in on your previous posts about diet and supplements. I

have written some of this before but for all the new folks I'm sure it's

worth repeating.

When newly diagnosed, still scared to death and having the feeling of

getting no help from any of the doctors I had seen I turned to an ad that

kept appearing in the newspaper: Wellness and Weight Management. Free

Consultation. Well, it was free so what did I have to lose? I think it is

one of the smartest things I ever did.

The program was lifestyle changes. Learning to eat healthy and doing

sensible exercise. Walking was the aerobic exercise of choice. The program

was so sensible, nothing outrageous, no " special " food, nothing even

bordering on fad diets or exercise. Good, common sense stuff.

Eat the same food you have always eaten but with modifications. Cut out

most fat and as much simple sugar as possible. Eat every two and 1/2 to

three hours. NEVER STUFFED; NEVER HUNGRY. Eight to ten glasses of water a

day. Walk at least 30 minutes a day, preferably an hour. (with my draggy

leg 4 trips around the local school track at 23 minutes was the best I could

manage, but I never missed a day) The program was set for 2 pounds a week

weight loss and did not encourage more. Once we got to eating right and

doing the walking we were introduced to vitimins. These weren't required,

but encouraged as part of the wellness plan. For years I was taking 2

multi-vitimin, 1 High B60, 2-1000 mg

vitimin C, 2 calcium w/potassium, 1 pantothenic acid three times a day plus

once a day 1 vitimin E and 1 Beta Carotine. Seems there was something else

but I can't remember. I paid to stay in the program for over three years.

It was expensive. I decided after three years if I hadn't learned by now

how to eat I never would. In the first nine months I lost 91 pounds (had a

weight loss every week), went down a size with every 10 pounds, enjoyed the

food I was eating, had more energy than I had ever had before PLS (sugar is

a real killer) could lift that ole' draggy leg about 8 inches higher than

before I started the program and had the world by the tail. Then I chipped

a bone in my knee, was laid up for 51 days, feeling sorry for myself I ate

all the comfort food folks brought me and this is the truth--I gained back

35 pounds in those 51 days--beginning of the end. I kept thinking I'd get

back on track as soon as------well I'm still trying to get back on track but

I honestly believe that those three years are what have kept me to where I

am today. I was diagnosed in April of 1990 and started that program in July

of the same year. I was told by the instructor that my body was equipped to

heal itself but it was up to me to provide the means for it to do so. Given

the knowledge I now have about PLS I don't know if I could heal myself or

not but I do know that what I did on that program was great. At that time I

came across something in one of the recipe/wellness books I was reading. I

can't quote it exactly but it boiled done to this: While a healthy diet and

exercise program will not in all cases help or cure any given ailment (PLS)

it will in every case make YOU a healthier person overall which in turn will

make your ailment (PLS) easier to deal with. It's got my vote. Now if I

could just quit procastinating and get back on the stick!

Eat healthy and get your exercise!

Ronnie

Antioxidants/Diet. To Jen et al

> 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

>

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