Re: Re: Nutritional advise needed

December 4, 2007

Yes, please! I usually have less than half an hour per meal, so softer foods

are much easier to shovel in. =P

In a message dated 12/4/2007 6:07:26 P.M. Eastern Standard Time,

alrt@... writes:

I know how to

make the food soft enough for my SMA " gimp-swallow " and how to keep

my protein amounts high. If anyone wants ideas or recipes, let me

know. I'm sure Moss would be happy to share also.

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December 4, 2007

Hey Alana,

I would definitely be interested in soft vegan recipes. I am vegetarian

already but would like to more toward vegan and even raw food if I could

find enough soft or blendable foods to live on!

On 12/4/07 5:07 PM, " Alana " <alrt@...> wrote:

> I've been using the USDA Food Pyramid Tracker to help me figure out

> how to get the best nutrition for the calories I take in. I'm eating

> between 700 and 1000 calories a day and work hard to get enough iron

> (I'm anemic) and potassium (helps reduce water retention). It's

> helped me make better food choices.

>

> My weight is 53 lbs. and it doesn't fluctuate much since I've been

> properly ventilated. I think when we SMA folks work to figure out

> what our caloric intake should be, whether it's to lose, maintain, or

> gain weight, we should factor in how hard we're working to breathe.

> When I had pneumonia, despite eating okay and having TPN I.V., I lost

> 20 lbs. in 3 weeks. When I got my daytime ventilator I gained 5 lbs.

> immediately. As far as I can tell, there are no caloric guidelines

> that address energy burned with compromised breathing or working hard

> to keep one's balance or crawl an arm across a table to reach

> something. For me, I work up a sweat doing these activities.

>

> Another thought that might work for some people who want to lose

> weight. I have yet to meet a cubby vegan, and I know more than 30.

> This kind of diet may not work for picky eaters, but it can for

> adventurous and curious eaters. I was a vegan for 2 1/2 years and

> now employ 2 vegan attendants who are fantastic cooks. I know how to

> make the food soft enough for my SMA " gimp-swallow " and how to keep

> my protein amounts high. If anyone wants ideas or recipes, let me

> know. I'm sure Moss would be happy to share also.

>

> Alana

>

December 4, 2007

For anyone who is concerned with nutrition, I would like to recommend Juice

Plus. I have been a Juice Plus rep. for 4 years. Juice Plus is not a juice or

vitamin. It is whole food in capsule, chewable, gummie and protein shake form.

It sounds as though we have several vegetarians in our group. If anyone is

interested in learning how to acquire more fresh, raw fruits, veggies and grain

in their diet, please E-mail me directly. JP provides dense nutrition without

the sugar. I would also love to acquire some of your creative vegan recipes.

Thanks!

Peace,

Beth

mbc543@...

Re: Nutritional advise needed

This is a confusing area for me as well. I have just recently lost

around 15lbs. Maybe that is a bad thing I don't know. However, I am

functioning better. I do not think I am necessarily doing better if

that makes any sense. It sounds like you eat pretty healthy from your

other posts. I eat fruits, veggies, whole yucky grains and lean but

mostly red meat. I also take a multi vitamin and calcium supplements.

I would not follow a guideline for able-bodied individuals because

of the lack of muscle mass. As far as calorie intake, have you looked

at the FSMA sight under medical guidelines. There is info about

nutrition by Dr Swoboda from the 2004 conference. It is geared for

children but I wonder if the calorie/weight formula could be used for

an adult as well.

Suzanne

>

> I went online, and using the -Benedict equation, determined my

> base caloric needs in a day to just " lay in bed and breathe " are 1272

> calories. I didn't even bother multiplying this by the " activity

> level " coefficient or account for the thermodynamic effect of food.

> But I'm currently trying to eat 700 calories a day or less. My

> doctor said 800 calories, but assumed he meant to not gain more

> weight. Am I harming my body by eating 572 less calories in a day

> than I supposedly need to stay alive? Or is that 1272 calorie total

> skewed by the fact I'm disabled and have low muscle mass? I'm so

> confused right now I could cry!

>

> Jenn Malatesta

> nekrosys@...

> nekrosys.net

>

December 5, 2007

That's what I was thinking as well. Since our muscle mass is so

different from other adults without SMA I have no idea how to tailor

caloric need formulas to fit my needs. I looked on the FSMA site a

bit, but I'm not sure how to apply the children's nutritional

guidelines to me either. If I read it correctly, that'd mean I'd

need like 100 g of protein a day, which seems kind of extreme. I

almost think I need to meet with a licensed nutritionist, but I'm not

even sure I could find one that would know enough about SMA.

On Dec 4, 2007, at 5:35 PM, su_ma_la wrote:

> I would not follow a guideline for able-bodied individuals because

> of the lack of muscle mass. As far as calorie intake, have you looked

> at the FSMA sight under medical guidelines. There is info about

> nutrition by Dr Swoboda from the 2004 conference. It is geared for

> children but I wonder if the calorie/weight formula could be used for

> an adult as well.

Jenn Malatesta

nekrosys@...

nekrosys.net

December 5, 2007

> I've been using the USDA Food Pyramid Tracker to help me figure out

> how to get the best nutrition for the calories I take in.

Thanks to my husband, my whole family does a really good job of

getting the right nutrition. We have veggies and salad with dinner

every night. (Thanks to our food processor, I can actually eat

salad!) Since starting my " ascetic " diet I don't use butter any more

or even salad dressing. The last week, I bet I've averaged around

700 calories a day. I think it's a little too low because I'm

starting to feel really run down. I'm guessing my doctor's 800

calorie figure was for dieting now.

> As far as I can tell, there are no caloric guidelines

> that address energy burned with compromised breathing or working hard

> to keep one's balance or crawl an arm across a table to reach

> something. For me, I work up a sweat doing these activities.

I know, this makes things so hard. When I try to do isometrics with

my legs, I have no idea how many calories this burns if any. I'm

guessing just typing and stuff burns calories but who knows if that's

more or less for someone with SMA?

> Another thought that might work for some people who want to lose

> weight. I have yet to meet a cubby vegan, and I know more than 30.

I am vegan for about half the year because of religious reasons. We

are currently in the 40 day vegan fast before Christmas. We have one

long fast like this before Easter, and a couple shorter ones in the

summer. Plus every Wednesday and Friday. I think I'm having an

easier time staying low in calories right now because of the fast,

but at the same time I always feel really protein deprived no matter

how many beans and nuts I eat.

My entire family would appreciate some new vegan recipes to try out

though! Please email me as many as you can.

Jenn Malatesta

nekrosys@...

nekrosys.net

December 5, 2007

Using a food processor to ground up tougher things like salad and raw

veggies has been a indispensable for me.

On Dec 4, 2007, at 9:05 PM, blueyedaze@... wrote:

> Yes, please! I usually have less than half an hour per meal, so

> softer foods

> are much easier to shovel in. =P

Jenn Malatesta

nekrosys@...

nekrosys.net

December 5, 2007

My nutritionist said I need 27g of protein a day... so

yeah, the 100 is way off!

--- Malatesta <nekrosys@...> wrote:

> That's what I was thinking as well. Since our

> muscle mass is so

> different from other adults without SMA I have no

> idea how to tailor

> caloric need formulas to fit my needs. I looked on

> the FSMA site a

> bit, but I'm not sure how to apply the children's

> nutritional

> guidelines to me either. If I read it correctly,

> that'd mean I'd

> need like 100 g of protein a day, which seems kind

> of extreme. I

> almost think I need to meet with a licensed

> nutritionist, but I'm not

> even sure I could find one that would know enough

> about SMA.

>

> On Dec 4, 2007, at 5:35 PM, su_ma_la wrote:

>

> > I would not follow a guideline for able-bodied

> individuals because

> > of the lack of muscle mass. As far as calorie

> intake, have you looked

> > at the FSMA sight under medical guidelines. There

> is info about

> > nutrition by Dr Swoboda from the 2004 conference.

> It is geared for

> > children but I wonder if the calorie/weight

> formula could be used for

> > an adult as well.

>

> Jenn Malatesta

> nekrosys@...

> nekrosys.net

>

> [Non-text portions of this message have been

> removed]

>

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December 5, 2007

Hey Jenn

Have you tried taking an amino acid suppliment? I think that might take care of

that need for protein that you're feeling. If capsules are an issue there is a

juice-box type drink that I've heard is really good. It's a little pricey, but

might be worth it to you. It's called EO28 splash and it's made by the same

company that makes neocate.

Love and Hugs

Jeni