POWER JUICE

Rationale

‘Power Juice’ is taken from a recipe by Brad and Maxine Fisher, whose daughter, Shira, has SMA type 1. They follow an amino acid diet using vivonex. You can discuss with a dietician and/or doctor/neurologist whether the person with leukodystrophy would benefit or not from such a diet.

This recipe is the special ‘juice’ they add to Shira’s vivonex. Again a doctor or dietician or nutritionist can recommend amounts of different ingredients. The juice provides lots of fibre, a wide range vitamins and minerals as well as beneficial fatty acids, slow energy release and a good balance of sodium and potassium. The last of these can help prevent heart disease.

Because it is (mostly) raw, rather than unpasteurised (fruit juice is pasteurised too, like milk), the nutrients aren’t degraded. The resulting juice is therefore full of natural beneficial chemicals such as active enzymes (which are destroyed by heat), which can apparently really help digestion, possibly making the person with leukodystrophy less ‘sicky’ or reducing reflux.

Aside from this a good complement of natural nutrients, as well as probiotics, may help to dramatically reduce infections.

Foods used by the Fishers (check with doctor/dietician if possible):

Apples
Pears
Celery
Spinach
Avocado
Banana
Cooked yam (not sweet potato – sweet potatoes are orange inside – yams are white)
Organic, shop bought undiluted prune juice

Equipment

Juicer – preferably electric
Blender
Medium-fine strainer/sieve (some pulp getting through will be more nutricious)
Optional – grater (may help to blend the mixture better to grate it first)
Glass jars with lids

To Make:

Cut up all fruit to be juiced into small places

Place fruit and spinach in juicer and juice. If need be blend after juicing

Pour through strainer to take out large lumps that won’t go through a feeding tube.

Some sediment will still remain but this is fibre and is good.

Get the yam, wash and scrub it clean. Peel it and cut it into slices or chunks,

Boil the yam chunks until they are soft. Allow it to cool a little so it is not piping hot.

Open the avocado, scoop out the inside, and cut into chunks.

Add the yam chunks, along with the avocado to the juice, add prune juice, some water and the probiotic

Blend and strain again

Sterilise the glass jars either by boiling in water or microwaving (with the lids off!) half full of water for one minute.

Pour the mixture in to the jars, put the caps on tightly and store in the fridge for no more than four days. This can be added to tube feed or given as a supplemental drink.

Other Suggestions for foods to add (check with doctor/dietician if possible)

Royal jelly

Kale

Quinoa

Kiwi

Spirulina

Cranberries (help reduce the likelihood of urinary tract infections)

Actimel, yakkult or another probiotic

Vitamin B12

I have just read in a personal web page that vitamin B12 is important in the formation and maintenence of myelin. This is the thing that is depleted in patients with leukodystrophy, multiple sclerosis, Charcot Marie Tooth and other diseases like these. It helps metabolise fatty acids from food to form the building blocks of myelin. It is also important for maintaining the nerves that the myelin insulates, so even if myelin is depleted, vitamin B12 is needed to make the most of what little function remains. It would certainly be worth looking for a vitamin B12 supplement to include in the person with leukodystrophy's diet (with doctor's approval preferably, of course). And don't forget to include it in your own either(!)