SELF HELP
In the past seven years, more than 4000 ALS patients in more than 50 countries have sought advice, counsel, and support from Steve Byer. The aggregated information garnered from so many reflects a level of personal knowledge that is invaluable. Some of the most inventive and successful ideas for symptom management have come from patients themselves and their families. Through this clearing house, suggestions and information can be filtered to the many patients who most need it.
With that in mind, we've added a link to The Eye Response Computer a wonderful piece of equipment for those having difficult speaking and writing.
THE BEST NUTRITIONAL SUPPLEMENT
Nestle's Carnation Instant Breakfast Drink VHC Lactose Free is a much more eficient mix of fat/carbs/protein than Ensure which is mostly cellulose filler-indigestivle carbs. VHC delivers 560 calories per 8 oz can, tastes like a good milkshake when cold, can be supplemented even more by adding chocolate syrup and pureed strawberries and bananas or any fruit flavor desired. Available online direct from Nestle and also at Amazon, CVS, Target and Walgreens.
IPHONE APPS
Thanks to a Florida family, we have the following information to share with you about iPhone Apps that provide communication assistance and exercises. Small Talk - Dysphagia (difficulty eating or swallowing) provides a vocabulary of pictures and icons that talk in a natural human voice. Small Talk - Oral Motor Exercises offers videos of strengthening exercises for mouth, tongue and lip muscles. There is a one-time charge of $19.95 for each of these. Small Talk - Aphasia (inability to speak) is free and provides a vocabulary of pictures and videos that talk in a natural human voice.
Also Included in this section is information on diet, exercise, excess phlegm and saliva and more. Updates to this material will occur on a regular basis. If you have a particular interest or concern, or have information that you feel will be beneficial to others, please let us know so that it can be included here.
Additional topics for discussion include pseudo-bulbar lability, depression, retention of excess fluids, limb rigidity and spasticity, nutritional supplements, finger extension devices, finger and toe coldness and discoloration. If you’d like to discuss any of these issues or perhaps, something unique to you, please call or email Steve Byer.
THE HANS KOCH ANGLE FLEXION DEVICE
A simple solution to an ongoing issue of dropped foot can be found, complete with photographs and a detailed description at The Koch Device. All you need is one keyholder, one steel spring and strip of double sided Velcro to fit comfortably around the ankle.
   
SAFE SLEEP AIDS
We have, for many years, recommended the use of Tylenol PM as the best sleep aid for those with ALS, in order to avoid the neuronal suppressing nature and other adverse effects of other, stronger sleep aids (such as Ambien, Ambien CR, Vicodin, Xanax, Lunesta, Sonata, Valium and other neuronal suppressing sleep assistive medications). Here is a recent and very impressive study on the further potential benefits (both anti-oxidant and anti-inflammatory) of Acetaminophen, the active ingredient in Tylenol PM. Recommended dosage is maximum two Tylenol PM, to be taken one hour before desired sleep time. While there have been recent papers on the potential hazards of acetaminophen (such as liver damage), those reports are based on excessive use of acetaminophen, such as 20 or more capsules daily.
DIET
Healthy Dietary Regimen
In addition to the Healthy Diet Information found in this section, please consider the following important information.
Milk products increase phlegm and often cause an accumulation that is difficult to expel. Avoid cheese, butter, milk and use substitutes such as any soy based products.
Thin liquids are often more difficult to swallow than thicker ones, such as tomato juice.
Nutritional Supplement Information
TwoCal HN, a product from Abbott Laboratories, contains a very high caloric value. Each 8 ounce can contains 475 calories with a well balanced mix of protein, carbohydrate and fat. There is very little fiber (which provides no real nutrition) so almost all of it can be effectively used towards weight gain. TwoCal is gluten- and lactose-free and can usually be covered by insurance. Details on this and other supplements can be found at www.abbottnutrition.com
More recently, Carnation Instant Breakfast Lactose Free (VHC) has come to our attention. This product of Nestle Nutrition is extremely high in calories (560 per 8.2 ounce can), is a well balanced mix of 16% protein, 34% carbohydrate and 50% fat. The taste is surprisingly good when consumed orally and can also be used through a feeding tube. Its nutritional density accommodates diminished appetites and the smooth texture is satisfying. Available only in vanilla, chocolate or other flavorings can be added. Patients have shown a marked increase in weight while on this supplement. A case of 24 cans can be ordered directly from Nestle and can also be found on other online stores and may be covered by insurance.
Healthy Weight Gain Suggestions
Highest Caloric Food Value Chart
Weight Gain Dietary Suggestions
ROM EXERCISE
Range of Motion Exercises is designed to help preserve flexibility and mobility. As is said, “use it or lose it”. Check back here to find exercises for your entire body, created by professionals who work with ALS patients every day. Consider seeking the assistance of a physical therapist for assistance. A caregiver, friend or family member can follow the simple instructions provided here. While these exercises may not strengthen muscles that have been weakened, all exercises should be performed in moderation. Fatigue is not helpful and may rob you of energy. Similarly, none of these exercises should cause any pain.
Range Of Motion Exercises (with photos)
PHLEGM ISSUES
Methods of Phlegm Reduction for ALS
1. Use acetylcysteine Effervescent Tablets once daily (dissolved in a small amount of water). This is the single most effective resolution for phlegm thinning and reduction. Originally a European folk remedy to thin and dissolve mucus, it is now available through the following website in the United States. http://healthierlungs.com/index.htm.
2. Drink a great deal of water -- water dissolves phlegm. Hot salt-water gargle is also a very good support.
3. Avoid dairy products -- milk and its bi-products increase phlegm. Also avoid fatty foods -- they contribute to production of phlegm.
4. Suck on two green olives (with or without pimento) and a wedge of lemon. This technique both reduces saliva excretions and dissolves phlegm. Any 500-year old remedy from the Greeks can't be all bad. After sucking on this for 5 - 10 minutes, chew and swallow.
5. Both garlic and radish are known to reduce phlegm. Try and add heavy doses of garlic to cooked foods and eat raw radishes. Chew parsley afterward for breath.
6. Robitussin Cough Expectorant / Mucolytic. An expectorant liquifies and thins phlegm and a mucolytic breaks down the fibres in phlegm. These work together, making it easier to cough up. Do not use any cough suppressant.
7. Horehound cough drops.
8. High fiber fruits, specifically apples and pears.
SUGGESTIONS FOR CONSTIPATION RELIEF
• Exercise. Start some sort of exercise program. Exercise brings more blood, oxygen and nutrients to the intestines which help them function properly. Exercise, combined with recommended dietary changes and supplements, will be the foundation of your wellness program.
• Fiber (25-35 grams, the equivalent of 2-3 tablespoons, in divided doses). Fiber in general is needed to add bulk to your stool, and bran is the most effective form. Fiber will also help develop regular bowel contractions.
• Fluid (eight 8 ounce glasses daily). It has also been noted that five glasses of hot water drunk daily has been beneficial.
• Swallow two tablespoons of olive or vegetable oil. Await results.
• A diet with enough fiber (20 to 35 grams each day) helps form soft, bulky stool. High-fiber foods include beans; whole grains and bran cereals; fresh fruits; and vegetables such as asparagus, sprouts, cabbage, and carrots. For people prone to constipation, limiting foods that have little or no fiber such as ice cream, cheese, meat and processed foods is also important.
• Drink fruit and vegetable juices and clear soup.
SELF HELP HINTS
Hand/finger Strengthening Device
There is a very interesting update of a hand/finger strengthening device that’s a big improvement
from squeezing a hackey-sack ball. It’s called Xtensor
Resistance Trainer, $40 and is available from the Herrington Catalogue.
Thick mucus
Hard to cough up or get out of throat - Order 30 sachets of effervescent acetylcysteine from
savannah@healthierlungs.com, or telephone: 404-431-7332. It cuts the mucus/thick saliva by breaking up
the strands that form those things. Call to order and tell her you need it yesterday. Use 1-2 sachets daily.
Saliva control
Have you tried all of the following? Tomato juice (lycopeic acid) 2 glasses daily; If too acid for
your stomach, then add 1 TBS sugar to each glass--cuts the acid. Tomatoes are highest source
of lycopeic acid, which is natural reducer of salivary output.
Also amitriptyline; nortriptyline; manual suction device; Sal-tropine; Robinul; Scopalamine patch;
ingest tannins (olives and lemon); avoid dairy products and fried foods, reduce or avoid fats;
place natural sea salt on tongue. If you haven't tried all/any of these, start with some sea salt on
tongue, then olives and lemon, then tomato juice. Try each for 3 days (fair test). If no success, email or call Steve to discuss alternatives.
10" Economy Lumbosacral Support with Cross Vector – Recommended by an ALS patient who found it
easier to breathe when wearing this support. Available at www.ezywrap.com
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