/** */

Liquid Hope

Usually a new hole in your stomach is bad news, often being either an ulcer or the result of some sort of violence. But for some, properly done, it’s a way to keep fed if the more normal method is no longer available. The question then is what to put through the hole. Obviously it would need to be in liquid form, but one can’t live just on beer alone (and I have tried…). Thankfully, there is a much better alternative.

Amyotrophic Lateral Sclerosis (ALS or Lou Gehrig’s Disease) is a disease outwardly characterized by loss of muscular strength. People coping with diagnosis (PALS – Person(s) with ALS) experience a progressive loss of muscular control as the nerves communicating brain commands to those muscles die. Eventually a specific muscle, the diaphragm, becomes weakened and breathing capacity is diminished. After progressive weakening of the diaphragm, breathing capacity diminishes to the point that blood carbon dioxide levels rise and the person dies of respiratory failure.

Although no two PALS experience the same progression pattern (I call us “Snowflakes From Hell”), usually another important – yet overlooked – muscle group is impacted before the diaphragm. This muscle group is commonly known as the tongue. When the back of the tongue loses strength, it can no longer efficiently create the pre-swallow bolus made up of the food being chewed and it can also no longer guard the airway against intrusion of food below the mouth before the epiglottis closes the trachea and opens the esophagus. This creates a choking situation with the increased possibility of aspiration pneumonia. Obviously both the choking and pneumonia represent substantial threats to life, especially for those with compromised respiratory function. Not only are choking and aspiration both hazards, but the lack of proper nutrition from not being able to eat is a dire handicap in the battle against ALS.

Fortunately for people in such a situation of lingual weakness, such as PALS in mid and late stages, medical science has created the PEG tube. This is a silicone rubber tube a little larger around than your typical drinking straw. It provides a direct route to the stomach and can dramatically lower one’s bar bill (because you don’t taste, you can switch from top-shelf to well brands…). PEG tubes are actually essential tools in “treatment” of ALS by keeping up optimum nutritional (including caloric) content.

Unfortunately, the “medical formulas” many patients are told to exclusively use – such as Nestle COMPLEAT – are based almost entirely on corn syrup for calories, which is the glucose base version of high fructose corn syrup (HFCS – the difference between the two is that HFCS is much sweeter, thus being attractive to processed food manufacturers). Basically, each can is a candy bar with a multivitamin in the middle. We have all heard the news about the perils of excessive sugar intake and how it, in the form of HFCS, is pervasive in processed foods. Eliminating HFCS and still eating just as much glucose sugar, especially as a sole source of calories, is equally harmful.

As I have previously blogged, using these medical formulas for any prolonged period is very risky in terms of your pancreas. I am an otherwise extremely healthy [formerly] athletic man with zero endocrine or any other confounding health issues. Nevertheless, using the traditional “medical formula” every day for two years put me in the ICU for a few days with a severe diabetic and hepatic crisis. I took control of my treatment plan and eliminated the corn syrup by switching from formula to real food (something which hospital dieticians tell patients to NOT do).

Clearly, the traditional enteral nutrition sources are not meant for long-term use. Until recently, most PALS died relatively shortly after diagnosis. This meant a few months of solely enteral nutrition weren’t going to pose a problem. But now, with better care and with adaptive technology better able to restore lost abilities, PALS are living longer post-diagnosis. I am one of those, going past 10 years post-diagnosis. Obviously better nutritional products are required. After taking personal control of my feeding, choosing fresh food blended together with a combination of healthy sources of fat, my blood glucose, liver, and kidney functions all normalized.

Not all PALS have either the ability to make their own blenderized food (is that really a word?) or have people who can make food for them which meets their nutritional and caloric needs. Just opening a can of soup is insufficient, as almost all processed food contains unacceptable levels of sodium, HFCS, etc. Further, PALS have certain requirements such as higher fat and calories. Getting those from improper sources can be hazardous. So what can we do?

Liquid Hope is here! This is a product created as a reaction to the terrible content of the traditional formula and the negative effect on health they can have. It is basically fresh food in a pouch that meets the needs of those with special dietary concerns (dairy free, gluten free, non-GMO, etc.). It’s a full meal replacement suitable for PALS as-is, but can be mixed with avocado, coconut oil, or other healthy fat source to boost calories for those PALS experiencing dramatic weight loss. My readers can learn more about the development of Liquid Hope here.

Even though I was getting mostly fresh food, I was interested in trying out Liquid Hope. The good people at Functional Formularies agreed to supply me a 7 day supply. From the very first meal I felt great! I was fully satisfied as if I had just had a good meal at our local vegetarian restaurant (I really miss their vegetarian lasagna). After 48 hours, I had more than my usual energy, I felt clear, and I was much more regular (constipation is a frequent issue for PALS). I only added a couple tablespoons of coconut oil along with some protein and vitamin additives, like I do all my meals. I was really sad to see the last pouch go down.

In my semi-expert opinion, Liquid Hope is a fantastic enteral nutrition solution and far superior to the usual cans of “medical formula”. I am greatly looking forward to switching fully to Liquid Hope for my nutritional needs. It’s now covered by Medicare*, Functional Formularies can help with the paperwork, and my first regular shipment is on its way!

I have been watching and talking about Liquid Hope on social media for a while. Frequent readers and friends know that I am extremely anti-“medical formula” and push patients to make fresh food for their enteral nutritional needs. Now that Liquid Hope is covered by Medicare* and is provided by a growing network of enteral nutrition providers, I call on all PALS to try it and use it. Let Nestle make snacks, not food staples. PALS have a serious medical condition requiring real nutrition. Take care of yourselves. Either blend fresh (not freshly-opened) food or use an organic and healthy product such as Liquid Hope.

* [So long as you aren’t in what’s known as a competitive bid area. The problem with being in one, in my opinion, is that the reimbursement to providers is based purely on lowest-price, keeping the better products from being available. I can explain the political aspects but that’s an entirely different subject not appropriate for this blog.]

17 thoughts on “Liquid Hope”

  1. Great post. We also tried a seven day sample of Liquid Hope and were quite pleased. We had family Dr. write a prescription, ( Neurologist at clinic would only prescribe Jevity ), had to do a little legwork as usual but not bad, folks at Liquid Hope helped some with paperwork and we have to purchase through a distributor but Ins. is covering 90% so we’re thrilled! First full order is on the way.

    1. Where did u receive free samples. My son spent 2 months in icu we now have a trach g tube and dyalisis port. We’ve tried all kinds of formula and they all make him sick. He ate pozza chicken nuggets and fries prior to all this… im wanting to try liquid hope. Thank u

  2. I have been a real food added and gained 2 lbs the first week. My weight is 6p lbs at 76 yrs old. Scleroderma diagnosis.

  3. Wow. This is a fabulous article. It explains ALS progression, feeding tubes, and nutrition in one article better than I’ve ever been able to explain any of it. And, yes , PLEASE write about competitive bidding. This is why I’m paying out of pocket for something that makes total sense for my PALS. Thank you for writing this.

  4. We had my
    Mom on liquid hope after her stroke. Unfortunately anytime she was in a facility we had to sneak bolis her when she was there. We were not able to keep her on it 100% until she was home. She did get her swallowing back but we opted to keep the tube in to supplement her nutrician and at 91 she was strong and healthy at 132 lbs. Medicare was not set up yet for us to get it that way. But, we found it no more expensive than buying good groceries. We did find that the high fructose corn syrup clogged her arteries. This is not something the medical doctors worry too much on a 91 year old. So unfortunately this was a discovery too late. Also the isolated soy bean protein is poison to the brain in large quantities. And this is what they give stroke victims. When I got her home I would even blend our homemade organic chicken soup with veggies and give her that. I am so happy you found Liquid Hope. It is awesome how Robin has fought so hard to make this a choice!

  5. Is there anything that these American food conglomerates can do competently, and in the interests of health?

    Kudos to you, Eric, on recognizing the problem and resolving it early enough.

  6. I have a 19 year old daughter with a very rare disorder who has, over the last several months, lost her ability to swallow safely. 4 bouts of aspiration pneumonia dictated it was time for a gtube. She had a gtube as an infant due to very severe reflux disease but was kept on her regular baby formula. Now, due to her inability to swallow, she had a gtube placed again on 10/6/15. When it was time to start giving her feeds, the only thing the hospital would provide was Nestle Complete. So frustrating! When the hospital dietitian started working on our home-care supplies, I requested Liquid Hope. She actually discouraged me from using it stating “the protein count was too low” (92 grams per day for a 4ft2in 19 year old?) And she would need an “incredible” amount of free water each day. (apparently 1000ml – 4 cups – counts as “incredible”!) I couldn’t wait to get my daughter home from the hospital. She was tired, sore, and looked terrible. After months of battling constant lung inflamation, and a stomach and duodenum that were terribly inflamed from celiac disease we didn’t know about until surgery, her body was worn out. She was white as a sheet with deep, dark circles around her eyes. But just 24 hours home, 8 feedings of liquid home – and a lot of uninterrupted sleep – she looks like a new person! For years she has had these odd bumps under her eyes that our dermatologist said are usually related to allergies. Interestingly today they started peeling off!
    I can’t wait to see how my daughter is feeling a month from now.

  7. Hello! My now 19 yr old daughter Sara was struck by a minivan as a pedestrian in Oct 2013. While she suffered multiple fractures, the most debilitating injury was a stage III (of 3) diffused axonal brain injury (DABI), which involves the brain stem. She spent 10 days in an induced coma to control the brain swelling, and another 10 days in a coma. She spent a total of 7 months in hospital mainly in a vegetative state to be discharged to the community, with a Ranchos Scale score of 2ish, because she was non-responsive, alert and actively participatory in her rehab, which in itself was maybe attempted 2-3/wk for an hour or so a day, and therefore she did not qualify for inpatient rehab at our local rehab center. She spent 9 months in a group home, which in itself I commend the work they do but it was not the place for my daughter (it’s a long horrendous story and one I prefer not to relive). During this time, we learned of a “Slow to Recover” ABI program in Hamilton Ontario, 6 hours from home, for which there are only 6 provincially funded beds. We waited 5 months to get there and we finally left on March 31, 2015. Sara spent almost 6 1/2 months there, she underwent 5 surgeries in 5 months to fix the severe contractures of all extremities caused by the DABI, and she had an intrathecal baclofen pump implanted and endured Botox injections in the neck, trap and back to address the severe spasticity and tone. In between the surgeries, she underwent physiotherapy and speech/communication therapy along side neurotransmitter (Ritalin and Amantadine) drug therapy. Sara had a total of 5 wonderful and knowledgeable doctors with each their respective teams of residents, nurses, therapists and admin staff working on her case. Sara is on so much medication for the DABI (Clonazepam, Tizanidine, oral and intrathecal Baclofen and Tylenol PRN) and medication to address the side effects of some of these medications (Lansoprazole, Psyillium, Soflax and Senekot) that it makes my head spin. I fear the health of her liver and pancreas, and other organs responsible for processing all these drugs. Lately, we are dealing with an UTI (she sometimes passes stool due to bouts of diarrhea through the vagina through the fistula caused by the pelvic fracture) and now a yeast infection due to the antibiotic prescribed. She’s also on Propanolol for high blood pressure. With all this, I should be on blood pressure medication and the clonazepam too!! The biggest issue and concern is her digestion (or the lack of ease of) and bowel protocol because of her high risk of fecal impaction, obstruction and constipation caused by the laziness of the bowel due to the intrathecal baclofen. Since Sara’s accident, she’s been fed Jevity 1.2 and Resource 2.0 at a rate between 200 and 250 ml/hr, for which the latter is now causing severe cramping and gas as we think she is not digesting her food fast enough so it is fermenting cause the bloating and painful abdominal discomfort cause by gas, which increases her spasticity and tone due to pain. We have had to decrease the rate of the feed too because of this, which now makes the digestion even slower. It’s a vicious circle. An endoscopy will be performed shorty to rule out any physiological abnormalities but I suspect it will clear her of this possibility. I truly believe it is the crap she is being fed, 5 tetras a day!!! You can look up the ingredients of the Resource 2.0 and see for yourself. I wouldn’t feed this stuff to my dog and yet my daughter is in-taking 5 of these tetras a day. Something has to change and I believe her nutrition is at the source of most of her problems. I’m happy to say that after 6 months in formal rehab, she’s been discharged into my care at home. FINALLY!! It’s been 5 wks today. We’ve encountered many challenges but we have pulled through. My mission now is to change her feed. I will be trying Liquid Hope and working with my naturopath, physiatrist and family doctor on her nutritional requirements and supplements. The campaign for my daughter is called “Hope for Sara”, and what better way to infiltrate that slogan into her nutrition than with a product called Liquid Hope. I thank you for reading our story. Any insight you can share with me, I would appreciate. I am a member of the Facebook Functional Formularies group page so I read a lot of great stories of success and triumphs. I hope to add our name to that list.

  8. Hi Eric, we are trying to obtain Liquid Hope as we have been in ICU for 17 days with extreme GI issues and pneumonia. You mentioned “competitive bid area” and we lie in Georgia… how do I find out if this is an area?

  9. I have Crohn’s disease and need periods of liquid diets would it be suitable plus I live in Adelaide South Australia what hope is there of getting it here?

  10. Hi! My dad has this desease! Is there a way I can get I touch with someone who will donate or at least five coupons to get this liquid hope??

    Please write back!!

    1. Contact Functional Formularies, the manufacturer, and see if they can float you 1 week’s worth of product. If it works out for you, they can help set you up with a provider who will bill your insurance (Medicaid/Medicare and/or private). You will need a prescription from your Neurologist and/or your GP (General Practitioner) saying that you require this special formula for health reasons such as digestive difficulties, prevention of development of diabetes, etc. Otherwise insurance will force you to use that corn syrup poison they force on PALS. That garbage very nearly killed me – no joke.

      Good luck and good health.

  11. for oral consumption, does anyone have any recipes to make it more palatable ??? adding half and half now but need ideas ?

    1. It does kinda taste like dog food. You most certainly need more sodium (table salt – NaCl or sodium chloride) because 3 pouches a day only give you half your daily requirement of sodium. Other than that you could try some brown sugar or molasses/sorghum to sweeten it up. Look up “Alaga Syrup” on Amazon or Alaga can ship direct to you. Alaga is my absolute favorite sorghum (as a kid after a bacon-eggs-OJ breakfast I would mash it into a lump of butter then rip up my grandfather’s buttermilk biscuits into it and mix it up and fire it down as the breakfast “dessert” – it’s fantastic!). The Alaga should help out along with the Half-n-Half; but be sure to brush teeth immediately after, lest you not have them for long..!

      For tube feeding I add guacamole and coconut oil for “good” fats (I also use sour cream as my dairy fat because I love it and it’s less expensive). You could try adding 1-2 avocados to each pouch of mix along with a tablespoon of coconut oil instead of the molasses/sorghum. Other fruit or blanched vegetable chunks could help.

Leave a Reply

Your email address will not be published. Required fields are marked *