Saturday, November 29, 2014

The Perfect One




“He’s not perfect. You aren’t either, and the two of you will never be perfect. But if he can make you laugh at least once, causes you to think twice, and if he admits to being human and making mistakes, hold onto him and give him the most you can. He isn’t going to quote poetry, he’s not thinking about you every moment, but he will give you a part of him that he knows you could break. Don’t hurt him, don’t change him, and don’t expect for more than he can give. Don’t analyze. Smile when he makes you happy, yell when he makes you mad, and miss him when he’s not there. Love hard when there is love to be had. Because perfect guys don’t exist, but there’s always one guy that is perfect for you.” 

After knowing my wife for over 38 years, this quote struck me in a way it certainly would not have 38, or maybe even 10 years ago. We've lived through the typical "struggles" of life, raising two children, building two houses, quarrels over important and petty things, paying bills, changing jobs, death of friends and relatives and events that were (we thought) unique to us, battling foreclosure, getting pushed out of a business I helped to build and even seeing my Linda laying unconscious on the floor after being hit by an errant baseball throw - a week before giving birth to Matthew. Turns out, none of those made us special or unique. That's life. And none it prepared us to deal with ALS.

Much of life is about expectations. How we set them, how we follow through with them and, as this quote points out, the often unspoken expectations we cast on others. I've been so far from perfect over the years, I'm amazed Linda has stayed with me. I know the expectations I set for her of me early in our marriage weren't realistic. And neither were my expectations of her. I guess that's what they mean when they say "nobody's perfect.

Anyone going into a relationship would be well served to take this quote to heart. Post it somewhere where you'll see it every day. Linda and I have made it through some very difficult times that would have crushed most marriages. Reading this quote made me realize that it's not because we're able to ignore each other's faults, but because we've always accepted them (and again, I have many more than she has).

We're not perfect - but we're perfect for each other.

I love you Linda and I'm thankful every day that you know my faults and make me a better man.


Friday, November 28, 2014

Thankful for Liquid Hope

Let's play a game. What "food product", made by Nestle, contains the following ingredients?

WATER, MALTODEXTRIN, SUGAR, SODIUM CASEINATE (FROM MILK), CANOLA OIL, AND LESS THAN 2% OF MEDIUM CHAIN TRIGLYCERIDES (FROM COCONUT AND/OR PALM KERNEL OIL), CALCIUM CASEINATE, SOYBEAN OIL, POTASSIUM CITRATE, SOY FIBER, PARTIALLY HYDROLYZED GUAR GUM, MAGNESIUM CHLORIDE, CALCIUM PHOSPHATE, HYDROXYLATED SOY LECITHIN, SODIUM ASCORBATE, CHOLINE CHLORIDE, SALT, SODIUM CITRATE, MAGNESIUM PHOSPHATE, ALPHA-TOCOPHERYL ACETATE, L-CARNITINE,  TAURINE,  ZINC SULFATE, FERROUS SULFATE, NIACINAMIDE, VITAMIN A PALMITATE, CALCIUM PANTOTHENATE, COPPER GLUCONATE, PYRIDOXINE HYDROCHLORIDE, MANGANESE SULFATE, THIAMINE HYDROCHLORIDE, RIBOFLAVIN, VITAMIN D3, CITRIC ACID, BETA-CAROTENE, FOLIC ACID, CHROMIUM CHLORIDE, BIOTIN, POTASSIUM IODIDE, SODIUM MOLYBDATE, SODIUM SELENITE, PHYTONADIONE, VITAMIN B12

Give up? An energy drink? Nope. Candy bar? Nah. Nespresso pods? Wrong.The answer is: Isosource 1.5, one of the Nestle products routinely prescribed by Doctors for people with feeding tubes - and there are millions of us. It's a huge and highly profitable market. My monthly bill for Isosource, which is covered by Medicare, is $2200.

I had my feeding tube placed in January of this year. They kept me overnight at MGH. Prior to my discharge the next day, we met with dietician from Coram/CVS. She explained that I had been "prescribed" a "nutrient dense" formula and that we would receive monthly shipments from Coram along with supplies which include large syringes, tubing and IV bags for gravity drip feeding. 

When we began the feedings, I immediately experienced, what Linda and I call, "baby spit up". It looks identical to what our boys would spit up after breast feeding. We played with the speed of flow through the tube and my sitting position during feeding. Finally, Linda sat down and looked at the ingredient list and found the list above. Not a single whole food ingredient. We called Coram and they sent us their whole food formula, again produced by Nestle, called Compleat. When we got it, we reviewed the label only to find the basic ingredients were identical to Isosource, with exception of added dehydrated chicken carrots and peas, less than 2% cranberry juice and tomato purée. Hardly a drastic change. 

Then we found Liquid Hope and had an angel of a visiting nurse, who has a Masters in Nutrition combined with a never say die attitude. We embarked on a conquest to acquire real nutrition for me. Between Linda and the new nurse, the powers that be didn't stand a chance. Liquid Hope is made from real food" including: chick peas, brown rice,carrots, green peas' sprouted quinoa, sweet potato, miso, almond butter, kale garlic and herbs. 


After weeks of wrangling with insurance issues and waiting for the folks at Liquid Hope to find a distributor in Maine, we received our first shipment on Wednesday. 
In my humble opinion, the medical community should be ashamed of recommending that already immune compromised patients and others dealing with a wide range of afflictions with compromised constitutions, including infants, be fed this semi-synthetic "candy" as a substitute for nutrition. 

There's no substitute for real food.

Here is a blog post from the founder of Liquid Hope:

http://functionalformularies.com/blog/#sthash.vCPB1tZm.jEs5tqPP.dpbs




Sunday, November 9, 2014

This November 13th: NOT Just Another Day


So, The Hope-JG Foundation is hosting what promises to be an amazing event on Thursday, November 13th. We are blessed to host the folks from HARK and their documentary "Hope on the Horizon". To view the trailer and get ticket info, go to: www.hope-JG.org

Linda was setting up my morning tube feed a few days ago. She has pattern that carries her between my "Starship Enterprise" setup in the living room and the kitchen. On this day, headed for the kitchen, she stopped in her tracks and said "You realize what November 13th is, don't you?" To which I replied with my typical stupid male, wide eyed look and said "Umm, no." She smiled her irresistible smile and said "It's the day you were diagnosed with ALS seven years ago." And we both fought back tears and then started to smile again. You see, our minds both connect November 13th to the date my Dad died - 8 years ago on November 13th.

Now, I miss my Dad desperately. But, I'm convinced his handling of his own handicap (he had one of the first artificial hip replacements while in the service. I never knew him without a cane), with such grace and tenacity, prepared me for this long strange trip my family is on.

As for my diagnosis on that date, I don't look at that as anything other than a triumphant date. Those of you who know us are tired of hearing how we refused to accept the prognosis of 2 - 5 years (later to be shortened to 18 - 24 months by the second opinion Doctor in Boston). 

So, you ask, what does this Gregorian coincidence have to do with the Event this Thursday? Here's my take: Most people would look at the events of November 13th, 2006/2007 and think they were horrendous anniversary days no one would want to get out of bed for. I look at it differently. (Surprise.)

My Dad lived a full life and left a living legacy in not just his two sons, but in literally thousands of students and athletes he touched in his 30+ years of teaching and coaching, many of whom became researchers, nurses and physicians. He was a living example of Steve Gleason's motto, "No White Flags". As for the day of my diagnosis, given the 18 - 24 month timeframe handed to Linda and I a month later, it's a date for celebration, not despair, seven years later.

And that's exactly what this Thursday will be, a celebration of the lives of some our ALS heroes and those with ALS who have passed on but left their own unique and indelible mark on their families and the world. More importantly, it will be a celebration of life, with and without ALS. "Hope on the Horizon" is the perfect film to reinforce our willingness to honor families with ALS, past, present and future. It's also a perfect compliment to our mission to see an ALS/MS Residence here in Maine. It's the future and the future starts Thursday night when the doors open at 6:45 PM . If you can't join us, will you share this with a friend?