Feeding Tube

Dennis has lost 30 pounds in the past year. The first 15 he was grateful to loose, the next 15, I was grateful he lost. It's easier for him to walk around, and much easier for me to help him get up and get around. However, it cannot keep going down and down.

Several people involved in Dennis' care have thrown around the idea of inserting a feeding tube. This seemed to me to be a last resort. I cannot fathom the idea of never being able to eat again. I don't think a world where Dennis is unable to eat pie is a world in which he wants to live. And how would he exist without ice cream?

But, yesterday, a visit with the speech therapist cleared up this whole feeding tube business. We found out it is really just a button that open and shuts, and nutrition is inserted via a needle, into the stomach. It is used more as a supplement to nutrition rather than a substitution for the whole enchilada. He can still eat, but when he is too tired to get all of his nutrition through edible food, we can stuff his belly full of liquid food.

I am feeling so much better about this whole business now. And, for those of you that expressed concern about my feeling overwhelmed the other day - thanks, and I am feeling much better.

Until later,
Ann and Dennis

Schedule Change

I usually come home from work around 5:00 and make dinner after my requisite one hour relaxing time. We usually end up eating around 6:00 or 7:00. This has served us fairly well over the past few years; doing breakfast and lunch on our own, and eating together at night.

A few issues stand in the way of this working for us, anymore. For one, the drooling. In the morning and early afternoon, Dennis' drooling is less troublesome than it is at night. It is very difficult for him to eat a meal after 2:00. Secondly, he eats very slowly, and I get antsy. This means I either eat more than I need, or I am done with my meal at the same time he is beginning his meal.

Thus, a schedule change. It's fairly easy for me to cook at night, and have Raquel or JoAnn heat it up the next day. Either one of them could cook him a good meal, or heat up a meal, if I buy the right groceries. This means, we won't be eating dinner together anymore, but then we haven't really done that for a while.

On the other hand, we will have more time together at night to snuggle and watch a stupid movie. And that makes a schedule change all worthwhile.

Until Tomorrow,
Ann and Dennis
Living with Shy-Drager, Multiple System Atrophy and a schedule change

Eating Out

On my way home from work, I passed an American Legion. I had never noticed it before, but, then, I am still learning about our new neighborhood. Outside they had a large placard, "Steak Fry Tonight." My initial thought was, Dennis would love this. I'll go home, pick him up and treat him to a cheap dinner.

Then, just a moment later, I remembered he no longer can eat meat unless it is all ground up.

I will figure out this new diet, mechanical soft, and we will always eat well. However, going out to eat for dinner is going to be more and more difficult. Unfortunately, that has always been our favorite date night. We both enjoy spending a long evening with a bottle of wine, an appetizer, dinner and dessert. Neither of us is ready to give up the whole idea of eating out just due to this new diet.

Tonight we will settle for left over meatloaf and mashed potatoes, at home.

Until Tomorrow,
Ann and Dennis
Living with Shy-Drager, Multiple System Atrophy and eating at home more often

A Bit of My Humor Has Returned

Life is good once more!

I woke up today and truthfully wanted to get out of bed. Once I was out of bed, I had an urge for a cup of coffee. I not only had the energy to brew it, but I enjoyed every drop of it. An hour later, and my stomach is not saying, "what are you doing to me, woman?"

I really was so laid up that I forgot what it feels like to feel good. Today I remember. Yes!

This week will be about focusing on Dennis' recent diet, and how we can both eat what is good for us, short of me having to prepare two different new meals each day. I have figured out that mechanical soft actually means hacked up and quite wet. Wednesday, I made pasta and cooked the crap out of it. The sauce was spicy sausage in addition to lots of marinara. Dennis had no problems with it at all, the first night.

Thursday, there was no getting me out of bed to make supper after his PCA left, so Dennis heated up the pasta. He couldn't swallow it.

I was still in the "don't talk to me, don't touch me, pretend I don't exist" stage of being sick. I wasn't capable, or agreeable for that matter, to say, "add water and more sauce when you reheat the pasta in the microwave." I think he ate the apple sauce I purchased a few weeks back because it was on sale.

Dennis' speech therapist claims she has two cookbooks she recommends for soft-mechanical diets. I looked at Amazon.com and wasn't able to locate much, but there are a scattering. From what I could tell, they don't give me any more information than I already have. Fish is okay, if it is boneless. Mashed potatoes are in, but they must be soaked in gravy. Any other type of potato is out. Veggies and fruits require being cooked to mush. No more corn on the cob, my dear.

So, my dear friends and family, if you have any recipes that you would like to share, I am happy to try them out. Just remember, mushy, over-cooked, no bread, but spicy is okay. All of this is, naturally, subject to immediate change.

Until Tomorrow,
Ann and Dennis
Living with Shy-Drager, Multiple System Atrophy, Dysautonomias and a new diet.