Weary on Sunday

This morning Dennis went to the hospital once again, to have his J/G tube replaced. Although all went well, it's difficult to not feel defeated some days.

Yesterday....

Dennis couldn't eat. Dennis couldn't move. I was snappy with him. Jane and Ralph came over to drop off a pie for Dennis (you have NO idea how much this man likes his pie), and Dennis was on the toilet. An hour passed and they left. He could not eat the pie. Not one teeny tiny bite.

He couldn't move well all day, Sunday. No matter how many meds we poured into him, he was stiff and immobile. He finally went to bed at 6PM. He was groaning and moaning, as is often normal, when I heard a big THUNK. He had fallen out of bed, face first.

No harm had been done, once again, but two falls in one week is a huge set-back. This can't be happening, once again.

But tomorrow we are off for a weeks vacation - Boston and Cape Cod, with family. Hopefully vacation will pick both of us up once again.

So, until much later,
Ann and Dennis

Post Vacation

We are home. We are also tired, surrounded by dirty laundry and hungry. We ate too much food, and way to many potatoes. We both gained weight; Dennis is happy with his gain, and I am very unhappy with mine. But, it is all part of the vacationing process, I suppose.

Vacation is always a great indicator of how Dennis is doing. I use the last vacation and compare it with the current vacation. He is definitely slower than last year. Last year, in Paris, we would be out and about late at night, eating dinner at a fairly appropriate European hour - between 7:30 and 9pm. This year, our days were done by 7 pm and we were often in bed by 8 pm.

Last year, he was still able to eat a full meal in a timely manner. This year, he needed a couple of hours to eat a meal. We were not able to indulge in late night meals, rather we ate a larger breakfast and at large, late lunch. We ate quite a bit of pub food, which resulted in us saving a few bucks on food, but drinking way too many Guinness beers. Is it true that a Guinness a day keeps the doctor away?

Now, the final indicator of his health, will be the amount of days he needs to recover. This is our second day home, and while I am feeling lazy, the jet lag has pretty much passed. Time will tell when Dennis is back up to speed.

More on the vacation, and a few pictures, over the next few days. Until then, Cheers!

Ann and Dennis

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

Cherry Garcia

When the music that wakes me each morning begins, Shiva springs up on the bed for her morning stretches, cuddling sessions and remarkably soft purring. This morning she was already laying at the bottom of the bed wrapped around Dennis' feet. She made her way up to me, and I laid my hand on her back. It was all crusty and her hair was matted together.

I glanced over Dennis' way, and I realized why she had been in the bed and why her fur was yucky. He had eaten ice cream in bed last night. I don't know how much actually made it into his mouth. I do know that a pool of Cherry Garcia surrounded him, and that his face was covered in ice cream. Shiva evidentially had a veritable banquet last night, while I was gently snoring away.

Okay, okay, I know. I am supposed to have rules about all of these inconveniences. Even so, what do you do when a guys blood pressure is too low to stay up any longer, and he is still hungry? Even if it wasn't ice cream, with his new diet, it would still be something sloppy.

At least these days, with Raquel and JoAnne spending the day with him Monday through Friday, I don't have to come home to a mess to clean up before I can commence making dinner. By the time I came home from work, the sheets had been washed and the bed had been remade. It's expensive to have someone around all day long, but I cannot imagine going back to the insanity of last fall.

Thank you Raquel and JoAnne. You are keeping me sane in so many ways.

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.

Changes

The results from Dennis' swallowing video have been reviewed and shared with him today. It looks like another major change for both of us.

The best news is the prognosis is good, with major changes in diet and the way he swallows.

He will receive 3 weeks of therapy with his speech pathologist for learning new methods to swallow. He will receive more exercises to do at home.

His therapist, Marjorie, has recommended two cookbooks for me to help with this major transition to his new diet. I assume a good blender is also going to become rather important to this new place in our lives.

The worst news, for Dennis, is that fresh fruit is out of the picture. The good news is that cooked fruits are okay, meaning pie filling is good for him. Does it count as a pie if you don't eat the crust?

Bread, is out, but syrup soaked pancakes are in. Soup is in, but only if it is creamy. There will be no more sandwiches allowed and red meat is a big no-no, unless I grind it all up.

This will be a big change for us, but a change that could extend his life. So that makes it all worth while.

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

Eating Issues, Again

While we were in Paris, I had a great starter of goat cheese, roasted red peppers and eggplant. It inspired me to make a simple and light pasta dish for dinner last night. Dennis has not been able to eat spaghetti for some time now, but he has found the tubular pastas to be easy to chew and swallow. Inventing a pasta dish, inspired by the French, seemed a good choice for a hot and humid night.

I had roasted peppers and tomatoes as well as some sweet goat cheese, and I always have olive oil, garlic and pasta, and everything should have been super easy. But I wanted it to be special, so I made a bit of an unnecessary fuss when putting it all together. It turned out the extra touches were well worth the effort because the dish was absolutely delicious.

Dennis could not eat it. Too much saliva in his mouth. He couldn't chew the pasta. All that was happening was heavy, red drool pouring out of his mouth. I remembered the mechanical chopped meals at the nursing home, and took out the underused food processor to chop it up for him. It appears that a food processor is not able to do much with pasta either. He still couldn't eat the dinner.

He has lost weight again, and the doctor was concerned at our last visit. He assured her that it was because he had been in the hospital and nursing home for so long, and that I was a great cook and the weight would come back on soon, so she needn't worry. It's just that if he can't eat it, it's going to be hard to fatten him up.

I guess there is always ice cream.