Moose

We just returned from 3 nights on the North Shore of Lake Superior. We stayed in the small town of Grand Marias about 2 hours up the coastline. It was a beautiful drive. The town has suffered from our recession, and so many of the cute shops and restaurants were closed. One more sad reminder of how our economy has suffered.

One day we drove on the Gunflint Trail in hopes of sighting a moose. Dennis was in his babble, coughing and grunting mode for the entire two hour drive. Neither JoAnn or I could understand one word he was mumbling. Occasionally I would ask him what he was talking about, but it was not worth the effort to try and understand him. He was beyond participating in any real conversation.

I was driving very slow. One of the dirt roads we took had recently been graded. We felt like we were riding on top of a washboard. The second off road experience had not been graded, but instead was covered in rocks. There was no choice but to drive slow, enjoy the scenery and keep the eyes open for a moose.

We were just approaching a small body of water when Dennis said, "MOOSE!" Sure enough, there along the edge of the water was a large moose drinking water. The moose slowly took off when he heard the car and hid in the trees. We could see him hiding from us and we stayed for a while hoping he would return. The moose, however, took off for the woods after a few minutes and we drove on.

For the rest of the vacation we would tease Dennis with, "oooeeeeaaaa, uuuuaaaerrrrr, cough, cough, grunt, mmmmnnnnoooooouuuu, MOOSE!"

I am glad that he is such a good sport and laughed each and every day he teased.

Until later,
Ann and Dennis

A New Electronic Toy, coming soon.

Friday, Dennis and I went to the speech therapist for an assessment for assisted technology. We return next Tuesday morning to meet with the salesman and find the right fit for Dennis. Hopefully this will make a big improvement in Dennis' ability to communicate.

It will, however, mean another medical device in the house.

Next is an electric wheel chair and soon a medical bed.

I do not begrudge him any item that makes his life as full as possible. However, the syringe sitting on the kitchen counter top, along with the thickener, Miralax and the pill grinder are constant reminders that someone very sick lives here. The outfitted bathroom is easily recognized as a bathroom belonging to a disabled person. And a wheel chair, walker and soon an electric chair, while they serve their purposes, loom large over a small home and once again, remind.

I am getting used to the large, overstuffed, old-fashioned, brownish-colored tilt chair that sits among our modern leather furniture and HD flat screen living area, however. Well, not really, but he enjoys his football while sitting in it, so it's okay, after all.

And naturally, more to come.

Until then,
Ann and Dennis

Listening and Talking

When I arrived home today, Dennis shared the good news that he was up at 8:30 this morning. In addition to getting out of bed early, he ate a huge breakfast, did some weight lifting, walked outside for a while and was cheerful. A nice change from yesterday.

His drooling is getting beyond pesky again, though. His botox has worn off, and his nurse practitioner is reticent about receiving another injection. She is afraid that his pneumonia last month was, at least in part, exacerbated by the injections. This was disappointing news, as his speech is so difficult to understand under the best of conditions. The more saliva he produces, the more difficult his speech is to decipher. The injections were the first intervention that helped even a little bit.

What all of this means for me is, simply, we are not communicating as easily. Dennis is the talker and I am the listener. Okay, those of you that know me well, know that I love to talk, too. But, I am basically lazy, and if I am around someone who likes to talk more than me, I easily acquiesce. Dennis likes to talk more than I do, so I have become the listener. It isn't easy being a listener, however, when the talker is so difficult to understand.

We have played these roles for so long, it is difficult to change. I simply need to become the talker, once again, as Dennis takes on the role of listener. I have a feeling, deep down, that the transition will be much easier for me, than it is for Dennis.

Until tomorrow,
Ann and Dennis

Conversation

It was back to work for me, today. My body clock is still confused and I was wide awake at 3:00. By the end of the day I looked and felt worse than the proverbial dishrag. But I made it through and I should be feeling quite normal in another day or two.

I was asked by so many people how the trip went. 'It was a great trip,' was my first response, but most people went on to ask how Dennis did on the trip. I told them great, but then went on to tell them the best part of the trip was having conversations with Dennis.

Dennis' best speech hours are after his morning meds and breakfast and before 4:00 in the afternoon. By the time I get home from work, his speech is close to incomprehensible. On Saturdays I am exhausted from work and care-giving, and I don't feel like talking. That leaves us with Sundays, but then that pesky game called football begins right after our late breakfast.

So, for me, one of the highlights of going to London with Dennis for two weeks was having the hours between 10:00 and 4:00 for conversation. We didn't talk about anything important, but we had the time to talk with each other.

Until tomorrow,
Ann and Dennis

Closing and Such

Oh, my. Sometimes as life gets easier, it gets more complicated. We are surrounded by all this terrific technology, but it seems, some days, it just gets more difficult.

We closed on our old house today. Everything went well. The were no complications or problems at all. The money, from the sale, was transferred into our account and for about three hours we were reasonably rich. But, alas, reality hits, and we had to pay off the line of credit we opened to purchase our new home. Dennis normally takes care of this stuff, because I don't deal successfully with money issues. That, and I have a hair trigger temper when it comes to phone conversations.

Unfortunately, his speaking was way off today, and when he attempted to take care of business over the phone, they could not comprehend him. Consequently, when I came home, I had to do the phone call.

I would think that transferring money from one account into another should be easy. We do all of our banking with the same bank, and have several accounts. We are, as they say in the biz, preferred customers. But, no. This was not easy or quick or at all efficient, and I did not feel like a preferred customer. Not one tiny, little bit.

The phone call racked up a total of 89 minutes. Yes, that is one hour and 29 minutes. I was transferred over 9 times, answered the same questions each time, and was given 2 different amounts for a payoff. How can this possibly happen?

Maybe it is just too many hierarchies. Each person was only allowed to do so much. I understand that the first person could not do everything, but by the time I was put in touch with the "elite" representative, I did not expect to be transferred "down" once again, just to repeat my account numbers, social security numbers and my secret question and answer, once again.

I only got a bit mad, once. And, that was with the person who finally could help me. For the record, I apologized. It just all seems to be so laborious to do the right thing, these days. Here, we had a loan we wanted to pay off, and no one wanted to take our money. I am not so cynical as to think they wanted to make more money from us by putting me off. I am skeptical enough to believe that many would have hung up and paid a bit more interest to obtain a few cooling off days.

It pains me that Dennis could not take care of this today. He so wanted to be the one to take care of all of this, and spare me that phone call. He knows how irritated I can get and how easily I can blow up. I admit, I did threaten, at one point, to move all of our money and accounts if I was transferred one more time. Guess what? That person did not transfer me again.

Ah, well, the house is sold, the money has been spent, and it is finally over. It has been a long spring and summer. And now it is fall. I believe I am ready to rest.

Until Tommorow,
Ann and Dennis
Living with Shy-Drager, Multiple System Atrophy, and only one home

Speech

Dennis had an appointment today to assess whether he qualifies for another round of therapy. Unfortunately, the therapist says she cannot do anything more for him at this point. He just needs to keep up doing his mouth, tongue and voice exercises on his own. Of course he can do this, and he does them with Raquel, and whenever we are in the car, but it's different as having someone critique him and let him know how he could improve.

Dennis is difficult to understand on a good day and near impossible to understand on a bad day. The guy loves to talk. He babbles all of the time about nothing and tries to tell me things I simply don't care about, one tiny iota. For instance, he will tell me the scores, each morning, of the hockey games the night before. I do not know one single person who cares less about sports than me. He babbles about anything and everything at any time. This was not a significant problem before, but now, I try so hard to understand him and when I find out he is simply babbling, it can irritate. Ya, ya, ya, just another opportunity to laugh.

There are so many parts of this disease, syndrome that I hate. The speech is one of those things. Dennis and I use to have story time at night. I would name a word, and he would put me to sleep with a story that the word reminded him of. This was fun and relaxing. Now it is work. So much work. I am always asking him to slow down, swallow and repeat. Slow down, swallow and repeat. It's getting tiresome both to hear myself say this and for Dennis to constantly hear this; slow down, swallow and repeat.