The Test

I was just becoming satisfied that we had worked out all of our issues regarding personal care attendants, when JoAnn told us, a few weeks back, that should would not be available on Fridays for the month of January. I simply asked Raquel and she said "yes." So I was cool and relaxed when Raquel asked me today if it was next week that we needed her on Friday.

I said yes and Dennis yelled out a huge 'NO!'

As Raquel tripped off to the other room, we began a slightly heated discussion. It might have gotten hotter, but a guy was here fixing an installation problem with our blinds. Neither of us were in to looking like complete fools.

I understand that Dennis wants time alone. I love being alone in my home, and I don't get the opportunity very often. No matter how far away the PCA stays, he is still never alone. I feel the very same way about his presence. But, in reality, it's not the same. I can do anything I want to when Dennis is here. You do put limits on yourselves - like the really good fight we could have had - when someone else is in the house with you.

Oh the other hand, he has not proven to me that he can take care of himself without someone here. He believes he is capable, at least for one day a week.

So, a test for the rest of vacation, seems to be in order.

We are home alone for the next 5 days. If he can show me that he can get out of bed, get dressed, feed himself and get around the house without my help, I will give in to his request. I will not feel at ease, that day at work, but I will give him back his independence, at least one time.

Until the next time
Ann and Dennis

Vacation

When I have time off from work, I always think about retirement. I enjoy sleeping without an alarm and living without an agenda. Eventually, however, Dennis wakes up and begins needing me for this, that and the other.

I do love helping him. I have learned to enjoy almost everything about giving him the care that he requires. We even have a pet name for me, when I am giving care - Bec N Call. But I only love helping when I am not doing it full time.

I am not a natural born care giver. I am sure that if I had ever gotten around to having children, that I would have hired a nanny to do at least half of the work.

It's not that I am lazy, I just need lots of variety in my life. It is not out of a lack of love, either. I love, love, love Dennis. I want to keep that love, too. Taking away my entire independence is not the way to keep my love strong.

We seem to have found a good balance that is working for us, at least right now.

And that is all I have to say for today.

A Dance

First, let me say how lazy I have been lately. The very idea of writing has had absolutely no intrigue to me at all. Maybe it is because winter, so far, has been very cold. Maybe it was the London break, and the cold, virus type of stuff that followed. Whatever, I became a bit down and uninterested in keeping any of my goals alive and well and fulfilled.



But today, I feel a bit lighter.



Perhaps it was finishing the wrapping of presents. Maybe it was setting the table for dinner tommorow. Then again, it might just be that this is the fourth day that I haven't had to go to work.



But, I really think it was the dance I had with Dennis today.



Dennis loves rock and roll. Me, too, but only the lighter stuff. The kind of rock that a girl can join in singing or dancing.

Dennis loves it all, but today he wanted to hear one of his favorites. We bought a new Bose Wave for ourselves, and he wanted to play one specific track. It was a great slow song. He knew the words, and I knew how to wrap my arms around him and hold him up.

We danced the entire song. One whole rotation around in a mini-circle. He sang the entire song. And I lost my tiredness.

I am back.

Until tomorrow,
Ann and Dennis

Doctor Visits

We are set for the next Mayo visit in January. This is the test where the force radio-active materials through Dennis' veins. The test that will definitively answer the question, "Is it Shy-Drager or something else?"

Dennis also has an appointment for botox injections in January. These are suppose to help his drooling issues. His doctors all approve and we are both hoping this will be the answer to the most pesky of problems.

Tomorrow it is a visit to urologist for a catheter change. They will also check for a bladder infection if Dennis remembers to ask for one. He has been a bit under the weather and he was thinking perhaps . . .

I also need to call his general practitioner about his depression. He is understandably depressed, but I hate the idea that it can keep him from living as fully as possible.

If nothing else, his life is full of doctor visits.

Until tomorrow,
Ann and Dennis

Life

Right before we left for London, I received a call from telling me that Larry, an old friend of mine was in the hospital. I did not have time to visit him before we left, but I knew that he had family and friends around to be with him.

Today I called to find out how he was doing. He had been diagnosed with pancreatic cancer, is non-responsive and has only days to live.

I think this is the way that Larry has chosen to go out of this world. He lived his life his way, and spending time in a doctors office, even if it meant living for several more years, was of no interest to him. Until right before Thanksgiving, he ignored the fact that he hadn't been feeling well. He will die quickly, if not a bit too soon.

Dennis looks at life so differently. He wants to live and tries everything he can think of to extend his life for many, many years. He fights hard to live a great life.

I can respect the way Larry choose to live his life. But I not only respect Dennis' choices, I also admire the way that he has decided to live his life.

Thank you, Dennis, for being strong and for loving life.

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

Home, Again.

Ah, back at home again. So bittersweet. There is nothing quite as comfortable as your own bed. Even if I don’t enjoy cooking everyday, there is an easy feeling when you can easily reach for just the pot you need without opening several cupboard doors. At the same time, you are at home and not exploring new spots and meeting new people each day.

During our last trip to London, we met up with Poppie, one of my online friends. This visit, we not only saw Poppie again, but also met Lola, another online friend. Of course, we also spent lots of time with Jane and Ralph.

Shiva greeted us at home with lots of love. She was well taken care of, but still has not let us out of her sight since we returned. She finally stopped purring sometime this afternoon. Even if it's only a cat, it is nice to know you have been missed.

I have lots of London stories, so please stay tuned. Now that my computer is back in working condition and we are back home, I have no excuses not to write. Drat!

Until tomorrow,
Ann and Dennis

On Break

Sorry, I won't be writing for a few days. We are packing, and planning and getting ready for two weeks of relaxation and fun.

We will be back, when we are back.

Ann and Dennis

Motivation

Dennis is a very motivated man. When he really wants something, nothing will stop him. He proved this, once again, today.

I have mentioned that we live near Burlington Coat Factory, a close-out department store. He has managed to walk there and back a few times since we moved last spring. Right next door is a computer discount store. I believe that the only thing Dennis loves more than shopping for inexpensive clothes is electronic bargain shopping.

He and Raquel walked the 2/3 of a mile to and back from both stores today. He needed a new ink cartridge for his printer and decided to hike back and forth. Naturally, he came home with so much more.

I have a new robe to cuddle in at night and in the morning. He purchased the ink, and a Wii. His physical therapist, at one time, suggested a Wii, and Dennis finally succumbed to the idea. Actually, this is an electronic that I think both of us could learn to enjoy. Of course, first it will need to come out of the packaging and then we will need to hook it up. I think I should call Hamed.

Until later (we leave for London on Saturday)
Ann and Dennis

Vulnerable

For most of us, going to bed is really no big deal. When we decide to go to bed, we do just that - go to bed. For Dennis it is another chore he cannot do alone.

Actually, he occasionally does go to bed by himself, but it takes 2 to 3 hours when he is alone. He is into this beauty regime at the moment, and may decide to spend an hour in the bathroom all by himself. By the time he has finished primping, I am sound asleep and he has no choice but to find a way to crawl into bed.

Most of us don't think twice about pulling up the covers or rolling over onto our sides. For Dennis, without help, he really isn't able to do either of these routine acts.

Tonight, as I was helping him to bed, I was very aware of how difficult it is to ask for help. It leaves us so vulnerable. I was also reminded to practice my patience. It is so easy to become resentful.

Until tomorrow,
Ann and Dennis

Hospital Stays

An old friend is in the hospital with cancer. One thing I have noticed about getting older is the hospital stays seem to be longer. It also seems that the longer the stay, the shorter your life expectancy.

Last spring, my childhood friend died from brain cancer. She had several forms of cancer for the past 20 years, and successfully raised a family while fighting the disease.

I suppose I am at that age, where people I know will die.

I don't think of myself as old(er), unless I look in the mirror, feel my own daily body pain or someone I know gets sick enough to end up hospitalized. It hits home, very quickly, when people you love start dying.

I don't mean to be a downer, but this reality is not fun, is it?

Preparing for the Trip to London

It's Saturday and we are packing. We both find packing for a get away to be a big endorphin producer. Needless to say, we are both smiling.

I just hung up with Jane and Ralph to check on our Heathrow pickup, and everything is arranged. I have heard from Poppie and Lola, and we plan to get together while we are in central London. We have both discussed our must-do list, and our maybe list. As usual, we are negotiating everything.

Travel has become different for us over the years.

The first few trips we took, we lived in bathing suits. We both loved the beach and playing in the ocean.

Going to a beach is very difficult with a wheel chair. I suppose we could do the board walk thing, but it's not quite the same as walking barefoot in the sand. A few winters ago, while playing in the surf, Dennis went under and wasn't able to rescue himself. We were both frightened enough to call off playing in the ocean with any undertow or large waves for the remainder of our vacations.

Wee still persisted in winter island holidays with fewer ocean days and we began to explore complete countries. We flew, we drove and we took trains to take in as much as possible in three weeks through Ecuador, China and Spain. We were not able to hike and climb, but neither of us were all that inclined to do that, anyway.

Now we have decided to keep our vacations focused on one city. London is a natural for us. We have family and friends in London and we have both visited there several times before. We know what we do and don't want to see and do. We will have no guilt when we need to do nothing and just sleep in all day.

Neither of us knows what our next trip will look like, but we are both determined to travel for as long as possible.

Until Tomorrow,
Ann and Dennis

Happy Dennis

It evidently was a good day for Dennis today. I was working, and I missed the whole good day thing. It's a full moon, the kids are nuttier than usual and all of the usual suspects were in full dress rehearsal form. So, one of us had a good day, and one of us had a normal day.

Dennis woke up earlier today, and he and Raquel were in sync from the get-go. When I came home, Dennis told me that the two of them had fun today. They ate breakfast, walked to the hardware store and back, and made dinner.

I love coming home to a happy Dennis.


I just finished IM'ing with an Irish friend of mine currently living in London . It seems we will be able to spend a bit of time together while we are visiting. Naturally, my friends are women, and Dennis loves women. He has met Pauline, and he will meet Lola, I hope, and he will be in seventh heaven, surrounded by women.

And I will enjoy being with a happy Dennis.

Until tomorrow,
Ann and Dennis

A Weekday at Home

Dennis slept until 10 am this morning. I think he was relieved that he was not going to Rochester for the heart test, and was able to rest for the first time in quite a while.

I stayed home today. Raquel was not able to come in, and I had a sub lined up for work already. I, too, slept a bit later than usual, but had several hours of alone time this morning. Alone time is a gift that neither of us have much of, anymore.

I spent mine playing with Shiva, drinking an extra cup of coffee and doing yet another Internet search on what ails my man. I didn't find anything new, but there is a small comfort in knowing that I can google PD and find many others with questions. At least we know we aren't crazy.

It was nice to have an extra day off with Dennis at home. I know I am not ready to be his only care-giver, but I may be ready to cut out one day a week next year. Just one more thing to think about.

Until tomorrow,
Ann and Dennis

Hold the Mayo

Dennis suggested the title this morning right after he told me he was going to cancel the trip to Rochester. He is still feeling tired and dizzy. He also read up on the actual tests he would have received, and wants more time to consider the pros and cons.

The staff at Mayo was planning to pump radio active materials into his arteries. I don't really know what that entails, but I the idea sounds scary. Pictures of bombs and cellars come to my mind. This is not comforting.

I would not tell Dennis what I thought he should do regarding this particular test. I can't put it down here either, because he may read this entry. However, I let him know that I will support any decision he made. And I do.

A while back I wrote about no new big changes occurring at the moment. While there haven't been huge changes, as there were last year, life isn't the same as it was just one month ago.

Today, we are both weary.

Until the next time I write,
Ann and Dennis

Taking a Few Days

Not much, other than my hair color, has changed since my last post. I am going to take a break until we return from Rochester later this week.

Until then,
Ann and Dennis

Excuses

It has been a few days since I blogged. Dennis has been feeling a bit off for a week or more and he seems to be slower than usual to recoup. I am getting used to my new laptop and it's keyboard. Business at school is picking up.

Three excuses for missing two days of writing. Not bad, I must say.

The weather has taken it's dip into winter type temperatures, and we even had a wet splosh of snow this morning. Daylight savings time began last weekend and our body clocks are both getting older and slower. We are getting into the mindset of going to the Mayo Clinic again this week.

Three extra excuses, just in case the first 3 don't cut it upon reflection.

Dennis has been slower than usual. He is more tired than he was just one month ago. He had two "pull-downs" last night - one while getting ready for bed and the other while trying to get into bed. It seems he is trying to do too much, and too much gets smaller and smaller all of the time. In the meantime, I am getting a bit beat up, too.

I am hoping that all of this is temporary, and that everything will go back to our normal.


Until Tomorrow,
Ann and Dennis

Poop

Today is a poop day. I came home from work about 2 hours ago, and Dennis is still sitting on the toilet. I am not sure when he went into the bathroom, but I sure hope he has plenty of reading material.

I have never had such issues with going to the bathroom. When I need to use the bathroom, I go in, do my thing and leave a few minutes later. I try to be sympathetic, but it is a world I do not really understand.

None of this is entirely new for Dennis, but it has become more of a time concern. Tomorrow he has an appointment to see a therapist at the Courage Center. I can only hope that all of this commotion is over before his appointment.

What else can I say?

Sunday

Sunday was, hopefully, the end of the bad streak Dennis has been going through lately. While he had a full morning of acid reflux type up-chucking, he was able to rally to have lunch with my family.

November, actually late October until mid November, is birthday month in my family. First, in October, are Hamed's, then his girlfriend's birthdays. November starts out with my sister's, then my dad's, next my brother and finally my brother's partner. Add in election day this year, and we could have a pretty busy month.

I, for one, am so happy that someone decided long ago that one party was more than enough.

Anyway, Dennis was feeling better by the time Mom and Dad, Hamed and Ashely and the two of us were set to go out for lunch. Dennis got through the entire meal with just a tad bit of drooling and no acid reflux. It embarrasses him so, yet at the same time, he hates to miss a party.

Before I close out the computer, I want you all to know that he heard from the Mayo on the date for the next test. We return to the restaurant impoverished city of Rochester, Minnesota, next week for another 3 days. We are hoping for a total reprieve on the Shy-Drager sentence as a result of the tests.

Scallops

Dennis talked JoAnn into taking him to Byerly's yesterday to pick up some "Dennis" food. I found three jars of applesauce, to fulfill his latest craving, in the pantry, but thankfully no new cereal boxes. Naturally the freezer was filed to the brim with ice cream. Then, I found the mother lode in the fridge.

He bought scallops.

When Dennis and I first became a couple, he cooked occasionally. He had a few specialties he would create and he took pride in each dish. One of those special meals was scallops. His scallops were always melt in your mouth delicious.

He hasn't made scallops in at least 3 years.

Dare I hope? Was Dennis planning on making a dinner?

Yes, I dare hope. At this very minute, Dennis is cleaning the pan to sear and sizzle the huge darlings. This is the same pan that Raquel uses to make Dennis' scrambled eggs. She is young as does not know how to clean. We are teaching her, slowly. Suffice it to say, we often clean the pots and pans before we use them for a new meal.

We had decided earlier today that we would eat dinner around 5:00. We had a decent sized breakfast around 9:00, so 5:00 seemed to be our next getting hungry time.

It is 4:30.

I just turned around and noticed the water in the kitchen was running, but there is no Dennis to be found. This is going to take much longer than I anticipated.

Thankfully, Dennis and JoAnn bought that bag of Milky Ways for all of our non-existent trick-or-treaters yesterday.

Until Tomorrow,
Ann and Dennis

Halloween

Halloween is one of my personal nightmares. I didn't love it as a kid and have learned to hate it as a teacher. Being a behavior specialist has simply cemented the whole negative deal.

Minneapolis, as a school district, has put it's foot down and told everyone no Halloween celebrations this year. Okay, all that really means is rename it a harvest party and nix the costumes.

The kids were higher than kites these last two days, but there is a ton of good news.

There were only two candy related incidents at work, unless a seizure can be brought on by sugar.

We live in a secured condo, and there is no way there will be trick-or-treaters knocking on our door tonight.

Dennis bought one of our favorite types of candy to hand out to all of these non-existent kids.

Monday is a record keeping day, which means the kids have an extra day off to scarf down all that sugar before returning to school.

Okay, the Halloween curmudgeon is signing off for the day. I have a glass of wine and a milky way to keep me smiling tonight.

Until Tomorrow,
Ann and Dennis

Drooling, One More Time

I almost hate to write about this subject, but drooling has reared it's ugly head, once again. Actually, the topic has never really left our lives, but we do have days when it does go away for a bit of time.

It's back, and in full force, once again.

I have absolutely no idea what Dennis is talking about when his saliva has taken over. We can't have anything close to a normal conversation on these icky saliva days. I hate to ask him a question, because I know that I will not understand the answer.

I know I have said this before, but it bears repeating. Our relationship grew on story telling. I miss understanding what Dennis is babbling about. I miss hearing his repeated stories. I think he also misses me asking him for stories.

Tonight he will eat blueberry pie and ice cream, because his saliva does not interfere with this particular diet. However, I will not be put to sleep with his story. And believe me, his story telling is the best sleeping aid ever.

Until Tomorrow,
Ann and Dennis

Today

By the time I came home today, Dennis was feeling better. Well, not so much better that he was up and about, but feeling good enough to tell me he was feeling better.

He had to cancel two appointments today, and a metro ride. He wasn't able to get his catheter changed, and he missed a speech session. Both are fairly easy to make-up, but the catheter is a tough one to miss. By the time the six weeks roll around, he really needs a change. Now he will need to wait an extra 6 days.

I was in charge of calling to cancel and reschedule these appointments. Naturally, their offices open at the same time I am getting busy at work. For some odd reason, every time I call urology, I am always put on hold for quite a while. Today was not an exception to this unwritten rule. It is difficult to be waiting on hold while you are trying to do your job. I finally had to call home and tell Dennis he had to do this himself.

I don't like it when I cannot accommodate Dennis' requests. At the same time, when I am at work, I want to work.

A new conundrum to think about. Well, at least a new conundrum that allows me to write a few new rules that I can attempt to enforce.

Until Tomorrow,
Ann and Dennis

Just Another Monday

Dennis has had a few slow days, lately. Yesterday his blood pressure stayed low all day long. Today, once again, the drooling issue has kept him from living his life.

He has been using papaya pills to control his drooling. They seem to work like everything else, however. Somedays they seem to do the trick and other days they are a waste of time.

The blood pressure is more than likely tied to being tired. At least that is what my informal research is telling me.

So nothing is really new. That is really good news, though. There have been no falls to write about. We haven't been to the emergency center in a few months. His weight has stabalized and he hasn't had a full blown passing out episode in quite a while.

This is good news.

Until Tomorrow,
Ann and Dennis

Next Step, Medicare

A year ago Dennis and I were filling out his disability, social security, application. I was determined to fill it out with 100% accuracy. It wasn't easy, and it was not fun, but we finished it and submitted it last November.

We were running out of money. Well, we weren't really, but Dennis was digging into his savings regularily. This was money we had hoped to use for my early retirement. We needed this money and Dennis deserved this money. After all, it wasn't his fault that he could no longer work.

Soon, we will be starting the process of filing for the medical end of social security. It doesn't make any sense to me, but you must collect disability benefits for two years before you may apply for medicare. Since his disability was defined as begining in July of 2007, he is eligible this coming summer for the insurance part of social security.

I suppose if I start the paper work right now, it might actually be completed on time.

Until Tomorrow,
Ann and Dennis

Out with the Old, In with the New?

I do believe that Fridays have become out the question for the purpose of writing. I am tired, relaxed, and hungry and out of ideas by Friday. By Saturday afternoon, I have rallied and am ready to take on the world, once again.

This Friday afternoon, I had an extra excuse for missing blogging.

Dennis had a brand new laptop waiting for me when I came home from work.

I am not sure that I know the brand, but from here, I can see the box that says "The Computer is Personal, Again." It also is loaded with Intel, so I know it is PC. Actually, it's not cute, so I knew it wasn't a Mac. After Mac, everything else just looks like a dorky computer.

I, like most people my age, want to remain current on what is available electronically these days. We are fairly computer savvy. We are still far from being computer nerds, but we do alright by ourselves.

So, we are DSL, and wireless, and multi-computered (right now we have 4 computers for the two of us), networked, and fully programmed.

Set-up was going well until I tried to hook up to the internet. We have a protected wireless connection that requires a random certification code be entered. Of course, neither of us knows that number. Dennis remembered where he had written it down, but neither of us could actually read the code. I just now remembered that I had to enter a number for a while after we moved here, but I also just cleaned out the basket where I store odds and ends bits of paper.

So, I am back on my old computer, once again.

I purchased my first personal computer when I returned to college in my 30's. Apple was just beginning to sell home computers and Franklin Companies had copied their idea and had lost a copy right law suit. About the same time, one of my grandmothers had died and left me a small sum of money. I bought the Franklin and a printer, from an overstock type store, for around $800.00. This was more than 20 years ago.

The computer Dennis bought me cost just about the same amount of money as my first computer.

I needed a desk and hutch for my first computer.

Now I need a lap.

It most likely took me an entire day to put together my first computer. Then I know I waited for a long time before the computer would boot up. It was loaded with a word processing program a few games and a program that contained card and banner maker, so I could print out a low resolution birthday card in about 5 minutes. I was very modern.

Okay, I obviously can get so much more, in less time, but it all comes at a cost.

I am still very modern, but I still need to wait a while before I can actually use my new computer. In the meantime, however, I have 3 other computers at my disposal.

So, back to my excuse for not writing yesterday. In with the new is fine, but don't throw the old out with the new. Or throw the baby out with the bathwater. Keep the old until the new has proven itself. Or at least until you have figured the new one out. Or, in other words, I had a new toy and I wanted to play.

Until Tomorrow,
Ann and Dennis

Early Morning Appointments

Dennis has had a busy week of early morning appointments. He had speech at 9:00 on Tuesday, a 10:00 intake at the Courage Center on Wednesday and his regular 10:00 group at Struthers’s today.

Tuesday, I helped him get ready for an 8:30 Metro Mobility ride. Wednesday I helped him get ready for his Metro ride. Thursday, Raquel was supposed to come here by 7:00 to help Dennis. She forgot.

He was worn out and was sleeping hard this morning. I didn't attempt too hard to motivate him either. I didn't feel like getting out of bed an hour early 3 days in a row. I quietly asked Dennis if he intended to get up or sleep in and gave out a big sign of relief when he said he wanted to stay home.

I have tried to talk Dennis into making late day appointments. Either these are difficult to find or he is stubborn. Me thinks stubborn is the correct answer.

By the way, it looks like his next appointment at the Mayo Clinic, for his heart test, will be sometime in November. Stay tuned.

Until Tomorrow,
Ann and Dennis

Minnesota Health

When I started writing this daily blog, I thought a commitment of one year of daily writing would be a piece of cake. Since then, I have missed a day, here and there, but still, I have written 103 times since sometime in July.

Actually, this is entry number 104. Yes, I have considered quitting several times. I would like to quit right this minute, actually. No, I am not letting myself, or you, off quite that easily. At least not yet.

Dennis visited the Courage Center today. The Courage Center helps disabled people of all ages in many ways. Dennis is looking for something fun to look forward to each day. He is particularly interested in something athletic or artistic, and the Courage Center offers classes and open gym time for both of these desires.

We are lucky to live in Minnesota, with health care being highly valued for many years. We have the Mayo Clinic, University of Minnesota, Struthers, and The Courage Center, all of which have positively impacted our lives over the past year.

Thanks.

Until Tomorrow,
Ann and Dennis

Language

Today a teacher asked me, how was my boyfriend?

That is too strange a word for a fifty something to use to describe the person they live with and love. A boyfriend, by definition, should be a boy. Dennis, while immature much of the time, is not a boy.

I often call Dennis my husband. For me, that is exactly what he is, a husband. But, for those that follow the letter of the law, or the letter of the church, he is not really my husband.

Sometimes I use the term, partner, to describe our relationship. These days, however, many people assume I mean a same sex partner when they hear that term.

So, often, I just say that Dennis is my guy.

In the English language, there are so many words that can be used to describe just about anything. I would venture to say there are at least 50 adjectives that could be used to describe the word, "sun", for example. But, in some terms, the language is lacking.

There is no real word that describes our relationship. There is no known word to describe his condition.

Sometimes I feel as if there are too many words in our language. At other times, there simply are not enough words.

Just a simple thought for the day.

Until tommorow,
Ann and Dennis

Being Happy

I must have been laughing at sometime yesterday.

This morning Dennis told me he noticed that I was happy yesterday. He wanted me to know how much it warmed his soul to know I was happy.

I like to think of myself as a happy person. I believe I am happy most of the time. Lately, I guess, it seems like work to be happy.

Maybe that's not such a bad thing. Sometimes, in life, things just don't go the way that we would like them to go. Somedays, the game of life can be a bit stinky. A person could wallow in all of the bad days that come along.

That is just not me. Well, it is sometimes, but it's not the person at my core.

I will continue to work on being a happy person. I will continue to see what is right in life.

And there is a lot, you know.

Until Tomorrow,
Ann and Dennis

Lazy

"I am basically lazy."

The only dentist that I have ever enjoyed, said this to me, a few months before she retired. She was responding to my asking her how often she flossed. For some reason, those few words resonated with me.

She wasn't, lazy, of course. She owned her home on a lake, as well as the duplex where she operated her own business. She often ran the office, worked without an assistant or hygienist, and even developed her own x-rays.

She was ill. She had developed an unknown disease, and it had drained her of all of her energy.

Whenever I feel like labeling myself as "lazy," I remember this silly little exchange of words.

Today I was energetic. It was a three-day weekend and I had rested, relaxed, and visited on Friday and Saturday. This gave me a much needed extra day to attack a larger project - a closet.

I am happy when I am able to tackle a big task, but I am also okay with myself when I am less energetic.

And, now, aren't you happy for me, too?

And, now, I am too lazy to write anymore!

Until Tomorrow,
Ann and Dennis
Living with Shy Drager, Multiple System Atrophy, Parkinson's Plus or something else

Independence

Dennis and I went into Minneapolis for our Saturday morning breakfast. We have not yet found a local restaurant that meets our inner city appetites.

We ate at one of our old favorites, French Meadow Bakery, where I often run into someone I know. Today it was another teacher, off on a Saturday for a day with her sister and nieces.

It got me to thinking about independence.

Dennis is very dependent on others to help him with his day to day life. He still can dress himself, he still primps. He can, and does, get himself out of the flat and down to the front door for Metro Mobility. He is able to walk, with a walker, for a significant amount of time. He really can do a little of everything by himself, if necessary.

But, if he wants to accomplish more than one of those activities in any given day, he needs someone helping him. He is dependent on the aid of others.

Since, when I am not working, I am usually the one who is his helper, I have lost a different type of independence - spontaneous use of time.

For the most part, I am okay with my small loss of independence. There are times that I want time away that does not include work or chores. Dennis usually will find a way for me to get away for a few hours.

I can not do the same for Dennis. Sigh.

Until Tomorrow,
Ann and Dennis

A Way of Thinking?

When I first began teaching, in my mid-30's, I was a bit down on staff for taking personal days for vacations. It seemed to me that we had plenty of time off with our scheduled school breaks. Of course, I had just left a career where I worked 7 days a week, 51 weeks out of the year.

Perhaps, if had known then what I know now? Or, maybe it's more about age, than experience? What ever the underlying reasons, I now subscribe to the use-what-you-have before-you-lose-it, way of thinking. I actually believe, now, that those days are there for a real reason: sometimes you just need them.

We are leaving, in about a month, for a 2 week stay in London. We considered going over winter break, but Jane and Ralph are coming to the states, this Christmas. We don't know, right now, how many more trips Dennis has in his future. We hope it is many, but it may only be several.

I am good at my job. I am respected by my peers and my superiors. I also may be described as too outspoken, a bit arrogant, and a few other less attractive adjectives. But I am good.

I am confident, that the only way that I can continue to be my best, at work and at home, is to feed my own needs. I need, and want, this break and this time with my sister. I need Dennis to be happy, and travel makes him happy. Well, me, too, but that is just an added benefit.

I have set up this school's climate for success. I am confident, with a bit of luck, that everything will be just fine until I return.

Perhaps, after all, it is really only my confidence level that has changed?

Until Tommorow,
Ann and Dennis

Five Things I Love About Dennis

I have mentioned, a few times, that Dennis and I have a great relationship. I did not say it was perfect, but it is special. Here are just a few of the reasons that I adore this man.

1) He makes me laugh. Okay, most people can make me laugh, if they just try a tiny bit. I enjoy laughing and will go out of my way to be with someone that makes me smile. But Dennis is so 3 Stooges. I have learned to appreciate the strange, boyish and simple humor that gets Dennis giggling. His childish joy makes me laugh.

2) Dennis feeds me emotionally. You know how some people can find your desires and take advantage? Dennis does just the opposite. He nurtures my needs and wants. I cannot think of anything I could do or want that Dennis would not support.

3) He is cute. I love introducing friends to Dennis. He is charming and genuine. He is also a tad bit vulnerable, which us gals find so attactive.

4) His story is interesting. There is nothing boring about Dennis. He can still surprise me, every now and then, with one of his stories.

5) Dennis has a drive to live big. He is not interested in living the comfortable, cozy life. He always wants something more. He keeps me on my toes, and he can almost keep up with me.

Enough for now. I really do not want Dennis' head to get any bigger. It's difficult enough to boost his head and torso up each morning, without adding any more dead weight.

I do love this guy.
Until Tomorrow,
Ann and Dennis

Again, with the Questions

A good friend made an interesting comment on asking questions. She reminded me that when we ask questions we need to be precise. What is the question that we really are asking? And, then, unfortunately, there are simply questions out in this universe that have no real answers.

I have commented, several times, about not finding answers to our questions regarding Dennis' disease/syndrome. Perhaps there are no answers. Perhaps we are just not clear enough with our questions.

I have been reading up, again, on Parkinsonian type diseases, that are atypical. There seem to be many odd and rare, movement disorders, but none seem to match what Dennis is going through. Maybe I read too much.

I think we are searching for a definitive answer that tells us Dennis will live to be 100, and find many new ways to drive me nuts. We would both love this outcome, and we will continue, a-wishin' and a-hopin'. Perhaps, instead of asking questions, we will live in the moment, and enjoy each other fully.

Until tommorow,
Ann and Dennis
Living within the moment

A Lost Post

Shiva was so happy to see us when we returned from Rochester. She was all snuggly, and purring and hanging around the both of us.

I noticed, at the hotel, that many people brought their pets along. I suppose, the next time, we could bring Shiva.

I never thought I would say that about a cat.

Shiva is cool. She really likes both of us.

Dennis and I are quite different in many ways. I like to rough-house. I toss the cat, scratch the cat and cuddle with the cat. When she is with me, it is paramount that she adores all of my attention.

Dennis is gentle. He pets gently, is quiet and doesn't ask much. He loves when she lays on his feet and is happy when Shiva is purring softly anywhere near him.

Shiva needs our opposites as much as we need them from each other. Dennis brings out the soft and gentle side of me and I bring out emotional strength in him. Ying and Yang. We are compatible and complement each other. We keep each other strong, safe, loving, honest and just a bit off center.

Groceries

I was happy when Dennis told me this morning, that he was not leaving the flat today. It was a grocery shopping, and taking him to the grocery store is no longer easy. It's the wheel chair problem.

If we are only picking a few items, we can place a basket in his lap and fill it up. He doesn't mind being a pack mule every once in a while. If I remember to bring the plastic, reusable grocery bag, we can handle a larger load.

But today was a replenish the pantry and the freezer, shopping day.

A few weeks ago, we tried having Dennis push the cart, while I pushed him. It was moderately successful. While we did not knock over any displays, or old people, we did manage to force a few people to back up the aisle. We also irritated a few customers, and created a minor scene over by the bakery, when Dennis spotted the pies.

I wasn't relishing repeating the whole experience, so I did it, willingly, on my own.

Grocery shopping, like so many aspects of our lives, has changed for us since Dennis was diagnosed with Parkinson's. Some of these changes don't matter to either of us, but this is one that is a bit tough.

Dennis likes picking out food - especially junk food. I am not a huge fan of grocery shopping. To me, it just means more work. First you shop, then you carry, then you put the groceries away. As if all of isn't enough, then I am stuck with having to cook the stuff.


Enough whining already. I have a turkey to bake!

Until Tomorrow,
Ann and Dennis

Q and A

A woman I work with, Carol, is extremely ill and in the hospital right now. She went home, ill, two weeks ago, and has been hospitalized ever since. Her husband created an account with caringbridge.com, so that everyone that knows her can keep up to date on her progress.

No one knows the truth about why Carol is so sick. The doctors do not have any answers, her husband is in the dark and speculation runs all over the place.

I know that her husband, Ken, would like an anwer.

I believe I still want an answer. I have many questions, but am left totally unsatisfied with the answers we receive. Once again, I know that we may never receive any real answers, but I want them just the same.

Is this one definition of insanity?

Until Tomorrow,
Ann and Dennis

Mayo, Day Two

This morning, we dropped off Dennis' 24 hour collection of urine for a sodium count. No matter what you put urine in, unless you flush it down the toilet, it still smells. I was very happy to leave the jugs at the front desk, and take Dennis to his next test - the sweat box.

For the sweat box, a person is stripped naked, and then covered with powder, from head to toe. You are then placed in a large plastic box, and the heat is turned up. As you begin to sweat, the powder turns from white to purple. A typical MSA/SDS patient will sweat only in patches, and large areas of the body show no signs of sweat at all. They will be spotted with purple stains. Dennis was a mass sweat producer and came out of the test completely purple. He failed this test, also.

The nuerologists are fairly certain that Dennis does NOT have an autonomic disorder, or MSA. He still is diagnosed as having stage 4 Parkinson's, on a scale of 1 to 5. These doctors are sure there is something else going on, as is his local doctor.

The next step is yet another test for another study. This one will rule out MSA completely, or confuse the situation even further. He also will receive a referral to a movement specialist at the Mayo, hopefully providing further insight to the progression of Dennis' situation.

We both left today feeling a bit lighter. The death shroud of MSA has been lifted.

Today I don't feel like asking any more questions. I simply feel like sitting here, enjoying the good news.

Until Tomorrow,
Ann and Dennis
Living without Shy-Drager or Multiple System Atrophy

At the Mayo, Day One

Dennis and I are in Rochester, Minnesota, to meet with a few of the foremost doctors in autonomic disorders. We checked him in this morning for his first series of tests. Actually the first test is a four-for-one, type of deal. They are checking his automatic response to sweating. Probes are placed in different areas and a stimulus is sent through the probes. The idea is that sweat should naturally occur without the brain needing to interpret the stimuli. They follow the patterns of sweat, how much sweat, and so on.

Included are a variety of blood draws, before, during and after the sweat test. His blood pressure is also monitored while they do a tilt test - or tilting of the table on which he is laying. The fourth test I was never quite able to understand, but it was included, none the less.

After, we met with two neurologists. The first, an understudy of The Big Guy, spent an hour asking questions and giving more physical tests. He also helped us select a resturant in this gourmet deprived city. Later, we met with The Big Guy, and his understudy, and it was determined they just did not have enough to go on to make a final decision regarding Dennis' prognosis.

So, tommorow, another test and another meeting with both doctors. Check in tomorrow afternoon to find out what we have learned.

Until Tommorow,
Ann and Dennis
Living with ??????

His Day at the Mayo Has Arrived

We leave, tonight, after work, for Rochester and the Mayo Clinic. I checked out the review for the hotel we are booked into, and they are B-A-D! Yes, I know, we are there for the study, not a vacation. However, as long as we are not at home, isn't it normal to expect great things?

We are both a bit anxious. I love that word, anxious. It suggests both good sensations and negative emotions. That is where we are right now. I am not sure how I feel about the consequences of participating in this study. I know that any information they collect will benefit someone, sometime, somewhere. And that is fantastic. What I don't know is how much it will help Dennis. And that is what I sincerely care about right now.

I anticipate, at the very least, some good advice about how to live a good existence for as long as possible. I would love to find out about a remedy, and I will hold on to that, but it is not in my expectations.

I believe Dennis hopes to know more about his life expectancy and his quality of life. I imagine he would also like the best advice about how to handle his symptoms. And I am positive that he would as well like to hear about a cure.

Until Tomorrow,
Ann and Dennis
Living with Shy-Drager, Multiple System Atrophy and Hope

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

Saliva, Once Again and Again and Again

Our friend, Melinda came over for dinner last night. Rod, her partner, has been working nights for over a month, and she needed to get out of the house. We always have lots of laughs together, and I needed some good laughs.

Dennis disappeared into the master bedroom/bathroom suite about 5 minutes before she arrived. He only came out once to sweep through the kitchen and say hello during the five hours she was here.

Dennis loves Melinda, so I was surprised that he was so anti-social. I know he was busy "unconstipating" himself, but he also just sat on the bed and watched Tv quite a bit of that time. There was a tiny bit of pouting going on, too, due to a few words we had exchanged earlier. However, I knew there was more to the story.

He had been too embarrassed to come out and talk. He was salivating at a rate similar to a small waterfall. He wouldn't have been able to talk or eat, so he simply stayed out of the picture.

Perhaps the Mayo will have some answers for us. If not, the Struther's will have to hustle on the referral to the specialist for Botox injections. This issue needs to be resolved. Soon.

Until Tomorrow,
Ann and Dennis
Living with Shy-Drager

Club CREATE

Dennis went to Club CREATE today, and met another man with Shy-Drager. John, was diagnosed with Shy-Drager eight years ago. He was given, at that time, one year to live. Yet, he was there, today, talking with Dennis.

Hope abounds!

Going to the Struther's Clinic once a week for Club CREATE, wasn't something Dennis really wanted to do this year. He attended a few times last year, but always came home each time with mixed feelings. He has gone most Thursdays, since I started work in September, and each time he seems to like it better.

It must be difficult to join a group where everyone is "sick." At the same time, there must be some comfort in being around people who are suffering similar symptoms as you.

I have picked Dennis up a few times, and I must say I understand why it would be encouraging and frightening at the same time. All of these strangers are everywhere with symptoms that are worse than your own. On the other hand, may are just different. Or maybe the are honestly in better shape than you, but you do not see yourself when you see at the other individual.

I can't relate, totally, to what Dennis is going through, but I can and do have empathy. Next, add to that all this love stuff, and I think I get it pretty well.

I want Dennis to live 8 years beyond his life expectancy. Happy, healthy and loving years.

Until tommorow,
Ann and Dennis, living with Shy-Drager, Multiple System Atrophy and hope for many more years together.

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

Slowester

I was visiting a classroom today, and they were learning -er and -est. One of the examples the teacher gave was using the word slow. You know, slow, slower and slowest.

What is the next step after "slowest?" Slowester? That is where Dennis is at, right now. Slowester.

Even though I observe it right before my eyes, I cannot comprehend how laborious every single act of movement is for Dennis. A simple act that takes most of us a moment or two can end up carving out two hours for Dennis.

I stopped at the grocery store after work today to purchase a few items. When I arrived at home, I put everything away, but I overlooked the Coke. I moved off to change clothes, put dinner in the oven, and start up my computer. Next I checked my email - 24 messages, delete 20, read 3, save 1 for when I have more energy - then off to write my blog.

In the background I hear the groaning and grunting of Dennis. His back has been hurting again, and he claims making noise is his method of coping with the pain. Therefore, I have been trying to ignore these annoying noises, and did not pay any attention to what he was doing. This is my way of coping.

Finally, I turn around and see him bent over in front of the open refrigerator. He had spent the last 30 minutes opening the box of Coke and then putting it in the fridge.

Dennis wants to do as much as he is able by himself. I admire the heck out of him for this. It is difficult, however, when I can do something in 30 seconds that takes him up to an hour to accomplish, not to step in and take over. Some days, I do take over. Some days, I am happy to let him do it all on his own. And then, there are some days, that I just want everything to be like it was 3 years ago.

Until Tomorrow,
Ann and Dennis
Living with Shy-Drager, MSA and Living the Slow Life

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.

Work Me

Today this entry will be all about me. Well, at the least the Day Me, the me most of you don't know. This is the me that keeps me out of trouble, from 8 to 5, five days a week, 10 months a year. In other words, it's about me and work.

I am responsible for the "climate", (no, not the temperature) at school. I am the one who is held accountable for all of the students knowing the rules and living by the rules. In return I dole out (positive and negative) consequences for their choices. This also means, I am the one who is held responsible to make sure all of the teachers spend the time to teach the kids the rules. While I am able to reward them for doing their job, I am not able to hand out negative consequences.

Guess which one is the more difficult?

One of my responsibilities is to pull off a monthly reward celebration for children who honor the rules. While these happenings need to be motivating enough for children to look forward to earning, they don't need to be extremely memorable.

Last year we had a policeman bring in his partner, the police dog. I was preparing for the guy to show some of the moves the dog could make. At the very least I expected the dog to demonstrate some jumps. Unfortunately, the dog was only for show, and the policeman just talked to the kids. Toward the end of an agonizing 20 minutes, he eventually took out a rope and played tug-of-war with the dog. This is what the kids will recall, the last 30 seconds of the event.

See? The kids looked forward to seeing the police dog, but it definitely was only slightly memorable.

This year we will start off, on Tuesday, with Beach Blanket Bingo. We have Bingo Cards using all of the words from our expectations (rules). Sandy, the Jenny Lind All Star Staff Member forever, will read the words over the loudspeaker. As kids win at Bingo, they will come to the center of the school to collect their Grab Bag Prize. Then it's over. At least until the last day of the next month.

Anyhoo, that is what I do for about 20 minutes, out of one day, out of 197 duty days, of each school year. This means that you now know just a teeny bit more about me. Well, at least my Day Me.

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.

Been Feeling Sickly

I am aware that I am a day or two behind on my blog writing. It has been a hectic week, work wise and at home. If that was not enough, I have been down with the flu for a few days. Actually, today is my first day out of bed since Wednesday.

But, as the saying goes, life goes on!

Dennis had a visit to his Parkinson's doctor on Thursday. Unfortunately, I was not able to go along, and his depression was not dealt with, once again. It's time to make an appointment with his general practitioner, who is warm and empathetic. Dr Nance, while an expert in Parkinson's, cannot be described using either of those words, even if you stretch the truth. She just poo-pooed his needing anti-depressants. My feeling is his life is tough enough right now. He shouldn't need to feel so depressed when there are perfectly good medications to help him.

He was able to find out, however, that Dr. Low, the doctor he will visit in Rochester in 10 days, is the world expert on Shy-Drager. I suppose I should say, he is the leading expert on dysautonomia, with Shy-Drager being one, and the worst, syndromes of the group. At least this is what Dr. Nance told Dennis.

Me, I am feeling somewhat better. At least I was able to get up today and shower. I have typed this entry and still have enough energy left to sit up for a bit longer. Tommorow I should feel good enough to even enjoy writing my entry.

Until Tommorow,
Ann and Dennis

Change, Change, Change

Things are changing quickly, once again. Dennis diet is changing and so is his ability to swallow. His blood pressure was low again this afternoon (60 over 40 something) and his PCA (my friend, JoAnn) was frightened. She is a new, and reluctuant participant in the Shy-Drager care-system, but she tries hard and loves Dennis because I love him.

I do "change" easier than Dennis does "change". There are even times that I thrive on change. But I am getting tired of adjusting and I can't imagine how difficult it is for someone who finds change more than a bit challenging.

Tonight I came home, after finding out around 24 hours ago about the drastic change in diet, and made a well done pasta dish. I just had begun to help Dennis adopt and adapt to al dente pasta. We are now back to mushy pasta with ground meat, or smooshy veggie, sauce.

Change does not have to be difficult. All I really need to do is go back to the basics, perhaps. Over cook, chop, chop, chop and cook a bit longer. Add salt, pepper if you are feeling risky and then cook a bit longer. Still not mushy enough? Cook just a little while longer.

Until tomorrow,
Ann and Dennis
Living with Shy-Drager, Multiple System Atrophy and a bad spell/grammer check (so sorry)

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

My Strong Man

Dennis woke me up this morning with a song. He was off key by at least 2 1/2 notes, but he made me laugh. He is feeling better, much better, thank you very much.

Today, he and Raquel walked over the highway to the Medical Supply Store to fill his prescription for a saliva extractor. He actually walked all the way there and half of the way home, before needing to sit in the chair and be pushed. Tommorow he will return to the same clinic to have his catheter changed. His plan is to walk, once again.

Dennis also signed up for 2 groups at the Courage Center. The Courage Center is a center for advocating and providing for the disabled. They offer all types of classes, including several sports related groups, which interested Dennis.

He purchased some type of floor bike type pedaling contraption to keep his legs strong. He is lifting weights with Raquel. He walks in the house most of the time, always with the support of his chair or his walker.

Dennis has decided that he wants to live to 70. His prognosis is to live for 1 to 7 years, but he has determined that he will beat the odds and live beyond his life sentence.

Hooray for this man's courage and fortitude. I admire his desire to work as hard as possible to live a long and happy life. I do love this man. How could I do anything else?

Until Tomorrow,
Ann and Dennis
Living with Shy-Drager, Multiple System Atrophy and Dennis' will to live.

Saliva, Once Again

I must go back, soon, and count how many of my blog entries concern drooling. It is one of the troublesome symptoms for Dennis. It affects his speech, his eating, and his desire to eat a meal with others. It embarrasses him, too.

The pills that work for so many, according to his doctor's nurse, do not work for him. The eye drops that have the surprise affect of cutting down on saliva, are not working either. Today, after work, I will stop at the hospital health store and fill his prescription for a home suction unit.

I know that this is not a life threatening symptom, at least not at the moment. So many of his other issues are more important, health wise, to manage. But this one, this icky saliva issue, affects his quality of life more than the others.

We are both hoping that this suction thing will work. If it doesn't, all that is left to try is Botox shots to freeze the glands.

I am afraid, if he has to turn to Botox, that he will come out looking like Cher or Micheal. Ick!

Until Tomorrow,
Ann and Dennis
Living with Shy-Drager, Multiple System Atrophy and saliva, and saliva, and saliva

Saturday Breakfast

My house cleaner, Leticia, comes every other Saturday morning and stays for a few hours. Dennis and I take this opportunity to go out for breakfast and do one or two errands. We could do more, but I firmly stand by my rule of no more than eight wheelchair transfers in one day.

I seldom read the paper, and when I do, it’s usually the variety section and maybe I will read a comic strip, or two. I simply do not care to read about everything that is going wrong in the world. I even dislike the paper more right now, because of politics. After all, I made up my mind a long time ago about who gets all of my votes this November.

By now you know that Dennis is a s-l-o-w eater. He is also a big eater, when he can eat. I am not a big breakfast eater and matter how hard I try to slow down, I am still done way before him. This means a very long time in the restaurant to sit and watch Dennis eat. Thus, the newspaper gets read from front to back simply to maintain my sanity. Thankfully, the Saturday paper is more entertainment than news, and the fluffy stuff is easy to forget, minutes after you have finished reading.

Okay, so enough about me.

As Dennis eats slowly, he also spills and splatters and makes a big, old mess. Occasionally, I lean over with a wet napkin and wipe his face off. All in all, we have worked out a simple system to keep Dennis from looking like a complete mess when he eats.

Yesterday, Dennis ordered a blueberry muffin to go along with his corned beef and hash, hash browns, and two eggs. An hour and a half later, he was done, the bill way paid and I pulled his chair out from the table. In his lap, was half of a blueberry muffin, the paper from the muffin, and a few odd and ends bit of hash browns.

The newspaper, which kept me from crawling the walls while he ate, now served a second purpose. I laid the paper on his lap and wheeled him casually out of the restaurant. When he stood up to get in the car, he left a very nice breakfast for a few of the local squirrels and birds on the ground. Very generous of him, don’t you think?


Until Tomorrow,
Ann and Dennis
Living with Shy-Drager, Multiple System Atrophy and Sweet Saturday Mornings

Fever

It has been a very difficult week. First the problems with the catheter, then very little sleep for either of us for two nights. By Friday morning I was exhausted, but Dennis was in less pain. The bleeding has also stopped.

When I came home Friday, Dennis was laying in bed shivering, under our very warm down comforter. The cover was actually jumping around with his shivers. At the same time his face was burning up. I don't know his actual temperature, our digital thermometer had run out of steam, but I know he was above normal.

I covered him up in another quilt, and gave him a sleeping pill. A few hours later his fever broke, and he was able to sleep through the night.

We haven't said it aloud to each other, yet, but I believe we are both concerned that he is beginning to lose the ability to regulate his body temperature. I sure hope I am wrong about this. I don't want to expect the worst, but these days, the impossible seems possible.

Tommorow, a lighter entry. I promise.

Until Tomorrow,
Ann and Dennis
Living with Shy-Drager, Multiple System Atrophy and an unfair disease

The Blood is Done

Bloody Wednesday went well into the wee hours Thursday morning. I won't go into the horrid details, but at 1:00 AM I finally turned on my computer so I could request a sub for the day. We were planning on going to Urgent Care as soon as they opened in the morning.

Dennis was up, keeping me awake, naturally, all night. He was drinking water, flushing everything out, and emptying his bag constantly. I don't suppose I need to mention that he was groaning loudly all the time. After all, he was dealing with his very manhood. Finally, around six o'clock, things were looking back to normal, and we knew we did not need to go to Urgent Care.

It ended up being a long night, with a few minor falls, lots of clean-up needed in the morning, but at least we did not end up in the hospital.

A girl can always be grateful for any day not spent in the hospital waiting room.

Until tommorow,
Ann and Dennis
Living with Shy-Drager, Multiple System Atrophy and a lot less blood

Bloody Wednesday

I came home from work today to a sickly boy and a bloody bed. Seems Dennis' catheter had partially pulled out and had to be pushed in by an inexperienced PCA. He had quite a bit of bleeding, both in and outside of the catheter. He was also in a ton of pain.

Dennis has never been great with pain, but this must be extremely horrid for him. Not being a guy, I can't imagine, but I guess I would compare it to labor pains. Since I have never had children, I can't really be completely sympathetic, but I do have lots of empathy for him.

I arranged him in bed every which way for about an hour. First we put a pillow under one leg, then both legs. That didn't seem to help. An ice pack and a handful of Advil didn't do much for him, either. Sitting up with the new bed pillow wasn't cutting it, and neither was laying down. Finally, I gave him a sleeping pill, shut the blinds and ordered him to sleep. He is laying on his side, ice pack carefully placed, and pillows arranged to keep him in place.

There is an alternative out there, to the catheter and foley bag, but it involves surgery. Surgery really is not an option for Dennis.

I want to make this all better for him, take away his pain and make him whole again. Today it is difficult to accept that I am unable to do any of this.

Until Tomorrow,
Ann and Dennis
Living with Shy-Drager, Multiple System Atrophy and lots of pain and blood

Out and About

The weather has been perfect this week, in Minnesota. The temps are in the mid-70's and the sun has been shining brightly. Who could ask for anything more?

Yesterday Dennis and Raquel went to Miracle Mile. It's one of the original strip malls in the states. It has changed over the years, but it has managed to keep every store front filled for over 30 years. It is also just a hop, skip and a jump from our new home.

I love that Dennis wants to get out and about. Even more so, I am excited when he is willing to go places without me. Dennis has trust issues, and he is trusting Raquel more and more every day. Just last week, he let her walk with him to a hair stylist shop in our 'hood. He takes his wheel chair and uses it as a walker. This gives them both a safety net. If he gets tired, he can always sit in the chair and be pushed.

He is a man with tons of gumption. He is a man with tons of pride. He is the man of my dreams.

I am a lucky woman.

Until Tomorrow,
Ann and Dennis
Living with Shy-Drager, Multiple System Atrophy and Love and Admiration for each other

Slow

"I am getting slower", Dennis mentioned to me the other day. I suppose he is, although since I am with him everyday, I am not sure how much I notice the degree of his slowness.

Dennis used to be quick. He was a darn good tennis player, or so he tells me. Personally, I know nothing about the sport. I do know that he played doubles every week, and his team often one.

When he was slow about something, it was more about being methodical. Paying bills, for example, always took a bit of time, but there was a pattern and method behind the way he read then payed the bill.

I have mentioned how slowly he eats, and how long it takes him to get dressed before. There are other places he has slowed down, and they seem to be troublesome to him.

Getting in and out of the car, for example, has become a time consuming event. Moving from one setting to another usually takes quite a chunk of time. Dressing, showering, simply turning on the computer have begun to use up quite a bit of his day.

Dennis really wants to help out and do his fair share of work. It is difficult for me not to do everything. It's not that I want to do it all, I do not, but I hate to see him struggle with everything. I want everything to be easy, again, for my hunney bunney, and I just know they never will be, again.

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

Dennis Misses Me

Dennis got a big old case of the "lonilies" this week. I came home from work each day, just a bit more exhausted, as my cold also worsened. He just wanted to spend time with me, and I needed to spend time sleeping.

It looks, however, that we may soon be spending a week together in Rochester. Oh the other hand, it may end up being one day now and a week, again, later. The letters and emails have not been overly specific. I imagine we will need to make a phone call this week to finalize everything.

We have also booked our airline tickets for London. We will leave the weekend before Thanksgiving and will stay for the whole next week, also. This gives another two solid weeks together.

Of course, winter break will come a few weeks after we return from England. Add on another two weeks to our spending quality time together.

So, my dear Dennis, you may miss me right now, but by the end of December, I am sure that you will have had your fill of me. I love you, sweetie.

Friday Woes

I woke up about 1:30 am with an ear ache. I haven't had one of those in years. Since it was pounding so hard, I finally got up, took one of Dennis' "light" narcotic sleeping pills and moved to the couch. I konked out, and decided not to go to work on Friday.

Kismet, it turns out. Raquel showed up late, again. I believe she parties rather hard on Thursday nights, because she often shows up late on Fridays. I stayed in bed, but she arrived about 9:30, according to Dennis. She is suppose to be here at 8:00. Dennis surprised her by telling her to go home, that I had stayed home for the day because she was late.

It is difficult for both of us to be hard on people. We both look for the best in others. The problem is, we just talked with her last Monday, because she had been late last Friday, too. I gave her a hard talk when she came on Monday. I was surprised she was late, once again, so soon.

Dennis told her he would love to see her on Monday, at 8:00, but if she could not be there by that time, not to bother. Maybe this time, she will get the message.

By the way, my ear ache has cleared up and I am just left with the yucky parts of a cold. Oh, well.

Until Tomorrow,
Ann and Dennis
Living with Shy-Drager, Multiple System Atrophy, Autonomic Disorders and a cold

More About Saliva

I picked up a new prescription today for Dennis. It is actually an eye drop, but it seems to work for controlling excessive drooling, too. We don't care what it was originally made for, we just hope it works.

I was finally able to make contact with the nurses at the Struthers's Clinic. We talked about saliva pumps, this new med, depression and blah, blah, blah. I am pleased that the staff at the clinic really worked hard to find new solutions to this exasperating problem.

Dennis has also been scheduled for a video swallowing session at the hospital. We have no idea what this involves, but I am imagining all sorts of things that I never thought about previously. Do they put a camera down his throat? Do they measure the amount of saliva produced and then swallowed? It seems a peculiar test to me, but one I am anxious to learn more about.

I hope we will find an answer to the saliva issue. I have discovered that both of us can deal with answers that work, no matter how weird they may seem to the rest of the world. Just, please, keep managing the symptoms. We can live with the responses.

Until Tomorrow,
Ann and Dennis
Living with Shy-Drager, Multiple System Atrophy and Drooling and Saliva

Delivery

I believe we have finally found our pizza place in our new neighborhood. After living in the inner city for so long, we both are pizza spoiled. There are so many small pizza joints in the city, and they are usually terrific. In the 'burbs, although we are only 3 miles out, it is pretty much chain restaurants or mediocre hamburger joints.

We are semi-food junkies. We like fresh ingredients, and we both hate the dull and mundane in our food. We don't eat delivery very often, but Wednesdays and Fridays are my difficult days, and ready made or delivery comes in handy once in a while. I know, this makes me sound lazy, but I like to think of it as realistic.

There is a great grocery store near us that sells daily dinners, for when I am feeling lazy, but they are, at best, acceptable. The meals fill us, but there is only a little joy when we are actually consuming the dinner. I have used them once or twice for dinners, but they are not cutting it for me.

The pizza joint we found today has been a staple of the University area of Minneapolis for years. I have eaten take out, delivery and eat-in pizza and hoagies at the original spot for many years. I have never been disappointed in their product in the past, and I wasn't this time, either.

I know, this is no big deal, but it is important to know where to reach out when you only have so much energy left. Today, the only left over energy I had was to dial that telephone number. And today, they delivered exactly what we needed - a good product at a fair price.

New Interventions

The nurses at the Struthers's Clinic have been working hard just to find solutions to Dennis' swallowing problems. No one is thrilled about him taking so much Rubinol to control his drooling, since it has the potential to lower his blood pressure even more. In addition to that, it does not appear to be working as well as we would hope.

Today one of the nurses called me and told me that we should try a new medication. It actually is for eyes, but somehow, if put under the tongue, it also works, for some, on controlling drooling and excessive saliva. He is also scheduled for a swallowing video session at the hospital. Neither of us has any clue what this involves, but Dennis is more than ready to give it a go.

I am amazed, sometimes, how much people are agreeable to help Dennis. So often, we focus on what doesn't work in health care. I can attest to the fact that there are many individuals are out here, wanting only to help others. We have found most people want to be humane and treat each individual case as exactly what it is - individual.

As skeptical as I am, I must say I am pleased with what I have seen happen, for Dennis, in our medical system. I will never say I like the final outcome, but I am pleased with the care he has received, so far.

Until tomorrow,
Ann and Dennis
Living with Multiple System Atrophy, Shy Drager and new possiblities

Mayo Calls Again

The news came today, via email. Dennis has been accepted for the Multiple System Atrophy/Shy-Drager study at the Mayo. We will be in Rochester for three days for several tests and studies. They will pick up the bill for all the work done in the study and a hotel room.

A three day vacation! Whoopie! Oh, and more information to give to all of you! And more tests to give to you, my loyal readers. I am loving this!

Dennis was sent a 10 page form to sign, with every test and procedure outlined. Some of the tests I can understand, a few, I have a vague idea of what they are talking about, and others totally confuse me. What cracks me up is, they bothered to tell us that 40 ml of blood equals approximately 3 tablespoons of blood, but they didn't explain catacholamines.

I imagine the docs don't believe we would ever understand, so why bother. Hmmm, they don't know me, do they?

Dennis is, expectedly, very pleased. He feels that knowing where he is on the life expectancy spectrum will make him feel better. I am pleased that he will be seen by someone who specializes in this strange and rare disease. I am sure the doctors are searching for answers, and they will be pleased to have one more person to study. Perhaps, the world at large will one day be pleased because there are answers that won't lead to a death sentence.

All in all, I would say this is good news for a whole lot of people.

Until tomorrow,
Ann and Dennis
Living with Multiple System Atrophy, Shy-Drager and good news

Dennis Friendly Furniture

We closed on our old home a week ago. We came out with a bit of cash, so we decided to spend it on shades for all of our windows and Dennis friendly furniture. So what is Dennis friendly furniture, I hear you asking.

First of all, it is not comfy, curl up on your couch type of stuff. Right now, until the new furniture is delivered, we have an overstuffed chair and a half and a couch. If we pile up a pillow, then a hard seat from an office chair, and another pillow, he can sometimes sit on one end of the couch. But, if he is having a tipping over type of day, even that won't work. And forget the oversized chair. That chair almost eats him up. Once he is in that chair, there is no getting out without lots of help.

Second, Dennis friendly furniture is not covered in man made fabric of any type. No matter how many times I ask him to not eat in bed or on the furniture, it keeps happening. And, since he is a messy eater, the furniture must be incredibly stain resistant.

So, it's highly structured leather furniture that we ended up buying. He can slide his butt forward on the new chair and the arms are stiff, and at the right height to complete the process of standing up. In addition, being leather, it can be wiped up easier than woven fabric. At least, that is what I am hoping.

In a few weeks, we will have almost everything we want to make our new condo comfy and warm. The best part is that we actually had the money, from the sale, to purchase everything, paid in full. Cool.

Until tomorrow,
Ann and Dennis
Living with Shy-Drager, Multiple System Atrophy and (pretty soon) Dennis friendly furniture

Sunday, Awful Sunday

Today is the worst day of my life. Actually, I have had approximately 50 of these horrible days. It's the first, of way too many, football Sundays. If that is not enough to push a sports hater into a deep depression, tomorrow is Monday Night Football! Oh, yay.

So begins my season of hiding in the bedroom, Sunday shopping and cooking. The cooking thing worked well at our old home because the kitchen was actually in a separate room. Now, though, our kitchen is about 10 feet away from our monstrosity of a television set. Naturally, Dennis is in his office, merely listening to the TV, so the volume is on extra loud.

I have never enjoyed sports, but football is by far one of the stupidest sports that I can possibly imagine being played. Everyone yells throughout the complete game. Either it's "Go, go, go!" or "Boo, boo, boo." Even the announcers shout. Don't they know they have a microphone sitting in front of their faces?

Then there are the breaks. It appears that football players must not be very bright, because every other play, they seem to need a pause to speak with the big guy. Meanwhile, the rest of us are required to view the last play over, and over, and over. As if watching the repeat of a 7 second play isn't dreadful enough, we also have to endure all that shrieking by the announcers, again.

Okay, Dennis will tell me tomorrow, after he has read this, that I am whining, once again. I suppose I am. But no matter how many times he tells me I am whining, I will never, ever like such a foolish sport. At least not until I make as much money as that fellow sitting on the side lines. He never has to play because he got injured. Now that's a position in football that I could, maybe, enjoy. And then, maybe, just maybe, I could stare at a game. Of course, the volume would have to be turned off.

Until tomorrow,
Ann (and Dennis)
Living with Shy-Drager and Multiple System Atrophy

The Weekend

My sister Jane, and her husband, Ralph, are in Minneapolis from London, for a few weeks. Last night we got together for dinner at our new condo. They stayed quite late, at least for me, and Dennis, and I slept in this morning. I haven't slept until 8:00 for quite a while.

I could have stayed in bed all day, but Laticia, our bi-monthly house cleaner, was coming this morning, so we had to get up. She is so wonderful, and I love the way the condo looks when she has finished polishing, vacuuming and scrubbing the place. I also enjoy spending a few minutes, just catching up with her life.

I could do my own cleaning, but knowing that I can have five hours free, twice a month, is worth any price we pay. Dennis and I now go out for a long breakfast twice a month and then do errands with each other. Then I sit on my behind for the rest of the day. I love these Saturdays.

Today, we spent the last of our small profit from selling the house. We purchased honeycomb blinds for the condo. Although we love these huge windows, we also know the sun will bleach out our furniture and rugs. It also interferes with watching TV on our oversized, expensive and digital, surround sound set up.

I know this post has covered a whole bunch of topics, and it is a bit rambling. Well, perhaps more than a bit rambling. I guess, just to put a rope around this post, I am trying to say that today life is great. I have my sis here, a great house-cleaner, brand new blinds coming, and I had the time to write this post.

Until Tomorrow,
Ann and Dennis
Living with Shy-Drager, Multiple System Atrophy and a bit of time on our hands.

My Sister is Home, for a While

My sis and bro-in-law are here, in Minneapolis, for the next two weeks. They live in London and we don't see enough of each other. They have not seen our new place, or met our new kitty, Shiva. We will have lots of stuff to catch up on, but mostly, it's just about hanging out together.

Jane and I have had our ups and downs, like any sisters do. But, for the most part, we have always gotten along. We have been there for each other when life stinks and when life is worth celebrating. We have, for the most part, accepted each other's partners, and supported each other when partners have been great or not so great.

Right now, we both have wonderful partners. Ralph, Jane's new husband, is adorable. Furthermore, he has this really cute English accent. What is best, however, about Ralph, is that he loves my sister.

Jane also adores Dennis. And, lucky enough, Dennis thinks she is pretty great, too. They have been there for each other in many ways over the past few years.

Jane and Ralph have many commitments while they are back here, in Minneapolis. Hamed, my parents, us, friends and just staying alive will keep them pretty busy. But for a few weeks, I will have my sister in town, Dennis will have one of his best friends in town, and we will both have Ralph around to make fun of, in our Minnesota nice way.

It's nice to have family.

Until Tomorrow,
Ann and Dennis
Living with Shy-Drager, Multiple System Atrophy and far away family at home, for a bit

Don't you hate the game of phone tag?

After Dennis' day of not being able to communicate, I called the Struthers's Nurse Line to see if we could find a new medication to deal with his drooling issue. He had talked to a nurse at the clinic, but she could not understand him. I called when I returned home from work, but, naturally, they were done with work, too. Consequently, I left a message, on his behalf, and asked them to return my call.

They returned my call at 9:00, when I was working. It is also when they are working. It is, as well, the time when I am unavailable to take phone calls. It is the same time they are unavailable to take phone calls. Therefore, we play this new age game called "phone tag."

When I am at work, I am lucky if I remember to eat my lunch. I am having a great day if I remember to drop our mail off in the mail bucket at work. I do not have time to think about my home life. Yet, everyone expects me to do both. I am supposed to make appointments, between 9 and 5, for dentists, cat care, Dennis care, oil changes, nurse line calls, and blah, blah, blah. At the same time I am supposed to do my job.

Okay, everyone that works goes through this experience. We all work the same hours, and we all are busy when we are working. We all play phone tag and, I suspect, we all hate the game. I am not used to being a care-giver. Care-givers, be it parents, boomers taking care of parents, animal lovers or whatever, all have to be available 24-7. My only question is why is 24-7 communication always between 8 and 5? Please, I need answers to how to be every thing to everyone, all of the time, and especially between 8 and 5. And, what are the rules of phone tag?????

Until Tomorrow,
Ann and Dennis
Living with Shy-Drager, Multiple System Atrophy and phone tag games

Dennis' drooling has gone from frustrating to exasperating. He can't seem to utter even two words without having to swallow. Yesterday, he was unable to communicate with the bank and make the transfers to pay-off our loans. Today, when I came home, he was attempting to talk to a nurse at Struther's, his clinic, and they could not comprehend anything he was saying.

He had been begging for help with the drooling. The medicine he is taking is no longer working, but they have limited medications for this problem. His Parkinson's doctor is reticent to give him a stronger dose, due to blood pressure concerns. His general practitioner, however, did encourage him to increase the dose and experiment. The whole point is moot however, the medicine simply does not work, anymore.

Dennis carries a towel with him, almost every where he goes these days. This towel is just to mop up the drool that is continuously sliding out of his mouth. As I have mentioned before, he is not much fun to watch eat, and most of this is due to the drool.

This is really getting exasperating, for both of us. I want, so much, to understand all that he says to me. I desire to enjoy a meal with him without cleaning his face three or four times. I need to be able to go out to eat with him, without anyone either staring at him, or avoiding looking at him. I hope to have a conversation with him without asking him, three or four times, to repeat himself. I wish that he could be understood by others, so that I am not always interpreting for him. I need him to feel capable, once again, and not always dependent on someone else.

Is this asking too much?

Until Tomorrow,
Ann and Dennis
Living with Shy-Drager, Multiple System Atrophy and way too much drool

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