An Extra Day Off

Today is President's Day, an extra day off. Dennis asked his PCA to come in late, rather than not come in at all. I am going to be care free, for a few hours.

I have been sitting here for about 15 minutes, re-reading that sentence. I guess I have nothing else to say right now. So, there it is. I will be care free for a few hours. And that is enough.

Upping the Anty

One of the reasons that I wanted to write a daily blog* is to track how Dennis is doing, physically and mentally. It helps me to keep aware of his past, present and future.

I do recall writing about that dreaded call out when I return home from work not too long ago. I didn't realize it was as recent as a week ago.

So, when I came home today and heard Dennis yelling, "Help!", I knew it was time to put my foot down, once again. Oh, how I hate doing this and how he hates hearing this. But it is a natural consequence. He needs to stay where he is after his PCA leaves and until I come home, or we will need to find someone to be here every minute I am not at home.

Right now it has been close to 2 hours that he has been on the floor, in one position or another, because his body is fatigued. He had held himself in place for an hour waiting for me, and he wants to just stay in one place while he recoups. I understand, but I cannot let this happen again.

His falls have reduced since last year, but now he has another non-negotiable regarding taking care of himself. Once his PCA has left, he needs to stay in bed, his chair or wherever he is put, until I return home. Otherwise, we will need to up the anty, once again.

Until later,

Ann and Dennis

*I tried, so hard, to write daily. It was a goal that I was unable to keep.

Tomorrow

Tomorrow, it is back to work for me and botox for Dennis. Hmmmm. What's wrong with this picture?

Dennis is going to try botox for his drooling. I am not sure if it is suppose to cut down on the production of saliva, or cut back on the saliva leaving the mouth. In either case, it should make swallowing food easier. Hopefully, it will also help with his ability to speak.

As far as work is concerned, I am ready to return. I know that in a few weeks, I will wish that I was retired, once again, but today I am ready.

Until later,
Ann and Dennis

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

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

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

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

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

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.

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.

A Bit of My Humor Has Returned

Life is good once more!

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

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

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

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

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

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

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

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

Changes

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

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

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

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

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

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

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

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

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