Fear

Fear is a word with both positive and negative aspects to it. On one hand, fear keeps a person from making foolish mistakes. Fear also keeps you from moving ahead in life.

When Dennis was falling constantly and hurting himself, the fear of breaking bones forced him to be more careful in his movements. That fear also brought about some depression and anxiety that debilitated him for some time.

When he was passing out fear forced me to call 911 and sent him to the hospital. A three week stint of laying down too much, brought the fear of being unable to walk again without a wheel chair. Dennis stopped walking.

He is braver these days. He began to walk a bit, using his chair as a walker, in Paris. These days he is back to using his walker almost every day. He is getting stronger, looking better and feeling better. As he gets surer of himself, I feel better, too.

Both of our fears have diminished, and they don't drive our lives every day and every minute. Some fear remains in the back of our heads, just waiting to find it's way back to the fore front. I want to push it all the way out of our heads, but I also know that fear serves a purpose. While it's far from my favorite emotion, I know that a bit of it protects us from making foolish mistakes. Too many fears, and neither of us will be living the good life.

For today, and as long into the future as we can manage, we will live without fear.

Until Tomorrow,
Ann and Dennis

Ending Constipation

Let me caution you not to read this unless you really want to know about dealing with the day that constipation ends. Seriously, don't read it. Consider this an entry just for me. But, if you must, I promise to handle the topic with levity.

I am sitting here trying to write as I listen to Dennis do his infamous grunt and groan routine. It's not exactly music to my ears, but I have gotten used to it over the past year or so.

Going to the bathroom speedily has never been one of Dennis' strengths. He''s always been a newspaper in the bathroom kind of guy. He also has never been particularly quiet about his efforts and freely lets anyone else in the house know that he is struggling. Well, not anyone, but he certainly doesn't worry about letting out loud and savage sounds when I am in the house.

These days, he is just noisier and has taken up new habits, besides reading the sports section, while he is attempting to poop. This morning he ate half of his breakfast and cleaned out his shaver while sitting on the pot. I have never been able to drink a glass of water while doing my duty, let alone eat food. The noise, I can't start to find words that characterize the sounds. Let's just say it has gone from loud to down right animalistic in nature.

It's a day long adventure when Dennis' body ultimately decides to let loose. We can't leave the house because you never know when the real time has arrived. With MSA/SDS the warning for any bodily function deciding to work is brief. Often we have seconds, and more often multiple false alarms before the real bell starts a-ringing.

The end of a constipation episode is not my best loved day of the week. Nevertheless, it is almost done for a few days, and he can return to complaining about not being able to poop. Ah, isn't life beautiful?

Until Tomorrow,
Ann and Dennis

Planning A Full Life

I was reminded, yesterday, by my nephew and my mom, that I will be returning to work very soon. Drat. I am not a big fan of working, at least not anymore. I have been practicing retirement for many summers, and I happen to like it quite a bit. But, alas, returning to work is inevitable, so I might as well get my ducks in order now.

I need to find an alternative to Raquel for the days she does not show and days that she needs off.

I need to discuss with my boss my plan about taking Family Medical Leave. She knows and supports me, but we need to work out a plan about how and when I will take time to be with Dennis.

I need to iron my clothes. Yuck! Oh, perhaps I should wash them first.

I need to think about getting into a new routine of going to bed at a decent time and getting up in the morning.

Most of all, I need to figure out how to find the time to do what I want to do, so that my life isn't all about working and taking care of Dennis and our home. I know I can do all of this, and I also know that I will be successful in creating a full life in spite of barriers. I also know that I need to plan for how everything will happen.

I am a certified life coach and well trained in aiding others design a life that they enjoy. Now it is time for me to self-coach myself through this process. All I ask of you, my dear readers, is to notice when I seem to be falling behind in the joyful parts of life, and let me know.

I believe it is time for me to play with my paints!

Until Tomorrow,

Ann and Dennis

Family Sunday

It's Sunday, and we are having my family for lunch. It's not a big affair, just my nephew and his girlfriend and my mom and dad for a few hours. Then we are driving to my nephew's new home, just a bit over a mile from our new home. Dad and mom, as well as Dennis, have not seen the house that Hamed has purchased.

I take pleasure in these days, actually.

I like showing off my home. I like putting together a meal that will satisfy everyone. I enjoy fussing over little things, down to even the ice cubes. I usually create something new, this time a chicken, cherry and pasta salad, and offering a few old standards, too.

What I don't like is the clean-up after it is all over. I imagine you are questioning, "Who does?". You haven't met my family, have you? Not one person in my family is what you could vaguely call a neat freak. Actually, we are all a bit messy. The upside of coming from a messy family is no one has expectations for seeing a house spotless. The downside is, obviously, the mess you produce.

Maybe, just for today, I could enjoy the work after the party as much as I do the work before the party. I am going to give this a try. I will let you know how it goes.

PS: All went well, the family was neat and we had fun. I enjoyed the clean-up, but only because I have a dishwasher for the first time in years.

Until Tomorrow,

Ann and Dennis

Calm

Dennis seems to be in a steady place for the moment. The symptoms he has, have not worsened and there haven't been any new symptoms for some time. Right now, we seem to know what to expect and how to handle the problems when they do occur. We know when to slow down, when to walk and when to rest.

This is good for so many reasons. First, and foremost, it allows us both believe that he could live much longer than we expect much of the time. It also means surprises are not coming our way on a daily basis, and we are free to live in a somewhat calmer manner. It also means no trips to emergency, or the hospital and no new medications to try and figure out.

The calm before the storm? This day I choose to believe that we are in a eternal calm and that life is good and kind once again.

Care Giving

Dennis' Parkinson's clinic, The Struther's Clinic, provides many possibilities for clients to visit and take part in groups. Yesterday Dennis went to a one hour speech group with a dozen other patients and a speech therapist. He came home grouchy.

Today, he was scheduled to go to Club CREATE, a day long support group with many activities to select from, as well as lunch and snacks. He has only gone once in the past six months. He canceled at the last minute today, giving his social worker a lame excuse. I know what this is all about - he starts worrying about the future when he sees others that are in worse shape than him. He also prefers one-on-one attention and does not like groups where he does not get the exclusive attention of the care giving personnel.

Dennis does not understand how much I would like him to attend this program once in a while. Actually, it is more fitting to say that I need him to attend a group away from me once in a while. I had been looking forward to receiving a much needed break from care giving. Raquel is off today, tomorrow and the weekend, leaving me alone to do it all by myself.

He says he will attend occasionally when I am back at work. That is great, but does not help with my needs. I feel selfish and a bit guilty when I mention this stuff to him, but he always takes it in a good natured manner, even if he doesn't make any changes in his behavior. Having a PCA here helps, I can get out of the house, but I seldom get an opportunity to be in the house, alone.

The Courage Center is nearby, a great facility for the disabled, and they offer wheel chair floor hockey. Hopefully, I can find some nights for Dennis to play with the boys, giving me an occasional respite from care giving.

Until Tommorow,

Ann and Dennis

Virtual Girlfriends

I belong to an online forum, Boomer Women Speak, where women of a certain age gather and talk about life. I have made many friends on this forum, friends for life.

When I posted about Dennis being hospitalized in May, many women sent cards to Dennis. One woman generously made him a lapghan (a small afghan) when she heard he was now using a wheel chair. Another sent him cuttings from her southern California garden. The photo above is of the rock garden that I put together for Dennis from the cuttings sent by Meredith.

Girlfriends have often saved my sanity this past year. I want to thank all of my virtual friends for being in my life. Those of you here, in the States, and those of you across the pond - thank you so very much.

Ann

Shopping

Dennis and I are usually quite good shopping partners. We both appreciate good quality and enjoy finding a bargain. Dennis is a more thorough shopper than me and likes to hang out in one store. I would rather visit several stores, sweeping through them quickly, until something catches my eye. To compensate for this, we used to each go our own way, meeting back up to compare and brag about our deals. We still do this to some extent, but it is not as easy as before. If we do split, I often come back to find someone else trying to generously assist him, confused by what he is saying.

Dennis loves Burlington Coat Factory, and I really dislike the store. Our condo is about one mile from a BCF, so we had to make a deal when we moved here. I would not take him to the store, at least not regularly. I get so bored, and worn out, watching him look at every single pair of pants and try on dozens of shoes. Then there are the coats, hundreds of them. He has at least three coats to each one of mine, and he still wants more. Needless to say, he could spend an hour or two simply looking at and trying on coats.

Yesterday was a gorgeous Minnesota day, so I suggested to Dennis that he and Raquel walk/wheel over to Burlington to shop. Dennis lit up brightly at this idea, and a plan was made. They would give me a call when they were done, if they were tired, so I could drive over to pick them up.

They left at 12:00 and called me at 3:00. Yes, Dennis found another coat, a pair of slippers, shorts, khakis and two rugs for the bathroom. Bargains galore! I would have been walking out squawking at Dennis. Raquel, on the other hand, was her same cheerful self. I needed to remind myself that she was being paid for tagging along and catering to every one of his whims.

Then they told me the good news. Dennis had used his wheel chair as a walker and walked the entire way to the store and the whole time he was in the store.

I must admit, that secretly I was doing a little happy dance because I knew he would be sleeping well that night.

Later we pondered how much motivation plays into his symptoms. For me, when I am not feeling fulfilled, I cannot get much done. I imagine it is so much more difficult for Dennis. He was wonderful on our recent vacation, and he will work hard again on our next trip. However, he shouldn't have to live from one vacation until the next, to feel fulfilled. If a small thing, like BCF, can get him walking and up and about, then we need to find more things to keep him motivated.

Sleeping

I went to bed early last night to watch TV in bed. I attempted to get Dennis to join me, but he was futzing around and wanted to stay up. This type of situation never ends up with me getting a good night's sleep.

About 2 hours after I went to sleep, something woke me up. I don't recall Dennis calling for me, rather it was instinct that woke me. I got up and went into the living room and Dennis was struggling to get up from the couch. We have hardwood floors, and the couch slides easily across the floor. Dennis, in his struggle, had managed to move the couch into the dining area, but had not been able to get up.

My REM sleep, now interrupted, would not return this night. Dennis got tangled up in Urina (our pet name for his night bag). Then he had a series of bad dreams, hooting and hollering at someone. At one point I was punched in the back and was told to back-off. His back and hip were hurting and needed rolling over more than once. His covers had been kicked off, and he needed covering up.

Most nights we sleep well together, and for these nights, I am thankful. Some nights just are pre-determined not to work out for either of us. Tonight I will try snuggling with him. Maybe all he requires is a bit of loving from me to sleep soundly through the night.

Family Medical Leave Act

I just checked my sick leave balance, and I have over 120 days of sick leave due to me. A few years back, it behooved a teacher to save sick leave to help cover the cost of health insurance after retirement. Times have changed and now your excess sick leave simply goes back to the district. Use it or lose it, seems to be the message they are sending.

The Family Medical Leave Act assures that a person can take up to 12 weeks off in any fiscal year for the purpose of attending to a sick family member, or yourself. The school district I work for allows you to use your sick days, meaning you get paid and your benefits are not taken away. Add to that fact that I have a supportive boss, and I believe I have found a way to have my cake and eat it too, so to speak.

I don't plan on using up all my sick days, or take advantage of any laws, or take advantage of my understanding boss. However, I do plan on being here for Dennis, whenever I am needed, take him to his doctor appointments and take a break once in a while, so that I can continue to have a life, also. We may even try to tuck in a trip or two before Dennis gets to the point that he can no longer travel. All of these types of leaves are acceptable, under the law.

Sometimes the government gets it right.

A Picture and A Story

Wow! This is the 15th straight day that I have written in our new blog! Frankly, I am quite impressed with myself. I will admit, however, that I wish Dennis would take a turn and give me a day off. I am sure he will one day, but until that day actually occurs, I must carry on. After all, I am the one who set the intention of writing each day for one year.

I am sure that I have mentioned that we love to travel. I can't imagine writing for 15 days in a row without having stated that fact at least one time. In light of that, I decided to post a picture of Dennis from our trip to Spain last year, and a story to go with this photograph.



Look at his plump calves. I haven't seen him like this for so long. He weighed over 200 pounds at this point, and now he is fortunate if he can keep his weight above 170.

That was an aside, I was just amazed at the change when I saw the picture.

I loved and hated this trip at the same time. It was the first trip we took where Dennis could not "pull his weight", as we began to call this new concern.

I loved the country, the food and all of the places that we stayed. This picture was taken in Northern Spain at a B&B set in the mountains, and a one hour drive to anywhere. We were in the farm country, and I often thought about my mom, because I always think of her as loving picturesque countryside. The food at this B&B was wonderful. They had the most magnificent coffee at breakfast and a extremely filling buffet. At night, the chef, who was working hard at making a name for himself, made delicious dinners. They even had an inexpensive wine list that we took advantage of nightly.

I hated this trip because I (yes, I take full credit) had been too ambitious when planning the whole thing. We spent time in six different destinations, flying and driving between locations. It was just too much, since I had to do so much of the labor. I am weary once again just thinking about the whole ordeal.

Dennis tried very hard to "pull his own weight," but he just wasn't capable of doing very much. He was using a cane at the time and barely getting around. He couldn't carry luggage, and was beginning to have lots of trouble with stairs. He could not drive, but he could navigate, sorta. He doesn't read Spanish maps or signs and he had trouble changing the position of his head from map to road. We had a few arguments during that trip simply due to our denial about what the two of us were capable of handling at the time.

We began the social security disability process when we returned home. According to the government, half-way between the beginning and the ending of this particular trip, Dennis had become officially disabled. No wonder I was tired.

That's my story and I am sticking to it!

Until Tommorow,
Ann and Dennis

Catheter Mishaps

Dennis' catheter, for the most part, has been a blessing. We have had our mishaps, however, and this morning was one of those days.

Every once in a while, the tube that connects the catheter to his bag completely falls off. The first time this occurred, we were in Paris sitting in a restaurant over-looking the city. His chair was wet and we knew he had not spilled his water. Thankfully, he had black pants on that day and the only way anyone knew was if they walked to close to him and inhaled deeply. I doubt anyone in Paris would do such a thing.

The second time this happened was this morning. This time we had put a pad down the night before and nothing ended up on the mattress itself.

The first night he returned from his 3 week stint in the hospital/nursing home, we experienced another type of catheter accident; we forgot to close the shut off valve of the bag. Oops. Our new carpet was covered in pee. Well, why not. The very first day in our new home Dennis managed to crack a toilet tank in two. It seems apropos that he would stain the carpet on his first night sleeping in his new bedroom.

Aside from a few accidents now and then, and an occasional pulling on his manhood, having a catheter has been a life saver for both of us. His feet and legs are not swelling up anymore because he is retaining urine. I am not having to change the bed each day and then wash and dry a load of sheets. He is not searching for a bathroom every five minutes. We have not had another occurrence like the one in Barcelona when he sat in a pool of urine on the tourist bus. When the bus finally stopped, we snuck off while the woman in the seat beside us watched with her eyes popping out of her head.

At least this is one symptom of his syndrome/disease that has an answer that seems to work for us, fairly well.

Fighting Back Against MSA/SDS

"I don't have any fight left in me," Dennis said to me last night before he went to bed.

He hadn't been able to eat dinner again on account of the drooling. He was beyond tired and frustrated with everything. I can't blame him, not one bit.

He went to see his general practitioner and had his meds changed, once again. His blood pressure has been too high, again, and he dropped one dose of his midodrine, the medication to raise his blood pressure. The doctor also upped his intake of Rubinol, the drooling drug, but that lowers his blood pressure, so that needs to be closely watched once again. The Rubinol has not decreased his drooling, as of yet, meaning this whole thing may be a moot point.

Does the above paragraph sound like it's going around in circles? Well, that is sort of what his life is like at this moment. I believe we would both like a straight life path for some time, even if it's only for a week, it would be a relief.

I am sure that you are wondering what my response to Dennis was after his proclamation that he just couldn't fight anymore. To be honest, first I played the tough lady routine and said "You damn well better fight," or something to that effect, but that type of talk doesn't work with Dennis. So I simply hugged him, kissed him and let him know that I needed him to fight, and could he please just do it for me.

And that type of talk always works with Dennis, bless his big old heart.

Errand Day

Today I took Dennis to one of his doctors, to lunch, the DMV and a final stop to find blinds for our condo. That was 10 times taking the wheel chair out of the car or putting it back into the trunk. In addition, 10 times collapsing the chair, taking off the foot rests and transferring the gel pad from the seat, then lifting the whole chair up and into the back of the car. Upon arriving, the whole deal all over, only backwards.

Did I mention that it was raining, hard, during the first 2 stops?

Now I am not a gal that likes errands, even when everything is going right. We used to split errands, with Dennis probably doing more of the small stops and me doing most of the big stops, or we would do them together. When Dennis could no longer drive, we would do them all together, and I would gripe, but at least the walker was easy to take in and out of the car. Now it's a full fledged wheel chair that needs to be hauled around.

I don't begrudge him the wheel chair or want to limit him to a living full life, but, we must do this a bit smarter next time. I simply can't take him on all the errands, or, at the very least I can't take him to more than 2 stops in a single day.

These are the things that a person doesn't think about until it hits you, smack dab, right in the face. When he mentioned that he wanted to make a few stops after the doctor's visit, my only response was, "only if we go out for lunch, too." That simply added another stop and two more in and outs of the chair. Now I know that probably was not the wisest answer in the world.

When we finally returned home, there was a package from one of my online girlfriends, for Dennis. It was cuttings from succulents from her Southern California rock garden. Easy grow and easy care plants for Dennis' office. This was such a perfect ending to a hectic Minnesota day. Thanks, Meredith.

Until tommorow,

Ann and Dennis

Shy-Drager Complications

Dennis installed a firewall today to secure our wireless network. This adaptation went well, until I turned on my laptop and we realized the wpa (don't ask) hadn't been saved. After digging around for some time, we found the key (a non-sensicle word) and, voila! I was finally able to use the computer and write in my blog. However, I do not have time to be creative before bedtime, so another issue of.... Shy-Drager, explained.

From the files of Mayo Online:

Complications

The rate of progression of Shy-Drager syndrome varies from person to person, but the condition does not go into remission. As the disorder progresses, daily activities become increasingly difficult. [You] may experience the following complications:

1. Breathing abnormalities during sleep Dennis does have trouble breathing normally, but also talks, laughs and screams in his sleep. He tells me that his dreams are often very vivid, and he can recall even the smallest of details of the strangest dreams.

2. Injuries from falls associated with impaired walking
Dennis is getting better at preventing falls, and while he still falls, occasionally, he is not as apt to hurt himself as he was just a few months back.

3. Progressive immobility that can lead to secondary problems such as a breakdown of your skin Hmm, not yet....

4. Loss of ability to care for yourself in day-to-day activities (from bathing to brushing teeth) Yes, this has started, but he still is working very hard at being successful with taking care of himself.

5. Vocal cord paralysis, which makes speech and breathing difficult
Oh my gosh, vocal cord paralysis? We must question the doctor about whether this could be what is causing his voice and speech issues.

It seems every time, I look at some site on the Internet, I find out something new and often troublesome.

Tomorrow we will visit his general practitioner, maybe some good news? In the meantime, we continue to find things that make us laugh, and that is always good.

Until tomorrow,

Ann and Dennis

Speech

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

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

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

Laughter

We went to see the movie, Get Smart, yesterday. We had so many laughs, even some great laugh out loud moments. Everyone needs to laugh, and Dennis and I look for ways to create laughter each day.

For his 60th birthday, I gave Dennis this great card that plays the Bossa Nova, while the characters on the front of the card do some dancing. They shake their booties and one guy, with a lampshade on his head, rattles his head back and forth. The card cracks both of us up each time we play it and do our own version of the Bossa Nova while we listen.

We are learning how to find a laugh in many aspects of his disease/syndrome. We have come to call his leg bag, Urina. We figure if we ever actually get the cat that Dennis wants, Urina would be the perfect name for her. Some mornings, when he is laying on his back in bed and trying to get up, we play "turtle boy," rocking him back and forth on his back.

I imagine that some of you would find this type of humor disrespectful to Dennis, but to the two of us, it's a way that we have found to deal positively with at least some parts of this illness. When we laugh, we can find some day to day joy and isn't joy what makes life worth living?

Until tommorow,

Ann and Dennis

A Few Tidbits of Information on MSA, SDS

Writer's block already? I made a goal of writing in this blog, each day for a year. A week ago I began, and today I can't think of anything to write about. Oh, my, this could be a difficult goal to achieve.

I must, however, persevere. Perhaps a mini-dictionary on Shy-Drager and Multiple System Atrophy. Yes, I believe that would be appropriate.

Multiple System Atrophy, or MSA, is a progressive disorder with symptoms of autonomic nervous system failure (such as lightheadedness or fainting spells, constipation, erectile failure in men, and urinary retention) combined with tremor and rigidity, slurred speech, or loss of muscle coordination. Most of this information I lifted from the website, National Institute of Neurological Disorders and Strokes. Dennis has all of these symptoms now.

Shy-Drager Syndrome, or SDS, seems to be out of fashion with the newest set of neurologists, but largely, it includes all of the above, plus orthostatic hypotension. This is a sudden, and large drop, in blood pressure upon moving from a seated or lying position to a standing position. Dennis experiences this symptom quite a bit. As a matter of fact, it was the symptom that landed him in the hospital and changed his diagnosis from Parkinson's to Shy-Drager or MSA.

Parkinson's Plus, what some neurologists are calling MSA, seems to be a way of keeping the Parkinson's label, but acknowledging that there is more to the disease than just tremor and rigidity, as is the case for many years with many Parkinson's patients.

The worst part about all of this is that MSA carries with it a death sentence, where Parkinson's does not. I know we are all going to die, but hopefully some of us will die peacefully in our sleep, and we will live to the ripe old age of 90. Most of us should, it seems. However, Dennis won't make it to 70, I am afraid.

Oh, drat, there I go again thinking about the future. Must live for today. Must live for today. Must live for today.

I will close for now. I want to wheel Dennis to the theater and watch a hilarious comedy. I need a laugh.

Until tommorow

Ann and Dennis

A Minnesota Shopping Day

Today we went to IKEA,the first time Dennis has been out since we returned home. IKEA is where Dennis last worked and the job that he Cobra'ed his insurance from, thank God. His insurance is better than I have, and he only worked 10 hours a week. I work and work and work, and my co pays are quadruple what he pays, and his monthly payment is much less. European plans are so much better that US plans, at least when it comes to insurance.
We spent way too much money at IKEA, but with 4 foot plants and all those wonderful new windows we have, how could we resist? When you only pay 12 for a humongous plant, who cares how long it lasts? Of course, we bought lots of other stuff, too, but the plants are what sticks out for me.
This was the test drive for Dennis' wheelchair in Minnesota. Minnesota nice was on the line today. We will give it many more tests, this was IKEA after all, where everyone that comes is searching for a bargain and kindness takes a second chair. On a scale of 1-10, Minnesota nice rated a 5 today. Some of the people that remembered him stopped to say hello, and a gal that went through orientation with him, so many years ago, assisted him out of the store, but other than that, Minnesota nice did not shine through.
I miss holding hand with Dennis. We used to walk and walk and hold hands the whole time. It is very unmanageable to hold hands and push a chair at the same time. I have figured out that, at times, I can put my hands on his shoulders instead of the chair, but only if it is on a level run and only if there aren't people nearby. Anyway, it's different from holding hands.
Dennis told me I work too hard today. He woke me up at 3:30 because he had fallen on the floor when he was attempting to get up from bed to empty his leg bag; I had been too tired last night to change his day bag into his night bag. So, I guess, it was my own fault. Then he woke me up at 4:30, because his shoulders weren't covered, and he hates when his shoulders aren't covered. Then he stirred me again at 5:30 to empty his bag again. I really don't like any of this.
Then, at IKEA, I was pushing him and a cart, but only because we both bought too much. If we had stuck to the plan, and only looked for curtains (we didn't find any) and a rug for the front door, we would have been just fine. But, we hadn't been there for 7 months, and we had just moved, and we needed - NOTHING! - and we hadn't been shopping together for so long. Anyway, I would push the cart, go back and push him, and then I had to pack it all in the car, and then, empty it all out of the car, and then bring it all upstairs and put it all away. I can be grateful that he notices, that I, Ann, work too hard. Nevertheless, I know that I don't work near as hard as most individuals out there in this world. I know that I have got it good.
Until tommorow,
Ann and Dennis

Eating Issues, Again

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

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

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

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

I guess there is always ice cream.

Girlfriends

Raquel showed up today and I could run a few more of those dreaded errands. Dennis and I used to have a shared-chores deal. He would do the bank, write out the checks for the bills, do the dishes and mow the lawn. He also did some of the laundry, but never, ever my clothes. I would do the cooking, the housework, the garden and my own laundry. We shared the grocery shopping. Naturally, these lines blurred more often than they were clear cut, but for the most part it worked out quite well for us.

Now I do it all. I know, many of you live alone and do it all by yourself, too. I've been single more often in my life than in a partnership, so I know how all of that works. However, it's different now. I am doing all of my own chores and errands as well as doing the chores and errands that are simply a result of his illness. Some days I get weary.

Today was not a weary day, I just wanted to whine there for a minute. Excusea bit of self-indulgence, please, just this one time. Truth be told, I will whine again, but let's just pretend that this is the only time you will hear me complain. It makes me feel better to genuinely believe that I am always positive and happy and all that.

Actually, today was quite pleasant, except for that spell where Dennis' blood pressure dropped and stayed quite low for a few hours. It scares the hell out of me when this happens, mostly because he looks so helpless. He was eating and couldn't swallow the last bite of food. He tried, but it just wasn't going down. He simply did not have the energy to swallow.

What made the day nice today was receiving a package in the mail. A friend, Charleen, who I have actually never met, sent Dennis a lapghan. A lapghan is like an afghan, only smaller so it works nicely with a wheelchair. She also sent this beautiful note telling us how it is filled with love, and that since she loves me, and I love Dennis, she loves Dennis, too. Can life get much sweeter than this?

Then he shed a tear or two, and old stoic me did the same, but behind his back, and then I hugged him and kissed him on the cheek.

Until tomorrow,

Ann and Dennis

Raquel, Dennis' PCA that we found on Craigslist, didn't show up today. The frustrating part about finding someone "inexpensive" is that they are generally younger and often not as dependable. I am not saying that all young people aren't dependable - my nephew, Hamed, is a great example of reliability and maturity. But Raquel, who is one of the sweetest girls I know and cares about Dennis, is rather flightly and unaware of how her actions impact others.

I had planned on dealing with selling the car that Dennis can no longer drive. Yes, I should have tried to sell this a year ago, but we kept hoping and I was over-whelmed with work and the changes in Dennis, so we just never got around to doing anything about our extra car. I needed to go over to our old houseto pick up the car, fill it with gas, drive it to yet another location, get a ride back to my car and drive home. And I was hoping to meet with a friend to take a break from all of this humdrum stuff.

Dennis told me to go and promised to sit in his office and be good. So, I went off, with reservations, to spend an hour with a friend, drive for two hours, deal with the car and check up on the house that was finally on the market. I was gone about 5 hours.

All seemed well when I came home. Dennis was happily eating chocolate cake and working on the computer. He had reconfigured the wireless settings that we had been experiencing trouble with since we had Comcast installed and seemed in an okay mood. Then he told me he wanted to take a nap. As I was helping him into bed, he told me he had been lonely while I was gone. He had been afraid to be alone and realized how hard everything was for him when no one else was around.

Which means to say, before I go back to work in the fall we will need to find a new PCA.

We both new this day would come, but we were still hoping that somehow Raquel would work out for us. She is so kind and gentle and Dennis really likes her. But, more than that we need dependability. We need to know that when I go to work, someone will be here to help him and keep him safe. I need to know that I will come home to Dennis in an upright, well fed, dressed and happy condition.

I know that there are others to be found that will have great attributes that we like and will be more realiable, too. But I am not looking forward to the process of looking, interviewing, hiring and breaking in someone new. I think I had better get use to this, however. Oh, well, live, love, laugh and be happy.

Until tommorow,
Ann and Dennis

Drooling Issues

Dennis started his pesky drooling last year sometime. The kind of symptom that gets in the way of some activities, but not all of the time and everyday. He is now at the frustration drooling stage and he drools through day and night, but it is being treated with the drug Robinul, or a generic, to be exact.

Now this drug has all those dreaded side effects, some of which are the very symptom he is fighting against. But of course they are, you know that as well as I know that. Truth be told, it already seems to be loosing effectiveness, anyway, and the doctor seems very reticent to increase his dose, so he most likely will not be taking it for much longer.


It's not always the drooling itself that becomes the biggest issue, it's the problems the drooling causes when Dennis eats, sleeps, talks, drinks, and does anything what-so-ever. When he sleeps he drools, so the pillow cases always have stains on them. Oh well, at least we aren't washing whole sets of sheets everyday like we did all winter. His catheter does have some benefits. Talking and being heard and understood is difficult enough for Dennis, add in the drooling and it is close to impossible to comprehend what he is saying. Even I have troubles most days and need to remind him to talk to me 1) only when we are in the same room, 2) to look at me when he talks and 3) and to swallow before speaking.

But it's the eating that is most exasperating for both of us, and I am sure it isn't all that pleasant for the other people present when he eats. Everything he eats ends up staining the drool which is still coming out of his mouth even though he is eating. After he collects enough colored drool on his face it begins dripping on his clothes. He is forever holding a towel up to his face to collect the drool.

Ah, drool. Sometimes he reminds me of one of those huge dogs that you just got to love through the drool. He is a sweetie and easy to love, drool and all. I wish it didn't bother him so much, but the man has his dignity, one thing this syndrome takes away from a person rather quickly.

Until tommorow,
Ann and Dennis

Somedays You Just Need Help

Dennis hasn't been able to get out of bed since we returned from our vacation in Paris. It doesn't seem to be hypotension, but rather just plain low blood pressure. He's exhausted, coughing and choking and not eating well. He did eat toast with jelly, drank his daily portion of Boost and ate a few of the bbq'd ribs I bought for last nights dinner. Of course, just the simple act of putting his hand to his mouth with the food I cut up for him wears him out, so he finally decided to just stay in bed for the day.

I should let you know that my day job is in education, so I am off for the summer and able to spend more time with Dennis. And before anyone reading this thinks or says anything about teachers having 3 months off in the summer and how lucky we are, let me tell you something. That is exactly why I am in education. For the summers. So there.

We hired a PCA last winter when it became completely apparent that I was not going to be able to continue working full time knowing that I might come home, once more, to Dennis sprawled out on the floor in a pool of blood or Coke. We thought she was coming today, but we had forgotten to call her, so I was staying home. Since I have my summers off, it was not a problem. I had tons of laundry anyway and all those pictures of Paris to download and then upload and then share with friends via email and the boomer forum I hang out in all of the time and staying home all day seemed to be okay.

We found Dennis' PCA, Raquel, through Craigslist. I know this is not the traditional way to hire a care attendant, but when we called the organizations on the list that the Parkinson's social worker had given us, we figured we had to find a more affordable alternative. I mean we are already paying those huge cobra payments for his insurance and the co-payments for all the medications and physical and speech therapy and I was NOT going to give up Laticia, my housekeeper who makes the house sparkle every other Saturday. So we decided to find an independent PCA to save our budget.

We needed some help and we found Raquel. But Raquel was not coming with us to Paris.

I knew that Dennis wanted to see all of Paris. I mean ALL of Paris. I also knew that I was not going to be able to push his wheel chair everyday, everywhere. So we asked at the desk of the hotel about hiring someone to push him around for a day. We both wanted to visit the Latin quarter and it has lots of small streets and small hills. Pushing a 150 pound chair and 170 pound guy up even a slightly hilly area is not my idea of enjoying my vacation, so if we were going to see this part of Paris, we simply needed a strong kid.

We found Julien. An 18 year old, who just graduated from High School and whose mother runs an agency that takes small groups on different types of tours around Paris. Seems she wanted he son to get some work, so she lined him up to take us around the Latin Quarter. Julien knows the Latin Quarter well, since that is where he goes to school, so he was the perfect guide and he was also able to push Dennis up the hills and able to hold onto the chair while going down the hills. Sometimes a girl needs a young boy to help out.

Thanks, Julien, for helping us out. Thanks, Julien, for showing us the Latin Quarter and all the great stories.


Until tommorow,

Ann and Dennis

Is it Parkinson's or MSA or SDS?

If you are reading this blog, I can only assume that you, too, are wondering about your own, or your loved one's, disease/syndrome. Dennis and I no longer expect any real answers from doctors or websites. They simply don't seem to exist.

A bit over four years ago, Dennis was diagnosed with Parkinson's. He had begun having touble with his serve and return during his tennis game. One of his legs was didn't seem to work right and his hands were beginning to show signs of tremors. After several visits to a nuerologist, it was finally determined that he did, indeed, have Parkinson's.

Now, since this blog is not about the past, but the present, I will not bore you with stories of how fast his Parkinson's seemed to be progressing. I will tell you, however, that he did qualify for social security disability within three years of his diagnosis and that says quite alot.

Last month, Dennis ended up in the hospital for a week and that was followed by two weeks of rehab in a care facility. He had started passing out on a regular basis. I have a great story about why I finally dialed 911, but I will save that for another time. Suffice it to say that he was given a new diagnosis, after leaving the nursing home, of either Shy-Drager or Multiple System Atrophy or possibly Parkinson's Plus. Or maybe something else. Sigh.

So, we decided, together, that we would write about our experience from this day forward. And here we are. Ann and Dennis. A 55 year old woman and a 60 year old man. With a syndrom or a disease that we share together.

We look forward to sharing our stories with you.

Until tommorow,
Ann and Dennis