Time on My Hands

Dennis has another bladder infection. After two days of bed, antibiotics and lots of attention, he is finally feeling better. I worry whenever he gets sick.

But I had plenty of time on my hand and accomplished two big tasks.

I booked a late August cruise for the interior of Alaska. Dennis and I were in Alaska a few years back, and were in awe of the glaciers. The sounds they make when they melt and crash into the ocean is indescribable. We also enjoyed the laid back atmosphere. Now we are looking forward to seeing other parts we have not yet seen. Even better, Raquel will be joining us to help out with Dennis.

I also finished a painting. Raquel really seemed to like it, so I am giving it to her for her birthday. It was fun to give away something that I created and the recipient likes.

It's angels in the night. And while Raquel is not here during the nights, she is an angel in our eyes.

Until later,
Ann and Dennis

Courage Center

Dennis works out at the Courage Center as often as possible. Some weeks this translates to one time, better weeks he manages to get in three workouts. Here is a picture of him at the gym.

And that is all for today.

Until later,
Ann and Dennis

A Vacation Story

One of the more interesting days in Boston happened on the day that the four of us (Jane, Ralph, Dennis and I) decided to take a cruise down the river Charles. It's a great, informative, hour long trip that hits many of the highlights of what makes Boston so special.

We had decided, fairly early on in the day, to go to the to the top of the Pru (Prudential Building in Copley Square) to take in the view from the top. We were educated along the way about the stories of Boston from the beginnings until today. Most interesting fact learned? Much of Boston is built on Land Fill. That left me feeling a bit queasy about standing on the 50th floor of a building.

After the Pru, we began to make our way to the dock for our boat. We couldn't find a taxi that would take the four of us, plus a wheel chair, so Jane and Ralph took off in the first taxi that came along. Dennis and I were told to head to the Fairmont hotel, where taxis cued up on a regular basis. This was a short couple of blocks away, and even though we were a bit late, we charged over there with lots of hope of tagging a taxi. The first taxi in line was driven by one of the worst of the Boston lot of drivers.

As I asked him if he wanted a fare, the driver looked at Dennis with disdain. I should have turned to another driver, but I have been taught the rules of queuing taxis and knew that we were to take the first in line. He finally allowed me to work Dennis into the back seat, unpack the gear that we carry on the back of the chair, load the chair and the gear into the trunk, when he decided he would not take us. The chair wasn't a perfect fit.

I can swear like a sailor given the opportunity, and I am very defensive when it comes to Dennis. I told him he would take us, but I lost the battle. All of a sudden he did not know any English. So I asked him to help me and take the chair out of the trunk. He refused. I swore more at him, asked for his name and licence number, and swore a bit more. Then I moved to get Dennis out of the back seat and he started to fall. I yelled again for help, and finally the other driver came over and helped me get Dennis back into his chair.

In the meantime, Jane had been calling me on her cell telling me her driver was hopelessly lost. I had shown the driver the exact location on my Blackberry before they pulled out. When he got lost, Jane had used her IPhone to show him again. But he was still lost. It looked as though none of us would make it to the boat on time.

With the help of the Fairmont staff, we were able to snag a cab and finally met up with Jane and Ralph a few minutes after the boat pulled out. They were gracious and let us change our reservations to the next ride, which gave us an hour to settle down, chill out and enjoy the River Charles. This is a picture of my sister (on the left) and me overlooking the River Charles. Please note that I am smiling and no longer cussing like a madwoman being undone by a taxi driver.

Until later,
Ann and Dennis

Thick-It Tips

When ever we go anywhere, we always take thickener along so Dennis is able to drink. Dennis loves, loves his Coke and will also order a beer with dinner. Usually I ask the wait staff to fill the glass only 3/4 full, but that ends up in a confused look and always an explanation. So, if it is a beer, I will usually just drink the top off the beer. For Coke, I always go through the explanation; I dislike Coke as much as Dennis' loves it.

While we were on the cape, I trained Ralph to drink the first third of the beer. By the time we met up with Hamed and Ashley, Ralph was completely in the habit of helping out and did it automatically. While Ralph was drinking, and I was adding thickener, Jane was explaining to Hamed about why Ralph was drinking it and my assertion that every beverage reacted differently to the thickener.

Hamed then proposed a research study - Dennis and I could travel around the world testing different beers and how they responded to the thickener. While every beverage acts different to the thickener, every beer (in my humble experience) also reacts differently. So why not research the project, and save other thickener folks the messy problem of cleaning up a goopy, slippery and sloppy mess?

Sounded good until we figured the market for this research was probably low, and I really don't want to work for the government again, in any capacity - way too much paperwork. But, I could share my experiences with you.

Then I figured I could pass on other coping tools that we have discovered, used, and what value we found in any of these tools.

So, Number One Tip - Using thickener in beverages

• No ice. None. Nada. Not one bit. As it melts, the thickener
• Orange juice needs very little thickener - it keeps getting thicker and thicker
• Use a whisk to mix - it goes much faster and the consistency is more even
• With fizzy beverages, start with a glass half full and add thickener. Then add more pop with the head goes back down. Add more thickener if necessary and never fill the glass full until you are done adding the thickener.
• Use half flat fizzy drinks if possible to start the process. Finish off the drink with a freshly opened drink.
• Wines thicken nicely and there is no overflow problem.
• Treat beer as you would pop - but remember, all beers are different. Go slow when adding mix.
• If your doctor tells you to use thickener, do it. It may just save your life. 
• There are many on-line dealers for Thick-It and if you purchase in bulk, it's not all that expensive.
• Carry a small container of thickener where ever you go.

Do you have any suggestions? Do you have questions that we may have an idea about? Please feel free to email me or drop a comment. I am ready and willing to share or ask around.

Until later,
Ann and Dennis

Transfer a Patient from Bed to Wheelchair Using a Hoyer Lift

The Lift

The last time a social worker came to assess Dennis, she decided we needed a lift to help move Dennis from one place to another. Yesterday a representative came out to show us how it works, before he started the insurance paper work process.

"I hate it, I hate it, I hate it," Dennis yelled throughout his visit.

The man understood. He told me he generally gets that reaction from customers.

I ordered it, anyway, much to Dennis' chagrin. "It's for me, not for you," I told Dennis. I explained it was for my back, the PCA's backs and to help prevent any further bruising of my body.

"It's out of the dark ages! It's barbaric. I hate it, I hate it, I hate it."

I do too. It's huge, it's a lot of work, it's ugly and it takes up too much room. However, I know even if we do not need it right now, we will need it soon. And since the wheels of government dollars runs so slowly, we should take it when it is offered, or we may not have it when we really do need it everyday.

If the days do not come when we need the lift, it will most likely mean Dennis isn't around anymore. I know enough about this disease to be assured that this will be the case. I don't mean to be maudlin or even discouraging, but it is a fact that Dennis isn't going to become easier to move and position as his disease progresses.

So, in a way, we are stepping back to the dark ages. We are dependent on what is available, and the lift is not the most innovative pieces of equipment I have seen. It's not computerized, it's not even operated by batteries. Some days we simply need to be grateful for what is at hand, even if it isn't up to our normal standards.

Until late,
Ann and Dennis


(View the video above if you want to see what this looks like and how it works.)

Vacation

We are back home from our Massachusetts vacation. We had a few bumps along the way - airline related, mostly - but all-in-all, it was a successful vacation.

We met up with my sister, Jane and my brother-in-law, Ralph in Boston. Ralph was such a sweetie and did most of the pushing while we were in Boston.

Dennis carries a helmet everywhere he goes for when he walks, which he does try to do occasionally. You can see it hanging on the back of his wheel chair.

It was great to spend time with my sister, since she lives in London and we do not see her often enough. Jane and Dennis get on quite nicely, and he misses her as much as I do.

After Boston, we went to Cape Cod for four days and met up with Dennis' sister, Donna and brother-in-law, Louie. We haven't seen them for two years, and as much as I had tried to warn them about Dennis condition, they were still a bit overwhelmed, but happy to see us, too.

More later. I think I can find a few more pictures to share.

Until later,
Ann and Dennis

Weary on Sunday

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

Yesterday....

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

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

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

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

So, until much later,
Ann and Dennis

A Messy Night

Okay, the leak was not only on the gastric side of the tube. This morning we woke up to liquid feed on the floor. The stuff is thick, sticky and vanilla flavored. I hate artificially flavored anything, and when mixed with the smell of carpet, it is even worse.

As if that wasn't bad enough, Urina, the night urine collector, came loose and leaked all night. Close your eyes and imagine what the smell of urine mixed with artificial vanilla might smell like and feel like.

YUCK!

I am going to quit now, for I have a mess to clean up.

Until tomorrow,
Ann and Dennis

A Leak Springs Eternal

Dennis' J/G tube sprung a leak this morning while I was giving him his medications. I called the hospital and we have an appointment for 7AM on Monday. In the meantime, perhaps Duct Tape??

For those of you (most of you, I hope) that do not know what a J/G tube is, here is my best lay mans definition. It is a tube, about a 1/4 inch in circumference, that is divided in half. One half of the tube goes into his intestine, for night time feeding, and the other half into his stomach for medications. I think I may have been pushing to hard when trying to give him his meds, and the G side of the tube started spraying all over the place. A small hole had opened up in the G side.

G stands for gastro (stomach) and J stands for Jejunal, which must mean intestine. There is one more thingee hanging out, which is the control to the balloon that hold it in place.

I have tried to find a website that explains it better, but they are all too technical for me. Here is a picture of Dennis' tube contraption. Where Dennis' pointer finger site, is exactly where the leak began.

 Now we have a 7AM appointment at the hospital on Monday to get it replaced. Sigh. At least it is an easy surgery and we should be home by the time my 10AM dentist appointment comes around.

Until later,
Ann and Dennis

Pre-Travel

Today is a day of packing for our vacation. We leave on Tuesday for Boston and Cape Cod. Normally, we would pack a day ahead of time, but with all of Dennis equipment, we need extra time to plan for space in the suitcases.

We did find a collapsible IV pole that will hold the pump for Dennis feeding. It's made by Sharps and collapses down to 2 1/2 feet. It's made of aluminium, which makes it not only very light weight, but also is completely recyclable when we are done using it. If any of you are needing a pole, and want to be able to carry it around, I highly recommend this pole. Wait - perhaps I should see how the airline handles it first. I will get back to you all soon.

In the meantime, I have started a new painting (an oil) and the base coat is now drying. It should be ready for details by the time I come home. I also am planning on writing a second edition to my workbook (see link to Lulu below). The old one is on sale right now until June 30th, but there are a few errors in it. Unfortunately, I am not able to revise it, but it's a good buy if anyone is in the market.

Finally, just as an FYI - I am LOVING retirement. Yes, it's just a summer vacation now, but it's amazing how much quicker it was to get into the relaxation mode, once I knew that I would not need to work full-time in a school setting again. All my summers, over the last 3 or 4 years, have been a practice for retirement. Now that it is real, I know that it was the perfect time, and the right decision.

Until later,
Ann and Dennis

Chocolate

Dennis has begun throwing up again at night. We are trying to decide if we should move his Nexium dose to later in the day, or keep him from eating for at least an hour before he goes to bed. The latter would be more difficult because there are days he is in bed by 4PM. Today he has a visit with his doctor, so we will have an opportunity to discuss some options. We also know that in the long run, we are the ones who really know Dennis best.

I bring this up because last night he asked me to come to bed to be with him at 6PM. I wasn't ready, and told him I would come at 7 if we could watch something we agreed upon. Then Dennis noticed that hockey was on, and I begged off and plopped myself in front of our other television. Naturally, every few minutes he was calling for me, because he had thrown up, again, and wanted me to clean up his mess.

One time, as I was cleaning up the latest smelly vomit, he asked me for chocolate. Now chocolate is not his friend on so many levels; chocolate makes him drool more, vomit more and he manages to get it all over his face, the sheets and the pillows. Eating it at night makes no sense, what-so-ever.

So what was my response? First laughter, then a solid "NO", and finally the statement, "you can have your chocolate for breakfast!"

Always, growing up, I wanted chocolate in the morning. Mother always said "no, you can have chocolate on Friday evenings only.

Is there some irony in this situation?

Until later,
Ann and Dennis

Brain Lesions

Dennis is convinced that he has brain lesions. He believes they are causing his repetitive words and perhaps some of his memory lapses. Don't get me wrong, he is a sharp as any regular 60+ dude with tendencies to forget the mundane. But he does have more issues with stopping his chatter, and repeats phrases until a person wants to put a hand over his mouth. And, yes, I have done that and will most likely continue to do this.

I have looked up brain lesions, and they seem harmless, for the most part. There isn't much information about Multiple System Atrophy and brain lesions, which is far from surprising. In fact, there just isn't enough accurate information about neurological orders in general. So those of us with brain disorders, and their loved ones, hunt and peck and ask around and look for anything that can be found that explain the unexplainable.

So I am asking you, out there, what you know about lesions of the brain and any experiences any of you may have with them.

Until later,
Ann and Dennis

Past Falls

Since I wrote yesterday about Dennis' latest fall, I thought perhaps I would share stories about some of his falls over the past few years.

One of the first I remember was about three years ago. I came home from work and found him laying in a pool of Coke and blood on the kitchen floor. He had slipped off of the little stool in the kitchen where he was enjoying his newspaper. Once the cuts were cleaned and bandaged, and the bloody coke mess scrubbed away, we relaxed a little bit. However, we were both fairly shaken up.

Lesson learned? Do not lean down to retrieve the sports page from the floor if you are a forward tipper. I suppose if you are a backward tipper, or a sideways tipper, there would be certain positions to avoid, also.

One of the funniest (only in retrospect) was when Dennis decided to help out in the garden when I was gone for a short weekend.

I should let you know that all of these falls occurred before we knew that he had a more serious disease than Parkinson's Disease. It was also the beginning of a 3 year decline in Dennis' MSA. We were just beginning to question his diagnosis in the simplest of ways.

Anyway, there I was spending my once a summer weekend with a girlfriend at her lake home. When I came home, I found  the scratched and bruised face of Dennis. "Damn!"screamed in my brain as he told me the story.

It had been a hot weekend, and Dennis decided that he would hook up the hose to the elaborate watering system that I had created over the past few summers. I loved creating that garden, and Dennis was proud of my creation and newly discovered enthusiasm for outdoor gardening.

Again, he had leaned over to the ground for the hook up and fell smack dab in the middle of my rose bush garden! While getting himself up, he fell again onto some of the pavers that formed the walkway through the garden. At the time he was still able to pick himself up, but as the second fall shows, it was becoming more and more difficult.

As his face healed and we found our ability to laugh at his thorn torn face, we knew that we needed to find someone to stay with him when I was away. Another lesson learned the hard way.

As the falls increased, more lessons were learned. His falls three years ago led the the occasional use of a cane. He used them more as a toy most of the time, something to collect, but he needed them more than either of us were ready to admit.

The next series of falls led to his using a walker most of the time.

Then two years ago, before I started this Blog, his fall led him to the hospital and a short-term nursing home stay, the permanent use of a wheel chair and the discovery of his diagnosis of Shy-Drager. (Later to be re-diagnosed three more times before the MSA label was accepted by all doctors and the two of us)

Lesson learned? Live today.

I took him to Paris two weeks later. And that is where this blog began, almost 2 years ago.

Until later,
Ann and Dennis

Here is a link to my first post. For those of you that are in earlier stages of MSA/SDS or any other movement disorder, some of the earlier posts might be of interest.
http://multiplesystematrophyandshy-drager.blogspot.com/2008/07/is-it-parkinsons-or-msa-or-sds.html

A Fall

Sunday, Dennis begged me to get him out of the house. I really wanted to stay home, relish in my new retired life, and just stare at the plants in the south and west corner of our condo, with the ceiling to floor windows. . But I gave in, as I usually do.

The plan was to drive to Lake Calhoun, one of the 10,000 lakes in our state, and sit on a bench and play the game of Guess. Guess is a fun game that most peepers and eaves droppers do on a daily basis - who is that stranger passing by and what are they talking about and then make up stories.

Then I remembered that my favorite boutique was having a side-walk sale. I mean really, who can pass up 75% off at their favorite store?

That's when Dennis fell. He had wanted to walk a bit, and was looking for dresses for me. He always has liked to pick out clothes for me. But he was standing still, and that is when he is most vulnerable to a fall. His back was to me and mine to his, and he just fell.

Since we were on grass, and my body broke the fall, no permanent harm was done. With the help of a passer-by, we were able to get him back in his chair, with only a few small errors, in short order. But he was shook up and so was I.

Dennis hasn't had a damaging fall in a very long time. He takes many precautions to avoid falls. When he does any walking outside the house he generally wears a helmet. Sometimes he also wears plastic padded hockey pants and hockey elbow pads. He has never had a fall when he gears up and even though the helmet was in the car, we didn't think of putting it on his head.

We did not make it to the lake. We both wanted to go home where it was safe. But, really, we should have just put the helmet on, and he never would have had that fall. I know, woulda, coulda, shoulda, but it was a lesson learned.

From now on, the helmet is a permanent fixture on his big old head. An ounce of prevention is still worth a pound of cure.

Until later,
Ann and Dennis

The Past Week

Oh, my dears, what a whirl-wind week I have just been through. Our anniversary weekend, the last days of work, Jane and Ralph in from London for a few weeks, my retirement party and the beginning of the next chapter of our lives.

During the practice vacation we found out that we will need to bring along the pump for Dennis' night feedings. We tried hanging it from a light, which was fine, but not high enough to force the liquid down. And the "j" tube is 1/2 the size of the "g" tube, making it all the more difficult for gravity to do it's work. The liquid food is fairly thick and it was not moving any where. I am glad that we tried it before we headed out for more than one night.

Work was not fun at all. The boss was gone for most of the week, which made me the boss. Long, long ago, when I was a young, thin and energetic teacher, I had been encouraged by many to go into administration. But, I have the temperament of my father (impatient, demanding, always right, and stubborn) and my mother (sensitive, especially when stressed, and personalizing other peoples negative ways) and I knew I would not be suited for the work. But here I was, on my last few days of work, being in charge. Which mostly means, putting up with all of the parents and grandparents of the stinkers at school. And let me tell you, those stinkers do not come out of the wombs of sane women or the sperm of pleasant and intelligent men. By Thursday I was done, and took the last two days off from work as sick days.

The retirement party was a blast. I have had several jobs, at several locations over my 22 years in education. I did not invite anyone in particular, but put it out in the district hotline that a party was to happen. A diverse group of friends showed up, and I laughed a months worth of laughs in 6 hours. There were stories shared about me that I remembered, some that I sure were made up and some that were vaguely familiar, but I am sure they were only partially true. Dennis came with me, and tried to stay until he got food stuck in his mouth and wanted to make a get away. Raquel was his, and my, designated driver, and while he left a bit earlier than I did, he had fun.

I haven't hung out much with Jane and Ralph yet, but they came to the party, too. The four of us are going to Boston in a week together. We will stay in Boston for a few days and then head to Cape Cod. There we will meet up with Donna and Louie, Dennis' sister and brother in law, for the weekend. After the weekend, Hamed and Ashley will join us for a couple of days before we head home. I guess this vacation will be the beginning of the next chapter.

So stay tuned and carry on.

Until later,
Ann and Dennis