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

A Practice Vacation

Today Dennis and I are filling another wish on Dennis' Bucket List. We are staying at the Nicollet Island Inn for the night. This is a historic building in Minneapolis, known for it's romantic get-aways. While we have eaten at the restaurant a few times, we have never checked in for the night.

It is also a test run for how to feed Dennis while on longer vacations.

With his new "J" tube, he must use a pump for his night feedings. We are really hoping that we can leave that at home when we travel. So tonight we will jerry-rig a pole to hang a bag from, and use the drip bags for feeding. The fear is we will not be able to set it at a slow enough pace for his intestines to take in the food and begin the digestion process before the emptying into the stomach. However, if it works, it will save us 20 pounds on luggage when we travel by plane.

We do have a letter from Delta (not our preferred airline, but the one we are stuck with in Minneapolis) saying we can check a bag for medical equipment at no charge. But this isn't really the problem - the issue is me loading and unloading a bag filled with heavy, but necessary equipment.

Here is an idea of what we take along:

1. Two diapers for each day. Not much weight, but lots of bulk.
2. Bed pads - same thing.
3. Pills (he is up to 25 assorted pills a day) and plastic tubes to inject the pills into his "G" tube.
4. A coffee grinder to pulverize the pills so they don't clog the tube
5. His computer for communication - while small in size, it weighs about 20 pounds.
6. His helmet and pads for walking. Lots of bulk, and the weight adds up.
7. His nebulizer - another 10 pounds. Perhaps we can get a script for individual neb treatments, but then we trade in bulk for weight.
8. Cans of food - he is taking in 3 cans of food each day and each can weighs about 2 pounds. This adds up on any vacation over 3 days.

So tonight is a practice night for saving 20 more pounds by not bring the feeding pump. Lordy, I hope it works.

Until later,
Ann and Dennis

Rabbit and Turtle

The newest edition to the house - the electric wheel chair - seems to be working out, for the most part. Dennis has a bit more freedom, a bit more ability to move from one spot to another without assistance from anyone else.

However,

The other day, he almost killed both of us by moving our solid wood dining table across the room. He had the speed set on rabbit instead of turtle, and couldn't move his hand off of the joy stick. I had my back to the whole thing, and heard the table moving behind me. I turned and yelled, "STOP, DENNIS." I have a very loud yell, and it was able to shock him into stopping. I am sure the neighbors were wondering, but who cares anymore.

New rule of the house: NO RABBIT!!

Of course, as I sit here and write this, he just slammed into me one more time, moving my chair a few feet across the room. He was on rabbit again.

How do you slow a boy down when he wants to get away?

Until later,
Ann and Dennis

A Mantra for Ann

I need a mantra.

For too long I have depended on the Serenity Prayer to get me through tough situations. Oh, it works, and it has served me well since I was a child and first saw this prayer on my grandmother's wall. But I need more. I no longer want to accept what I can not change. Nor do I always want to try and figure out what I can change and what I cannot.

So I am searching. I found a (dead) dude named Og Mandino, and American author who not only wrote books, but is somewhat revered for his famous quotations. I shall try on a new one each day and see how it fits. Or, perhaps better yet, I will find a few that I can say together that will work for me. Anyway, the one I choose for today is:

"No longer shall my vocabulary include such words as cannot, unable, impossible or quit."

I can, am able and it is possible for me to care for Dennis in a loving and nurturing manner. I will not quit, even when I want to run and hide from reality. I shall move forward with grace and love.

Until tomorrow,
Ann and Dennis