Multiple System Atrophy Stinks

" Ur ee." " Ur ee." " Ur ee, ur ee, ur ee." I am trying to pretend that I do not hear Dennis, once again, wake me at 3 am to turn him over.

" Ur ee, ur ee, ur ee, ur ee!"

I feel bad for him, but I cannot tell you how much I hate being woken up in the middle of the night. I roll over and then I feel guilty because I am able to roll over. So I get out of bed and roll him over from his left side to his right side. This time I am able to go back to sleep with ease.

A while back, I received an email from Angi, whose mother has MSA. She had recently moved her mother into assisted living because she could no longer care for herself. But, her mother was getting into trouble because she called for help so often.

I understand both sides. Dennis does need help with quite a few movements that most of us take for granted. On the other hand, I do tire of hearing, " Aaaaaaaaaannnnn," 30 times a day.

I suppose all diseases are unfair.

I hate what Alzheimer's is doing to my mother. She gets argumentative and frustrated. She feels that people she meets think she is stupid. She can't remember how to change stations on the TV using a remote. This is unfair to a woman who is extremely bright and articulate.

Even so, Dennis's disease seems particularly unfair. In four short years, he has gone from playing tennis weekly to not being able to walk without a walker and a personal aid. Four years ago, we would share nightly stories and now his speech has been reduced to vowels and some hard consonants.

I could go on, but why? I think I will close for now and celebrate all that we still have, together.

Until later,
Ann and Dennis

A Balancing Act

I am trying to figure out how to handle being a care-giver to two people. I am not my mother's official or primary care-giver, but she does depend on me for quite a bit, and these needs will only grow as time goes by. (I hear a tune in my ear...). We pay for Dennis to have a PCA while I am at work, but I am always his primary. I might as well admit that, at work, I am also more or less a care-giver. I help adults. parents and children figure out how to play the game of school. Well, maybe that's more a problem solving job, but some of the individuals really need lots of attention.

For a change, I am not complaining. I am trying to figure out how to find real balance in my life without turning into a drunk or a bitch. Or, for that matter, both.

Today, at work, I presented the new plan for a positive school climate. Translate positive school climate to mean poor behavior, and some teachers get their dander up. It's a sore topic, no matter how a person approaches it. My boss and I found a fun way to approach the topic, and, at least for today, it worked.

Then I came home. A message from Dennis' PCA, a message from Jones-Harrison, mom's new home, and a message from the Air Force, mom's insurance provider. There is always more work.

I know I am only working 4 days a week this year. But we haven't decided if this means more work for me, or if we will pay for someone to come in for Dennis on my day off. My boss, also, hasn't figured out that I am unavailable on Fridays - she has staff meetings and training she wants me to attend on those days.

I also am better than most at finding ways to take care of myself. I am basically a selfish person, so I am skilled at putting myself at the forefront. But this is all so new to me. I will figure it out, I always do, but if you have any good advice, I am listening.

Until later,
Ann and Dennis

Another Emergency Room Visit

In my last post, I mentioned that I had lost Dennis' sleeping pills. Well, as it turns out, it was a good thing they were misplaced that night. (Yes, they have been found). We ended up calling 911 and sending him off to emergency because his catheter had fallen out. After 6 hours, we were back home, sleeping, but not until I had learned a few new lessons.

1. Don't cut the stitch, even if it is tearing the skin around the insertion site. I did this a few days ago, and the added protection of the stitch was gone when the balloon failed.
2. Balloon's fail. When they fail, they look the same as a shriveled penis; nothing like the blown up version.
3. Pay your insurance premium, no matter how over priced it may be. I have been complaining about how much we are paying, since COBRA ran out and Medicare isn't available, yet. But, in one short night, we covered the monthly payment of the premium.
4. Not all irritating occurrences happen during a full moon.

All was well after the change of the catheter. Actually, Dennis seems to be feeling better than he has in a while. Maybe it was a bad insert. Maybe it was simply, that Dennis wanted to see a really HOT doc (and, oh, she was hot!), instead of the milquetoast that didn't seem to care after the surgery. Or maybe, it was just a sign that missing a doctor prescribed drug isn't always a bad thing.

Too Many Prescriptions

Lately I have been misplacing things and forgetting way too much. Yes, part of it is age, thank you very much, but I also want to blame some of this on how much I have on my mind. I seem to be in a constant state of minor confusion.

This weekend, I picked up some prescriptions for me, for Mother and for Dennis. As usual I had trouble getting Dennis' filled, and this time mom's were a problem too. Seems the Air Force couldn't find my dad, and they didn't want to cover the scripts. But eventually all of the drugs were ready for pick up. Three for me, three for Dennis and two for mom. I delivered my mother's to her and brought the rest home.

I remember separating them, and putting Dennis' on one chair, and my own on another. I put mine in my drawer and brought Dennis' into his bathroom. The next day, however, one of Dennis was missing. Shit. It was the class 3 narcotic that he uses for a sleeping pill.

I have searched in every drawer, tossed the furniture and the bed, and looked through my purse at least a dozen times. They are no where to be found. I finally had to dial the phone and plead stupidity. I imagine they will get refilled sooner or later, but I can rest assured that the insurance company, the pharmacist and the doctor will be on the lookout for future drug issues.

And I was really looking forward to a full night of sleep!

Until later,
Ann and Dennis

Moving Out

This has been, without any doubt, one of the most tiring weeks of my life. I am grateful that I had a good friend, JoAnn by my side every day of my mother's house clean up and thrift sale readiness. I am also happy that Jane could join us for 2 of those 3 days, and worked hard to get the job done on time. In addition, my uncle joined us to haul furniture, wood and garbage and lots of moral support. Then Celina and Joe, the young students who helped us in exchange for some furniture for their home, worked hard to get the house 'sale' ready.

A few neighbors and old friends also stopped by to wish us all well. For some of my parent's friends, they have been together since before any children were born. For others, newer friends, but just as loyal and caring. Tragedies really do bring out the best in some people. In others, it forces them to retreat and hide. In many, it just highlights the natural goodness that some people are gifted with.

Tubby, my uncle and Kathy, my aunt, shared with me at the end of the day, a successful estate sale. They were proud to tell me the ex-teachers and students that stopped by and named many friends that stopped in just to see the house. I imagine it was just a last goodbye, even no one they wished to say the words to, were actually around.

Mother, on the other hand, seems to be settling in well. She went on 2 field trips this weekend. One, she can't remember enough to tell me and the other was to Stillwater for a lunch. I encouraged her to go to a work out, and she stayed or News and Talk. She seems to be getting comfortable in her new setting.

Until tomorrow
Ann and Dennis

Mother is feeling fairly settled into her new apartment. She didn't remember that she had breakfast items in her room, so yesterday she went without her cereal. But she has figured out the television (I hope) and knows what time her other meals are scheduled. Today we are going out to lunch with Jane, Hamed and Ashley.

The lunch was suppose to be a barbeque at our condo. But Dennis is not feeling well. It's not like him to ask that people do not come over, but he can't even get out of bed. He was willing, however, to sleep for two hours so I could go and meet the family for lunch.

Sleeping

I am a gifted sleeper. Really. I have always had a talent for sleeping soundly and through the night. My sister and mother struggle with sleeping. Not me. I am the one in the family who really believes in the value of sleep. When I first met Dennis, he teased me about my sleeping. He had never known anyone who lived by the eight hour rule. Even when I needed to get up at 5 am for my job, I never went without my full eight.

So, what am I doing up at 3 in the morning, once again?

Yes, it has been a very strange and difficult year. Or, perhaps, even year and a half. But, until this spring, I had still been able to sleep. And, yes, Dennis is having those prairie dog dreams, again. But, even those wouldn't deter the real Ann from her solid eight.

I was laying in bed, just an hour ago, pondering all of this. I thought, perhaps I just need to get back to work. A schedule does wonders for a sleep pattern. Well, I return to work tomorrow. Just a dabble at work - 4 hours and then another week off. But, still, knowing I must be up and in the right frame of mind, does not keep me asleep. And, last year, I was not sleeping well, even when working. So, this theory is not working for me.

I am not happy when I cannot blame someone or something, for my problems. It just cannot be something that I am doing. It has to be Dennis, or work, or family, or just the luck of the draw. But, not matter what, it cannot be me.

Yet, this time, maybe it is my own problem. Just maybe.

Until later,
Ann (and Dennis, the sleeping half of this story)

A Small Whine

Last Wednesday, Dennis took a course called Choices, at Pathways. Tonight he returned for his second session.

He was supposed to get Metro Mobility to take him to and from the class. He hates the inconvenience of MM and forgot to schedule the ride until it was too late to find a good ride. Oh, I believe that. So, even though I had just spent another day driving the 200 mile round trip to Eau Claire, I took him there and in an hour, I will pick him back up.

We have discussed this ride thing often. His complaint is that Metro takes so long. Sometimes he has to wait while others are picked up or dropped off. Some days they don't have an appropriate time, and he arrives early or late. And he has to pay for the ride, and spending money on something that doesn't bring about immediate satisfaction is a sore spot with Dennis.

What he doesn't understand is when he inconveniences me when I need to take him to someplace. I have to spend 3 hours doing nothing, or find something to do. It wouldn't be so bad if he checked with me first, so I could make some plans. I could use the time to meet a friend. I could, now that Mother lives close, visit Jones-Harrison to see her. I could shop, or take a walk, or simply relax. But, when he does this, he just springs it on me at the last minute.

That's my complaint for the day. Other than this, he is perfect.

Until later,
Ann and Dennis

Middle of the Night Wake-Ups

After Dennis had woken me up for the third time last night, I swore at him and moved myself to the couch. I spent the next hour trying to relax, get that Del Amitri song out of my head and back to sleep. I found a few hours of good sleep. At least when I woke at 7 am, I felt fairly rested.

The first time he woke me up was to turn him. I try hard to be patient with the turning wake- ups. He is in bed quite a few hours at a stretch, gets tired and his joints get sore. He can't turn himself without help. Most times this turn is easy, and I can get back to sleep quickly. This time it was back to dreaming in minutes.

The next time he woke me up was because his arm was numb. What am I supposed to do about an arm that is asleep?

As I am relating one little night episode with you, you need to keep a few things in mind.

One, this happens almost nightly. It happens more often after a big change. Dennis had two big changes last month - the catheter and the feeding tube.

Two, Dennis struggles with pronouncing consonants, even when he is wide awake and at his optimum strength. I have learned to understand " ur ee" (turn me) and "uh in ons" ( covingtons - Dennis' word for covers), two of his most common night time requests. When he throws a new one out, I have to really focus to figure it out. By the time I had figured out, " i ar is um", I was wide awake and frustrated.

Three, I never know when he might really need my help. He has had a few falls out of bed, infections, pneumonia, and other large and small emergencies. The problem is he is not very good about differentiating between an emergency and simply wanting attention.

Four, Dennis talks in his sleep. Loudly. This morning, according to Dennis, the third time he woke me, he was dreaming and talking to me. It seems he thought I had a laptop computer in bed and was looking for a new TV for Mother. Since we actually are looking for a new TV, and have been looking on the computer, this sounds plausible. But, his eyes were wide open, he was very insistent, and I was trying hard to understand him.

I decided to forgive him. He said he will try hard not to wake me up for every single thing on his mind. Perhaps I should give him two sleeping pills tonight.

Until later,
Ann and Dennis

Stomach Tube (G Tube) Blockage

I spent most of the day with my mother today. I left the house at 8:30 and headed for Eau Claire. The plan was to pick out a few more items for moving, a last visit with her doctor, before heading back to Minneapolis with Mother in tow. She is going to see her new apartment and have an assessment with a nurse tomorrow. Then Jane will drive her back home.

It was a long day. A 100 mile drive, twice. A visit to the doctor, who spends a whole lot of time with each patient. Mother and Father both love(d) him, but he is always behind on his appointments. Then, we packed for the night, but mom kept forgetting something. Anyhoo, it ended up being a long day.

When we returned to our condo, Dennis was due for a feeding. Damn, his tube was blocked. I reread the information given to us and tried to empty his stomach contents with suction. Nothing. I tried putting water into the stomach, with no success. I tried a new suction tube. I tried hot water. Nothing.

I called the hospital. I could not find the direct number and the receptionist, although very pleasant, couldn't figure out what I needed either. Eventually, I was hooked up with a guy that understood what I wanted. While he transferred me, he told me that inserting Coke into his tube might loosen the blockage. As my sister Jane said, "that says alot about what we are putting into our bodies."

I left a message and received a call back a short time later. Pump, back and forth, warm water into his tube. Much like rocking a car out of snow. Slowly, in and out, back and forth.

Thankfully, this worked. Dennis is still officially without insurance. Yes, he will be covered by my insurance, but the paper work is not processed, yet. It's best not to take him to a doctor until the official cards have arrived. I really do not want to face one more insurance fiasco.

Until later,
Ann and Dennis

Constipation, Again

When we were in Ireland, we finally found a solution to Dennis' never ending constipation. I promise not to go into another icky poop story, but I thought, for someone, this information might be helpful.

A quick background. Most of Dennis' meds have constipation listed as a side effect. In addition to that, he has always had some trouble with bowel movements. Constipation is also one of the symptoms of MSA. It was bound to happen, in a big way, at some point in his MSA journey.

First we tried Mirlax. It worked for a while, but after a while, it quit helping. Then he took the 14 day Activia challenge. Yes, it helped loosen up the day to day garbage, but he was still impacted. Then we added colase (a stool softner) twice a day. Finally the doctor suggested senna. Of course, in addition we have tried enemas, but, unfortunately, those muscles don't contract well, anymore and he couldn't hold it inside.

In Ireland, a pharmacist gave us magnesium citrate. He explained to us it is what surgeons use when they really want to clean someone out. He told us that Dennis would have to take one bottle in the afternoon and one before bed. So we did. And it worked!

By this time we were using 2 sennas, a colase and a Mirlax in the morning, and senna and colase in the evening. But, no matter how cleaned out he was, he started the constipation cycle one more time. So I bought more Magnesium citrate. But, this time, I just gave him a half a bottle. And that worked.

Now we are down to 1/3 of a bottle after 4 days. It seems to be effective and efficient. So, if you are in dire straights yourself, one day, try it. You won't like the taste, but you may like the results.

Until later,
Ann and Dennis

MSA - Another Lesson

In the last post, I talked about symptoms of MSA. For the fun of it, I found a list of typical symptoms and put in bold the ones that Dennis is currently displaying.

Symptoms

MSA damages the nervous system, which can cause the following symptoms:

• Changes in facial expression
  • "Mask" appearance to face
  • May be unable to close mouth
  • Reduced ability to show facial expressions
  • Staring
• Difficulty chewing or swallowing (occasionally)
• Disrupted sleep patterns (especially during rapid eye movement (REM) sleep late at night)
• Dizziness or fainting when standing up or after standing still
• Frequent falls
• Impotence
  
• Loss of control over bowels or bladder
• Loss of fine motor skills
• Difficulty Eating
• Difficulty with any activity that requires small movements
• Writing that is small and hard to read
• Loss of sweating in any part of the body
• Mild decline in mental function (may occur)
• Loss of Balance
• Shuffling
• Gait Changes
• Muscle aches and pains (myalgia)
• Difficulty bending arms or legs
• Nausea and problems with digestion
• Posture difficulties: may be unstable, stooped, or slumped over
• Slow movements
  • Difficulty beginning to walk or starting any voluntary movement
  • Freezing of movement when the movement is stopped, unable to start moving again
  • Small steps followed by the need to run to keep balance
• Tremors
• May become severe enough to interfere with activities
• May be worse when tired, excited, or stressed
• May occur at rest or at any time
• May occur with any action, such as holding a cup or other eating utensils
• Finger-thumb rubbing (pill rolling tremor)
• Vision changes, decreased or blurred vision
  
• Voice and speech changes
• Difficulty talking
• Monotone
• Slow speaking
• Voice is low volume

Quite a list, isn't it?

Until later,

Ann and Dennis

MSA - A Lesson

I haven't done any information sharing in my blog lately. So today will be a lesson in MSA/Shy-Drager.

When Dennis was first diagnosed with Shy-Drager, he was recruited by Mayo Clinic, in Rochester for a study. After the tests were completed, the doctors concluded that Dennis did not have MSA/Shy-Drager and encouraged us to see another neurologist, a movement disorder specialist. This neurologist said that Dennis did indeed have MSA, but instead MSA - P. Here is a brief description of the differences between the two as well as a 3rd type of MSA.

When autonomic failure predominates, MSA is sometimes termed Shy-Drager syndrome. When extrapyramidal features predominate, the term striatonigral degeneration, parkinsonian variant, or MSA-P is sometimes used. When cerebellar features predominate, MSA is sometimes termed sporadic olivopontocerebellar atrophy or MSA-C.

In plain English, this means that MSA has 3 different forms, each with a different group of symptoms predominating. Dennis has the type that looks like Parkinson's. Most MSA patients have the type where the autonomic systems deteriorate first. (Autonomic systems are those that your brain automatically controls - blood pressure changes, sweating, etc). The last type is identified by a gross lack of coordination.

The diagnosis of MSA, MSA - P, or MSA - C is given when the main symptom plus at least one other symptom is apparent in a patient. In MSA - P, Dennis' type, the main symptom is gait disorder. He has that plus 4 out of 5 of the other symptoms. The only symptom he does not display on a regular basis is tremors. In addition, he has one or two symptoms of each of the other types of MSA.

If you, or someone you give care to, has MSA, I would be curious what type of MSA you believe is the correct diagnosis.

Until later,
Ann and Dennis

Sleep, Interrupted

It was a long day, today. Dennis wanted to get out of bed at 6 am and no matter how much I begged, there was not going to be any relenting. He had been in bed for 12 hours and he had a sore back. By the time I had gotten him up, dressed, changed and fed, I was wide awake, too. So I picked up the house and shot off a few emails regarding the sale of Mother's house.Then it was off for a hair cut for me, stitches replaced for Dennis, a stop at BlockBusters for a few Blueray disks (fancy ass DVDs) and a unplanned pizza pickup at the best pizza shop in Minneapolis.

By the time we returned home, 4 pm, Dennis was exhausted again. We managed to get in one tube feeding, one slice of pizza each and one movie, before Dennis went back to bed. Well, he had been up for 14 hours, and that is a long day for him.

I gave him two sleeping pills (it's within the prescribed amount) hoping he would sleep a little later for a Saturday morning sleep in late. These pills not only help him sleep longer, but also quieter. The muscle relaxers in the pills also keep him from slugging me in the middle of the night. They often help with his vivid dreams and wild screams. Not always, but most of the time.

All was well when I went to bed a few hours later. He was sound asleep and quiet. I drifted off into my own dream land and hoped for the best.

3 am. The usual time for sleep, interrupted, but not the usual suspect. One of those damn smoke detectors was beeping. I rolled over, trying to ignore it. Nope, that wasn't going to work. I finally got up, pulled a chair under the contraption right outside our bedroom door, and reached. Damn high ceilings, I couldn't reach. I went to the pantry, where Dennis had put a pole that I cursed every time I opened the pantry, and tried to reach it once again. Success! I had disarmed the detector!

By this time, Stinker, (Shiva, the kitty) was following me around and wanted up, on the bed. Actually, she wanted to lay on my belly and allow me to rub her face for a while. This was cool with me. I needed to unwind after my trials with the alarm. And just as I had started to forget reality, the beeping started again.

Who in the world, invented such a contraption? An alarm is suppose to give warning when it is necessary. Crying wolf is contradictory to what an alarm is meant to do.

I tried, once again to ignore it. I counted the seconds between the beeps. Knowing when the next beep is coming is easier for me than waiting for the next beep. Exactly 15 seconds between beeps. 4 beeps a minute. 240 beeps an hour. I wanted to sleep for at least 3 more hours, which meant I needed to tolerate over 700 more beeps. Shit. I couldn't do it.

I got up, again. I pulled out the fold up stool. Wisely, I put on a robe. Not only do we have high ceilings, but also too many windows for a late night naked scenario on a stool. I found the battery cover and opened it up. Damn. A 9 volt battery.

Who, in this world, keeps a stock of 9 volt batteries around? Not us, it appears.

It's times like these that I miss my old Dennis the most. Oh, I have lived alone as many years as I have lived with someone else. I know how to take care of myself. But, when you live with someone, you don't always want to take care of everything. Okay, let the self-pity go.

The upshot is, by now it is after 4 am, and here I sit. Counting the damn seconds between beeps. And, as it should be, Dennis has started making noises and talking in his sleep. The pills have worn off and my REM sleep is gone until at least tomorrow night. At least I got an entry written for today.

Until later,
Ann and Dennis