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

ER Episode 4 (or is it 5?)

I woke up this morning fever free! 3 cheers!

The household did not hold out long, however, before sickness struck again. At midnight, Dennis woke me up and wanted me to check his catheter. He thought it might be clogged. Since the night bag was dry, it was obvious he was clogged. We had two choices - wait until morning or go to ER. Dennis did not want to do either choice and we started a game of one-upping each other with words and thoughts I don't want to admit to online. I will only say that it wasn't pretty and that I hope we did not wake up the neighbors.

He has a bladder infection, again. It's easily treatable. And we should have seen this coming quite a long time ago. There definitely were signs.

A couple of weeks ago, during his last bout of diarrhea, his urine was almost black one morning. It was better the next day, so we forgot about it. He has been lethargic lately. The weather has changed, and I have been so sick, that we ignored that, too.

Then there was the nasty clot in his night bag that Raquel found this morning. I thought I had pulled the whole clot out of the tube and we planned on calling the urologist during the day. Only problem is, each of us thought the other was going to make the call.

We need to become better at handling situations such as this. The mean talk is uncalled for no matter what is happening. We need to watch for signs and act on them right away. Neither one of us have ever been people that run to a doctor for this, that and the other, but perhaps that needs to change.

Tomorrow, when the dust has settled, the prescription has been filled, and we have both had our 8 hours, we can talk. That's one thing about us that is great. We can always talk it out. And for that, I am extremely grateful.

Falls

Dennis has fallen 3 times this week. The first time he was sitting on the toilet. The second time he was standing in his office, and yesterday he fell in the kitchen.

He has been more careful the past 2 years, and the falls have been few. Even so, obviously they have started to increase. This is not good news. But, it is still workable news.

We have had a toilet seat riser, since we moved last year. It worked for a while, but Dennis has been needing increased support while sitting on the toilet. He requires a steady seat, and a riser does not provide this. It doesn't help that we have hard landing in the bathroom with tiles. Carpeting is out of the question.

Today, we will be checking out other solutions to the toilet problem. I don't know if there are risers that are sturdier, or if we need a new, high rise toilet. Conversely, maybe we need to add some more bars around the toilet.

One problem with MSA, is that there are so many unknowns. I never, in my wildest dreams or nightmares, would have considered that a toilet design would be something that I would have need to think about, when we first embarked on this new journey. But it is, I guess.

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

Being a Bother

"You act as if I am a bother!" Dennis griped at me this morning.

Well, Dennis, sometimes you are. That doesn't take away the fact that I love you. But when you wake me at 3 in the morning and ask me to turn you, you are a bother. When you wake me again at 6 am (and yes, I had just fallen back to sleep around 5) and ask for Boost, you are a bother. When I have just, that very minute, sat down with a cup of coffee and kitty on my lap, and you call out, "Aaaaaaaaaaaaaannnnnnnnnn", you are a bother.

Jane, my sister, says this is just men in general. Mother says, "He is such a good guy, and I admire you." Friends say, "I don't know how you do it." Dennis' family says, "Thank you. You must really love him."

Dennis and I talked. I told him that sometimes he was a bother. I also reminded him that he was married to a woman who had serious mental health issues, and hadn't she been a bother? I have never been a mother, but I can only assume that at times, children are a bother.

I suppose I could work harder at not rolling my eyes, after all I hate the old eye roll myself. I could "sigh" less, I suppose. And I could stop telling him that he is driving me crazy. I am so good at verbalizing everything, that I forget that Dennis is sensitive.

We will work this out. So far we have been able to work everything out. It helps that we are both highly motivated to stay together. "What's love got to do with it?" Everything, my friends. Everything.

Until later,
Ann and Dennis

Money and Care

I have been trying to find my mother a decent place to live in an assisted living complex. It seems like it should be easy, but I am finding out that it is not. Every single place is completely different in what they offer. Some rooms have only a bed and a sitting area, others have full bathrooms and full kitchens, and yet others, have no private bathroom at all.

I remember last year when Dennis was in after care at a nursing facility, and how much he hated the place and the experience. It made him feel old and useless. I actually think he deteriorated more by staying in the facility than he would have had he been at home.

It also comes down to money. Private pay gets you a better place, but there is only so much money in this world. I can find better places in Minneapolis, but they are even more expensive.

It seems very unfair to me, given my mom's and Dennis' conditions, that money should be a factor in the type of care that they get. Shouldn't the sick and old get the best care, no matter what the financial status of the person? Something in our system is very broken.

An Insurance Related Phone Call

You are so lucky if you have never had to make one of these phone calls. Being put on hold is the least of the worries. Here is what I have learned, and maybe someday this information will help you. I hope you never need to do this.

• Dial the number and pray that automated questioning and answering is not the beginning of the sequence.
  
• Skip the above sentence, because you will never again hear an actual person answer a telephone when you call an insurance related company. Sorry to have even put the thought out there.
• As soon as you get a message, push zero. You probably will hear that this is not an appropriate response, but do it anyway. At some point, pushing zero, will get you set up with an actual person. Whether, or not, that person speaks your native language, or not, is a crap shoot.
• When you are required to talk to a phone system, talk slowly and clearly, enunciating every single letter and syllable. Do not, under any circumstances, get cocky and start answering the question before, or while it is being asked. You will only be sent back to Go. Trust me, oh smart alack Ann, I know.
• Push zero once again. At the very least, it may give you a sense of power over technology.
  
• When you do finally get transferred to a holding tank, find something else to occupy your mind for a while, but do not put down the telephone or remove the blue tooth. If you miss the pick-up on the other end, you will be cut off. You will need to start over one more time. By the way, by now they have taken up at least 30 minutes of your life.
• Someone will answer, most likely with a slight Indian accent. This is fine if all you need is the information that shows up on a computer screen. It is not okay if you have an actual question. If you need further assistance, ask to talk to a supervisor in the US. This is the last time that you will talk to someone friendly, by the way. So if it is at all possible to get your problem solved in India, go for it.
• Once you are speaking to someone in the US, always get the full name, the city and state and a call back number before you begin any business.
  
• Write down the following information and read it to the person who answers. I encourage you to to follow this step closely. After you have been asked to repeat these details for the 3rd or 4th time, you will either become frustrated and get snappy (my style) or get flabbergasted and get sloppy.

1. name
2. social security number
3. account number and group number
   
4. birth date
5. address, complete with zip

• If you are calling on someone else's behalf, be prepared to hand the phone to that person to repeat all of the "security measure" questions. Evidently, these phone call bank people can tell one person from another by simply answering these questions. Often I simply disguise my voice and repeat the above information. Sometimes they don't believe me, but usually, if I am being nice, they will let it go. If I am snippy, even one tiny iota, they will however refuse to talk with me.
  

That's enough for today. I have so much more, however, and am willing, able and ready to share it all with you, oh lucky readers.

Ann and Dennis

He's Home

I have not developed a habit of reading my daily horoscope and I have very few feelings about their value one way or the other. But I do find them at times amusing while at other times eerily accurate. They also seem to appear in almost any type of written material that one finds at a hospital. And where have I been biding my time lately?

Today, one of the horoscopes I ran across seemed to be talking to me about the struggle with insurance that we ran into, once again, today. Let's see what you think:

Your ability to be clever under pressure might just save the day for you, but you'll need to carefully watch every step you take today so you don't make a critical mistake. Taskmaster Saturn forms an irritating quincunx to your key planet Mercury now, indicating your inability to solve a problem once and for all. Instead, you'll need to keep coming back at it from a different angle, again and again. It's not that your strategy is ineffectual; it's just that things are more complex than they seem.

I don't understand the planet stuff, but the rest fits perfectly.

Here is a synopsis of today's insurance woes.

In order for Dennis to go home today, the hospital staff wanted one of three things to happen. One, a short term nursing home stay, which neither of us want to have happen again. Two, a short term stay at the hospital, with 3 hours a day of therapy, which the doctor seemed to think would not be a good fit for Dennis. Or three, a PT, OT and nurse to visit Dennis at the house for 30 minutes a day. We needed to agree to one option yesterday.

We were both open to the second and third option, with our preference being the home visits. The hospital social worker told us she would check the insurance and arrange for home visits for Dennis. Since the issue of being covered by an HMO in one state over had been fixed after two months of frustration, we did not anticipate a problem.

Today, she came to us and told us the insurance did indeed cover this option, and she had set us up with the in-house service, but that we had not made his monthly premium payment.

If you know Dennis at all, you know this is the last thing that he would let happen. He not only makes these payment on time, he pays them two months ahead of time.

So I get on the phone, all fired up and more than a bit ticked off. I called Medco, his insurance company, who told me that he was still considered an active member. But, since the did not take the payments, they could not guarantee that they had been made. This took two separate calls, by the way.***

Next, I call the payment collection company, ADP, and talk to a very nice lady in India, who of course cannot help me. I ask to speak to JoAnn, who has helped me, inefficiently, but finally effectively, in the past. She does not answer. I ask for her voice mail. India does not know that. So I ask for a different supervisor.

On hold. Bad music. On hold. Music gets worse. On hold.....

Finally, Harry from Detroit, answers. I go through my story again. We get disconnected.

I call again. Yes, we have made the payment and are up to date. They haven't let Medco know, yet, for some reason. It's only the 3rd of the month, he says. He says he will help me, but from past experience, I know that he is simply placating me, and has no intention of following through with promises give.

I call Medco again and explain the story, only to get disconnected once again.

I call again, and am now beginning my second hour of trying to straighten out something that should not need fixing in the first place.

To make a incredibly long, boring, and stressful story short, Dennis will receive the care he is entitled to, and ADP finally let Medco know that he is paid up in full.

But, unfortunately, as my horoscope suggests, this battle is not finished. But as Dennis' job is to fight Parkinson's, my job must be to fight for his rights.

Why does anyone have to fight so hard?

Ann and Dennis

***I will explain the process of each phone call at a later date.



I

Score, Times Two

Oh, my, it's been a very long time since I posted. I am sure that all of my faithful readers have left me! Perhaps I should Twitter instead of blog. I suppose I could get a sentence out each day. Or, maybe I should just work a bit harder at what I have already started.

Actually, I have always been a gal that gets bored easily. I dabble in this, and then I dabble in that. I tend to think of myself as a connoisseur of many interests, but a master of very few. Maybe I have a touch of attention deficit disorder. I will have to look this up in the DSM IV and self-diagnosis myself. Someday, when I have nothing better to do with life.

In the meantime, we have had a few wins. We received notice from Dennis' insurance company that they will cover an initial visit with the movement disorder specialist from Mayo. Score! We also have finally convinced the insurance company that having an HMO from Wisconsin cover him is not acceptable, since we live in Minnesota. Score, 2!

We are lucky. We have the resources to get what we need. We are educated, resilient and resourceful. No one should have to fight this hard to receive what is rightfully coming to them. Yet, we do.

Obama, fix this! Please!

Until later,
Ann and Dennis

Insurance - Yuck

Yes, you should be hearing the results of our visit to the movement disorder neurologist at Mayo today.

But you will not here anything about new tests, or anything of that nature. Dennis' insurance decided that they would not cover the visit. They decided that he does not need to go out of network, since there are in-network doctors that are specialists, too.

I guess they don't know me very well. I will not give up without a fight.

So, I took the two days off, spent time on the phone and writing emails. Dennis made an emergency appointment with his neurologist here for tomorrow. We are also working through the research part of Mayo to help us out.

In the meantime, it is off to Rochester next Monday and Tuesday for that long put off radio active test. At least we will have a final decision on whether Dennis has Shy-Drager or not.

Until Later
Ann and Dennis