Excuse me, are you a rock star? Originally posted April 22,2009

Sorry, I just found this one from the past that I apparently forgot to post when I was "catching up". I was getting ready to post some thoughts on Torticollis, and remembered this.

Spasmodic Torticollis. Great name for a rock band, yes? Cervical Dystonia. Also a good one. Both sound like a lead-in for a heavy metal band with big hair. Well, we have entered the rock band era with my wife's disease. And now, the coliseum is proud to present.......Cervical Dystonia!!!

These two heavy metal names are both monikers of a disease of which my wife now is suffering. As a side effect of her primary illness, we get to sample an entire array of diseases - as symptoms of multiple system atrophy.

Cervical Dystonia is (in layman's terms - I am just now learning about this, over the last few hours) where the muscles of the neck spasm and/or contract on their own. It is annoying and according to my wife (and common sense) very uncomfortable to painful. When she gets tired, excited, or emotional more than a bit, her neck pulls her head towards her chest. This is actually called anterocollis when it happens this way. There are other names for pulling to the side or to the back. I am not sure how common this is, but in her case she cannot pick her head up on her own. I have to push/pull her head to the correct position and hold it there while things calm down.

Ain't life grand! Rock on, dude!!

What next?

I know I have not posted anything new since the recap of all the existing posts from my original blog. This is turning out to be more difficult than I thought. If you read the previous posts you may have noted a theme - I was typically writing from emotion or passion from the moment. To try to post "informationally" is harder than I imagined when I thought of doing this separate blog. I am still working on how to get motivated to write without it becoming just a medical chart of my wife's disease.

A quick update on that - we continue to battle the daily battles; dressing, eating, using the facilities, etc. All seem to be more difficult as days go by. We have been playing with the medications to try to work on what my wife sees as her most annoying symptom - the tremors. It amazes me how such a small change can in dosage can affect her so much. She is now taking 1 1/2 tablets of 25/100 Sinemet (carbidopa/levadopa) every three hours. We have tried going to two tablets every three hours. That one half of a tablet - 33% more totally sedates her. My daughter (that helps care for her during the day when I am at work) and I both have been amazed at how "drugged" that small increase makes her. We also tried 1 tablet every two hours, but that seems not to work as well. So we stay at 1 1/2.

I will continue to work on trying to formulate a format for this so I can do posts regularly. Like I said, I don't want it to turn into a medical chart; but I also realize I can't wait for a passionate moment to do a post like I did in the past. Any ideas or suggestions are welcomed.

If you know anyone with this disease, or you yourself have been diagnosed with MSA - my wife and I would love to hear from you. Drop me a response and we will get back to you. From what I read there are about 7 people per million that have this evil disease. That means there are not a whole lot of people, but there are enough that communication and fellowship is possible.

We are up to date

OK, that gets us current. If you are starting here PLEASE go to the first post and read at least the first one. I advise reading them all as they are part of the documentation of the progression of the disease and our mindset from then to now.

From here on I will try to post thoughts and updates with some regularity.

Comments and suggestions are welcomed.

Welcome aboard!

And then we wept... - originally posted 3-17-09

I am not really sure what this post is to accomplish. It is a bit of a catharsis for me. I hope it will be informational for some, possibly even inspirational for others that may be going through a similar event in their life (although I profoundly hope there would be no others going through what we are - I know there are)


Sunday as we were getting ready to leave Florida for home, my wife started weeping rather uncontrollably. Being the tough macho guy that I am, I kept a stiff upper lip - for about 30 seconds. I HATE seeing my wife cry (or any other loved one), especially a sad, wailing, cry. I asked her what was wrong, but it was one of the teary events where you cannot even talk. She was brushing her teeth at the time, and between the toothpaste, toothbrush, and weeping - communication was not possible. So, I just was just there. Then I teared up myself. Watching her, a grown woman, RN, mother of six, and grandmother of two (with another on the way) not being able to really brush her teeth (we have an electric brush for home, but travel with a normal one) struck me as one of the saddest things I have ever seen. Her coordination to really do the "brushing" motion is just not there any more. So, we wept together. She for, at the time, an unknown reason; me, for what she was going through and what we have to face going forward.

As we got in the car later, she broke down again saying goodbye to her mother. I had a hard time with this one as well as I knew she was unfathomably sad. Goodbyes are always hard. As we got on the road, we composed ourselves a bit. Then we talked. Now, I don't know how many of you have or have had a loved one on death row. (actually not a great comparison as there is always a chance of the governor calling - pretty sure this is above the governor's pay grade) Talk about an elephant in the room! We have talked in small circles around it, but never really in depth or details. This was pretty much the same except she started it with a tearful look and a question that ripped at my heart. She asked me through sobs "Will this be the last time I see my mother's house? Will I die before we get back?" By now, she was crying uncontrollably and I was having trouble seeing the road. I had no witty response. I had no great comeback. I just told her - "We will make a point to.".

I don't remember exactly what was said next, or how we got there; but I told her I was very, very sorry she was sick. I told her I would give almost anything if she was not. We were now weeping again (being a tough, macho type - maybe I was just tearing up a bit - weeping sounds a bit wimpy). She told me she was sorry I had to deal with her. I told her I was where I should be. If I did not want to be where I was, I would leave. I reminded her I was in for the duration.

We rode in silence for a while. I am not sure about her, but I still found my eyes getting wet from time to time. There was once about two hours later where she had dozed off. I looked over at this woman that I married over 35 years ago. She was shaking with her Parkinson's tremors with her hands curled on her lap. She looked so helpless....and sick, I guess. I remembered how just three years ago we were saying goodbye as she headed for work. Her loss of her physical self has been amazingly rapid. I found myself reaching for a napkin to dry my eyes. Luckily, she has not lost any of her mental self. She is still crazy, funny, and enjoys a laugh. We just have to work harder to find things to laugh about.

We made it through the rest of the ride with the elephant safely in the back seat. No more discussions, no more tears. We even laughed a bit from time to time.

To Pee or not to Pee (with apologies to the Bard) - originally posted 3-12-09

I know a lot of people are crying the blues today over the economy (and justifiably so in a lot of cases). However, you have all heard the statement made - "at least you've got your health", probably a million times. If you "have your health" and have remained relatively healthy, you probably ignore the statement or mumble a "yeah" and move on.


The process of waste elimination is a pretty basic need. If you remember basic biology - taking in food and elimination of waste were signs of biological life. If you are a human, the waste elimination process has taken leaps of societal and hygienic improvements from Og and his lot heading for the other side of the bush. We now have restrooms, both public and private for the process. (where is this going?, you are probably asking by now).

As most of you know that would be reading this, my wife is in a wheelchair. She is in it because she cannot walk any longer. She can stand for short periods, but does not have the balance to walk or maneuver well. Most if not all bathroom functions require mobility. To get down to basics, my wife requires assistance for her bathroom functions. (she would probably not approve of this post - but hey, it is what it is) That is the point of this post.

Try taking a wheelchair bound person of the opposite gender to a bathroom when travelling. As I said above - "bathrooming" is a pretty basic need. My wife will signal a need for a stop and then we spend exit after exit, or rest stop after rest stop trying to find a family restroom (single party, oversized, unisex, handicapped equipped restroom becoming available slowly around the world) or a single setup with a lockable door that we can both fit into. We start looking and usually take hours finding a suitable place. It is extraordinarily frustrating to me and her - as well as being a physical challenge for her. I have the utmost respect for those that are installing the family restrooms. They are heaven sent. I just wish every rest stop would have one.

So, next time you are travelling and have the need to use the facilities; when you are able to stop, walk in, do your business, and leave in one stop - be grateful your 401K is all that has taken a hit. Hey, at least you've got your health, and an empty bladder.

DRIVE - originally posted 1/18/2009

Imagine you are out for a drive. You are motoring along. Occasionally you stop to get a bite to eat or to enjoy some of the sites. But mostly you are cruising and taking in the ride.


Suddenly you realize your vehicle is going on it's own. Not too fast, not too slow, but ever moving whether you want it to or not. You realize you are not really even steering the car or choosing the exact direction you are travelling any longer. You run red lights and stop signs. You pass in no passing zones and are passed in others. But, you continue relentlessly forward. There is no reverse.

You would love to just STOP, to pull in somewhere and sit and take in the local flavor. You know, however, the only stopping you will be doing is by crashing or just running out of gas somewhere you don't want to be.

But, maybe moving towards SOMETHING is better than stopping at NOTHING.


Welcome to our life.

A Three Hour Tour, or , Perchance to Drown - originally published 12/2/2008

Imagine you and your spouse, or significant other, are on a nice boat ride called life. You are on this inconceivably large boat in a sea of unimaginable size on a trip of indeterminate length. Once in a while, you go through some beautiful. almost indescribable days where birds sing, wonderful angelic music accompanies you in your daily activities, and everything you want is there before you. Then there are the dark and stormy days where all you can do is hold on to the rail and upchuck your lunch into the water. Most of the days, however, are just a boat ride.


One day your spouse falls overboard, fully clothed, and for no apparent reason. You quickly toss them a line, and say"hold on, I'll get you out!" There is no reason to panic, people fall into the water all the time. Plus, they are a fairly strong swimmer, we will get them out. So, you start pulling on the rope. After pulling and pulling you notice they are not any closer to the boat. You decide you need help.

You go and get the some of the lifeguards that are stationed around the boat. One by one they examine the situation. All of them, after careful thought and deep reflection based on years of training, say "They are in the water. They will surely drown. All we can do is keep them on the line from the boat, and wait." You become more and more agitated and upset. You go and get one lifeguard after another. Some haven't got a clue. All the rest just say, "At some unpredictable time in the future they will drown. Keep them nourished, provide fresh water, and here is a wonder drug in case they get cramps."

You consider going into the water yourself. However, there is no good way to get in, and definitely no way out. So, you sit by the rail and talk to your loved one about the good days where the birds sang, angelic music accompanied you, and all was before you. Meanwhile, it becomes harder and harder for your spouse to keep their head above the water. One of your greatest fears is a storm coming up and causing waves that they surely could not ride out. More and more time is spent just working to keep their head above the water. Meanwhile, you can only sit and watch.

Enjoy your cruise.