A Synopsis

I thought some of you might want to know kind of how this started and the progression. I wasn't around when it first started so I'll let my mom or dad fill those details in more, but I'll share what I know.

About four years ago my dad and mom started to notice that dad had some balance problems so they decided it was significant enough to go to the doctor and get it checked out. I'm not sure how long the process took but it was finally decided that he had a condition called Ataxia. Ataxia is much less severe than MSA, so while it was strange to us that dad had a problem, we figured Ataxia wasn't too bad.

About a year after being diagnosed with Ataxia mom and dad decided to go to the Mayo Clinic in Minnesota to get a better diagnosis. So in the summer of 2009 they went to Minnesota and dad went through extensive tests and it was determined that he had MSA. I remember mom and dad telling me not to look it up on the internet because it would just freak us out, so of course the first thing I did was look it up and discover that it is a fatal disease. But, the doctor said dad was doing really good for having it so we all thought of it as more of a minor inconvenience instead of a life altering condition.

So we all started things like normal that fall, I worked with dad in his classroom and as the year went on I started to see first hand how this was affecting him. One of the first changes I noticed was that his handwriting wasn't very easy to read. At the beginning of fall 2009 it was scratchy but legible, now it's very hard to read. He started to have balance issues at work. One time he went to sit down on his chair and all I heard was a big thud! He had fallen, but he was on the ground laughing. He had told his students the year before because his balance issues caused him to stagger sometimes and if someone didn't know he had MSA it might seem as if he was drunk walking around. This past school year, however, he had a couple of falls at work and his balance was getting worse. During basketball season he was beyond exhausted and we all knew it was his last year of coaching.

By the end of the school year he was using a sleep machine at night, Dan at school had installed a document camera so he didn't have to write on the board and all of us at work kept our eye out for him for falling. At home he was getting up at least once a night usually and there were small changes: an extra railing in the bathroom, mom carried his coffee for him so he didn't spill, Uncle Dave reinforced the stairs on the porch. Basically he was at the point where he needed both hands to climb stairs and it was getting harder to do.

This past summer was good for him, I think, he was doing pretty well. He was doing yoga and going to acupuncture and getting more sleep. He seemed to have more energy than he had during the school year and we were all in good spirits. Then I would say about a week or so before school started he started to have sleepless nights and started to look tired. He did his first week at school without students and then his first week with students and he came home every day exhausted.

On the third week of work he started out the week but ended up going home a couple days in a row because he didn't feel well. It was as if someone had flipped a switch and he was on deteriorate. I think we all started freaking out a bit because he had been doing so well prior to this. Dad and mom talked about it and they decided he wouldn't be able to finish out the school year. I also forget to mention that by this point dad's speech had been getting worse and some words are hard to understand from him and he get's tired if he talks too much. About a week or so after he took a medical leave he started to feel better so mom and dad wondered if he had had the flu and if he wasn't really as bad off now as we thought. He's feeling a lot better than when he had the flu, but not well enough to teach.

Now, dad is well enough to go up to the school sometimes and stay connected with the kids. Part of the issue may have been that his sodium was too low, which if untreated could have caused swelling in the brain. So that is a synopsis from what I know, and here are a few quick facts about MSA if you didn't want to read the links:

There are two types: MSA C and MSA P, dad has MSA C, which tends to be less severe than the other. Both are fatal, but those with MSA P seem to deteriorate faster and spend more time with less mobility

Those working on finding a cure for MSA are undecided as to whether it is caused by genetics, environment or both.

The average patient with MSA (typically males over the age of 50) dies within 8-10 years of the first sign of symptoms. This fact right here is why the doctor didn't want us to read about this on the internet and it has been the hardest factor. In school I researched this and wrote a 17 page paper on a way to cure it. I have found certain alternative medicines that sound promising, but no cases of anyone who has MSA being cured by any medicine, traditional or nontraditional.

This fact is a big part of why it makes it so emotional, we have no idea what is going to happen or when or how severe things will be. We don't know if dad will be able to live out his days with mom by themselves or if it will get severe enough that they need to bring in outside help. Dad could live another 10 years or go tomorrow. I hate even seeing those words in print, but it's true. That's why mom had a breakdown because it's such a hard thing to tell people, let alone even try to comprehend. When dad was doing well we could pretend that he was ok, and that MSA was just a mere annoyance not a fatality. Now it is in our face and it's harder to deal with than we anticipated. I can't believe that I am going to lose my dad, and that fills me with an ache that hits me every day. I also know that I am going to lose my mom, not permanently, but someone can't lose their soulmate and be expected to be the same right away, if ever.

I just keep thinking how unfair this all is and I don't care if I'm being selfish, but this shouldn't be happening, not to dad. Of all the people in the world I cannot believe life would choose him and it makes me so angry! I'm angry, that is the stage of grief I am in. I am angry that my dad has MSA and that he can't do all the things he wants to do and feels like a burden at times. I am angry that my mom has to organize a million doctors visits and deal with insurance companies and make a life for herself after dad is gone. I am angry that Clint and I have to go through the rest of our life without our dad and that my children and his won't get to know him as well as they should have. And most of all I'm angry that I can't find something to cure him. Being powerless is a truly soul wrenching feeling.

That being said, my dad is amazing for staying so positive. I have not once seen him loathe in self pity or express anger over this. He takes it all in stride and is our rock, the one staying strong. He's been making jokes about MSA since it all began and I'm sure that will continue. He's always smiling and his positive attitude makes this whole thing so much easier on us. I can't imagine what it would be like if he was depressed or emotionally vacant.

My mom is amazing too, she has to take care of all the medical records, doctors visits, referrals, things like that and make sure dad is taken care of. She also finds herself shifting into the caretaker role and she is taking that on with grace and trying to keep things as normal as possible for dad so he doesn't feel like a patient.

Clint is helping mom and dad navigate the maze of social security and medicare and those applications that he has to do. Without Clint I don't know if mom and dad would have been able to apply for those things without hired help.

So, that was my synopsis and a bit of ranting. Hopefully mom, dad or Clint will fill in the holes of the synopsis and add details if needed.