One Year Ago Today

I am actually writing this before I have a title, which is unusual for me. I cannot think of what to call it. Here we go.

Today is the one year "anniversary" (not a good word to describe, but...) of my wife's death. (as an aside, I have noticed no one seems to use death, or died. or dead when referring to a family member or loved one. Instead they use passed on, passed away, or some even more flowery synonym or euphemism, but that is probably a post for my other blog. My wife died. The use of a euphemism doesn't diminish the pain or the reality. If I offend anyone, go read another blog. But I digress...)
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I have extremely mixed emotions today, none of them really good. Sadness and grief are a big part of it; but to be fair, guilt is still a large part of what I feel. You might be thinking one thing, but let me explain. Just after my wife's death (I was going to write "passing" but after the above it didn't seem real), I was wracked with guilt and remorse over some of the things I wish I had done, or said. I do not really regret many of the things I did do, thankfully; but I do have regrets. It is like the famous quotes:

Regret for the things we did can be tempered by time; it is regret for the things we did not do that is inconsolable - Sydney J. Harris 

or

When you look back on your life, you'll regret the things you didn't do more than the ones you did. - H. Jackson Brown, Jr.


My wife and I tried to DO as much as we could in the years after her diagnosis. She wanted to go on a cruise with her sister and we did, along with another one a little over a year later. Then we did another one a year and a half later with my youngest daughter. I know she would have rather have done the cruises "whole" and able to partake of more of the activities, but I also know she enjoyed them a LOT. In fact, we might have been better at doing the BIG things (like the cruises, or taking her to Florida) than the smaller things. Those smaller things are what eat at me. It is very sad for me to write this (I will with hope of catharsis), but one of the things she wanted to do was to go to a Russell Stover outlet that is about an hour from here. Now, in the scheme of things, that is not a real difficult request. But, add in the fact of a wheelchair, bathroom issues (see earlier posts), no good wheelchair access at the shopping center the outlet is located in, and my overall exhaustion for most of the time; and it seemed like a HUGE problem to me. I denied her of that trip many times over the months prior to her death. Looking back at it now, I was selfish and foolish. That two hour+ journey might have brought her immeasurable joy for a little effort. There are other regrets similar to that. None big, but that is what makes them so painful.

I wrote some emotional stuff a year ago. Somewhere in there amongst those lines are some words about "doing" and having no regrets. I implore anyone reading this to do what you can if you are faced with a grim future or diagnosis. It actually is pretty good advice for anyone, anytime. I need to heed my own advice, but the healer is always the worst patient.

I will end this with a poem. In the spirit of disclosure, this is actually a one line thing I wrote over forty years ago (before I even met my wife) that I turned into a song for her later. I will not sing for you, but here are the words: (the second verse is chilling to me as I wrote this many, many years ago)

Always will my love for you
remain inside my heart.
No matter where you go
or how long that we're apart.
The promise that I left you with
forever echos in my ears...I'll need you always.

You were gone one lonesome day
and though I'd told myself before
you'd have to leave me soon
you couldn't stay with me much more.
Still I listen for your laugh,
your smile's forever  frozen in my mind...I'll need you always.
                                 "THE"  1971  1982

I cannot envision a time that I will not miss her so very much.
RIP - Carol Condon Poole - 09/30/54 - 05/30/11

A new forum - the timeline and setup

I thought I would do this post to keep my other blog http://www.justsomeposts.blogspot.com/ "clean" with my ridiculous thoughts and political/social commentary. This blog will be my thoughts and comments on my and my wife's journey with her disease - multiple system atrophy. If you are not familiar with this disease, don't feel bad. We still have to explain it to doctors, nurses and medical staff most places we go. Google it, you will find good information out there. Here is the official definition from the National Institutes of Health:

Multiple System Atrophy (MSA) is a progressive neurodegenerative disorder characterized by symptoms of autonomic nervous system failurs such as fainting spells and bladder control problems, combined with motor control symptoms such as tremor, rigidity, and loss of motor coordination. MSA affects both men and women primarily in their 50s.

There is no cure for MSA. Currently, there are no treatments to delay the progress of neurodegeneration in the brain. But there are treatments to help people cope with some of the more disabling symptoms of MSA.

The disease tends to advance rapidly over the course of 9 to 10 years, with progressive loss of motor skills, eventual confinement to bed, and death. There is no remission from the disease. There is currently no cure.


Why "Living with a Snow(wo)man" you may ask? I liken this disease to a "melting" of the individual. Trying to hang on to the loved one you knew is akin to trying to keep a snowman (or snowwoman in our case) whole. The disease is insidious. Watching the progress is like watching a snowman melt. Hence the title.



This blog will be mostly for me. I will try to not be too morbid or self-serving, but hey - MY BLOG! If you want to follow along, you are welcomed. If there are things you like or dislike, tell me. If you think I should not be doing it, or hate it; don't read it. Again - MY BLOG. One thing I am NOT looking for is pity or empathy for me. Although this disease is a trial for me and affects every aspect of my life (whether as the elephant in the room, or just the day to day scheduling), the burden on me is nothing compared to the burden on my wife. If you need to offer pity, empathy, sorrow, prayers, or tears; offer them to her. She is facing the disease with a character, bravery, and dignity that I probably could not muster on a bet.



After this opening, the first posts will be "reprints" of the posts I have done on my other blog. Some of them may not be "clean" posts just about the disease. The new posts will be that, but I want a chronicle of where we've been. First a timeline and an update of where we are today.



Sept 2005 - my wife called me at work and told me she had felt ill trying to get in the door of our house. She said she could not get the key to work and felt disoriented and dizzy. I thought she had had a "mini-stroke"(TIA) and told her to take an aspirin, a vitamin E, and to sit down and wait for me. I went home and took her to the ER. After hours of testing, they determined that she may indeed have had an transient ischemic event. We were told to go home and rest. More testing followed. We are not sure what if any relationship this event had in her present state, but we always start our timeline here when we talk to doctors (and there have been a LOT of those!).

My wife for years and years had told me she would get "dizzy" when walking from a parking lot in the daytime into a store or mall. We thought nothing of it, but mentioned it to the doctor when she had her suspected TIA. During the months following her TIA she would get dizzy and light-headed upon standing, especially after sitting a long time. Going from an air conditioned space (a car particularly) to a hot parking lot was especially bad. She then started experiencing syncope (fainting) upon standing or exertion. She started going to doctors. This is all in the early months of 2006. She was still working full time as a registered nurse, driving, cooking, and otherwise leading a fairly normal life. She just passed out from time to time. She went to cardiologists, endocrinologists, and neurologists; as well as her family doctor. After tests and tests and tests, where she was pronounced a "very healthy woman except that you have this syncope going on", we found a doctor that gave her a diagnosis of MSA in early 2007. However I left out the progression of symptoms.

During 2006 her fainting spells progressively got worse. She could tell they were coming on most of the time, but could not do anything to prevent them. She passed out in the parking lot walking into work a few times. They never told her directly, but we heard she was suspected of being an alcoholic or drug addict by many. She suffered from a loss of coordination as well as some vision problems. By June of 2006 she was out of work. She was told that she was too much of a liability. That was a big milestone for her. Losing one's profession is to lose one's self in our society, to a point. She was using a cane to help with her balance by mid to late 2006. I was accompanying her to the doctors now, as her driving was not as good; and our concern that something serious was going on had definitely set in. We went to many, many doctors; none who could offer any answers.

At UNC Hospitals in February of 2007 (my wife says January, but I am writing this and I remember February) Dr. Georgia Lea gave us the official diagnosis of MSA. I had reached that conclusion from studies on the internet and we had discussed it some in general; but unless you have had it happen to you, you cannot imagine getting a diagnosis like that. A death sentence - no cure, no treatment, no hope. That was a rough day. She made phone calls and we met with our kids and told them. A lot of tears were shed that day.

Back to my wife's symptoms. She had developed Parkinson's like tremors during the latter months of 2006 and into 2007. MSA is considered one of the class of diseases sometimes called "Parkinson's Plus" (it's the "plus" that gets you) and this is part of the progression of the disease.
Treatment with Carbidopa/Levadopa started to help with these. She remains on the drug today.
There are also some drugs that can be taken to help with the syncope. The problem with her is if there was a negative side effect from a drug, she seemed to get it. But, through study and experience we became good a mitigating if not stopping the fainting spells. During this time her handwriting became very small and somewhat illegible. This too is a common symptom. Her speech has also suffered with some slurring occurring by this time.

Sometime in early to mid 2007 she went to a walker, or more accurately - a rollator (a walker with wheel instead of skids). She was till moving pretty well, but needed it for balance - which was deteriorating. By December of 2007 she went to using a wheelchair most of the time. By early 2008, the wheelchair was full-time. The symptoms mentioned above were all still around, and more pronounced. Her writing was almost illegible even to her. She would write something down and days later have no idea what it said. During 2008 she was using a powerchair for getting out and about some as well as the wheelchair.

In 2009, the symptoms continued to worsen. Her speech was slurring more and more. Phone conversations, even with those that know her became more difficult. The ability to take steps is waining as her reliance on the chair increases. The tremors are more pronounced and make eating difficult. During this time, she went from needing her food cut up to needing help getting it on to her silverware, to needing help eating.

Today, my wife is in her wheelchair, lift chair, or bed all the time. We do get out some, in fact we did a cruise last October. Her ability to write is pretty much gone. Her ability to eat unaided is pretty much gone. Her ability to hold a conversation on the phone is pretty much gone. Her ability to type is pretty much gone. Her tremors are very pronounced and annoying. Her balance is non-existent. You get the picture.

Now for the good(?). Her ability to laugh is still there. Her ability to make me laugh is still there. We try to have a good laugh every day. I do my best to make her laugh as she does me. Her mind is still there (that can be good and bad, she definitely realizes what she has lost and where she is headed). Her memory is still better than mine on certain things. The love she has for her children, grandchildren, and family is boundless. She is one of the most selfless individuals I have ever known. Her concern for others, especially her family far outweighs her concern for herself. I am reminded every day why I married her. I am reminded every day why this disease is a living hell for both of us.

On with the show. As I said the next posts will be "reprints" of posts I have made on my wife and her disease on my other blog.