Just looking for some shade

I know I have not posted in over six weeks. I mentioned a while back that this was harder than I imagined when I started. In some ways it is probably different than you may imagine. It is not that I have nothing to say. In most cases it is that I have too much to say. But out of commitment to the four people and a frog that read this, I thought I would write something.

The title of this blog was one of those things that came from passion of the moment. My wife was having a particularly bad couple of days and I told her "you are like a snowman - melting right in front of my eyes." Later that month was when I started this blog. Did you ever try to save snow? I have never seen it done. Just the act of touching it, changes it. You can put a container of snow into your freezer and when you go to get it out it is ice. If you don't put it in the freezer, it is water - in a very short time. My wife is a bit different. She is still her. As I have said before, we still joke and laugh - we just have to work a bit harder at it, and we may stop a bit sooner. She is still the wonderful person I fell in love with almost forty years ago. Her physcial self is changing. This damned disease is wreaking havoc on her ability to do most anything. It is like the snowman in the sun. It may be below freezing, but if the sun hits the snowman - it melts a bit. It changes. There is not much you can do about it.

I have mentioned the other "joys" of this disease. MSA is a beast. It not only causes problems on its own; due to the fact it affects the brain it calls in a lot of other "helpers" to add to the challenges. I know I have written about the spinal torticollis (cervical dystonia) that my wife has to deal with. This is a fun disease all on its own. When partnered up with MSA, it is a real joy. We are constantly picking my wifes head up now. She is constantly leaning forward. It makes almost any activity a real challenge.

For over the past month my wife has had to deal with another alphabet disease - TMJ. Temporomandibular joint (TMJ) is actually the name of the jaw joint. However, it had become synonymous with the disorder of the joint that causes pain and discomfort when opening or closing the jaw - chewing for example. This pain has been so bad that she has not eaten solid food for over six weeks, except to experiment to see if it is better (which it has not been). We are slowly becoming experts on the world of liquid nourishment. Bless the Ensure, Boost, protein powder, V8 Splash, Mott's manufacturers. I have also become quite proficient at making a protein shake that can be ingested without gagging.

Again, I compare this disease to the melting of a snowman. The advance of the disease is relentless. The complications are trying. The challenges to everyday living are monumental. What we both would not give for just one day of "normal" - old normal. Like it was five years ago before this disease started dominating our lives. Although the end of that one day would be hell for both of us. In fact, knowing how the day would end would probably make it hell itself.

Oh well, we will just keep looking for shade.

Again I mention - if you or a loved one is dealing with this disease; we would love to hear from you. One of the other characterics of this disease versus most others is you almost never meet anyone else with it. There just are not enough people afflicted (thankfully) to form much of a community. That makes the disease worse in that you are facing it alone and without information or much support. Please contact us by posting here. or emailing me - gumbypoole@aol.com