Normalicy is a fallacy

I have done many posts on either of my two blogs on perpective. One thing this disease (Multiple System Atrophy for those of you just joining and not reading from the beginning) does is redefine normal. Normal depends on your perspective. To a single, childless person a normal morning is entirely different from a person with a spouse and children. A dictionary definition of normal is:

nor·mal   /ˈnɔrməl/ [nawr-muhl]
–adjective
1. conforming to the standard or the common type; usual; not abnormal; regular; natural.


This disease changes normal. This disease changes the definition of a good day. This disease changes everything. (I know a lot of diseases do, I can just comment from where I sit - no disrespect intended)

When I started this blog, it was for a couple of reasons. As you may know or have determined, all the original posts on this blog are reprints from my other blog - Just Some Posts. I wanted to "clean up" the content there and give these posts their own space. I also was (and am) hoping for the addition of a specific audience. I was (and am) looking for people suffering from this disease or people caring for people afflicted with this disease. Although I would love to hear from any and all of you, when I say "looking for" I mean as an audience of readers. One of the real problems with this disease from our perspective is the isolation. You can see from the other blogs, facebook pages, user groups, etc.; that this is the case worldwide. Medical personnel don't know what it is, the symptoms, or much else in a lot of cases. Caregivers and patients are begging for help in dealing with the symptoms and the trouble of getting a diagnosis (and not wanting one when it is this disease). We have yet to meet personally, a patient with the disease except at a convention/meeting in Nashville sponsored by the Shy-Drager Support Group (now the SDS/MSA Support Group - http://www.shy-drager.org/ - wonderful people and organization by the way), over two years ago. It is hard to find information, help, and/or relevant support for this disease and its symptoms. This is improving, but one thing that distresses me about these new support sites is they are so unconnected and disjointed. Everyone and every group is setting up their own sites. I guess I am doing the same here, so I can't be too critical.

My wife and I have been dealing with her symptoms and problems caused by this disease as they arise since 2006. As a problem/symptom would develop - lack of balance, inability to stand, severe tremors that made it impossible to hold silverware, slurring of speech, etc.; we have come up with solutions, or at least solutions that have helped us. We continually change our "normal". One real problem I have with these solutions is by the time we have them worked out, in a lot of cases, they are irrelevant. I tell my wife repeatedly that she is outrunning my fixes. For example, by the time we aquired proper weighted and sized silverware with non-slip plates with edges my wife had become unable to feed herself. Had we known that we would need them, and the products even existed, we would have been better for it. I had hoped this blog would alert some of you at earlier stages of the disease what to expect (at least from what happened to us - I do understand that this disease manifests itself in many different ways - there do however appear to be a lot of similarities) and how we dealt with it. I have tried to do some of this with these posts. I plan to do more with the next post, a complete listing of symptoms my wife has experienced and how we have dealt with it (when we had a "solution").

One other aspect of this disease is the pressure it puts on us with decisions. Small decisions, like what to eat or drink, when and where to go to the bathroom can have literal life and death implications. I don't want to sound overly dramatic, but it is true. One of my wife's real problems throughout this disease has been her syncope (fainting or "passing out"). We have used all the "tricks" and learned lots of our own to help with this, but she still passes out - some days a lot. The bathroom is our real nemesis. There are sometimes when she "goes away" for quite a time. We had an instance recently where she was "out" for 30 minutes and off and on for the better part of an hour in the bathroom. I did not have my cell phone and had no one to assist me or we would have called 911. I could not leave her and could not call. As I finally was able to get her into her wheelchair and out I asked her if she still wanted me to call 911. She was shocked as she did not remember the incident (normally the case) and did not want me to call (and was very glad I did not). As it turned out, we did not need emergency assistance. However, this could have been a life and death decision. Many other seemingly small decisions can be shown after the fact to have been near life and death. The stress involved with these decisions are part of the burden of this awful damned disease.

Like I promised above, my next post will be a recounting of my wife's major symptoms/problems and what we have done/did do to cope.

I am still looking for responses from people suffering from this disease or similar. Please comment or contact me.