Wednesday, September 16, 2009

Life's Changes

My wife and I have been busy the last 10 days starting the next phase of our lives together. Others who know me or see me on a daily basis don't really notice the slow downward slide that I am in, but my wife of 36+ years does. She knows that I get much more tired, with little or no real exertion. She down plays it, but she sees it just the same. She notices my mental confusion, my inability to make decisions, and just how slow I move. Most of all, she understands, but also quietly observes my anger, rage, and frustration at life as it is. The folks that work with me, see me at my best, after a long night's sleep, a full stomach, and with a full dose of meds in me. They think all is well, and I am glad for that. But in the evening, when I have problems talking, or when I choke on a raw carrot because I aspirate, she knows.
So, we have begun our transformation into a simpler life style. We have both submitted our retirement papers. Hers for this December, and mine for a Civil Service Disability retirement, which has to be approved by OPM. Last week, We sold her beloved VW Beetle, "Sonshine". We also traded our Toyota Van, which I truly liked, for a new Subaru Forester. Why, because it is easier for my wife to drive, and more and more, the driving duties will fall to her. And finally, we are placing our home on the market to facilitate moving into an "over 55" apartment. Why, because the burden of keeping a house up, mowing the lawn, fixing the most simple mechanical or electric item in the house has become overwhelming to me. Physically, it totally exhausts me to mow the lawn. Normally, i do the front yard one day and the back the next. Now we don't have a big yard. But I completely soak everything I am wearing in sweat doing the yard, and it takes two hours for me to recover. I am not complaining, it is just a fact of life.
Another reason we are making the move to simplify our lives it a quality of life issue. We want to still have fun! We want to spend our energies traveling, visiting family and friends, and doing things that interest us, when we want to do them. "Things" can weigh you down. Right now, we want freedom.
Again, don't worry, I actually feel better having these issues removed from our plate. For instance; I waxed the new car last weekend. OK, I used a new polymer product that is easy on, easy off. And I used my electric buffer to buff the "Wax". But the point is, when I had two cars to care for, I was overwhelmed by the task of cleaning two car, so I did not do any. Sound stupid? Maybe to you, ,but to me it was the way it was. So no, I feel that I can accomplish my goal, and I feel motivated to accomplish it. It did take me two days to do the car, but it does look good.
The real point is, my wife and I have to learn how to best live, within the limitations of Parkinson's and Dementia, as these diseases progress. Yes, I suppose I could expend energy fighting to do the things I did before. But all I will do is end up tired and frustrated. I choose to expend my energy on the things I enjoy and not he things that cause me issues. Again, I don't think I am being selfish, just realistic. And my wife agrees.

Thursday, September 3, 2009

Doctor's Feelings.

Today, I had my usual 4 month meeting with my Neurologist. She is an exceptional doctor and has taken great care of me. She always spends a great deal of time explaining things to me and answering my questions. She has been courteous and caring, at least until today. Now I will admit that anyone can have an off day, be a little down, bothered by what someone else said, or just grumpy. But, today my Neurologist just wasn't herself. Since I have become ultra-sensative in recent months, I assume it is something I did. Yes, I know what the word ASSUME is an acronym for. But, just the same, did I do something wrong?

I will admit, I spend a lot of time reading WEB info on my medical problems. I believe I should be proactive about my medical condition, not passive. So, I read WEBMD, and a web site called Patients Like Me, and anything I can get my hands on including books and articles. I read about the drugs, new and old, tests in development, everything. And, when I go to see my Neurologist, I ask HER the questions about what I have learned. Why do I ask, because SHE is my Doctor. The one with the Real Degree who is taking care of me. Now, I do everything she tells me to do, and nothing the web articles tell me to do, unless she recommends it.

Another asset I have, at least until today I thought it was an asset, is a telephone nurse who is from my insurance company. She calls me, or I call her, on a regular basis, to discuss my progress, my meds, and what I am going to discuss with the doctor. This telephone nurse does not talk to my doctor, only to me. In any case, this telephone nurse recommended I ask the doctor if I might have Lewy Body Dementia as a particular type of dementia. So, being the fool that I am, I wrote that question on my usual list of complaints, observations, and symptoms. When my Neurologist read that on my list her attitude immediately changed. She became curt, short, and almost angry with me. I can only deduce that she does not like second opinions or someone second guessing her.

I have learned something today, I will never ask another question, recommended by another medical person again. Maybe I will just take my pills and be quiet.