Friday, October 5, 2012

Holding on to today, sort of

I have done quite a bit of research on LBD, Alzheimer's, and other dementias.  There are many articles on how the diseases effect the patient but nothing written about how the patient effects the disease!   For instance, on the LBDA.org sight, I read about a study that arrived at the conclusion that prescribing Arecept and Namenda early in the progression of LBD greatly slows the progression of the memory loss component of the disease.  And WEBMD states that the life expectancy of an individual diagnosed with LBD is two to twenty years!  That's a large span and I wonder how the attitude of the patient and his or her family and friends effect the patient's life expectancy.

I have tried to maintain a very positive attitude but I find that now, four years or so into my journey I am having more and more trouble keeping myself on an even keel.  The effects of LBD are impacting me even more each day.  Loss of memory, muscle pain, lack of energy, muscle weakness, unstable on my feet, shaking when I exert myself, exhaustion, well you get the idea,  These issues make it difficult to keep a positive attitude because I know they will only get worse.   And what is even worse is that I know Lewy has some new negative issues just around the corner.  I know, because I have had a few run ins with a few of those issues!  What issues, incontinence, constipation, vision issues, and fear.  You can see how these issues can deflate a positive attitude.  Just the same, I want to remain positive and engaged.

Another issues is my recent emotional sensitivity.  I have written before about this, but it continues to impact me.  I see insults and rebukes where there are none.  Either that or I am being picked on and I never saw it before.  These issues also linger on.  All of these issues combine to cause me to withdraw and be negative.

Maybe the disease effects the attitude and not the other way around!  I really don't know and now, after putting this all in print, I am even more confused.  During the time I have been writing this, my emotions have completely shifted and I am now depressed, withdrawn, and upset.  Maybe I should just let this happen instead of trying to effect the disease with my attitude.  Maybe I will just go to bed.


1 comment:

  1. Don, of all things I have ever known about you, the one thing I know of as fact is that Don Dolence is not a quitter. You wrote recently about one of our co-workers who passed away and how he was one of the TOUGH GUYS. You wrote how he remained positive and how that helped not only himself but everyone around him for so very long. Don, if ever there were anything that we all knew and continue to know that we can depend on it is the smile and the positive attitude of one of the toughest guys any of us has ever known...Don Dolence. You have an attitude that I would pay money to have. You've always had a confidence in your life and your ability to adapt for which I would pay money for only a half-portion. Finally, you have a strength in your Christian life and a faith in your God that would make many other Christians, myself included, jealous beyond measure. You ask if the patient makes a difference in the disease versus the disease making the difference in the patient; I say yes. An emphatic, "Yes!" Many, probably most, would have found themselves defeated after receiving your diagnosis. But not Don Dolence. Because Don Dolence does not just give up. There will be days that will be worse than others; that is one of life's challenges. Regretfully, life has given you an additional challenge. But, I think that God allowed you, Don Dolence, to receive that challenge because he knew that if anyone could handle it and not just survive it but continue to lead a life and sing the Lord's blessings, it would be you. Never, not ever, do you need to believe that it is only the disease effecting the patient, not the patient effecting the disease. You continue to shine a light on this illness that I'm sure many of us would have never seen had it not been for you and your dogged determination to chronicle your life, your struggles, and God's ability to help bring you through it all. I pray that God's Grace will continue to shine upon you as you continue to meet new "challenges" the way that I've always known you to do...head-on.

    Your friend,
    Critter

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