Progression

PROGRESSION

Yep! It Sure Does!!! The passage of time with this disease is interesting to note; Whilst I have always known that Parkinsons Disease is progressive, until recently, I don't believe that I have understood this and probably don't now – living an experience is difficult to verbalise .

The things I am observing now within myself move slowly and challengingly forward. I have had this Disease nearly 17years now and medications are working up to a point. I guess I really shouldn't expect anything else, but the 'point' as it were, for me is that I expect myself to be fully functional and anything under that bench mark is unacceptable.

I have increased the Titration of my medication in an effort to prevent the sudden on/off effect. This has worked, as I said to a point.

After a relatively 'normal' day I find that sometimes and increasingly often that it can take hours to get myself into bed.

An old pattern emerges. The sudden 'off' appears – usually when I am close to achieving whatever it is I am aiming at (going to bed, putting the last dish in the dishwasher, getting into or out of the shower) etc. Once my brain starts to shut down to me, and refuses to connect with my body, it is easy and tempting to become overwhelmed by the predicament and end up feeling sorry for myself and dissolving into floods of tears. This I have learned, is no use to Man nor Beast, and it is much more productive to try and focus on being determined, not sad, and try to beat this thing, at it's own game.

Easier said than done of course. However, I have noticed, that the days when I am feeling strong, and allow myself to become more assertive toward the disease, in fact get down right angry with it, I am able to push through the obstacles and achieve what is necessary.

The process that my body undergoes during an 'off' time I find to be quite painful. As my brain shuts down and the signals between brain and body either slowly or rapidly diminish, depending on the circumstances, the rigidity that comes with this can be alarming.
When the dose is used up then I find myself completely frozen or stuck and it is frightening to have that feeling of being completely helpless
Staying emotionally centred in these times is extremely difficult, but not impossible.

I live in a small home with a large busy family. The challenges of negotiating small cramped spaces, with multiple conversations running through the background, and more often than not, being asked a question by Children or Friends as I am attempting to walk through the space without losing balance, is excellent and sometimes death defying practice for the extremely useful skill of Multi Tasking.

I am also aware that within the last 12 or so months, the way in which my speech is affected (Dysarthria) is more challenging. The difficulties with swallowing, which I had not previously encountered are now beginning to present.

Slurred speech is easlily one of the most embarrassing side-effects of this disease. It is also one of the most frustrating!